Tuesday, November 11, 2008

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.

6 comments:

Anonymous said...

((HUGS HUGS AND MORE HUGS))

Kevin and Amy said...

We will also pray that this is truly the answer you were looking for and that you can move forward from this point. I'm glad they gave you the results right away - this way you can jump on GI and get a dietician faster.

All the best with yet another hurdle to jump over! One more closer to the finish line:)

Anonymous said...

Praying for much patience and strenght for you!.....
Karen

Liz and Cooper said...

Ahhh your intuition was right. At last you have confirmation. I truly hope that things will turn around for you and your beautiful boy. Let's hope the dietitian and GI doc can get his little tummy settled.

BTW: Love the story you did on Harvest. Clever lady.
All the best xx Liz from downunder

HH said...

I'm so happy you have those results so quickly. Not so happy that you have to deal with this difficult challenge but at least you have your answer. Mother's intuition is always pretty spot on. Hope that with all the changes you will make for Matthew, things will be on the improve very quickly.
Hugs, Helen

wenhey said...

I have been reading your blog for some time now. I pray for God's strength and patience as you deal with all the trials in your life. Good to hear some encouraging news about Matthew!