Disney on Ice 2012

Well I sort of got a little disorganized in my posts.  This one actually belongs a bit back, during the March Break.  On Thursday, March 15th after we went to the Gage Park Tropical Greenhouse we headed over to Copps Coliseum to see Disney on Ice.  Last year we went to see Disney on Ice, but it was not the most successful trip for Matthew as he was scared most of the time and was not feeling well.  So we thought we’d give it a try again this year.  He right away knew what we were talking about when we said we were going to Disney on Ice and was excited to go … no leftover fear from last year.  He has also outgrown his extreme fear during videos/movies so that helped as well.  He was super excited that we were going with Aiden again. 

This year even Rob was going to attend.  After just completing several major papers we decided it would be good for him to have an afternoon off.  But that was not to happen.  Instead he took the whole day off … to stay in bed and try recuperate from the fevers, chills, headache, and cough that he had.   He ended up being in bed for several more days, until Monday he finally ended up on antibiotics for pneumonia and/or bronchitis (they didn’t do x-rays to see which it was since the treatment is the same).

Waiting for the show to begin

The show begins

Intently watching

Various pictures from the show

   

Grand Finale. 

This show was better then last years. The kids enjoyed it. I think this will be our last time attending. They are all somewhat similar and they’ve seen it now.

After the show we went out for supper at King’s Buffet.    My mom and sister Val met us there.

The kids watching the fish

 

Since it just so happened to be Val’s birthday we had the staff come out and sing to her (and bring her a free mug)

Naoh trying to take in the clapping and singing and candle

Matthew was quite upset that we were not going to MacDonald’s for supper.  He wanted to go to a “play place”.  We insisted he would enjoy eating here but he was not convinced.  He has been to King's Buffet before so he was not all that interested in the food options and just wanted to go somewhere to play with Aiden.  Well for someone who didn’t want to go here for supper he sure had a grand ole time.  We gave Matthew free reigns to eat what he wanted.  “I’m allowed to be bad” was what we heard repeatedly.  Previously we would be selective in what he can have, allow certain things in the diet to be relaxed but limited how much he could inhale of various things and trying to steer him in the right direction.  The only restriction he had for this night was no rice, but since he didn’t ask for anything rice it was pretty much free reign for him.  He stated right away “I want wheat”.  I’m not so sure he really realizes what that means, but he knows he can’t have wheat and it effects a lot of what he eats.  So he chose pizza (which also has milk) and quite enjoyed it, along with various chicken balls and shrimp and meats and fries.  He had quite the plate full and ate most of it before he headed off for the dessert section and enjoyed several plates of fruit and 3 cupcakes … he was just thrilled over the cupcakes.  Inwardly I cringed at the thought of what kind of kid I would deal with the next day but to see the delight on his face was quite lovely. 

We were surprised the next day when we did not have any major emotional/attitude symptoms.  We did see the effects of the meal over the next few days in his stools, but even that was not too major.   It’s nice to be able to allow those occasional “treats”. For the next week he would proudly tell people about how he went to Disney on Ice and then “I was bad” … a little explaining was necessary for that one.  I don’t usually let me kids go around bragging about how bad they were :)  With time we hope that we can open Matthew’s world up a bit more … but overall he has a pretty good variety of food and since everything is GF at home it’s usually only an issue when we go out that he’s restricted because of wheat.  Previously we allowed this to slip when we went out, but we have come to realize that this caused problems when done too often.  So we keep a tight reign on it and this was the first time in a long time that Matthew had wheat.  We have slowly been introducing milk into his diet, small amounts in recipes and so far so good.  A rice trial some time ago showed us that rice is still an issue for him … no rice and no wheat makes pasta a hard option in our house and potatoes a common food (one he does not like)  But overall the diet has a good amount of variety and he has learned that there are times in life you just have to eat things even though you don’t really enjoy them.

Fructose Malabsorption

In the past I have spoken a bit about Fructose Malabsorption on this blog (see here for previous posts).  I haven’t talked about it for a couple years, but this does not mean that we have not still been dealing with this issue.   We have actually been dealing with it much more in the past couple years as it has made a major change in our way of eating. With four of us in the house having FM it’s hard to get away from it.  Previously we only lightly followed the FM diet, thinking that we were not a severe case, but now we have discovered that we have issues with fructans (chains of fructose) and have a much more strict diet as far as wheat and brown rice goes.  

In my last post about FM I was talking about Matthew and how we were struggling to figure him out but finally making progress.  Pulling rice out of his diet was the big change and it took a few months for his body to heal from the rice he had been eating (all the time) before that.  We now realize that this is because his diet was gluten free and the majority of gluten free foods are made with brown rice, as well as his rice milk, also made of brown rice.  Brown rice has fructans in it and we cannot handle fructans.  It took some time before we pulled Matthew completely off wheat.  We kept him on a lower amount of wheat for a year or so thinking that this was okay for him, but always struggling to figure out what would cause a flair up … only to finally clue in that he needs to be wheat-free.  Wheat-free has made a huge difference for all of us and while we hate not being able to have wheat, we do love how much better we feel.

In the past few years I’ve done a lot of reading about FM and learned a lot.  I’m still lost at times, as FM is not an easy diet to follow since there is no consistency on what works as everyone is so very different in their sensitiveness.   I know what the data and information about FM says, but also know that this doesn’t work for everyone.  We have worked through the challenges of this diet and we still have our struggles, but we have been able to find a more happy balance.  I love my food and I love being able to eat whatever I please so I do have trouble sticking to the diet, but I do not miss the days of constant brain fog, tiredness, fatigue, body aches and so avoiding these helps me to keep on track a bit more.

Since there is lots to say about FM and I know what a struggle it is for those who are trying to figure it out I decided to take the information that I have read and gathered and put it together so others can benefit from what I have had to figure out.  I continue to regularly get comments and e-mails with regards to FM and my previous posts about it and thought it might be wise to update my information and dedicate some more time to it.  So while I haven’t always been completely faithful to keeping up with this blog I do have a bit of an excuse since I’ve been trying to put together a new blog at the same time …. of course, one wonders how I plan to keep up with two blogs if I can’t even keep up with one.

For those who have stumbled across this blog looking for information about fructose malabsorption please check out my blog dedicated to this topic at:

Life with Fructose Malabsorption

The information on this blog is simply information that I have gathered over the past couple years or learned through trial and error, it is what works for our family but is not necessarily what works for others with FM since all are very different.  I by no means am an expert or specialist with regards to FM but I am simply putting together the information I have learned so that hopefully others can benefit from it

Big Long Matthew Babble

It has been some time since I’ve talk about any of the health issues in the household. I was just running through some of the older posts on Matthew and thinking about what has changed in the last months, but really I didn’t see a huge amount of change.

Our move to the “cottage” this past summer did indeed perk Matthew up as I had hoped, but it wasn’t long lasted and before we knew it he discovered that the “cottage” also had a TV … and well, “bobbys” (bottles) are there too. I think it took a couple weeks before he went back to his more whiny, clingy self … but regardless, overall during the summer he did pretty good.

During the summer months we came to the conclusion that indeed rice was not a good thing for him. We had attempted to give it to him occasionally – once a week – but one meal I realized I had forgotten to prepare something for Matthew and so when we sat down I lazily decided to just give him rice again … making it two days in a row. Wow, did we ever see a different kid for the next couple days. He has not touched rice since.

