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/
Wednesday, February 25, 2009
Friday, February 20, 2009
Getting Big
My boys getting big ... just some little tidbits about our growing little big guy.
Matthew likes to hang out on our bed and watch Barney, Spot, Little People and recently has added Thomas to his list. I am not to keen on the amount of TV he watches, but know that it goes in spurts depending on how he is feeling. Recently he finally decided to reattempt to get off the bed on his own (he was able to before but something must have happened as he refused to do it again) and now that he gets off the bed on his own he often doesn't watch for long but comes wandering back out of the bedroom after about 10-15 minutes. It seems he just needs that "down-time" to get refocused and reenergized and then he's okay to go for a while again. Whatever it is, it's the only thing besides holding him that stops him from being so miserable on his bad days.
Poor Zoey (my parent's dog) ... Matthew really tries to be nice, but he's just a bit rough. Matthew has no fear and has never shown any fear of dogs. It's a good thing that Zoey is too old and dumb to act very quickly as poor Matthew has deserved a few bites. I will never forget the time just after Matthew started crawling that I found him clinging onto Zoey's saggy cheeks, looking the dog straight in the eye with no fear at all. Zoey on the other hand looked quite afraid and unsure what to do ... funny ... this is the same dog who took a good hunk out of Rob's (and others) leg before. Matthew loves animals and tries to be nice, but his pets and pats are rather rough and since Zoey is old and deaf Matthew scares the crap out of her quite often. I'm afraid one of these days Matthew is going to pick on the wrong dog and we could have some serious consequences.
Another of Matthew's loves is the toothbrush. For quite some time now he has had his own toothbrush and has enjoyed walking around with it in his mouth, chewing away at it. He always enjoys being part of the routine and loves to climb up with the girls to brish with them. He's also very good at spitting ... nobody had to teach him that he figured that one out quite easily on his own. For a time he got into the habit of cleaning the sink, toilet or the registers with his toothbrush. (He can climb up on the toilet himself to get the brush, so if the bathroom door was left open he'd be in there with his brush). Needless to say we were going through quite a few toothbrushes in a short period of time, so we had to pack away the toothbrush for a bit. This did not go over very well and he would often be begging to brush his teeth. Recently I allowed him to have a brush again and we try keep it out of his reach as well as have him under close supervision when it is brushing time ... we'll see how long he behaves.
The stools are usually hidden in our house since Matthew is way to quick and mischievious if they are out. If the girls are doing cooking or baking then they take the stool out for a bit. Matthew is right in there like a dirty shirt and the second they are off that stool he's up there and getting whatever his hands can get ahold of. If there's one thing that Matthew likes it's the foods that he's not allowed to have, this is why the stools must remain hidden and all food far back on the counter as even without a stool he seems to have arm extensions that reach quite far. He enjoys to be part of what everyone else is doing also and here he is cracking egg shells ... since he's allowed eggs that's okay.
And when he's not cooking, he's cleaning!! I assume all kids like the vacuum cleaner as I know all of mine have ... it's just a kid thing ... too bad it wears off so quickly. You can see laying on the floor a little red vacuum that is suppose to be Matthew's, but of course that is not good enough and he much rather use the real one. And the real one is not good enough unless it is actually running and making lots of noise. He has lots of fun doing this.
And here is one of Matthew's favourite past times lately ... books. He just loves to read. Often if he's quiet I don't know whether to go look and find out what kind of trouble he's into and what kind of mess I'm going to have to clean up or just leave him for fear I might disturb he's good playing or his reading time. Thankfully his box of books is in his bedroom so it's somewhat easy to sneak up and check on him without him noticing. He is often found sitting on the floor reading through the books and like a true boy he loves the ones with trucks and construction equipment. He has also
taken a liking to Thomas books. These were not in his box but he found them on the shelf in the girls room during one of his distructive moments when he was ripping off books and throwing them on the floor. After that he kept going back to get them off the shelf, so we added them to his box ... amazing how they naturally gravitate to these things.
It's such a fun age to watch them grow and learn so much each day. It also makes me sad at times as each day he learns more he becomes less and less a baby ... if only we could freeze him this way (when he's having a happy day :).
