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Old 03-30-2013, 09:42 PM   #1
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Vitamin D deficiency...

My 20 month old has been seeing a Ped GI. He has some absorption issues. He also has pancreatic insufficiency. He has eosinophils in his esophagus, some in his small intestine. He has trouble gaining weight, he cannot gain without pancreatic enzymes. He has chronic constipation that he takes a full cap of Miralax a day for. His colon is enlarged and his abdomen is distended.

All this and the Ped GI is not sure what diagnosis he fits so we treat the syomtoms. He takes a vitamin with added D every day. His Vit D level was 25 last August, 22 last November, and last week he tested at 16. It was the 25 hydroxide test. 16 is listed as true deficient, above 16-25 is insufficient.

Has anyone dealt with this? He takes a D vitamin but his levels are going down. The ped has a call into the Ped GI but one was out last week and one out next week. So we wait until a week from Monday to see what the ped GI wants to do.

He did have a fecal fat test and that was normal. But we don't eat a high fat diet. His pancreatic enzymes came back at the lowest normal level this time instead if below like last August. I am at a loss and from what I have read we may be headed to infusions of Calcitrol.

He also had a significant number of blood tests that were off but not severely. It suggested calcium was being leached from his bones. Also suggested he may be possible pre-celiac. I can't even remember all the tests that were off. His cystic fibrosis test was negative though. He has had blood tests, stool tests, EGD, and colonoscopy. I just want answers and concerned about his bone development and his vitamin D deficiency.

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Old 03-30-2013, 10:51 PM   #2
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Idk if it could be related for sure, but distended tummy, bowel issues, malabsorption ect seem like symptoms of Celiac's disease. Has he been tested?? I'd do it right away if not!
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Old 03-30-2013, 10:59 PM   #3
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Re: Vitamin D deficiency...

I don't have much to offer help wise but have they tried him on Aquadeks? That is the vitamin ds's pediatric GI recommends for children with malabsorption. It is over the counter but difficult to find. I usually order it online.

My 8yo has bad motility problems as well. I find stool softners by themselves just do not work. I mean I could give 2 weeks straight maximum dosage of Kristalose and get zero output. Thankfully Magnesium Citrate works really well where stool softners fail other wise we would be doing hospital clean outs every few weeks. Magnesium Citrate isn't a great maintenance bowel regimen but what are you going to do when maintenance bowel regimens fail? I am getting ready to talk to the pediatric surgeon to see if he has better ideas since they deal with severe bowel dysfunctions in their practice. Plus ds's GI pulled some strings and got us on the case load of the top pediatric surgeon in our area so I really have my hopes up. I will say I have consinderied a cecostomy because having to induce diarrhea is starting to cause electrolyte imbalance problems but that is such a big step I'm not sure if it is warranted yet. Radiological tests and lower colonoscopy has shown no physical blockages so pseudo obstructions from dysmotility are the most likely cause in our case especially since he can't even pass the barium from the radiological tests (confirmed via x-ray 2 months later).

I wish I had better advice but honestly I feel just as lost as you and every day is struggle to manage the newest GI problem. It is one step forward and two steps back.
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Old 03-30-2013, 11:43 PM   #4
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Re: Vitamin D deficiency...

Have they tested him for Hirschsprung's Disease or done a rectal biopsy/barium enema/anorectal manometry? Sometimes even those tests can be wrong and a full thickness biopsy is required. Has he always had constipation issues? Have they checked his sphincter? I've heard of several children with a late diagnosis of both. Mekat, there are several natural things we do for our son to speed up his motility that I can share with you but I'm kind of shocked that he still hadn't passed the barium 2 months after the fact, that he's 8 years old, and that you still don't have answers. So sorry that your dealing with that

OP it could be something as simple as food allergies and a leaky gut. That was the case for my younger son. He stopped gaining weight, was chronically sick, dark circles, and developmental delays. We eliminated the foods he was allergic to, healed his gut, and he started thriving. Gut dysbiosis can cause a TON of issues

Baby Center has a group for mom's of kids with Hirschsprung's Disease and other GI disorders. There's a lot of great information over there. Most of the moms will tell you that the doctors treating our kids don't really know what they are doing. 1 surgeon, 3 GI's, and 4 pediatricians later we finally found a way to help our oldest. He still has some struggles but overall he's healthy. I'm happy to share more information but I think you'll learn so much more by joining the group. It sounds like there are some serious issues going on with both of your kiddos. Feel free to message me
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Old 03-31-2013, 03:37 AM   #5
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Originally Posted by mrseum
Idk if it could be related for sure, but distended tummy, bowel issues, malabsorption ect seem like symptoms of Celiac's disease. Has he been tested?? I'd do it right away if not!
Some of his blood tests were indicative of possible early Celiac. But nothing glaring yet. His IGA on his latest blood test was normal though. They said he is too young be to able to tell for sure yet.