We also continue to keep him off of milk and soy. Recently I’ve become a bit more relaxed in this area allowing these items if they are nearly the end of the ingredients list. I have also relaxed a bit more on the fructose diet, allowing him two fruits a day and he’s been taking in more sugar per day. Until this past week this seemed to be going okay.

When I say okay I do not mean we have a normal, content child. I mean we have an “okay” kid. Matthew simply is not the happiest kid on the planet, he’s a bit of suck and he whines relatively easy. Thankfully he is no longer hanging off my leg and crying most of the day … but I do need to take the time out several times a day to try and entertain him or distract him from his whining, crying, complaining or whatever it is. Matthew continues to low to TV and I’m afraid that I have given into him far to much in this area. I keep trying to convince myself it’s for my sanity, and really it is, but I still hate it when people use the TV as a babysitter … and really, that’s what I’m doing. At this time Matthew’s absolutely favourite show is Zaboomofoo … and he’d be content to sit there for the 12 hours he’s awake each day and watch it. This is absolutely not going to happen and so he gets a couple hours of Zaboomofoo per day and then if he continues to drive me insane with his TV request he watches Signing Time. If he’s going to watch that much TV in a day it’s going to be educational. And indeed it is, for he knows quite a bit of sign language. I think he would know more if he had more fine motor skills. He attempts many of them and the position of his hand tells you that he knows what it’s suppose to be, but he’s not able to make the right movement so you would not be able to understand him. I guess it’s sort of like learning to talk. At first mom and dad understand the child the best as what they say is not always the clearest or is spoken in a bit of a “code language” but as time goes on they develop the skill to speak clearly and in sentences. The rest of the family is also learning sign language so as long as we keep showing him the videos and doing the proper signs he will eventually learn the correct way.

So … I was saying how overall Matthew is just simply not the most content child. I must say that in the last couple months I see more of attitude and character in this discontent mannerism then the previous pain or discomfort that we felt we were seeing. So we have somewhat just accept that Matthew needs a bit more attention and “maintenance” care :)

When it comes to eating we have seen major improvements and are quite happy with where this has gone. Matthew loves porridge and so I must always have that bowl of porridge ready shortly after he wakes in the morning. We have discovered that some of Matthew’s attitude and behavior issues stem from hunger … okay, a lot of it does. Like most children he becomes irritable, miserable, demanding, loud, complaining, etc when he’s hungry. The problem is this happens very quickly with him. So I need to be on the ball and get that bowl of porridge in him quite quickly in the morning … but not to quickly as he also does not wake well and needs his wake-up time. Sometimes it’s a rough start to the day getting him to eat that porridge, but we all know we gotta get through his crying and attitude and get that food in him or the day is only going to get worse from there on in. But most of the time he inhales that bowl of porridge (a whole full bowl – ½ cup dry oatmeal) in a matter of minutes. We used to make a careful point of rotating all his meals but when it comes to breakfast I still to porridge now as that one I can get in him almost every time without any problems … he loves it!!

When it came to eating the rest of the day didn’t go quite as well until recently. No matter what I tried he simply would not eat lunch … or wouldn’t eat it until about 3pm (after his nap) and supper was so-so. Recently he has begun to show signs of the genes he carries. He wants to eat all day long. He eats his porridge and half an hour later is asking for fruit (okay, he’s almost always asking for fruit) and then a bit later he’s back asking for more fruit, or maybe a cookie. He’s been doing this for a couple weeks, and he eats most of the morning. He does not have a big lunch, but even that I can get a small amount of lunch-like food (soup) into him. He naps and then wakes up at snack time and usually has another “snack” before supper (or any early supper) and then snack shortly before bedtime.

This gene comes from his mother who also likes to nibble all day long. Thankfully I am able to without showing the signs of it … although lately it’s beginning to show that middle age has hit and I really must watch what I nibble at if I want to be able to put the same size pants on each day. Rebecca also suffers from this issue. She is always hungry and is like a clock when it comes to needing her snacks. If she misses a snack or is late for a meal she acts like she’s about to die as she’s absolutely starving and her stomach hurts, etc. This past year I have learned that this seems to be a more common problem with FM (Fructose Malabsorption) so I guess we’ll blame it on that … whatever it is it can be somewhat annoying. You would think that we can just be trained to eat at certain times … and in some ways we are, but we need to eat for sure every couple hours. I don’t find this totally abnormal to eat that often, you have meals and snacks inbetween, but Matthew has taken this issue to the extreme. What I also know from previous years of not understand this need to eat often is that if you don’t eat when you stomach initially says it needs food you begin to feel sick and then you feel sick enough that you don’t want to eat (like you have a stomach flu) and it just gets worse from there.

With Matthew’s recent eating habit we have begun to wonder whether he too suffers from this need to constantly eat and whether previously he had been in the stage where he felt too sick to eat (a very hard stage to get out of). Who knows, we can never understand this kid. What we do know is that we let him eat frequently now and he’s been eating very well and in large amounts … really some days he’s quite the piggy. It’s wonderful to see. I don’t like that he doesn’t have structured meals, but for now he is eating without battles and this sure makes life a lot easier.

We do struggle with getting a healthy balance in him though. Although he will eat now he can be quite picky about what he will eat and one thing he does not like to eat is vegetables and bread. He has soup for lunch each day and I fill it with small grated pieces of veggies to get some veggies in him. The only veggies he really eats willingly and regularly are potatoes, squash and carrots ... he just doesn't like his "greens". He can also be quite determined on want a specific food at a specific time and so even though he will now eat we do still have the battles of teaching him that he doesn't always get what he wants when he wants.

So now we treat Matthew as if he has a milk, soy and rice intolerance as well as fructose malabsorption. For some time we have felt that this is working … actually for a very long time and we’ve relaxed … I think maybe a bit too much because the last week is showing a bloated belly and a very unhappy child again who is always asking for his “bobby” (bottle) again. This is difficult to deal with because we have been able to train him that bottles are just for bedtime, he gets them when he goes to bed and a small one when he wakes up as he always wakes up a bear and needs that to give him a jump start. The last few days he’s been driving me nuts with his constant asking for his “bobby” … it doesn’t help that right now I just don’t have the time to stop for long to distract him, so my short little distraction games or ideas don’t seem to work either … but we have finally taught him he doesn’t need bottles all day long and so I’m not going to give in now.

In general Matthew has come a long ways in the last couple months and until recently we were very happy with what we were seeing. We still have our doubts about whether this is just food related, but for now we keep at this diet (and tighten the reigns a bit again) and hope that with each passing month it will get better, clear and easier. In all other aspects Matthew is growing up extremely quickly and shows no other concerns. He continues to gain weight and grow, he is active and his speech is very good. He impresses us with the size of his vocabulary and what he knows and remembers. When he does play he can be very creative and a lot of fun.

Good-bye Wheat :(

I'm so sad to have to say NO to wheat for Matthew again. I'm not sure for how long, but for the time being it's back out of the diet.

I guess I was wrong about Matthew's miserableness being from a cold. He had two days of a bit more runny nose and cough and then it disappeared as quick as it came with no further issues. Maybe it was just some extra phlegm from the cold he was already fighting, otherwise it was one super fast and mild cold.