Matthew likes to hang out on our bed and watch Barney, Spot, Little People and recently has added Thomas to his list. I am not to keen on the amount of TV he watches, but know that it goes in spurts depending on how he is feeling. Recently he finally decided to reattempt to get off the bed on his own (he was able to before but something must have happened as he refused to do it again) and now that he gets off the bed on his own he often doesn't watch for long but comes wandering back out of the bedroom after about 10-15 minutes. It seems he just needs that "down-time" to get refocused and reenergized and then he's okay to go for a while again. Whatever it is, it's the only thing besides holding him that stops him from being so miserable on his bad days.
Poor Zoey (my parent's dog) ... Matthew really tries to be nice, but he's just a bit rough. Matthew has no fear and has never shown any fear of dogs. It's a good thing that Zoey is too old and dumb to act very quickly as poor Matthew has deserved a few bites. I will never forget the time just after Matthew started crawling that I found him clinging onto Zoey's saggy cheeks, looking the dog straight in the eye with no fear at all. Zoey on the other hand looked quite afraid and unsure what to do ... funny ... this is the same dog who took a good hunk out of Rob's (and others) leg before. Matthew loves animals and tries to be nice, but his pets and pats are rather rough and since Zoey is old and deaf Matthew scares the crap out of her quite often. I'm afraid one of these days Matthew is going to pick on the wrong dog and we could have some serious consequences.
Another of Matthew's loves is the toothbrush. For quite some time now he has had his own toothbrush and has enjoyed walking around with it in his mouth, chewing away at it. He always enjoys being part of the routine and loves to climb up with the girls to brish with them. He's also very good at spitting ... nobody had to teach him that he figured that one out quite easily on his own. For a time he got into the habit of cleaning the sink, toilet or the registers with his toothbrush. (He can climb up on the toilet himself to get the brush, so if the bathroom door was left open he'd be in there with his brush). Needless to say we were going through quite a few toothbrushes in a short period of time, so we had to pack away the toothbrush for a bit. This did not go over very well and he would often be begging to brush his teeth. Recently I allowed him to have a brush again and we try keep it out of his reach as well as have him under close supervision when it is brushing time ... we'll see how long he behaves.
The stools are usually hidden in our house since Matthew is way to quick and mischievious if they are out. If the girls are doing cooking or baking then they take the stool out for a bit. Matthew is right in there like a dirty shirt and the second they are off that stool he's up there and getting whatever his hands can get ahold of. If there's one thing that Matthew likes it's the foods that he's not allowed to have, this is why the stools must remain hidden and all food far back on the counter as even without a stool he seems to have arm extensions that reach quite far. He enjoys to be part of what everyone else is doing also and here he is cracking egg shells ... since he's allowed eggs that's okay.
And when he's not cooking, he's cleaning!! I assume all kids like the vacuum cleaner as I know all of mine have ... it's just a kid thing ... too bad it wears off so quickly. You can see laying on the floor a little red vacuum that is suppose to be Matthew's, but of course that is not good enough and he much rather use the real one. And the real one is not good enough unless it is actually running and making lots of noise. He has lots of fun doing this.
And here is one of Matthew's favourite past times lately ... books. He just loves to read. Often if he's quiet I don't know whether to go look and find out what kind of trouble he's into and what kind of mess I'm going to have to clean up or just leave him for fear I might disturb he's good playing or his reading time. Thankfully his box of books is in his bedroom so it's somewhat easy to sneak up and check on him without him noticing. He is often found sitting on the floor reading through the books and like a true boy he loves the ones with trucks and construction equipment. He has also
taken a liking to Thomas books. These were not in his box but he found them on the shelf in the girls room during one of his distructive moments when he was ripping off books and throwing them on the floor. After that he kept going back to get them off the shelf, so we added them to his box ... amazing how they naturally gravitate to these things.It's such a fun age to watch them grow and learn so much each day. It also makes me sad at times as each day he learns more he becomes less and less a baby ... if only we could freeze him this way (when he's having a happy day :).
Wednesday, February 18, 2009
100th Day
Yesterday the Grade 1 class celebrated the 100th day of school. On this day they do various activities about the number 100. This day is also an open house day and they try to get 100 visitors to come to the class. Well they managed to 130 visitors this year.
Matthew and I went to visit during the morning. We took along Aunt Aileen, Taryn and Aiden, who had also brought with them Hannah and Lydia. This was a pleasant surprise for Rebecca for she had not expected these visitors. We enjoyed a piece of cake, a couple stories and spent some time helping the kids make their 100 day necklace out of fruitloops and licorice. The classroom was full of parents, siblings, aunts, grandparents ... it was a busy place. Later on Joycee and Ryan came to visit Rebecca and at the end of the day Rob stopped in for surprise visit.
