Saturday, December 6, 2008

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!


HH said...

Wow Steph, quite a blog. You have certainly have something to deal with here. Disappointing that her special diets are not really doing that much. Must get a little disheartening after a while. And yet you carry on, onward and upward as they say. I so hope that she can be helped soon. This holistic thing sounds a little iffy, but maybe given time it may show some results. We hope and pray. We hope too, that she doesn't have depression issues, but if she does, she can be helped with that. And with loving parents like yourselves, she can and will be helped. We will remember your family in our prayers.
Take care.

Liz and Cooper said...

Hi Steph,

I think Fructose Malabsorption (if that’s what our kids have) is such a new frontier, hence the reason the medical fraternity don't quite know how to help. We as parents are really like the pioneers in this whole journey. I think given the circumstances any avenue that improves a child's health and happiness is worth pursing. That's all a parent can really do. It's good to see photos of Rebecca, she looks like a gorgeous girl. Give her a hug from us.
Liz and Cooper

amymom24 said...

Sorry this is still causing so much frustration and confusion. It sure would be nice to get a break, wouldn't it. Praying for you and for Rebecca!