But the miserable boy continued through last week and then he stopped eating again. Wow I quickly realized how one gets used to a child who just sits and eats on his own, all by himself with no coaxing ... it was kind of nice to actually get to eat my meals warm for a bit. We are back to the bribing game ... hold up a piece of fruit until he takes a bite of his main meal. Even this has not always been successful. He is back to wanting bottles all the time and wanting to watch TV all the time ... two things that always come with his miserable stages.

I told myself not to get too excited that the good times probably wouldn't last ... but again I'm disappointed. Thankfully he seems to be picking up a bit where at least the bribing game is now working more often. I'm also thankful for the warmer weather as the great-outdoors also helps to keep him busy and make him happy for a bit.

Do the wheat and the downhill trend go together? No idea ... we're hoping not, but since we dont know we have to take the wheat back out again. If the wheat is the problem this means he should start to pick up and act better with it out of his diet ... so we should be seeing improvement by now. The last few days have been busy so it's hard to tell how he's doing as he enjoys being busy and going out and when we're home we're not sure if it's just overtiredness/lack of routine that throws him off and makes him a bit more cranky. Regardless the eating has not really picked up.

So now we wait for the happy boy to reappear and then try the wheat again. I remain optimistic that he will be able to handle it as he had no obvious/immediate reactions when he did eat it. Unfortunately behavioural and depression issues are side effects of Fructose Malabsorption, so we have to bear this in mind even though there were no obvious GI issues from the wheat. We'll just slowly keep at it

So Far, So Good!!

One week into our wheat trial and all seems good thus far ... yahhh!!! I'm so excited. We are still only giving him one serving of wheat every third day (so three trials thus far), but this seems to be tolerated fine so shortly we will be bumping it up to every other day.

We did have a couple down days where he was more cranky and clingy and went back to his morning naps (if he's real miserable I usually try put him to bed in the morning because he's just driving me insane). But after two miserable days a cold/cough set in. Since he was still getting over the last cold/runny nose I may not have noticed this new cold set in the first couple days, but after two miserable days he began a nice barky cough. So hopefully that is the cause of his down days and all is still good.

Regardless he did not react with any obvious symptoms of the bowel system, so things look pretty good. This means we no longer have to be so particular and panic if he picks up something with wheat in it. We can now allow him to eat things that have wheat further down the ingredients list and hopefully in due time he can eat wheat regularly. For now I just have to be patient and not rush the wheat trials as fructans is still a big concern.

Peek-A-Boo. I took out the camera to take a picture of Matthew and he immediately had to ham it up and began to play peek-a-boo. The reason I wanted to take a picture of him was because how he looked reminded me of his dear brother, James. He had bright red cheeks and sticky sweaty hair that was a mess and sticking out here and there. Thankfully Matthew does not look sick here as was the case when James would looked like this -the picture below is an extreme as he had just gotten out of ICU there, so that's several days of unwashed hair. The picture of Matthew ended up not really showing his red cheeks or sticky hair all that well ... instead it shows a happy little guy having fun ... but I'll still remember why I took the picture.

Oats, Barley .... and .... WHEAT!?!?

I was just reading back to the last time I talked about Matthew's health on here (see here) ... wow, that's a long time ago. I didn't realize I hadn't said anything for a that long of a period of time. But that's okay, because it would just have been complaining if I had. The good period that I talked about in the Decmeber post lasted for a whole months ... the longest we had ever seen Matthew do so well. We were getting quite confident by the end of the month that the fructose had been the problem and we had a cured boy ... we were wrong.

The month of January brought the "old/normal" Matthew back. A cold brought him down and he stayed down. For the next few months we seen ups and downs. We enjoyed the good times and prayed for the good times during the bad times. We were often perplexed how a child could have two such drastically different characters. The only thing we could see was that there was a relationship between food and the attitudes. When happy he ate well, when miserable he didn't eat. I gave up being too concerned about his eating habits. We tried our best to feed him, gave him options, bribed him with fruit (the only thing he likes) and let him snack throughout the day. We tried not to stress about it and let him decide when he wanted to eat and when not. We knew that if we couldn't get him to eat while bribing him with fruit we might as well give up because there was no way he was going to eat. The other thing that perplexed us greatly was that he gained no weight during the month that he ate like crazy .. or the next couple months. For three months his weight stayed the same, then suddenly one week he packs on 12oz (without eating a whole lot) ... only to lose it again a week later from another illness :( When he's eating fine I don't care how much he weighs or where he stands on the charts, but when he's not eating good it starts to get to me that I'll never get the kid to gain weight and stay on track.

At the same time we also dealt with a very bloated tummy almost all the time. We couldn't seem to track the cause of this, or even see a relationship in the size of his tummy to how he was acting ... it just left us wondering. We took him off of soy milk for a period of time and ta-da, bloated tummy gone ... for about 4 days ... and suddenly reappears, just not as bad. So frustrating. Then he became sick and refused to touch any food at all. On top of his lack of oral eating he started decreasing the amount he was drinking. We had him on rice milk and after one week of not touching solids and not drinking well we had no choice but to put him back on soy formula so he could get better nutrition and most importantly protein and more fat. We watched his belly, but it never got as bloated as it used to be ... who knows what the cause was, we don't!! So he remains on his soy formula which is mixed with rice milk to lower the sugar content but still give as much nutrients as necessary.

Thankfully since the beginning of April Matthew has been doing good. I haven't had him weighed for a month now and I'm really not concerned what the scale says anymore. I just want to see him eating well consistently and right now I'm happy with his eating. I would say he has mostly normal toddler ups and downs. He won't necessarily eat every meal or when you want him to, but when he's ready he eats decently. I read somewhere that for toddlers we should look at the weekly intake instead of the daily intake as toddlers don't eat consistently. I like this way of approaching it. There are many days I'd have to be concerned because his nutrition isn't balanced if I look at it daily ... but on a weekly evaluation I'd say he's doing pretty good. He's not a big eater but he's eating and that's all the counts right now. We thoroughly enjoy these times but try not to get too overally excited as we know that he's gone this long before and then crashed, but there's always that hope in the back of our minds that maybe finally he's feeling better.

My hope that he's finally feeling better is greater increased by the fact that he seems to have a bit more tolerance to foods now too. I'm quite impressed with the variety of fruit that he can now handle, although this is offset by the fact that he continues to have issues with vegetables. Seeing that his tolerance was better, the bloating was less, and his stools were doing good we waited for a good/happy stretch and as soon as he seemed to have set into a good stretch we decided to take the plunge and introduce him to gluten so that once and for all we could know whether he's gluten intolerance or has Celiac Disease. We started with oats (which technically doesn't have gluten, but due to cross contamination is avoided by those who cannot have gluten) ... all went well. Next we moved on to barley and were overjoyed that he had absolutely no issues with this ... yah, we are NOT dealing with a gluten intolerance!!

Todays challenge was the big challenge ... wheat! We now know he's not gluten intolerance, but he could still be wheat intolerant. And if not wheat intolerance he could have issues with the fructans in the wheat (which basically would still mean he's wheat intolerant). Many who have Fructose Malabsorption (FM) cannot eat wheat because wheat has fructans (chain molecules of fructose) in it . Oddly though there are also those with FM who can handle wheat. The FM that Marietta, Rebecca and myself have is mild enough that wheat is not a factor at all. Even those who have more severe FM can sometimes still handle the foods with fructans. So it will be a bit of test to gage if Matthew can tolerate wheat and how much. We will start by giving one serving of wheat every 3 days and see how it goes. Todays serving did not result in any instant (diarrhea like he gets from some veggies) or obvious reactions, so once again we're encouraged. This challenge will take much longer then the oats and barley challenges, but we're excited just to have had a stable child long enough to be able to challenge him.

