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Old 07-06-2012, 11:23 AM   #41
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Re: DS not growing (height or weight)? Dr. update post 13

Housefullofgirls....just wondering how your little on is. How did the urine dip end up and did she have her scope done yet? Been thinking about you guys (girls, lol) and hope all is well.

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Old 07-15-2012, 04:46 PM   #42
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Re: DS not growing (height or weight)? Dr. update post 13

Hi momma thank-you I came here to update & post my feelings and saw this. We had her first GI appt a little over 2 weeks ago at JH childrens center. They did a bunch of labs/stool sample. The GI called me this past Monday and said there were some abnormalities. Her bi-carb electroleyes were very low and her neutrophils were also low. so looks like we have at least 2 issues. The very low bi-carb electrolytes either mean Congenital Sucrase-Isomaltase Deficiency or like lactose intolerance although she is diary-free. The GI is hoping the neutrophilis which was only 780 is just her fighting something off but she wasn't sick so who knows. But she had us go in Friday for a check to see and if it's lower we have to see an immunologist before the scope Tues. I'm so nervous of what the results of the scope will be. I'm kinda sad too. But overall I'm happy we are so much closer to a diagnosis. Ella is now allergic to all milk subsitutes so getting even more tricky
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Old 07-17-2012, 11:23 PM   #43
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Re: DS not growing (height or weight)? Dr. update post 13

Just copied & pasted from the e-mail i sent out to family tonight:

Ella was a good little trooper today. She had her endoscopy this morning. On her medical papers today it says Preoperative Diagnosis: Gastroesophageal Reflux Disease, Failure to thrive & abnormal stool pH (sugar malabsorption). The malabsorption is a huge problem per the GI; this is or part of the problem making her failure to thrive. The malabsorption is either genetic (congenital sucrose isomalt...ose) or food related like Eosinophilic Esophagitis (EE), celiacs. They took biopsies of her small intestine (looking for celiacs), stomach (to diagnosis or rule out congenital sucrose isomaltose), and esphagus (looking for EE). So everything appeared normal in color, the small intestine bled more than expected showing it is inflammed samples being flown to a special lab in CA & results will take 7-10days. Some of these conditions are patchy like EE. Meaning looking normal but are sporadic all over the esphagus so it's a hit or miss. Hopefully, we'll get a accurate hit or accurate miss. Ella was pretty wiped out but she's doing good. Looking forward for a DX and treatment plan.

So just waiting for results... It's a wierd saddnes. I'm hopeful for a dx but after a dx there is no going back. You can no longer pretend your child is healthy/normal. So it's a wierd tug-of-war with my inner self.
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Old 07-21-2012, 08:03 AM   #44
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Re: DS not growing (height or weight)? Dr. update post 13

Hoping for quick and accurate results! Waiting and not knowing stinks. A dx also kind of stinks, but at least you know what is going on then and are able to work on it. I'm hoping your LO is a very happy, healthy, growing girl soon!
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Old 07-21-2012, 09:43 AM   #45
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Re: DS not growing (height or weight)? Dr. update post 13

I'm glad you are hopefully getting the support and answers to make her life more comfortable.
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Old 09-03-2012, 06:44 AM   #46
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Re: DS not growing (height or weight)? Dr. update post 13

Her scope showed inflammation in her small intestine and reflux changes even tho she's on reflux meds. She had no EOs at the time. She was treated for the inflammation/small bowel overgrowth with meds and we hope that is taken care of now. She goes in her a weight check tomarrow to see.


Wanted to update, a lot has happened. Everything went very downhill 3 weeks ago. She either refused food (from reacting to it prior) or the food she would eat which was safe also she broke out in hives from. Like for example plain white rice hives, any fruit hives, any veggie hives, every single thing was hives It was really scary. She had an allergist appt his past Wed and she's deemed no foods for 2 months. Only BF and Neocate Jr. vanilla is what she's drinking and actually likes it TG After that we will be trialing 1 new food per 7 days starting with veggies. So we shall see where this takes us. She's seeing a prominent allergy specialist at Hopkins in November.
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Old 09-03-2012, 03:17 PM   #47
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Re: DS not growing (height or weight)? Dr. update post 13

Quote:
Originally Posted by Housefullofgirls View Post
Her scope showed inflammation in her small intestine and reflux changes even tho she's on reflux meds. She had no EOs at the time. She was treated for the inflammation/small bowel overgrowth with meds and we hope that is taken care of now. She goes in her a weight check tomarrow to see.


Wanted to update, a lot has happened. Everything went very downhill 3 weeks ago. She either refused food (from reacting to it prior) or the food she would eat which was safe also she broke out in hives from. Like for example plain white rice hives, any fruit hives, any veggie hives, every single thing was hives It was really scary. She had an allergist appt his past Wed and she's deemed no foods for 2 months. Only BF and Neocate Jr. vanilla is what she's drinking and actually likes it TG After that we will be trialing 1 new food per 7 days starting with veggies. So we shall see where this takes us. She's seeing a prominent allergy specialist at Hopkins in November.
I don't know if I've posted this before, but you might try reading the book Gut and Psychology Syndrome and seeing if it might help in your situation. The book talks a lot about intestinal system imbalances and how to help heal it. The idea is to help the system heal over the course of 6 months to 2 years, then reintroduce foods and see how the patient responds. It sounds like your diet is already very strict, so it wouldn't be as hard probably from your perspective to follow the diet in the book.
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Old 10-27-2012, 09:33 PM   #48
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Re: DS not growing (height or weight)? Dr. update post 13

Thought I would update. Things bad. Saw GI Thursday. Being admitted this (stupid hurricane Sandy having us wait)Thursday for NG tube. It's sad but it's a good thing. My little girl really needs this to grow and thrive. She'll have it for 6-8 weeks. After her Nov 15th allergist specialist appt. They will decide if this is permanent and then she'll get the g tube.
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Old 10-29-2012, 08:21 AM   #49
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Re: DS not growing (height or weight)? Dr. update post 13

That is sad Mama. I hope they can eventually get things figured out though, and in the meantime she'll get the nutrition that she needs.
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Old 11-07-2012, 11:51 PM   #50
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Re: DS not growing (height or weight)? Dr. update post 13

Thanks momma I'm a pro now at taking care of the tube/feeds/meds the whole 9 yards. It's really a blessing. She is doing so much better! Already gained 8oz on Sunday when the home nurse came for the first visit. So good. It is still hard to wrap my head around the fact food is like poison to her.





Here she is at the hospital. She does not bother with the tube at all. She's very careful about it. Bad thing is she is on the pump for 17 hours out of the day. But I've figured out how to make it work and she's not bored. She got several new toys out of the deal
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