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Old 03-10-2012, 07:56 AM   #61
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Re: UPDATE:2/28 Almost 7 years of chronic illness, finally getting help! Many updates

My son has been getting worse as time goes on too. I was really starting to think it was a psychological problem. But he is so small so that doesn't make any since to me. I make him smoothies in the morning that are 2000 cals He gets half in the morning and half in the afternoon after school. This makes me worry less because I know he has already had all of his basic needs for the day and everything he eats is extra (which is a lot!) Does your son eat gluten? My son would wake up every night hysterical with belly pain but it stopped when we eliminated gluten. Its a pain considering I want to limit his diet as little as possible but its has help a lot. It still doesn't explain why he is not gaining weight but at least he in not in pain all of the time any more. His belly is so distended after he eats. It looks like basketball under his shirt. We have seen genetics, endocrine, gi, dietitian and no one has a clue. They thought it might be CF but he has no breathing issues (mild asthma) I don't know. We were going to children's hospital almost every week getting testing done but the last month I have taken a break. This has been going on for 3 years now (hes adopted and thats when he came to us) and I just feel so bad putting him through all of this and having no answers.

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Old 03-10-2012, 09:13 AM   #62
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Re: UPDATE:2/28 Almost 7 years of chronic illness, finally getting help! Many updates

Please read this! I read it yesterday and it scared the heck outa me how every detail matches the both of our boys! I will be asking aout it next visit for sure. They thought it was cf to start with. That was the original name of this thread. He does great with gluten. I compared his labs again yesterday though and that's how i came across this site.
http://www.sucraid.net/for-physicians
It'll help if you have some labs to look at. Be sure to read it all.
Can I PLEASE get your recipe for the smoothie!!!
Thanks for sharing with me hun!
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Old 03-14-2012, 11:52 PM   #63
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Re: UPDATE:2/28 Almost 7 years of chronic illness, finally getting help! Many updates

My son has CSID along with other issues. If you have any specific questions you can email me at shawnamcelveen at yahoo dot com.
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Old 03-15-2012, 05:27 AM   #64
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Re: UPDATE:2/28 Almost 7 years of chronic illness, finally getting help! Many updates

Oh thanks you so very much! I'm going to have them check him for it if they will for me! I may be in touch with you. I really know only what I read on that on site. His symptoms line up so identically with it. Something has to be linking these problems. He's not any better GI wise is why I'm looking up info myself.

The DR. thought because of many of the problems, he had a overgrowth of bad bacteria in the digestive system. He finished the heavy duity antibiotics and still nothing.

Thanks again!!!
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Old 03-15-2012, 02:04 PM   #65
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Re: UPDATE:2/28 Almost 7 years of chronic illness, finally getting help! Many updates

The most conclusive test is done by biopsy. It's a rare disorder, and our previous doctor was certain Grant didn't have it. It has been confirmed by biopsy twice. It's more common to have temporary disaccharidase deficiencies after stomach bugs.
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Old 04-01-2012, 05:46 PM   #66
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Re: UPDATE:2/28 Almost 7 years of chronic illness, finally getting help! Many updates

Sarah, I came across our thread while trying to search threads on cystic fibrosis. Your son has similar symptoms to two of my children (one of whom is almost the exact same age as your Cayden). You need to know, as do the doctors treating your son that cystic fibrosis can be missed on the sweat test. There are thousands of mutations for CF and apparently some of them do not cause the salty skin which creates the positive on the sweat chloride test. My girlfriend has two daughters with cf...both tested negative on the sweat and newborn screen test. But the parents had done genetic testing for infertility and knew they were carriers so the girls were screened as well. The reason I say this is that my sons are now being looked at again for a possible missed diagnosis of CF. CF can also be missed on newborn screen. My infant is being referred for a pancreatic elastase stool test. I think you should request this be done on your son. It measures the amount of digestive enzyme elastase in stool. If something is off with the levels it can point to cf. The Drs could then give him digestive enzymes to help with the absorption of food. It struck me while reading your sons story how many of his symptoms are classic cf symptoms. You also need a specialist that deals with cf....a lot of doctors think they know, but don't. I would have his GI order that stool test pronto....it takes two weeks or so to get results. With everything you are describing I would definitely look into it more. There is also an Ambry genetic screening that can be done. It looks for rarer mutations, instead of the 8-10 most common that are done in the quicker genetic screening. It is an expensive test (not for you, for insurance) but given your sons symptoms, I think it might be warranted. Good luck, mama!! SO sorry for all the run around....it SUCKS!!!
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Old 04-02-2012, 05:45 AM   #67
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Re: UPDATE:2/28 Almost 7 years of chronic illness, finally getting help! Many updates

We go this week. I just wrote that down as well. I'm going to ask him to do this test as well. Thank you so much for takeing the time to share this information with me! I know this Dr. is going to think I am nuts, but something just has to give or this boy! We need to know what's going on. I'm so thankfull for you momas that have offered such helpfull info to me! Huggs.
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Old 04-06-2012, 06:43 AM   #68
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Re: UPDATE:4/6 Almost 7 years of chronic illness, finally getting help! Many updates!

4/6
Here's the new update. The up side is Cayden was back up to 46 lbs. He's now my big 7 yo!

So we have scedualed the fundo sergery. I have weighed all the options and truely believe it will be worth it for him. It's scedualed for the 23rd of this month. The sergion was stern to point out that it will only help with the GERD symptoms, reflux, vomiting, and aspiration. That we needed to find out what was causing all the other issues. So then we went to the GI. We talked for quite a while about my concerns and the issues that have not been resolved. It turns out he did test for csid and it was neg. We will talk more about the possibility of a mutated cf test. We did agree on doing a abdominal ct with oral and iv contrast next wed. They we be looking at the thickness of the digestive tract and such.

Good grief, I hope they figure this out.
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Old 04-06-2012, 10:30 AM   #69
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Re: UPDATE:4/6 Almost 7 years of chronic illness, finally getting help! Many updates!

I sure hope they figure out what is going on soon. It is so hard on little people to be sick and then have to go through all those tests, procedures and doctor's appointments. So NOT fun for a kid I hope it can all be figured out and he will start feeling better soon!
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Old 04-06-2012, 02:38 PM   #70
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Re: UPDATE:4/6 Almost 7 years of chronic illness, finally getting help! Many updates!

Thanks so much sweetie! I hope they do to. I'm tired of watching him go through all of this. With the grace of God the sergery will give the poor boy some relief. Thank you for the support and kind words moma! Huggs!
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