I am truly hoping that Matthew one of those kids that manages to outgrow his allergies/intolerance by the age of 2-3. Previously it seemed that many foods we would introduce caused him to react - although not drastically, enough for us to notice. But lately he's passed each challenge we've given him. I keep dreaming of the day that we won't have a "special diet" food cupboard anymore ... and then I remind myself not to get too far ahead of things and just enjoy them as they are now, and regardless to be thankful that it appears that most of the issues Matthew had were likely related to his body struggling against various intolerances.

At the beginning of April I began to go to the chiropractor for my headaches, jaw, neck and shoulder pains. Matthew would trudge along with me and entertain everyone there. It came up once that I had to do baking to restock Matthew's supply ... which brought up Matthew's diet ... and lead to the chiropractor wanting to check out Matthew and saying that he could help him. So here we are almost three weeks since Matthew's initial visit ... coincidence that he's doing better?? The chiropractor that we are seeing isn't just the regular bone-cracker. He uses a special table so that when he adjusts you don't even feel it. He also uses applied kinesiology (muscle testing) to determine what needs adjusting or attention. The method used for this is similar to the hollistic allergist we took the kids to before (see here). It all leaves me rather skeptical. It's probably because it's just a foreign concept that I just can't wrap my head around. But yet many of these work with the same concepts as chinese "medicines" (acupunture etc) and there is much positive that can been see in the world of chinese medicines. Each time we see the chiropractor he asks how Matthew is doing and he seems more confident that he has cured Matthew. Regardless at this time Matthew is doing fine ... whether coincidence or not doesn't really matter, we're just happy to have a happy boy.

Our energetic little boy who can't sit still for more then two seconds is actually very cooperative each visit and loves going for a "ride" on the table (the table goes upright so that a person does not have to climb on it but can just step on and then be lowered). On the first picture you can see how he is using the applied kinesiology. Matthew's small intestines are often weak and so he applies pressure to them and a spot on his head (this is the "power source" that is used to reenergize the problem area). See how one can be a bit skeptical??













Candy Time. The poor deprived boy went so long without sugar that now he craves it something awful. We are learning quickly not to leave a purse laying around (now that he knows how to open zippers) or any candies out as he will try to inhale them. Thankfully there are a few candies that he is allowed to have (Rockets and Nerds) and as soon as the girls have a candy he is pointing and asking for his. I will put them in a bowl and he will plunk himself down on the floor whereever he was standing that that moment and wait for me to give him his bowl.













Reading with his sisters. He still loves to read, although his attention span is short. He also loves glasses ... just has a bit of hard time getting them on properly

I finally had to pack away this toy as Matthew would drag it all over the house to use it as a stool ... this is how he managed to get ahold of candies, as well as other foods that he shouldn't be eating if we weren't looking ... makes it hard for me to know what he's reacting to when I don't know what he's eating ... thankfully I usually caught him on time.

Trains. Some time ago Matthew became obssess with Thomas the Tank Engine books. We would read them many times a day to him. We never introduced them to him, he found them himself on the girls shelf and would bring them to us. When we realized he'd become attached to these stories we gave him his Thomas train (he got it for his birthday but we never gave it to him because we figured he wouldn't appreciate it at that age). Well Thomas and the no-name car we gave him went everywhere with him for a few weeks. It is neat and precious to see his attachment to this toy and reminds us of James and his Leon's truck. A few days ago I decided he was ready for a new thrill and gave him Annie and Clarabel (Thomas's coaches) to go with Thomas. Thomas was forgotten for a day or so as he dragged Annie and Clarabel everywhere, but now he plays with all of them together.

One of Matthew's favourite places (besides the train track) to play with Thomas was on the change table. He would climb up on the table himself and ride Thomas around the edge of the table. It was neat that this is the first place he headed to with Annie and Clarabel.

Fructose Malabsorption #3 and #4

Yup ... here we go again. A few weeks ago Marietta and I went for Fructose Malabsorption Breath Hydrogen tests to see if we too have FM. Not surprising, the results came back positive for both of us.

Due to a long list of symptoms and a search for answers on my continual headaches as well as recent GI issues I requested a test as I suspected I had some form of FM, although certain things just didn't add up. Whether this is the answer to my headaches issues it debateable and rather unlikely, but I do see it as being related to the GI issues. I have always blamed my headaches on TMJ, but I also know that certain foods and smells give me headaches, so I have been on a quest to try and get these under better control. The last few months of trying to figure things out lead me to believe that my TMJ does play a large factor, as well as the dry eye syndrome I have. A trial of a low fructose diet is the only way I'm going to figure out if it is also a factor. A couple months ago I did a complete sugar-free and low fructose, preservative-free diet but did not feel any better afterwards ... actually I felt worse, but I wonder if that is because of the lack of proper nutrition on the diet. So we will try just a low-fructose diet, something we're somewhat used to around here anyways, and sort of incorporate already into our daily eating.

My reasoning for taking Marietta to be tested was sort of on a whim. For some time she had been complaining of a "side-ache" or sharp pains in her chest area. She would also continously complain that she didn't feel well but would not be able to explain what didn't feel well ... just that she felt "under the weather". I felt that she was likely looking for attention with all the diets and health issues in our house so we provide a bit of extra attention but she persisted. I noticed that some of her complaining came after eating and began to wonder if she had some form of indigestion or bloating. I happened to be at the doctor a couple days later and just requested to get her tested to. It was sort of just to check and sort of just to allow her some medical attention. About ten minutes into the test Marietta began to feel unwell and her regular complaints of chest pains, etc came out. I could tell she was being honest, and about an hour into the test she complained that she felt like she was going to throw up, something she had not previously complained about. By the end of the test she said it was starting to go away. The technician completed her test already while we were there, so we weren't surprised when she told us that the test was positive.

What does this mean?? Not really sure.

For myself. I will have to do a trial of a very low fructose diet to see how this fits into the scheme of things.

For Marietta. I don't think it means anything major as she's generally healthy and well. We have told her to take note of when she has any indigestion and let us know and we will slowly figure out what foods trigger her symptoms. I have a feeling she only reacts when she has a decent over-dose, but can handle a fair amount of fructose. At this point we have done very little to change her diet, but the positive result lets us know that if she begins to have more problems we know what is likely bothering her and what to do.

For Rebecca. It gives me more confidence that Rebecca's FM is mild and likely not the true problem that we are dealing with. Rebecca now has a pretty normal diet, avoiding the obvious fructose issues. This is allowing her to feel like she's normal and not different (something we came to realize was bothering her). Lately Rebecca has been doing quite well, we still have issues, but we are often able to related these to a anxiety or stress issue. We feel the less focus on what she eats and medicines has helped her relax and do better.

For Matthew. It just makes me wonder, but no changes there. He definitely is our most sensitive FM case.

New Fructose Malabsorption Support Group

For those of you who stumble across this blog while searching for information about Fructose Malabsorption, I just wanted to let you know that a new Fructose Malabsorption Support Group has been set up.

