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Old 07-15-2014, 08:21 AM   #6
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Join Date: Jul 2014
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Clyde1 HB UserClyde1 HB User
Re: Down Syndrome and H.E. (Hashimoto's Encephalopathy)

Originally Posted by BriMom View Post
Yes I am going to have to try the Kennedy Krieger institute. I am not getting anywhere here in NJ. It's impossible to even get the tests done to even check these things out here. And in the meantime she's not getting treated and getting worse.
My daughter also had open heart surgery as a baby. She had a follow up appointment a few months ago. I didn't know about the heart issues that you mentioned to me about though so I will have to follow up. I know that a fee months ago they did a thorough follow up with the EKG and echo testing. They knew she was having cognitive problems at the time of her appointment. I'm just trying to get the thyroid blood work done for the antibodies and having a very difficult time. So I am going to have to probably call for an appointment in Baltimore if no one gets back to me up here.
Great that they did an Echo; that is how they found the Sub-aortic stenosis in my daughter. So it appears that you can check that off your 'worry list.' I would hope that you will follow up on the thyroid antibodies tests. Has your daughter had EEG? How is your daughter's balance? Does she have any involuntary movement, i.e. Jerks or seizures? How is her speech, as compared to before symptoms began? The 3rd Chromosone on the 21st pair has on it genes that cause our children to be born with 30% more GABA in their brains, so we have to monitor the ingredients in any meds that are prescribed for them. They do not need more GABA action in their brains, they already have too much. That is the reason their mental processing is slower than our's. They can accomplish as much as you, me, anyone, but it takes them longer because they are just naturally over-sedated, slow. We all have GABA in our brains, it is our natural tranquilizer. (One caveat: In the event of a seizure, they are given benzodiazepine to stop the seizure, which is perfectly permissible and needed.) But they should not be given benzodiazepine, which increases GABA action in the brain, on a regular daily schedule. (Caution: when a person has taken a benzodiazepine for more than several days, they must be withdrawn slowly, or the abrupt sessation may provoke seizure activity.) Many drs., nurse practitioners do not know this as they do not have, or take, the time to read current research reports. (I am not a medical professional. I am a mother, a mother who has watched her daughter suffer needlessly, due often to doctor prescribed medication that she should never have been given. I, like parents everywhere, have, to a certain extent, to depend on and trust that doctors will know the appropriate treatment. I have learned that it is my parent responsibility to always double check what is being prescribed for her. Doctors want to help them, but they have had little if any Down syndrome-specific training/education in medical school. In their practices, they may see 3 or 4 over their entire years of practice; not enough to accumulate a lot of experience. This is the reason it is best when close to a major medical center to take them there. Kennedy-Krieger at Johns Hopkins sees patients with DS from all over the world.

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