Last time I wrote about Matthew I said I wasn't going to talk about how good he was doing as whenever I did he went downhill. Well let me tell you he jumped off a cliff this time ... the next four days he cried and cried and cried. If he was awake he cried about 90% of the time. The only thing that consoled him was being held. For four days we wondered what to do. There was nothing else wrong with him except he cried. And then the fifth day he woke up and no crying, he was content, played well and away he went. We breathed a sigh of relief and thoroughly enjoyed it. There is one good thing about having a miserable child ... you sure enjoy the good moments. That last three days and since then he's been riding a rollercoaster.
On day four of Matthew's none stop crying out of desperation we made yet another change to his diet. We now have him on a Fructose friendly diet along with his other restrictions. There was no real logic behind this, he had been eating a lot of fruit (alot in Matthew terms and in proportion to the rest of his diet), but he's been eating fruit for a long time, so that's not really a change. He did during that week binge on pears a few times when he got into the ones that were ripening for canning ... and pears are a big no-no for someone on a fructose friendly diet. We feel like we're grasping at straws ... for some reason he refuse to eat and so we associate it with something he must be intaking and so we're always evaluating what he intakes. We tell ourselves to stop because nothing changes and there's really nothing more we can take out of his diet, but we can't help wanting to do something to make him happy. From the Fructose Support Group I seen a pattern in that it's quite common for multiple members of a family (direct family or close relative) to have FM and so we grasped at this straw as a possibility. We've often said that even when he eats nothing and only drinks formula he's still miserable so there is really no more we can take out of his diet. But what if there is something in his formula? There are many rare things out there, so I'm sure that this formula isn't the greatest for every child, but it's a pretty safe option ... except it's not fructose friendly.
And so has begun our next battle. What to do next? He drinks 45-50oz of formula per day ... even with a good fructose tolerance level that would be too much fructose in a day. We adjusted his diet and began to back off on his formula. This would have the additional benefit that we would be able to see what happens when we start to "starve" him into eating. After a week I realize backing off the formula wasn't going to be enough so I also put out a call about whether they could do infant fructose intolerance testing here (not all hospital do it for children under three) and inquiring about changing to a fructose friendly formula.
To add to his miserableness Matthew developed a nice chest cold last week. So on top of us limiting his formula (which we had down to 30oz a day ... still plenty, just not enough for his liking) he began vomiting again. This supports of theory that he vomits whenever his system is low and he's fighting something whether gut related or not. So between the limited intake and the vomiting he wasn't get near the formula he was used to. (I won't go into how unhappy and sad he was and how many nights and hour per day I spent sleeping in the chair with him).
Needless to say he isn't eating any better now - three weeks into the limited intake and being mostly recuperated from his cold. So today I gave up and fed him what he wants. We're all tired of the crying, we haven't gained anything from the attempt and now he's getting up 2-3 times a night ... so ... I give up before we all go insane.
Today I got the answer about the Fructose Testing. They are able to do it and are in the process of booking a test for him. I don't look forward to doing the test (he will have to fast 12 hours before the test, then the test is 3 hours long ... this for a child who doesn't sleep thru the night and goes beserk at night if you don't get the bottle to him fast enough) but I do hope it will give us an answer either way.
I also got the answer about changing his formula. There is no fructose friendly formula available in Canada. I shouldn't really say nothing available ... but the only fructose friend formula that we can get is extremely expensive and only covered if you have Hereditary Fructose Intolerance (he would only have Dietary Fructose Intolerance/Malabsorption). Our other option: challenge him on homo milk. Milk is fructose friendly. If he's outgrown his supposed milk allergy then we're all set. So I did some evaluation of the difference between formula and homo milk and it looks like we'll go this route and then give him a multi-vitamin each day to supplement the other things he's missing from the formula. For now we won't think about what happens if he can't handle milk or soy.
We're really grasping at straws, hoping to find something that explains what make our dear boy so unhappy. Sometimes I wonder if it's just psychological. Does he have emotional problems? His happy stages are short lived and suddenly he snaps and that's it ... he cries and cries and wants to be held. He does better when we go out or he's more entertained, but we have notice that if it's for a longer period of time then eventually the novelty of that also wears off. He's definitely a mommy-suck which makes me wonder at times if he just cries for attention, but really ... cry that much for attention? Yet he's not a true mommy-suck. He's fine if I go away, fine with other people, etc. But when he's miserable he prefers mom. We're at a lose what to do with him, but we can't just ignore him either.
So here's to hoping if I complain how bad he's doing it will turn around and all be good!! :)
Our little mess maker. Although he's getting better, he still loves the recycling box and is often found looking in there for his favourite - pop cans !
It is so discouraging to discipline him when he's "being good" (as in not crying) and having fun (often if you discipline he cries ... and then doesn't stop - that's it for playing and having fun) ... but the wax paper, cling wrap and foil are no-no's.
4 comments:
What a puzzle that little guy is!!
Does Matthew cry non-stop when he is out and about or at someone else's house? In the church babysit, etc?
Steph, I admire your patience. I will pray that you will be able to continue to have it!
Grrrrr... I'm sure frustration doesn't even begin to describe your feelings. Praying for an answer for you! If you want to get out with him, come on over any time! (unless my kids are sick, of course...)
Frustrating for sure. He sure knows how to put a spin on his family, hey? Hope you get some inkling of what's going on after the test results. Steph, you are an amazing mother, trying to figure this all out and holding it all together. Hope God provides some answers for you.
Lisa
When we go out he's often good. At church most of the time I tell them to just give him a bottle if he's cranky ... it's not uncommon that I come back and he's had part of a bottle. But I find the church babysitting can be overwhelming even for a good kid so that's a hard gage.
When we go out visiting he's mostly good. He plays well and enjoys "new" toys/surroundings. Sometimes I say I just need to socialize more ... but I do have things that have to get done and can't cater to him either. We have found when we do longer visits then he does get cranky, clingy, hang on my leg, wants to sit with me. But most visits are not that long so he does well.
I remember with James we would get frustrated with him and say "there's nothing wrong with him, he's quiet if you hold him or if he's beubg entertained or out 'socializing'". So although this statement could be true, we're a bit more leary on branding Matthew.
Matthew is also much more miserable then James was. By 1 year old James had gotten over his crying and was a content child ... so we know that the level of a child's contentment is not always a proper gage. Therefore making it hard for us to decide whether to ignore Matthew or try to understand what's he's telling us with his crying. We go through stages ... for a while we tolerate and ignore and then some little cue tells us to pay attention and leaves us wondering again.
I continue to pray for a day when we can look back and joke about the unnecessary stresses he caused.
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