This group has just started, so as with most things, it is starting small, but hopes to grow over time. While the previous Australian Support Group I mentioned provides a lot of information, it can also be very restricting to those who don't fall into their FM outline as this group specializes in those who cannot eat wheat products. While this is common in FM and many cannot eat wheat, there are also many who can eat some form of wheat, whether only very little bits, or a certain kind (sourdough). And so the new group is more open to all varieties and sensitivity levels of FM so as not to make people feel like they have to fall in a certain "mold" or that they are not properly helping themselves if they continue to eat wheat.

Hopefully over time this group will grow and be helpful for those who are looking for information and help with FM. If you are suffering from FM please help it grow by joining and introducing yourself and asking any questions you have.

You can find the new support group at:
http://health.groups.yahoo.com/group/fructose_malabsorption/

Some Progress!?!? (We Hope!!)

A few weeks ago the kids had Career Day at school. They had to dress up as what they would like to be when they got bigger. Neither of the girls really know what they want to be or have any desire to be anything at this point, so they just picked something that would be easy to dress up for or that they had "tools" for. I don’t have a picture of Marietta, but she didn’t look any different anyways so it doesn’t really matter. She chose to be a hairdresser, so she dressed normal and then had a caddy of all different hairdressing tools. Rebecca decided to be a doctor. We found a extra small nurses outfit at Value Village and I just had to shorten the legs a bit to make it fit. We couldn’t find the surgeon’s hat that James’ got (see here) but we gathered other medical stuff that’s accumulated over the past years and they had a fun day.

We have news about Rebecca’s stomach. This past week we seen GI. We were very thankful to manage to get our June referral changed to January. This was originally Matthew’s appointment slot, but he got bumped up to December when he was diagnosed with Fructose Malabsorption so our very nice GI Doctor agreed to see Rebecca in his time slot (usually you can’t do this because it was only a follow-up time slot and you need a consultation time slot for first appointments).

At first it didn’t seem that much came out of the appointment. The doctor would like to just get to know Rebecca and monitor what’s happening before trying to come to any further ideas on how to help her. She did order a x-ray of her stomach since we have never had one done (we have had an ultrasound, but no x-ray). We did that and then went back to wait for the results but for some reason they were not coming up on the computer in a timely fashion so we went home and they called back the next day.

Rebecca’s x-ray, to put it bluntly, shows that she’s full of poop. Even though our less restrictive diet has put her back on a daily bowel movement schedule she is still backed up and not clearing out her system properly. So we started her on a laxative called Dulcolax. She had to take 5 doses of this and just completed her last dose tonight. This laxative works by stimulating the colon muscles to contract and push it’s contents along. It also helps by accumulating water to soften the stools and allow easier elimination. Let’s just say it works well. The nurse warned that she would probably have more pain while taking it and this was indeed true, but she’s been tough knowing that it’s short term and hopefully is going to help the ongoing pains. She was also a bit nervous about going to church (a bit of an anxiety attach) for fear she would be in too much pain or have to keep going to the bathroom. She stayed home this morning since I was home with Matthew anyways and it’s a good thing she did. By afternoon the worse of the last dose had worn off and she was good to go in again.

Tomorrow she starts on another type of laxative called Polyethylene Glycol 3350. This type of laxative increases the amount of water in the colon, but does not stimulate the muscles like the Dulcolax. At this point they are saying she will probably need to be on this for the next six months or so. She has a follow-up appointment in three months so we’ll see how things are going at that time.

So it’s a bit of a comfort to have found something that seems to explain her increase in pain in the last months. It is also nice to know that it is something that has treatment options. We have no idea how long this has been a problem since we have never done an x-ray before. She did have an ultrasound in July, so I assume if it was an issue then it would have shown up ... but I am not really sure and will have to discuss with the doctores. Based on that our guess is that her very restrictive diet at that time did more damage then good. It is really hard to tell at this point whether we were always dealing with bowel/constipation issues or how Fructose Malabsorption factors into the whole equation. For now we hope that this treatment will ease her pain and allow us to better establish and understand how much Fructose Malabsorption is an issue for her. We will also have to better establish a diet with more fiber ... something rather hard to do when you have FM.

So that is the biggest news on the Rebecca front. We hope that this will bring some relief and maybe also ease some of her anxiety as well. We were thankful to see that the GI doctor did not quickly dismiss her case because of the possibility of emotional/anxiety/depression issues. She felt that there was likely both going on and that we needed to look at both, this was comforting.

On the emotional end of things. Since I last wrote we have gone through two assessment/interview processes in order to get Rebecca into a counseling program. The first assessment determined if they felt help was needed. The second assessment was to better understand which treatment would be best for her . We sat down with two therapist and from there they take it back to the team and decide what program would work best for our family. We were told it would take about six weeks to get into a program, so we are just waiting on that right now. They were encouraging in that they did say that it seemed we were on the right track with how we are treating/helping her.

So all in all, things are looking a bit more positive right now. Not that she is feeling any better at this point, but we have gotten our foot in the door at the needed places to hopefully be able to get her on the mend.

Rebecca Again

I thought I’d just do a follow up on Rebecca. After I last wrote we had our follow-up visit with the hollistic allergist. I explained that she was not any better, if anything she is worse, even though we had adjusted her diet to what he had told us last time. I must admit he lifted himself a bit in my books by his answer. Since she is not any better it is his opinion that her problems are not food related. Since part of his treatment is iridology he spent some time reviewing what he sees by looking in her eyes.

Iridologists look at a persons eyes and from what they see they believe they an tell you more about the condition of a persons body. They use a iris chart to determine what the eye is telling them. Although the majority of my research says that iridology is not very reliable or accurate, I suppose it doesn't hurt to listen and see what they have to say (especially if it's covered in the cost anyways) ... who knows it could give leads to a correct idea.

While we were there he showed me her eye and what he believes her eyes are saying. I had a chance to look also and compare her eye to the charts he had. I wrote down the name of the conditions her eye says she has in order to further look it up ... but for the life of me I can't find the info back ... grrrr. According to what he saw in her eye he claims that her problems are anxiety related. He says that her colon is as tight and tense as can be and it shows it is this way due to stress or anxiety. So ... he could be right, he could be guessing ... just like we are right now ... guess we'll have to wait and see what time tells us.

We also found out a few weeks ago that Rebecca has a parasite. I do not know the name of the parasite, I will have to ask next time I’m in. Our pediatrician said that it’s not a serious parasite and often they would not bother treating it if there were no symptoms, but since Rebecca has symptoms of something it is worth treating.

Treating this has snowballed a few other issues. Since Rebecca has Fructose Malabsorption we have the check her medications first to see if they are FM friendly. The doctor ended up putting her on a pill form because of the ingredients of the liquid form. So three times a day we had to crush this pill and give it to Rebecca. Well to say that this stuff tastes disgusting would be putting it extremely mild. We tried several different ways of feeding it to her before we settled on the theory “a spoonful of sugar helps the medicine go down”. Of course with her we shouldn’t be using excessive sugar so it’s really a mixture of stevia, aspartame and a bit of sugar. Although this was working it was causing some severe anxiety. It didn’t take us long to realize that she was not doing well. She would not eat much, she always had stomach pain, she dreaded taking her medication, although she did so very faithfully and would remind us if we forgot.

