Sunday, October 18, 2009

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.


Tina said...

I want to say thank you for the amazing information you provide! My 5yo daughter has had odd digestive issues since she was 6 months (about the time we started feeding solids). Her GI doctor just recommended that we try a diet low in fructose. Up until about a year or so ago we had been very strict about her foods, just because I wanted her to eat healthy. Looking back I can see that her attitude problems and her digestive issues seem to have gotten worse when we got a little more relaxed and let her eat more junk (which is high in sugar and fructose).
I really appreciate all the info you provide.

Steph said...

Hi Tina

While it's not nice to have FM it would be nice for your daughter if you do have a diagnosis so you can help her be more stable. Since yomention that she has ups and downs it could be that she does not have really servere FM and would be able to balance her diet by just knowing that fructose is the thing to avoid.

I do have some other posts on FM, altho they are all pretty outdated, but there are various comments with them that might be helpful. If you do think she has FM and are looking for more information I would suggests checking out the support group listed on the side as this will liekly be helpful in providing more information on what-to and what-not-to eat.

Wishing you all the best with your daughter.