update on my 10-year-old
#184533 - 06/08/05 06:47 AM
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zebras
Reged: 04/15/05
Posts: 31
Loc: Vermont
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I want to send out a big THANK YOU to everyone who helped me with my earlier posts about my son Zane. He suddenly developed GI symptoms March 4th, went though many many tests including a gastroscopy/colonoscopy, and was finally diagnosed with IBS/functional dyspepsia in April. His pain was constant. He missed a month of school and seemed like he had utterly lost his spirit.
Well, he is now 98% better! He hasn't missed school or had to lie down at school for over a month. He still has abdominal pain sometimes, but it's generally limited to night and early morning. His rambunctious, enthusiastic spirit has returned! He hasn't even used his hot pack in a couple of weeks. We have expanded his diet slowly, and he seems to tolerate most raw fruits and veggies fine. Cooked corn and green beans may be a problem. He is not on a SFS. We tried acacia and he got much worse; it's unclear if it was the acacia or something else, but he's doing so well without a SFS that we don't see the need to reintroduce it at this point (he hated Citrucel and Benefiber made him worse). He takes Bentyl and 1 peppermint cap at bedtime. He also sees a therapist who was going to do hypnotherapy on him, but Zane couldn't keep his eyes closed, so he's using more subtle suggestive language rather than hypnosis.
School is over next week, and our plan is to further expand his diet when there is no risk of missing school. He really misses real cheese, so we are going to cautiously reintroduce dairy. I know this goes against all the advice on this board, but his IBS is so atypical, and he is so stable now, now I think it's worth the risk. I know there are people with IBS that are able to tolerate dairy in small quantities; everyone is different. We are looking at it as an experiment.
I am just so grateful that I found this site. Everyone here has been so helpful and I found so much support and advice. It has made a huge difference in helping us cope and helping Zane get his life back. Thank you SO much.
-Annika
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Of course we don't recommend any dairy at all, BUT if you're going to try it as a treat, this is what I recommend. Try just one or two small pieces after a safe meal. Don't overdo it. By the way, there are tons of yummy soy cheese substitutions that once you get used to them, they really are OK. Try buying a few kinds this summer. I buy soy parmesan cheese all the time. I love it. It's very convincing on spaghetti, etc. It even melts. There's lots of kinds of soy mozzarella and cheddar, too. They come in blocks and slices for sandwiches. Also, there's an amazing tasting pizza that has soy cheese on it that irresistible. Amy's brand soy pizzas are divine. Try that for him. He'll love it! Or try making your own pizza and sprinkle soy cheese on his part.
With the acacia, did you start him on a really small dose and work it up VERY slowly? Usually bloating and problems come when you try too much too quickly. You might want to try starting with 1/4 tsp and increasing by 1/4 tsp each week. This should eliminate the side effects.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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Thanks for your advice, Alicia. I could only find one dairy-free cheese substitute, and my son hated it. I found several other soy and rice cheeses in different varieties, but they all had dairy (casein) in them, usually as the second ingredient. That seems kind of pointless - why make a cheese substitute if dairy is the second ingredient? I live in a rural area and don't have access to a large HFS with lots of choices; our little food co-op has Amy's pizza with real cheese only. My son is lobbying hard for dairy, and he understands that it's taking a risk. As long as he won't miss school, I think it's his decision. I will make sure he goes slowly and as safely as possible. At least if he does get worse, we will know that it's a definite trigger for him.
I may have started the acacia at too high a dosage. I can't remember now if it was 1/4 tsp or 1/2 tsp. He had been taking Citrucel for a couple of weeks when we switched to acacia.
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Yes, almost all soy cheeses have casein in them. There's a reason. They taste like crap without it. The ones with casein taste much better. It's the lesser of two evils. Try a few different brands. And also, keep in mind, that just because your son doesn't immediately have problems after the chesse that it doesn't effect him. It can wreak havoc on the system a day or two after as well. So if he starts to destabilize, there's the reason.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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