Since Rebecca had to take the medication three times a day we taught her how to take it herself so that she could bring it with to school. Come Monday morning though it became obvious this wasn’t going to work and once again we are very thankful for living so close to the school. I promised her we would come and help her at lunch time. She was only at school about an hour when we got a call to pick her up as she wasn’t doing so well. Upon coming home she was fine though and so we were sure that she was so anxious about taking the medication. I called to have it switched to a liquid form … I much rather give her some extra fructose then deal with such an uptight basketcase. Changing the medication brought on a totally new child again. She began eating again, was happy, and no more tummy aches. Another sign to us that we are dealing with an anxiety/stress/emotional problem.

With the holidays and all the good eating we decided to give Rebecca a holiday from her strict diet as we still are leaning towards the fact that her Fructose Malabsorption is not a very severe version. We have enjoyed two weeks of a pretty easy going kid with only a couple short-term tummy issues. We have kept her off the major fructose problem foods and try to not go to extreme on the sugar intake (okay, a few except there as well) and we’re all enjoying the less restrictive diet. There past two weeks have confirmed our belief that FM is not really Rebecca's problem. If it were the problem she would have been severally ill from all that she has intaken during the past weeks.

So now we do the waiting game again. We have tried to minimize all attention regarding her tummy with hopes we will hear less if she is not gaining extra affection. This has not been successful, but at least we have the comfort that we know she is not just complaining for special attention or privileges. (This does not mean we do not give her any sympathy or love, but it does mean she does not get to stay up late, sleep in the lazy boy, watch video, etc). We have seen improvement since the parasite medication so time will tell whether this was playing a factor or whether she’s just going through a less emotional/anxious time. There is also the fact that we are during holiday season now, so she is not in school and we do not know how much school stresses her. She does not appear stressed and loves school, so we've never thought it any issue, but she may not realize herself that she gets over anxious or stressed ... still playing guessing games here. Given the success of the past week with her diet change it supports our theory that FM is not her major problem as she should have had immediate bad effects if it truly were.

Although it hasn’t been fun we have thanked Rebecca several times for being diagnosed with FM (as well as being so good at following her diet and trying each new change that's come up) … if Rebecca had not been we would never have figured out what was bothering Matthew!!

Rebecca wanted to make lunch the other day. We had a snacky lunch of Triscuits with toppings. She was quite proud that she could do it almost all by herself and requested I take pictures of her ... I'm assuming with the intent she wanted it to go on the blog just like Marietta.

So here she is prepping the triscuits ... and with the finished product.

Salsa Triscuits -top triscuits with salsa and cheddar cheese

Pizza Triscuits -top triscuits with pizza sauce, piece of pepperoni, mozzerella cheese and a sprinkle of basil

Microwave or place in oven until cheese has melted. Enjoy!!

Meet Matthew

Matthew is a 16 month old boy who loves to eat and play. Matthew loves to nibble throughout the day and thoroughly enjoys his meals. He can be found in his chair eagerly awaiting food to be spooned into his mouth. He loves to close his eyes, opening his mouth as wide as possible and lean into whereever he thinks the spoon may be coming from. Matthew enjoys eating regular amounts of food at meals times with several small snacks inbetween meals. This cute loveable little boy can be found playing very energetically throughout the day. He is full of bounce and spunk and is a typical boy who loves to climb, make a mess and get into trouble. Inbetween all this fun time Matthew enjoys a nice two hour nap to refresh himself and be ready for more fun and eating. To learn more about Matthew and his loveable character you can talk to his parents, Rob and Stephanie, who have expressed their great joy and unbeief in this totally changed child and pray that this new child is here to stay.

Yes … we have a new Matthew and to say we are enjoying him is an extreme understatement.

When our milk trial failed we had to go back to Matthew’s old formula for about 3 weeks before we saw him return to “normal” with regards to his stools and rashes. After this settled we moved forward with a challenge on soy milk. Because soy "milk" is not as well fortified as homo milk we had to put him on soy formula. This posed it’s own problems as formulas are all made from corn syrup or corn syrup solids, or other types of sugars that are no-no’s for those with Frucoste Malabsorptions. There is one soy formula, Alsoy, that’s main ingredient is corn maltodextrin (dextrose) and so this is good for those with FM. It’s third ingredient is sucrose, which could still pose problems for those with FM if they are quite sensitive. With our options limited we decided we would have to give this a try. I found a unsweetened vitamin fortified soy milk (Natura) and did some calculating in order to mix the Alsoy formula with the Nutura to make it equivilent to homo milk and therefore further reduce Matthew’s sucrose intake. We would prefer his bottles be completely free of non-friendly FM sugar so that we can better focus on his foods, but for now this will have to do.

And it is doing. It took a bit, but what an amazing change. For the first couple weeks we seen Matthew react to the soy milk in the same manner as he did with the milk, but milder. We held his bottles at ½ new formula and ½ old formula for some time with the hopes his body would be able to settle and adjust. We were very discourage at one point but so thankful for not giving up too quickly for his body did settle and after three weeks we seen his symptoms all leave. Every now and then we get this little flare up on his face, but it being winter we can’t say for sure if it’s food related or weather related. While we were holding Matthew on ½ and ½ he began to nibble all day long. He would go into his food cupboard and bring us his cereals, Baby Mum-Mum’s, rice cakes, rice crackers, GF cookies, etc.

We decided to try decrease his formula intake again and this time it went much better (our last attempt was a diaster). We have brought him from 50oz a day to 30oz a day. He still drinking more then he should be for his age (20-24oz is more in line with his age) but we’re happy with this level right now. The combination of his change in formula and his decreased formula intake has been amazing and I think not a day goes by that we don’t comment on how different he is, how much we love this new kid(not that we didn’t love him before), how we can’t believe the change, etc.

The above already describes the new boy we have. He is eating about 10 times what he used to. I don’t know if it the amount a normal child his age would eat but either way it’s plenty for him. And now I must start being more deligent on making food for him. He still likes his plain dry rice and rice noodles, but when he’s eating this much he can’t survive on that. So all in all an exciting change in our house. It has been two weeks and we still realize it could be temporary, but he’s never done this well for this long before (especially considering he has a molar coming in right now too) and so we have reason to rejoice and we pray each day that this is the answer and this is all it has been all this time and he may continue to be happy, content, healthy and growing.



When Matthew figured out how to carry the stool we had to pack it away in the closet so that he could no longer get it and reach the things on the counter. But true Matthew style ... it didn't take him long to figure out another way to get what he wanted. Not only could he now reach things, this is easier to carry as it has a handle and it's even higher then the stool, so now he can also attempt to get up onto the counter. Yes, our dear boy is full of energy and has no fear.

Rebecca Update

We are often asked how Rebecca is doing and many times I've want to sit down and do an update ... but time keeps getting away on me. It's probably a good thing because all you'd read about is how we have no idea what's up with her and are confused. Since I'm not really sure what I'm going to write I think I'll just babble off (like I don't do that normally) various thoughts and stuff that we've been doing. Much of this might be more geared to the readers who come via searching for fructose malabsorption information. Maybe they can help, maybe I can provide some information, maybe you can provide me with some information, maybe we can all be confused together :) For the rest of you we can pretty much say we're no further ahead then we were months ago.

Previously I wrote that we were struggling with the diet with no results. We have been back and forth to the doctor numerous times as well as adjusted and changed the diet numerous time and gone for a few different tests, but we are no further ahead ... if anything we are further behind.

