|Aug 22, 2009|
HELP FOR MY CHILD IN PAIN!!My first child Christian has a rare genetic syndrome, partial trisomy of 4p which resulted in abnormal development in all areas. He has complete corpus callosum agenesis. no speaking and is very developmentally delayed in general. He uses PECS for communication, moves , feeds and walks around independently. The thing that has always made his life hard for him is his feeding issues. He was not able to nurse and now he chews okay but ocassionally chokes on some food because he fills his mouth too much. His reflux started as a baby , around three months old. He cried a lot. When he started eating solids it was even worse (although he wa supposed to improve). His reflux filled his mouth and he just swallowed everything again or spitted part of it. He used to spend the whole night crying and we would sit there and watch helplessly while the food kept coming to his mouth again and again for hours, this could go on for five hours or more after eating. The pediatric gastroenterologyst gave him all the regular medicines for reflux assuming it was a motor problem. None worked. We were about to operate him, a Nissen one, but we did not do it because me and my husband felt this reflux could be related to food allergies. He turned out to be celiac and he also has multiple food allergies. With a special diet the reflux DISAPPEARED COMPLETELY for more than a year. Now the nightmare started all over again. He has again reflux as before, that means, his mouth fills with food for hours after eating. Not evertytime he eats, but everyday. We went through all the medical testing again to discard infections, parasites and such. We even did allergy testing again and turned out he is not allergic to anything anymore! which is kind of crazy. The doctor says the results are normal since he has been on a restricted diet. She advices that I should start feeding him anything, only one food at a time. The point is what about the reflux? he is having reflux now, wonīt he get worse if I introduce foods he was supposed to be allergic to? afterall he stopped his reflux because of the diet, nothing else worked, just the diet. Another thing is that he has candida, overgrowned. The doctor says I should do nothing about it, since anti-fungus medication could worsen his reflux. But what it candida is responsible for his reflux?? CAN ANYONE HELP ME?? HAS ANYONE GONE THRUGH A SIMILAR SITUATION? I am from Spain but I live in Mexico, sorry if my English wa snot very clear. THANKS!!!!!
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|Aug 22, 2009|
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
|Vanesa, I have a child who also had reflux as an infant and it seemed to go away. Then he had a flare-up at age 8 and was pretty miserable, we found out he has celiac and is lactose intolerant, and it seemed to clear up again. Then right before his 11th birthday it came back again, this time it was really bad. We ended up having him in Prevacid for a little over a year, which really helped. Now he's medication free and he is doing great, but he does still have food sensitivities. Have you tried medication again? For my son, it took 2 full months before he felt better on the Prevacid. If it were me, I think I'd go see his GI doctor and maybe try to see if he or she can prescribe something that will help, and I think I'd wait to try trialing different foods until he's feeling much better with the reflux. He could also not have food allergies but be reacting to a sensitivity...or is it possible that he's getting gluten in his diet through something unusual? My son's first reaction to gluten is always bad reflux. (((hugs))) to you, it's a frustrating disease to deal with! Please let us know how things are going, there are a lot of moms here with tons of allergy experience as well as the reflux problems, and I bet someone can help you sort it out! (and by the way, your English is wonderful!)|
|Aug 22, 2009|
|Thanks so much Rissaroo!! I agree with you that no matter what the allergologist said, this is not the right time to start foods. I think itīs much better to wait till he gets better.My hope was that the allergy testing showed new allergies but it did not. Of course, he could have grown intolerant to one or some of the foods on his restricted diet and that would not show in testing. That was my first thought... and I tried eliminating different foods but no resulte either, I could not a find any pattern and he keeps regurgitating.
Also, at leats every two weeks he gest very bloated and burps with a very bad smell as if he had an infection on his tummy but he has not. I wonder if this has to do with his having candida too.
With regards to medication, he did took several...with no result whatsoever unfortunately...anyway I donīt know exactly what Prevacid is, he is having Nexium mups as antiacid and no medication to improve his motility (since none worked for him) but I īll ask his doctor and see...
He was born in Spain, then we were in the States during his first year of life and then we came to Mexico...doctors from three different countries have seen him and they just cannot get a diagnosis for the cause of Christianīs reflux...it is as you say pretty difficult for all of us and especially for him.
Itīs great that your son is feeling better! HUgs to you too and thanks for taking the time to share and write to me!|
|Aug 22, 2009|
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
|I'm not sure how to help, other than possbily add in a probiotic for the candida. Probiotics are not antifungals - they're beneficial bacteria to help re-balance the gut flora. The more strains, the better. I know of one company that make a detoxification formula with 14 strains, I think (Klaire Labs line, from www.protherainc.com). The hard part will be finding a type of probiotic that has no allergens, so Klaire Labs may be a good way to go (I think they'll ship internationally, but you may have to call.) Good luck and HUGS! Your English is just fine - we all understand what you've written!|
|Aug 24, 2009|
|just read your post and my first thoughts were to try probiotics too with your child's issues with yeast. our daughter is 15months with severe reflux. has done really well on probiotics, miralax for constipation and compounded prilosec. i posted a little while ago that we have been feeding her her solids in a new chair our occupational therapist loaned us and it has made all the difference in her keeping the solids down. VERY upright and feet firmly planted on the foot rest.
i just sent off some of her hair for hair analysis to see if she has any toxins or deficiencies. our local compounding pharmacy did this for me. have you thought about doing blood work to see if anything shows up there?
we saw an allergist about a month ago. a tested negative to 20 things, but she wanted us to do a scope and rule out EE. we had to cancel the scope because she got a really bad cold, but will probably do soon.
have you registered with unique, the rare chromosome disorder support group? also have you registered with rareshare.org. you may find some answers there with the gentic syndrome. they are both wonderful sites/groups.|
|Aug 24, 2009|
|one other thing .... i have been doing some research on a multivitamin for our daughter and someone had recommended rainbow light to me. they had had good luck using this product with their child. my goal was a vitamin that was "citrate free". UPS just dropped off at my door and i am trying it in her 3 pm bottle. just pulled their website up and they have a candida cleanse too as one of their products. just wild that it was one of the first thing that popped up on my screen. just thought i would pass it on to you.|
|Aug 24, 2009|
|THANK YOU ALL FOR SHARING YOUR EXPERIENCES WITH ME, yOU HAVE BEEN VERY SUPOORTIVE. IT IS great to be able to talk with people who know what this is all about.. I think I will definitely try with probiotics...he did took for a while sometime ago, but maybe it was not long enough or not the right one...Also I think I will systematically try and eliminate each one of the foods he eats to check for food intolerances or sensitivities...I also did this but maybe not with enough systematicity...||Check with your