The problem is, Andrew has a problem. As Gary said so perfectly, his diapers range from bad to extremely bad. Never, ever in his life have things been normal. All diarrhea, all the time. The poor kid also has a hard time falling asleep at nap time and at night time, no matter how tired he is. Many times he'll crash on the floor around 4 or 5, but that's pretty awkward. He has other struggles, and we're working with those. He is absolutely adorable, very sweet, and we are crazy about him, but wow. Poor kid needs to sleep and not have a yucky gut. He has been diagnosed with mild sensory perception disorder, and the occupational therapist (whom he actually doesn't even need to see since he is doing so well) was hoping a gastroenterologist could help us know how to solve the gut problem, help him feel better, and voila, the sleep issues would improve along with the others. We have spent several hundred dollars and lots of time on testing him for the last couple of months and the call this morning . . . latest lab is normal. I guess the other ones that showed things as slightly off improved in all areas. I want him to be normal. He is abnormally cute. However, he has a problem, and it looks like I do not have an answer. Sigh.
We will get through this, of course. I just had to write down my frustrations while Wild Kratts is on. I try my bum off with the good diet bit, but I may have to up the ante. Just so you know, we already limit fat, eat lots of fruits and veggies, are on an eating schedule, eat all whole-wheat bread, have hardly any pre-prepared or processed foods, and use freshly-ground whole wheat flour for pancakes, muffins, etc. Sigh again . . . I hate non-answers.
P.S. Upping the ante includes a variety of things including trying to cut dairy again even though blood tests don't show a problem with it, trying to make homemade sourdough bread for our bread, cutting sugar, cutting gluten even though two ways of testing don't show celiac, and trying a probiotic my sister in law says is a miracle. There are options, but they all involve doing stuff that is slightly overwhelming or expensive when they're all just a shot in the dark. If he had celiac, it would be hard to adjust, but at least I'd know exactly what to do and why. I think the thing is, there are many conditions people can have that have not been identified, but probably the answer to may of the gastro ones is diet. Lucky us it's not a worse problem, we'll be okay.
P.S. Upping the ante includes a variety of things including trying to cut dairy again even though blood tests don't show a problem with it, trying to make homemade sourdough bread for our bread, cutting sugar, cutting gluten even though two ways of testing don't show celiac, and trying a probiotic my sister in law says is a miracle. There are options, but they all involve doing stuff that is slightly overwhelming or expensive when they're all just a shot in the dark. If he had celiac, it would be hard to adjust, but at least I'd know exactly what to do and why. I think the thing is, there are many conditions people can have that have not been identified, but probably the answer to may of the gastro ones is diet. Lucky us it's not a worse problem, we'll be okay.
14 comments:
I am so sorry. You know we've had our share of sleep and gut issues (Hemmroid on an infant?!). I know Evie's issues are the opposite of Andrew's (at least on the gut side) but we were able to get advice from a great herbal remedy store and Evies gut issues are much better. So that's an avenue to pursue. Maybe he needs a probiotic or something?
And on sleep, Im guessing your OT has already made suggestions but have you tried a sound machine, weighted blanket, or melatonin to help with the sleep? Those might be helpful.
If you want to try the sleep specialist Dr. Pfeffer is amazing, but she has a long wait 6-8 weeks ish. She's helped Evie a lot...and we are still working in it.
Have done probiotics in the past when on antibiotics, but not on a regular basis. My SIL had one work great for her daughter for similar issues, so now that we're at zero again, we'll try that. And yep on sound machine, blanket, routine, all but melatonin. I will do the suggestions the OT gave for a few weeks before I pursue further options with sleep. We've had an issue with room sharing that has stopped us from doing all we need, but I guess we'll make Lissy suffer sleep a bit to get Andrew under control . . . hopefully it works before the next couple of hundred dollars . . .
I'm sorry he is having such a hard time & that you are too. Have you tried cutting dairy? My nephew has severe reactions to it although he has been tested for a milk allergy and it didn't show up... Just another thing to try.