Shortly after I last wrote a few of Rebecca's comments made me decide it was worth putting her on a reflux medication. Rebecca would be out of bed almost every night complaining about her stomach. We made a strong point of not giving her any additional attention or special treatment during these times. We would simply tell her she knew what to do. Which was to either get a cup of water or a heat pad ... neither of which worked, but it was something for her to do. She was already sleeping in an upright position, so there were really no other things we could think of that would help her. Often I felt terrible for being so "cold" but we knew that if we let her stay up or pampered her in any way we would never know if she was truly "sick" or just soaking it for all it was worth. Yet each night she would continue to come out, even when we would tell her there was no point in coming out because there was nothing we could do (although I did like that she would come out so I could know how she was feeling). This is not to say we were completely cold, we of course would offer a sympathetic ear, hugs, etc but we simply had to remain firm to help ourselves understand as best as possible how she truly is feeling.

Given that Rebecca was complaining more at nights and a few comments about burps as well as Rebecca's constant desire to eat we thought it was worth attempting reflux med. Often Rebecca acts like she's starving, and she really thinks she is. Food is the only thing she thinks of and she drives us nuts as she wants to eat all the time. When she asks to eat she wants it immediately. She complains that her tummy hurts but I have no idea whether she's just hoping this complaint will help her to get the food she wants. Our pediatrician advised that sometimes when you have indigestion you don't want to eat at all, other times it creates this gnawing feeling that makes you think that you want to eat all the time. So we started her on Prevacid medication, which slows or prevents the production of acid in her stomach. We had peace at nights for about a week. Did the medicine actually help? or did she think that since she was now having medicine she was better and stopped complaining? Whatever the case the complaining started again. Our next visit the doctor said she was on a low dose and we could attempt to increase it before we give up on the idea. Once again we had a week of peace and then a major turnaround ... in the wrong direction.

Rebecca does not complain all the time at nights anymore, once or twice a week she may complain, but mostly that is better. Instead we are now dealing with much more daytime pain. This has been bad enough that I've kept her home in the morning for an hour or so (so great to live right by the school) until she feels a bit better, and have also needed to pick her up from school because she doesn't feel well. Considering she loves school I'm quite confident that she is not faking so she can stay home. There have been other times the teacher has told us she was crying that her tummy hurt.

We have also done more diet changes. We have been on and off wheat but continue to see no difference so now we just allow a limited amount of wheat. After months of such a restricted diet and poor bowel movements we decided that the diet might be more of the problem as she may be dealing with constipation type pains now. So after much reading and comparing I made up a new list of okay fruits and veggies ... the ones that appeared on most of the many different variations of diet lists. She was having 3 fruits and a few more veggies then that. We rotated what she gets so that she doesn't get the same fruit or vegetable (except potatoes sometimes) two days in a row. She was very excited to finally be allowed some more variation and with extra encouraging to make sure she drinks lots (she used to love drinking but now needs to be reminded to drink more) we have better bowel movements again ... but still pain :(

We were offered a paid visit to see a holistic allergist in order to better evaluate Rebecca and Matthew and help us treat and cure them. This visit has left us very confused as we're not sure how much to believe or not. According to this allergist Rebecca was pretty much allergic to everything. She had a high intolerance to all dairy, all proteins, all grains, all fruits, all nuts, some sweeteners, MSG and gluten; and a minor intolerance to all seeds, some sweetners, some vegetables, cocoa, coffee, and yeast. So that being said what in the world would she eat??? And would she not have been much more sick then just stomach pains if she was eating so many things that she shouldn't be. Through this visit they were also able to cure her of the majority of her allergies. So now she only has a intolerance to diary, some vegetables, yeast and MSG. YES, she's supposedly cured of her fructose intolerance.

I'm sure you're all thinking the same thing I was/am. I will leave this link if you want to read any more on this: BIE. I have done a lot of reading and research and have had a hard time finding information about it NOT working. I find many sites offering the service and explaining it. I have found many sites of skeptical people who have been cured by it and some who have even gone on to be a holistic allergist themselves. It is all very confusing. (Just to add to the confusion according to his testing the only allergy Matthew has is milk, which he cured. He supposedly did not have a fructose allergy, even though just two days prior to our visit Matthew tested positive for Fructose Malabsorption)

So we decided that we wouldn't know unless we tried and so we tried. We took diary and MSG out of Rebecca's diet and she is only allowed yeast occasionally. We loosened the reigns on her fructose diet allowing a few more fruits and vegetables and a bit more sugar, but keeping the rest pretty much the same. I was not going to jeopardize all that we had already done.

No improvement ... if anything worse again. We have another appointment coming up with the holistic allergist for him to clear up the rest of her intolerances. We will see what he says then. He will likely suggest it is not food that is causing her problem ... and he could very well be right.

We have changed our approach and are moving away from the food focus. It is automatic to think that food causes stomach pain, and it is still very well possible that it is causing her pain. We will not throw out her fructose diet completely, especially because she is so well trained. Rebecca is very dedicated to her diet and trying to make her stomach better. She sometimes has to remind me that I've given her something she should not have. She always asks about everything and sticks firmly to what she is allowed. She has had a difficult time and even though the diets do not help she continues to stick to it and doesn't cheat (unless mom has given her permission :)

One of the biggest side-effects or factors in Fructose Malabsorption is depression. We have watched Rebecca closely for this but felt that she was okay in this area. I remember reading about other parents struggling with this aspect of FM in their children (usually termed behavioural problems) and just skim reading it because it didn't apply to us or thinking how glad we didn't have that factor to deal with as well. There were little things throughout the summer that we took note of, but they really could just be chalked up to character or attitude and so we weren't concerned.

Over the last couple months we have begun to wonder if maybe we should be concerned. Those issues that we thought were character and attitude seemed to flare up more. Discipline seemed to make it worse and snowball the effect. She often seemed on a roller coaster ... happy and laughing one minute, sad and crying the next. She would often say she had a stomachache and now we must wonder if she truly does everytime or if she just uses it as an excuse for feeling down. She seems to take anything negative very personal, sulking and grumping. Again all things that could just be a stage or a character or simply some behaviour issues that need to be dealt with. What really made me stop and think that I had to start putting further thought into all this was one day when we sat in church and I looked down to see her crying. When I asked what was wrong she did not know, she only knew she was crying and it wouldn't stop. Maybe she simply didn't want to tell me why she was crying ... who knows. What I did realize then was that I should not ignore this until it gets extreme but instead to consider having someone experienced evaluate to see what they feel.

We also saw that the week after the anniversary of James' death she especially acted out. And now suddenly she is doing quite well and I wonder whether I should just let it all be. I am so thoroughly confused most of the time. I wonder whether I should tightened the reigns on her diet again as it could all be fructose related. There are many cases that are simply behavioural and kids act out whenever they have non-fructose friendly foods. I wonder whether the trauma of the past couple years has taken a bigger toll on her then we thought and we are now seeing more obvious symptoms of it. She still very easily breaks down for certain things related to James, her tolerance level in this area has not gotten any better. How much of this is still grief?? Or could she possibly have anxiety and therefore the stomachaches. She has never seemed like a nervous child and I think most people would say she's always been a happy-go-lucky type of kid. Rob and I used to always comment on how she was "such a kid". She enjoyed life to the fullest without a care in the world, she tuned out the big people world and just had fun. Could that have all changed or could she just have been good at seeming relaxed. So many questions ... and no answers ... yet.