Matthew sat with Rebecca after recess for a few minutes. This didn't last long and he got the wiggles, plus Rebecca had to do some cleanup. While Rebecca was cleaning up Matthew tried on her (incomplete) 100 Day Crown. It's suppose to have 100 stickers and a 100 Day "sign" on it ... Rebecca was a little behind and didn't get it done.
Hannah sat beside Rebecca for a bit and they both made 100 Day necklaces. They had to put 100 fruit loops on the necklace in groups of 10, with pieces of licorice dividing the groups.
Just to forwarn you Aileen ... Marietta is already asking if you can come to see her Sarah, Plain and Tall play. It's on March 3 @ 11am ... come one, come all ;)
Matthew and I went to visit during the morning. We took along Aunt Aileen, Taryn and Aiden, who had also brought with them Hannah and Lydia. This was a pleasant surprise for Rebecca for she had not expected these visitors. We enjoyed a piece of cake, a couple stories and spent some time helping the kids make their 100 day necklace out of fruitloops and licorice. The classroom was full of parents, siblings, aunts, grandparents ... it was a busy place. Later on Joycee and Ryan came to visit Rebecca and at the end of the day Rob stopped in for surprise visit.
Matthew sat with Rebecca after recess for a few minutes. This didn't last long and he got the wiggles, plus Rebecca had to do some cleanup. While Rebecca was cleaning up Matthew tried on her (incomplete) 100 Day Crown. It's suppose to have 100 stickers and a 100 Day "sign" on it ... Rebecca was a little behind and didn't get it done.
Hannah sat beside Rebecca for a bit and they both made 100 Day necklaces. They had to put 100 fruit loops on the necklace in groups of 10, with pieces of licorice dividing the groups.
Just to forwarn you Aileen ... Marietta is already asking if you can come to see her Sarah, Plain and Tall play. It's on March 3 @ 11am ... come one, come all ;)
Monday, February 16, 2009
Winter Fun
We've had a good amount of snow this winter. I'm not particularly fond of cold weather and winter, but I do figure that if it's going to be cold I rather have snow with the cold ... it just looks so much nicer. We did pretty good for snow the last few months, getting a good dumping and slowly adding more dumpings without much melting in between. Makes for skinny roads and big piles in the front yards ... and of course lots of shoveling or snowblowing. I'm thankful my husband takes care of that department. I can guarantee I wouldn't like snow at all if it was my department.
I find the kids always play very well in the winter also. There is so much that they can do out in the snow. It takes a bit to get them outside and sometimes I just have to kick them out, but once they're out they find plenty to do and usually don't come back all to quickly. Unfortunately it has been quite a cold winter and so I didn't send Matthew out, although he sure would have loved to. A few times I let him go out, but he has a hard time maneuvering in all the clothes. One time he fell face in the snow and nobody saw it happen right away. He couldn't figure out how to get up again, so there he lay until he was noticed ... poor guy.
Since it has been so cold (often -15C) sledding really wasn't all that appealing, for once you add the wind factor it's just bone chilly. There was one time we tried it out. We weren't quite sure what to do with Matthew and then decided that since he has no fear he would surely enjoy the ride ... so off we went. Well it appears that our dear little boy does have some fear in him ... for he one ride down that hill had him crying up a storm and now he refuses to go near a sled, even for a nice calm ride on level ground. We didn't last very long at the hill that day as it gets rather cold just sitting there holding a scared boy and watching others sled.
A couple weeks ago the weather warmed up and all the snow melted. Knowing that it was all going to melt away we decided to head out sledding while the weather was a nicer temperature. This time we figured it was warm enough for Matthew to play at the bottom of the hill. We usually hit the Water Treatment Plant ... a common sledding area ... but decided to try something different this time. So instead we went to Olympic Park on the West Mountain. This is a smaller hill, but still a good size for the girls. The best part was we had the whole hill to ourselves (not sure if this is normal). There was a nice little ramp that someone had made and the kids thought this was great fun since they've never attempted these at the other hill with it being bigger.
Rebecca and Marietta
Rebecca and Rob
And Matthew hung out at the bottom of the hill. He enjoyed watching and would point and laugh. At first he hardly dared move on the unlevel snowground, but by the end he was playing around with the snow.
