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Post by PaigesMom on Apr 14, 2005 19:49:06 GMT -5
I really dunno ;D
I know the surgeon and the Ped GI dr.'s were waiting and waiting and waiting for him to get better on his own. The surgeon said that if he got a stomach virus, it would be extremely dangerous and we would have to open up the G-Tube for stomach contents to come out of. I was so upset that this might be happening.
And with the food. He said no food, that his esophagus would be completely wrapped around his stomach so no contents could get in or out. He said when he was about 5-6 they would reverse it and that then he could eat again, but we would basically have alot of feeding and swallowing issues.
I'm just thanking God, like a miracle, he got better. Now he's perfect. He was so sick, they thought he had a tumor on his vomiting center, or CF or possibly something neurological going on - he was emaciated and malnourished and they told me that he would have developmental delays b/c of it. He does not. He was almost 9lbs at birth, and only 13.9 lbs at 15 months old. It was terrible.
I hope whoever wants to know, can find out the true answer, lol - I'd like to know.
Debbie
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Post by PaigesMom on Apr 14, 2005 14:00:21 GMT -5
I'm just chiming in here, lol --
When my son who does not have DS was a baby, he suffered severe, severe, severe reflux and was a severe failure to thrive.....
We went thru the process of seeing a surgeon, etc. to have a nissen done - the surgeon told me that he would NEVER be able to throw up again, and that he would not be able to eat food by mouth again, except sips of water and he would be fed solely thru a G-Tube. They said a few years later, they would reverse the nissen, but he would have feeding issues, etc. etc. etc.
Thankfully, my pediatrician talked me out of that, and he did get better. All 35lbs of him now.
There must be different procedures!
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Post by PaigesMom on Apr 8, 2005 13:36:13 GMT -5
Does it sound 'throaty' like he has mucous in his throat and when he is breathing in and out the mucous is moving?
Sorry, that's the best way I can describe it.
A wheeze actually comes from the chest, you CAN hear it if you put your ear to their chest if it's bad enough.
I have mistakenly thought the throaty sound (even to this day), was wheezing sometimes.
It could be a sinus drainage thing/small sinus cavity thing, or it could be refux coming up into his throat as well, that will make a gurgle sound.
But I agree with Jackie, I wouldn't wait until Monday to have him evaluated. If it's wheezing, it could get worse.
Good Luck!!
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Post by PaigesMom on Apr 7, 2005 19:41:26 GMT -5
Is it an actual wheezing sound or is he just excited and making noises from his throat?
Both of my kids always made noises. It was the funniest/cutest sound - sometimes a little scary though wondering what they were and trying to figure out where they were coming from (ie. throat or chest)
Good Luck!
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Post by PaigesMom on Mar 30, 2005 17:18:28 GMT -5
CC~ Have you checked your PM's?
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Post by PaigesMom on Mar 28, 2005 21:21:42 GMT -5
Susan ~ You were so right about Dr. Capone. He has an excruciatingly painfully long waiting list BUT, I talked to him at the confrence and he was willing to see Paige that very next week. To soon for me, but we are going in April, and not that I'm happy that I *HAVE* a reason to go see him, I am happy I am seeing him, if that makes any sense, lol. Again, if anyone is interested I have ALL OF THAT information that I'd be happy to copy and share with you all.
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Post by PaigesMom on Apr 7, 2005 19:37:50 GMT -5
Hi - basically you're right. She might have had some gluten ingestion already because gluten is in so many things. It's not only wheat, oats, barley and rye - but it's the byproducts there of - and most things have some sort of byproduct of a grain included. Including food colorings, juices - if you are really interested in finding out what ingredients are safe ingredients, you can go to www.celiac.com and look for the lists they provide. To be honest. I didn't even really worry about Celiac disease with Paige. We had her tested - a year late actually - at age 4 - last summer and she came back positive with bloodwork and then we went on to do the biopsies. MOST people, DS or not, dont even know they have it. So I guess in order to answer your question, I didn't wait to feed her certain things at all and I started solids just a few months later than I guess a typical child would have - around 7-8 months we started. I'm happy to answer any more questions you might have. Debbie
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Post by PaigesMom on Apr 7, 2005 13:34:48 GMT -5
Paige presumably has Celiac disease. Celiac disease is VERY hard to diagnose accurately.