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Old 03-31-2013, 03:42 AM   #6
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Originally Posted by 7mom7
Have they tested him for Hirschsprung's Disease or done a rectal biopsy/barium enema/anorectal manometry? Sometimes even those tests can be wrong and a full thickness biopsy is required. Has he always had constipation issues? Have they checked his sphincter? I've heard of several children with a late diagnosis of both. Mekat, there are several natural things we do for our son to speed up his motility that I can share with you but I'm kind of shocked that he still hadn't passed the barium 2 months after the fact, that he's 8 years old, and that you still don't have answers. So sorry that your dealing with that

OP it could be something as simple as food allergies and a leaky gut. That was the case for my younger son. He stopped gaining weight, was chronically sick, dark circles, and developmental delays. We eliminated the foods he was allergic to, healed his gut, and he started thriving. Gut dysbiosis can cause a TON of issues

Baby Center has a group for mom's of kids with Hirschsprung's Disease and other GI disorders. There's a lot of great information over there. Most of the moms will tell you that the doctors treating our kids don't really know what they are doing. 1 surgeon, 3 GI's, and 4 pediatricians later we finally found a way to help our oldest. He still has some struggles but overall he's healthy. I'm happy to share more information but I think you'll learn so much more by joining the group. It sounds like there are some serious issues going on with both of your kiddos. Feel free to message me
He had rectal biopsies done in Nov and he did have ganglion cells seem in 3 out of the 4 biopsies. His issues really started when we introduced solids at about 8 months old. Hey have spiraled from there. He ha had the Rast blood tests for some food allergens, mainly milk, casein, whey, lactose and they came back fine. His sphincter is fine. The stool was in a place they rarely see constipation in. It was in the transverse colon which has made his colon enlarged and his belly distended. He sees a ped GI at one of the top 10 nationally ranked Children's Hospital. We are going to redo all testing this summer and se where we are compared to last August. It is just frustrating.

I am not sure how they will treat his vitamin D deficiency though for now?

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Old 03-31-2013, 05:06 AM   #7
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Quote:
Originally Posted by 7 for now

Some of his blood tests were indicative of possible early Celiac. But nothing glaring yet. His IGA on his latest blood test was normal though. They said he is too young be to able to tell for sure yet.

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Absolutely do not believe that. If he's showing symptoms he is never "too young" IMHO!! It's like saying a 1 year old is "too young" to have asthma when it can be glaringly obvious that they have it. He would need an endoscopy to correctly diagnose- has he had one? If not I would demand one at this point.
Have you cut wheat & gluten from his diet, or tried? You may do a simple elimination diet for a few months to see if he comes around.
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Old 03-31-2013, 06:42 AM   #8
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Did they do a sweat test for CF, or did they look at the genetic markers? Usually it takes 2 gene abnormalities to cause CF, one from each parent. But I've read that some people with only one of the mutations will have mild symptoms similar to CF. If they have not done so, I would ask for a genetic analysis.
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Old 03-31-2013, 07:50 AM   #9
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Originally Posted by mrseum

Absolutely do not believe that. If he's showing symptoms he is never "too young" IMHO!! It's like saying a 1 year old is "too young" to have asthma when it can be glaringly obvious that they have it. He would need an endoscopy to correctly diagnose- has he had one? If not I would demand one at this point.
Have you cut wheat & gluten from his diet, or tried? You may do a simple elimination diet for a few months to see if he comes around.
He did have an EGD in November. That is where they saw some slight abnormalities. He also had eosinophils in his esophagus and small intestine showing on the biopsies from the EGD. He also had a colonoscopy at the same time.

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Old 03-31-2013, 07:53 AM   #10
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Originally Posted by PurpleFluff
Did they do a sweat test for CF, or did they look at the genetic markers? Usually it takes 2 gene abnormalities to cause CF, one from each parent. But I've read that some people with only one of the mutations will have mild symptoms similar to CF. If they have not done so, I would ask for a genetic analysis.
They did the sweat test. We have 9 kids so I would think if it was a genetic thing at least one other kid would show symptoms?? We have absolutely no one in either mine or dh's family with CF. when we do the next blood work I will ask for the genetic analysis though. He has never had any respiratory symptoms. Just all GI.

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