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Post by PaigesMom on Mar 23, 2005 19:31:12 GMT -5
Yes, it's in PA.
C Bean - I'd rather be in mouseworld!!! We're going in October.
I'm thinking the Variety Club services the tri state area - Pat, help me out here....if so, you should register your Emily, this way you can partake in all of the fun, free, festivities with your family!!
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Post by PaigesMom on Mar 23, 2005 17:14:35 GMT -5
I sent my form for the Sesame Place tickets on May 1st on Monday.
Is anyone else going again?
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Hello!
Nov 14, 2003 10:54:10 GMT -5
Post by PaigesMom on Nov 14, 2003 10:54:10 GMT -5
Hi there,
My name is Debbie, I am mom to Paige, 3 1/2 years old who has Down Syndrome.
Paige has had many medical problems during the first few years of life but she is doing great. She has just completed early intervention and has started IU preschool!!!
I have often checked in on this site to see what people were talking about, but I just never joined. So today is a new day....I hope to be of some help to others, and I'm sure I'll be posting my fair share of questions!!
Nice to be aboard.
Debbie
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Post by PaigesMom on Aug 20, 2007 10:39:58 GMT -5
I'm sure this has been discussed here before, but I'm just wondering how many of you give your kids supplements - whether it's EFA's, Nutravene D, zinc and magnesium, or just plain ole vitamins.
If so, what do you give, and how much?
Thanks!
Debbie
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Post by PaigesMom on Sept 13, 2004 9:12:44 GMT -5
Renee,
Not that this makes it any easier, but I know where you are coming from. My Paige wont keep hers on either. I have to say she has gotten much better, and they did change the prescription to make it easier for her, and she also crosses with the glasses on SOMETIMES, but alot towards the nighttime whether they are on or off.
I was told that the crossing was actually her TRYING to focus her farsightedness away - that when you cross, things that are blurry will look better.
I'm not sure what Lauren has, Paige has amblyopia and strabismus - in our case, if the brain decides that it likes one eye more than the other, it will "shut the other eye off" for good, eventually, so as hard as it is, doing everything possible to have her keep them on is well worth it.
Again, I know where you are coming from.
Debbie, Mom of Paige, insurer of 7 pairs of broken glasses and the latest ones scratched when she threw them down on the pavement!
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Post by PaigesMom on Aug 20, 2004 18:29:44 GMT -5
Forgot to add -
Will a tiny amount of gluten KILL a child?
Not on the spot, no.
Eventually --------- maybe, who knows what "tiny bit" was the trigger for the bowel lymphoma. It's like playing Russian Roulette, one never knows.
Yes, it is that serious.
Debbie
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Post by PaigesMom on Aug 20, 2004 18:27:26 GMT -5
Allisa,
The problem with Celiac's is that it is so misunderstood. No, gluten is not "in the air" and you cant breathe it in, that I'm aware of, unless you stick your nose in a bag of flour and take a huff - I think Staci was saying that people who suffer Celiacs and have been on the diet are very sensitive to non gluten free foods. It is very hard to go to a restaurant and find something gluten free, most people end up bringing their own meals with them.
As for any bit of gluten - yes, it is toxic to a Celiac's system, but a whole house does not have to be gluten free. Separate dishes and utensils are fine enough to avoid cross contamination, although The Celiac Sprue Association does recommend separate shelving or a separate cabinet for GF Foods.
Type 1 Diabetes - left untreated, Celiac's can CAUSE it. As with anything you dont have to have Celiacs in order to have diabetes, and vice versa. There are many people with Down Syndrome who have both and it has a direct correlation to the 21st chromosome. I am certainly not downplaying diabetes at all, but Celiac is very serious.
Symptoms - there are lots of symptoms, (diarrea, comstipation, failure to thrive, vomiting, food allergies, food intolerances) but there are also people that are asymptomatic and have no symptoms or symptoms that are diagnosed as something else. Celiac's is the number one misdiagnosed GI condition in the US. It is in the DS health guidelines to have our kids checked for it every 2-3 years or so (I believe) as it can show up at any time in life and there is a 30% higher incidence of it in the DS population because it is autoimmune and the 21st chromosome houses autoimmune disorders - 3 #21's = higher incidence.
Hope this info is helpful to you.
Debbie
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Post by PaigesMom on Aug 17, 2004 11:12:40 GMT -5
Kathy,
The person who told you this is absolutely NOT misinformed. ANY gluten/wheat/rye/barley and oats (not oats themselves, but the possiblity of cross contamination) or any byproduct thereof, causes an immediate toxic reaction in a person with Celiac. Whether or not they "show signs" - by this I mean visible sickness, the damage is being done inside their body. Untreated Celiac can cause small bowel lymphoma, type 1 diabetes and a host of other autoimmune disorders. If a person "cheats" they have done themselves a huge injustice - basically because the system reacts immediately, all of the gluten free eating they have done has been for nothing.
I know this because my daughter was just diagnosed Celiac about a month ago and it is a HUGE responsibility and undertaking to make sure she gets absolutely NO GLUTEN.
Hope this helps.
Debbie
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Post by PaigesMom on Jul 31, 2004 9:20:23 GMT -5
Hi,
This may sound like overkill, but I'm going to suggest the possibility of Celiac Disease, just in case. The symptoms you state, including the large infrequent bowel movements are classic signs of Celiac's. The doctors wont/dont generally do the bloodwork or biopsy for it for a child under ONE, since they really dont consume gluten yet, BUT since you are breastfeeding, and most likely your diet contains gluten, your baby is also getting it.