Blood tests can be inaccurate. In order for a Celiac blood marker test to be positive the body needs to have gluten in it - and alot of it. There are also several different tests - TTg, IGg and an IGa test.
The only accurate testing is a biopsy. Celiac blood draw is recommended at age 3 under the DS heath guidelines.
If you found a dr. to do it now, you would probably be wasting your time.
Does she have symptoms - diarrea, vomiting, failure to thrive, constant crankiness, arching - things like that? Especially the failure to thrive - if she doesn't, I think you'd be better served waiting.
Debbie
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Post by PaigesMom on Jan 28, 2005 23:04:52 GMT -5
Hi, I am going thru this with my daughter right now, who is 4 1/2. She has severe constipation issues that go well above and beyond what most people with ds have. She HAS NEVER had a bowel movement on her own, without some sort of 'intervention' (and there have been many different types) including during infancy. I have been fighting with dr.'s for years on this. As recent as yesterday I had her at a new GI and they are going to do some further testing - but not yet a biopsy, an ano-rectal myrongimy test, where they measure the pressure inside the rectum by using a bulb which they inflate with air simulating stool to see if he rectum responds, indicating the presence of nerve endings. UGGH. If this test is positive then they will do the biopsy. They said she has 'megacolon', so they think she does, something with insurance not paying for a biopsy until this is done.
I do not have any personal information on the results of surgery, however I have a friend who has a son with DS, who has had a pull thru and he also had an imperforate anus (born without one). He is on a bowel management program and still has some leakage but is definately better.
Good luck. I'd like to hear more about your experiences and how they diagnosed your child with Hirschprungs, if you dont mind.
Debbie
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Post by PaigesMom on Jan 30, 2005 9:45:11 GMT -5
Hi, MRSA is 'methacyllin resistant staph aureus' - basically it is a staph infection that is usually colonized in the nose and it is resistant to any antibiotic that is methacyllin based - ie. any penicillin derivative or cephalosporin type of antibiotic. There are about 2 that can cure it - Vancomyacin being one of them. It used to be strictly thought of as only being found in nursing homes or healthcare facilities, but the CDC believes that about 30% or more of the general population carries MRSA in their nose. It's never a problem unless it becomes 'active'. It's easy to transmit, some think it will become the next epidemic. My BIL suffered severe sinus infections, chronic, that antibiotics wouldn't cure. They would get better but then a couple of weeks later back full force. Gave him sore throats, tons of drainage, just miserable. He was swabbed by the ENT , came back positive for MRSA and then sent him to an Immunoligist for getting it back at bay. Here's the link from the CDC www.cdc.gov/ncidod/hip/Aresist/mrsafaq.htmIf you search Staph or MRSA or Staph MRSA you can find more info. Good luck, it's just a thought. Debbie
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Post by PaigesMom on Jan 28, 2005 17:08:16 GMT -5
It's probably none of my business, but I was wondering if you have ever had Chris's nose swabbed for Staph MRSA?
What he is/has been going thru is so similar to my BIL, if not exactly, and they finally diagnosed him with MRSA.
Just a thought.
Debbie
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Post by PaigesMom on Jan 7, 2005 22:42:27 GMT -5
OMG, Staci, it always seems like Aidan and Paige could be twins. She has just started grinding her teeth like mad AGAIN, about a month ago. It started off slow, but now it's a constant thing. I say "no teeth", but I don't even think she realizes she's doing it, and I am serious. She seems surprised each and every time I say it to her, and her younger brother is now also saying it to her as well.
I have no idea why. The pediatrician says it wont hurt her teeth. ST and OT say it is sensory, but WHY NOW, what else is going on different?
I totally feel your pain. I'm looking for answers on this currently right now, so if I come upon any, I'll be sure to share.
Hope everything is going great with you!
Debbie
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