We did almond milk and rice milk until he was around two. We noticed a difference when he was one, but by the time he was two it didn't seem to make any difference when we gave him milk. Also, blood tests did not show a problem with milk. However, cutting dairy again is probably part of upping the ante, though an expensive pain in my bum for a lot of reasons, part of which are the having other kids issue. He will not take the special milk thing well this time around. Rice milk for the whole family? Cha-ching . . . Yes, you are absolutely correct, definitely one thing we need to try.
This is really not fun. Iam so sorry you didn't find anything out yet for a definite. Get almond milk just for Andrew and put it in another regular milk container. Then don't buy yogurt for the family for two weeks. That seems to be the biggest thing they love. Maybe it is gluten or something. Or some other allergy that is totally unrelated that has this consequence. Melatonin is pretty cheap isn't it? Why not try? Maybe part of the problem is he just can't relax and so he passes the window of opportunity. Love that cute little "Anju". Or maybe you already know what you are doing and grandma should shut up. Just trying to help.
Melatonin is on the list. Bought a new doorknob that locks the other day, just haven't installed it, stripped his room, and displaced Lissy. I guess I should say exactly what I my plan is if I'm going to vent.
Also, interesting that his didn't show up in the blood test, either, and it still helps. Increases my will to try.
Also, good idea about the milk carton thing. If it helps Andrew, we might actually have to get the whole family on rice milk as you know others have problems . . .
Ugh. You're right--it's good to be normal--but that's frustrating when you know there's a problem and can't pinpoint it exactly. I would be interested in knowing all the details of your plan--it sounds like you have a good one. Sorry it's such a pain!
Okay, if you do want/need to try rice milk for everyone, I found a recipe you should try. You can apparently make it pretty darn cheap, and it's not supposed to be hard at all. Not that you need one more task . . . but it might be worth a try.
http://www.veganreader.com/2009/05/17/how-to-make-rice-milk-and-stop-supporting-rice-dream/
Feel free to skip the massive political/ethical rant at the beginning of the post. I skimmed it for you.
Haha, Gary actually discovered that website in the midst of our rice-dreaming before. I have a friend with Crohn's who eats WAY natural in order to control her disease, as that's really the only thing that works. The medicine made her not be able to move her body at all, it was awful. Anyway, she made rice milk before and said it was awful. It may still be worth a try eventually, but I actually appreciate the added calcium and vitamin D, also. Could buy supplements . . .
My plan is probably not all that great, actually. However, we will try it. I wish the occupational therapist lived with me. Also a chef and maid. We are open to all suggestions, actually . . . I hope nobody feels offended if I already tried their idea. I get bits and pieces from each idea, for example, reminder to get some melatonin right away, the will to try dairy-free even though blood tests say nothing, and the save-an-old-milk-jug idea. I'm using all of the feedback!
It's nice if it's in the milk, but supplements really aren't too hard to take. Especially if you get yummy chewable ones--which is what we do with vitamin D because M needs to take extra. I will make this tomorrow in your behalf and let you know how it turns out. I would do it tonight except that I don't want to be awake for three more hours while it cooks. Anyway, it will save you the effort of testing it out because I know you will regard my opinion. :)
I so understand... I almost prayed Charlotte's test would come back with a Celiac diagnosis so we would just KNOW what we needed to do to help her. Normal is not always the best news. :( I have to say I'm totally leery of the blood testing for allergies because they seemed so completely inconsistent with C's actual reactions. The test indicated she was allergic to soy (and just about everything else), but she did fine with it. The blood test did not indicate Celiac or any gluten intolerance, but we went gluten-free for about a year and added the VSL packets (the probiotic) and that was the miracle cure. BTW, we were already dairy-free at that point because of her milk allergy, which she did grow out of. It just takes a lot of experimentation, which I know means time, money and patience. I really hope you find something that helps!
The UNKNOWN is so rough...I'm so sorry to hear about this struggle! Good luck in all your efforts and I hope you get either relief or answers really soon...
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