Down syndrome Medical guidelines

A comment led me to think that I should join the bloggers who have posted the link to the Medical Guidelines for people with Down syndrome.  Hopefully if you click on that it will take you to the right place.

Olivia sees a young female pediatrician who tells us that she reviews the guidelines prior to her appointments with Olivia to be certain she is keeping up on sound preventative care for Olivia.  At Olivia's 2 1/2 year old check up, her doctor said that it was time to screen for celiac disease.  The gastroenterologist said that indeed it was time to screen but that doctors have to be careful in reading the results and knowing which tests to run because there are some of the tests that would not usually come back positive in a young child with celiac but would come back positive in an adult with celiac.  The tests that always come back positive if a child has celiac came back significantly elevated for Olivia.  The tricky thing is that if these tests come back negative that doesn't tell you much, because there is a high rate of false negatives.  Olivia had positives so that made diagnosis clearly celiac disease.  If your child is symptomatic of celiac then most definitely test!

We have heard that not all doctors are very good about making certain that they follow that guidelines and that parents need to know the guidelines, give their doctor a copy and keep making sure that the doctor is following them.

Celiac Disease- "Yes, She's Got It" - Dr. GI

We took Olivia last week to Riley to see a pediatric gastroenterologist because of celiac disease.   This was the first available appointment. Kids with Down syndrome are to be screened for celiac disease between the ages of 2 and 3.  Olivia was screened twice in November and her numbers indicated Celiac disease.  When we were given a copy of her blood test results just prior to going to Indy, we were concerned that her numbers were not just slightly elevated but were significantly elevated.  A bit of shaking in our boots in the days proceeding the doctor appointment.   The GI doctor was very kind and comforting and confirmed that Olivia does indeed have celiac disease and talked to us about the seriousness of having her stay away from gluten in order to avoid intestinal damage.   He also reassured us that a gluten free diet is healthy nutritionally but that he always has new celiac patients see a dietician.  The dietician can help us learn how to keep Olivia away from gluten in hidden ways in processed foods.   Even some grains other than wheat have gluten as the Physical Therapist was reminding me.  We need to educate ourselves (and others who care for Olivia)  fully in order to protect Olivia's small intestine.

We have seen positive results with Olivia off gluten. The pediatrician felt that taking her off gluten in November was a good way to go because Olivia was symptomatic and we had a 2 month wait to see the specialist.  Olivia's strength is the main thing to strike us. The physical therapist could not understand why Olivia was not getting stronger to walk, but within weeks off gluten her strength improved remarkably and she started really walking!  She has taken to amazing us at her endurance to walk long distances and carrying things and walking backwards, dancing and walking on soft mats at therapy.  Her social-ness and bravery has returned also.  It is so nice to see her once again so very friendly when we go out and about.  But I noticed today that I have to keep a very close close eye on her because she sees someone she is interested in visiting with and off she goes in a hurry!  The physical therapist commented today that Olivia has made progress in her walking so much faster than she usually sees in kids who have struggled so much to get to this point. She also agrees that it is the celiac disease that was holding Olivia back.  

So, we do have to avoid gluten for Olivia, but the reward we get is that we have a strong, happy, friendly little girl!  

Olivia is a WALKER

Olivia has been walking for about a month.  PT thought it would take another 6 months for her to get strong enough, but a couple weeks off gluten after her celiac diagnosis and she was off to the races. This is a longer video, because I wanted to share how long of a time Olivia can walk all over the house.  She very quickly learned her way around the house and all its ins and outs.