So we have no idea whether she has any problems in this area but we have decided to go ahead and start the process to have her seen by a professional. Coming to face this has been a bit difficult for it's always hard for one to think that their child's mind is not functioning just so. We are so scared to be overreacting and overevaluating regular behaviour but at the same time we fear downplaying things and leaving her to suffer when there could be help available. We are constantly pray that things will settle out on their own and this will all become a thing of the past.

Well I think I'm done babbling for now. I'm sure if I let my fingers carry on I could throw out lots more confused thoughts ... but all the confused thoughts are not going to help the situation so I'll just stop there. Thank you all who have shown concern and given advice, we always appreciate it.

I must remind myself:

"Cast your cares on the LORD and he will sustain you; he will never let the righteous fall." Psalm 55:22

Each weekend one of the kids from Rebecca's class gets to take home the class "mascot". This is quite the highlight for the child and Adventure Bear is appropraitely names as he gets to enjoy many different adventures at each house he goes to. Rebecca had her turn some time ago already and her and Adventure Bear had a lot of fun as they went to two birthday parties on Saturday, one being a combined party ... so three birthdays in all!

Fructose Malabsorption AGAIN

*sigh*

Matthew went for his fructose malabsorption test today and the technician was kind enough to let me know that his test was postive.

I had been dreading doing the test but I must give much praise to Matthew who was an excellent boy all the way through. He had to fast ... my biggest dread since he wakes at nights, but I filled him with a bottle just before the fasting deadline and he made it all the way until 6:15am. After a few minutes of his panicy cry for formula dear Barney saved the morning. He watched TV, had a bath (another thing he likes) and only complained mildly on the ride down. I was also worried about getting him to drink the fructose solution ... but put it in his bottle and he was hungry enough he didn't care what it was. Between blowing in the mask (every 15 minutes for 2 hours) he was free to roam and we wandered the halls. He enjoyed the big open space at first, but 45 minutes into the test wanted to rid the stroller or be carried (a sign the fructose was kicking in???). When all was said and done ... after fasting so long he only drank 5oz of his bottle ... fructose overload??? But the morning went well, we got an answer right away (doesn't usually happen), and now we can go forward based on that.

I'm not sure how I feel about this right now. I remember the joy we had when we got this answer for Rebecca ... and now months later as we continue to struggle with her I can't say I have the same joy for Matthew.

Part of me is glad for the answer. Although the diet is very hard to figure out and maintain (as we've learned over the past months) at least we have something to work with now. The other thing is that now I can have a bit more hope that we're not dealing with anything serious with Matthew ... just food intolerances. And I suppose I'm also partly glad because I have renewed my faith in "mothers intuition". Sometimes I felt like the doctors were just entertaining me. They always seemed to want to point out how much we have gone through. As if to say we've become paranoid because we've gone through so much, but really we shouldn't be concerned. I truly hate having this family full of all kinds of medical issues, but when a diagnosis is found it often makes me feel a bit better ... "okay, I'm not completely wacko, there really is/was something wrong".

The other part of me isn't all too excited about the diagnosis. First of all because we continue to have problems with Rebecca ... so until I see positive results with Matthew I'm not getting my hopes up ... we may have just hit on a part of the problem. And then of course the discourging factor that we have to keep him on this restricted diet that feels impossible at times.

I wrote that Matthew was still miserable etc. Then commented that I couldn't comment ... hinting he was doing better. At that time things were going better in the sense that he wasn't crying on the floor non-stop all day ... his refusal to eat much or consistently continued. Part of the reason he wasn't crying so much is because I had adjusted the schedule a bit to help with the crying. We have been extremely busy lately so we are often gone for the mornings, which would keep him busy ... although usually by 11am he's had enough no matter how entertaining his surrounds. On top of that I've given up on the little-to-no TV rules that apply in our house. I feel bad that I've resorted to the TV as a entertainer and babysitter ... but it sure has made life much more endurable and manageable. Matthew loves Barney or any type of video that has excessive amounts of energetic singing. Sometimes the TV is used to just push him a bit further before he goes for nap, other times it is used because I just can't endure him anymore, or I simply need to get something done and can't have him clinging. It usually works for about half an hour or so and then he'll start whining to come off the bed (TV is in our room so he sits on our bed). I do find that often it does rejuvinate him a bit and so the process buys me about an hour where I can quickly try to be productive. So although things weren't necessarily better, they felt better because we weren't pulling our hair out all day trying to figure out what to do with him.

We did do a milk challenge for two weeks ... but he failed that ... much to our disappointment. We decided to put him on lactose free milk, that way if he reacted we could determine if it's the protein or the lactose. By taking the lactose out we would know he's allergic to the protein. So we can now say that Matthew has a delayed allergy to milk protein. He might also be lactose intolerant, but it doesn't matter since he can't have milk anyways. So if you apply Rebecca's diet (see here) and then take out all milk and soy ingredients ... ah ... not fun.

Why do we still have him soy free? We have not yet had the opportunity to challenge him on soy. It has been over two weeks since we put him back on formula and we are still seeing the effects of the milk challenge (in the form of whole foods - rice, rice puffs, strawberries, corn puffs - in his diapers). We are waiting for these to clear up before we challenge ... if we challenge. He also developed a rash on his face while on milk. It developped on his bum the first day we had him on milk (we were only giving him 1/4 of a bottle with milk, the rest still formula). By the end of two weeks this rash began to appear on his face ... that was enough to tell us it was time to stop and at that point he was only on 1/2 milk and 1/2 formula. Remember us dealing with such a rash before?? (see here) We had thought it was due to wheat, gluten or cereals as it went away afte we rmoved these ... but milk was likely a factor ... and maybe the other items on top of it too seeing as some with fructose intolerance cannot have wheat and do develop a rash or eczema (not that common of reaction). And if you're reading that post ... remember how all of this started with a high respiratory rate?? We noted that while on his milk trial his resp rate was higher ... not drastically. To be fair we don't check his resp rate very often anymore as it's usuall around 40bpm (the high end of normal). Something possessed me to check while he was on milk and noted it was 50-60 ... he's now back down to 40bpm ... coincidence or interesting fact??

I have a call out to GI about what to do next. We were told there is no formula for someone with ructose intolerance (could this be because of there skepticism?), but I ran into James dietician today and she told me there were options. We can put him on a carboydrate free formula and then just get dextrose from the health food store (or Bulk Barn is where we get Rebecca's) and add it to the formula. My quick looks tells me the formula she was talking about is soy based ... but we'll see what they come up with. Maybe having a postive test will make them a bit more willing to find something.

So we'll see how things go .... praying that this is indeed the answer and the end of the list of intolerances.

Just like his big brother (poor guy is always compared to James).

(Left) During our many hours of roaming the halls of McMaster James always loved it when we push his stroller or pulled the wagon right beside the wall so he could run his hands over the bumps. By our second trip around the halls Matthew also noticed these bumps and put his hand out to indicate he wanted to touch them and run his hand along them.

(Right) James also spent many hour behind this window in the blue section. This window looks down on the parking garage. There are two open sections where you can see cars driving and Matthew also found this entertaining to watch.