Most doctors "ignore" the classic signs (I know this personally) especially when it's not diarrea, but constipation, however 15% of all kids with DS who have Celiacs present in severe constipation that they just treat for the symptoms, however, if your child is not gaining weight and doesn't have reflux and is eating, I would definately have it checked (bloodwork done), even if they say there is no reason.
Debbie
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Post by PaigesMom on Jul 27, 2004 17:36:40 GMT -5
I think the back is a harder place to bruise, and the stomach is sort of a strange place to get a bruise, but again, with kids, anything can happen.
Both Paige and my son have gotten bruises under the armpit (they may have been grabbing each other or something), and they both have had bruises on their sides (again, probably from grabbing or falling into things).
I dont really recall any on the back itself - lower back like diaper area and below, yes, but not on the upper portion of the back on the kids, but I, MYSELF, have had brusies there from banging into doors etc. (I'm sort of a clutz I guess, lol) and also bruises on my stomach, from what, no clue.
My skin is not "mottled", nor is theirs, I just think I have sensitive skin, and they inherited it.
I do, however, mostly because I'm paraniod, lol, keep an eye on them and make sure they're turning the right colors and go away within a reasonable period of time.
I will say that Paige's bruises stay much longer than my sons or mine, and I have wondered why, but they do eventually go away.
Hope this helps!!
Debbie
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Post by PaigesMom on Jul 25, 2004 19:27:21 GMT -5
I also bruise very easily and most of the time have huge bruises that I accidentally just notice and have no clue as to where they came from.
Both of my kids bruise easily as well. Paige's legs are covered in bruises from the knees down and so are my sons, also bruises on the forearms as well.
I know it looks awful, but I wouldnt worry about it, unless the bruising shows up in strange spots that wouldn't usually bruise - ie. stomach, back, etc.
Debbie
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Post by PaigesMom on Jul 1, 2004 15:19:35 GMT -5
Ashlea,
Thank you! I am going to email you privately rather than keep going on the board. Paige has alot of the same symptoms Chandler did and I would love to hear more about your experiences.
Debbie
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Post by PaigesMom on Jun 30, 2004 19:13:40 GMT -5
Laura,
THANK YOU so much for all of those websites you posted and your time. That was really sweet of you!!!
Paige went to GI on Monday - they still dont think she has short segmented Hirschprungs, but they said IF she did, they would not be able to surgically correct it anyway and her constipation would just have to be managed with food, fiber and laxatives.
The GI dr. said that if she has Celiacs that the constipation factor would have been the true key for her. She said the milk/soy/rice intolerance might be related but I could find out that it is still separate.
I asked her what the chances are that the blood work could be false. She said that the "newer" celiac panel as well as the older one was performed and they were both positive. She said that it is always possible but the chances are probably about 2% that she DOES NOT have it. Not very good odds, huh?
Well keeping my fingers crossed and sending prayers up on this one. I'm waiting for a date on the endsocopy - they told me August 17th - not a chance, to long a wait for me, so they're trying to work her in.
Thanks again for all of your time.
Debbie
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Post by PaigesMom on Jun 27, 2004 8:05:47 GMT -5
Robin,
That is totally nuts! Isn't it a shame how we have to even educate the medical professionals!
There is a blood test called a Celiac Panel, and it is NOT in the same T4 and TSH tests that they run for the thyroid, lol.
The funny thing is that I had to actually argue with my dr. to get the panel done this time - boy was she apologetic. I guess I'm glad that "just because" of DS she isn't using her as a medical experiment and testing her for everything that comes down the pike, but at the same time my pediatrician has to realize she has a "higher" chance of CERTAIN things because of the DS -it's a double edged sword if you know what I mean.
We go to GI tomorrow, I'll keep posting.
Thanks for your support!!
Debbie
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Post by PaigesMom on Jun 26, 2004 8:32:14 GMT -5
Thanks for your responses. Apparently there are 2 blood tests that are performed in the panel and both of hers are positive. I know alot of kids that have come back one positive and one negative and then a negative biopsy and if hers was like that I probably wouldn't be giving it "to much" thought at this time. Robin M. - It is definately true that there are other symptoms of Celiac's some of the time, but you can be totally asymptomatic until it does alot of damage. Other symptoms are poor growth and weight gain (which she does not have), but unexplained food allergy, a supposed "lactose/soy intolerance", other auto immune issues (such as diabetes or neutropenia), diarrea or constipation, vomiting, stuff like that. The interesting thing is this - since birth Paige suffers SEVERE constipation whereas she takes mega doses of laxative(S) daily and still needs a "clean out" every two weeks, she's been tested for Hirschprungs twice, both biopsy's negative, she is totally milk and soy intolerant, red dye/blue dye intolerant (can not drink anything but apple/peach/pear juice, no snacks with color, etc.), makes her violently ill throwing up, and she's been neutropenic since she's been 6 months old for which she sees hematology. NOW, I have always been told these things are separate issues, all relating to either DS or just unexplained or she will "grow out of it". After hearing what the dr.'s said on Friday, I wonder if she's been Celiacs the whole time and these are not separate symptoms and they just didn't think of it. It's just a thought I'll ponder until the biopsy, which we will definately have soon. I really hope they are separate symptoms, and not Celiacs (glad that an "answer" would be found, but BLAH on the gluten free diet), I've heard it is a total nightmare since everything has gluten, corn, wheat, barley, oats in it in some form or another. Uggh, wish us luck!!!
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