At the end of January Hamilton celebrated Hamilton Winterfest. There were various free activities throughout the city which we (or the girls) partook in. Several of the recreation centers had free craft, cooking, games or something of that assort sessions that you could sign up for. The girls went to two of these sessions where they did crafts and some "cooking" (in quotation because all they really did was stir the chili together but didn't come near the stove). As a family we went to one of the parks for a morning. They had various games there (not very well attended) and a horse and wagon ride, as well as indoors you could enjoy a free snack, hot chocolate and lunch ... so being the dutch people that we are we went out for that.
The girls played at the park for a bit ... Rob and Matthew joined in.
The other winter fun that the kids got to do was go to Bronte Creek with the whole school for a day. The school started a new event (they hope to make it annual) and the kids had an amazing time. They spent the entire day at Bronte Creek each taking turns going sledding, skating, playing in the playbarn, having lunch, and playing different snow games (and snowballing their teachers). The girls begged me to come along as one of the helpers ... but I only like winter from inside my house and don't much like being cold ... so the idea of spending a whole day out in the freezing cold was not appealing. In the end they had a nice day of around -5C, so it was rather ideal weather ... but still I was happier inside my house. Needless to say, the kids slept good that night!!
I find the kids always play very well in the winter also. There is so much that they can do out in the snow. It takes a bit to get them outside and sometimes I just have to kick them out, but once they're out they find plenty to do and usually don't come back all to quickly. Unfortunately it has been quite a cold winter and so I didn't send Matthew out, although he sure would have loved to. A few times I let him go out, but he has a hard time maneuvering in all the clothes. One time he fell face in the snow and nobody saw it happen right away. He couldn't figure out how to get up again, so there he lay until he was noticed ... poor guy.
Since it has been so cold (often -15C) sledding really wasn't all that appealing, for once you add the wind factor it's just bone chilly. There was one time we tried it out. We weren't quite sure what to do with Matthew and then decided that since he has no fear he would surely enjoy the ride ... so off we went. Well it appears that our dear little boy does have some fear in him ... for he one ride down that hill had him crying up a storm and now he refuses to go near a sled, even for a nice calm ride on level ground. We didn't last very long at the hill that day as it gets rather cold just sitting there holding a scared boy and watching others sled.
A couple weeks ago the weather warmed up and all the snow melted. Knowing that it was all going to melt away we decided to head out sledding while the weather was a nicer temperature. This time we figured it was warm enough for Matthew to play at the bottom of the hill. We usually hit the Water Treatment Plant ... a common sledding area ... but decided to try something different this time. So instead we went to Olympic Park on the West Mountain. This is a smaller hill, but still a good size for the girls. The best part was we had the whole hill to ourselves (not sure if this is normal). There was a nice little ramp that someone had made and the kids thought this was great fun since they've never attempted these at the other hill with it being bigger.
Rebecca and Marietta
Rebecca and Rob
And Matthew hung out at the bottom of the hill. He enjoyed watching and would point and laugh. At first he hardly dared move on the unlevel snowground, but by the end he was playing around with the snow.
At the end of January Hamilton celebrated Hamilton Winterfest. There were various free activities throughout the city which we (or the girls) partook in. Several of the recreation centers had free craft, cooking, games or something of that assort sessions that you could sign up for. The girls went to two of these sessions where they did crafts and some "cooking" (in quotation because all they really did was stir the chili together but didn't come near the stove). As a family we went to one of the parks for a morning. They had various games there (not very well attended) and a horse and wagon ride, as well as indoors you could enjoy a free snack, hot chocolate and lunch ... so being the dutch people that we are we went out for that.
The horse and wagon ride and the girls with Chimo the Winterfest Mascot 
The girls played at the park for a bit ... Rob and Matthew joined in.
The other winter fun that the kids got to do was go to Bronte Creek with the whole school for a day. The school started a new event (they hope to make it annual) and the kids had an amazing time. They spent the entire day at Bronte Creek each taking turns going sledding, skating, playing in the playbarn, having lunch, and playing different snow games (and snowballing their teachers). The girls begged me to come along as one of the helpers ... but I only like winter from inside my house and don't much like being cold ... so the idea of spending a whole day out in the freezing cold was not appealing. In the end they had a nice day of around -5C, so it was rather ideal weather ... but still I was happier inside my house. Needless to say, the kids slept good that night!!
Sunday, February 1, 2009
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.
Subscribe to:
Posts (Atom)