We are coming up on Mr. Cheek’s second testosterone shot this week and I figured I would give an update on his progress and talk a little more about our journey with Klinefelter Syndrome.
First – I want to talk about his visit with his pediatrician…
We had to take Cheeks to his Dr. A couple of weeks ago and I was disappointed to find out that the specialist had not informed him of his new diagnosis. Do Dr.’s not talk to each other anymore? Really irked me…On the plus side – his pediatrician (whom I love) was actually very familiar with Klinefelters Syndrome! The first thing be said after B told him was, “We are going to have a tall one on our hands!”
He has never had a patient with it before, but he has worked with many patients with other chromosome syndromes and has many patients now with autism. It was nice to know we have someone in our corner on this new journey with us. He said that as of right now his development and motor functions are very advanced for his age (yes!) but he knows as well as we do that that could change in the months to come. We are all on the same page right now as far as watching for signs of autism and that’s all I can ask for. It gave me a sense of relief knowing A. The Dr. truly cares about Aiden (we have known that since his personal call on Christmas when he called to tell us, “I have been thinking.. And I thought about what I would do if this is my son… And id like for Aiden to see a specialist.”) and B. He knows about ks (from what I have read many drs don’t know much). So this is really great for us!
On to the testosterone shot:
– First and foremost there were no side effects that we saw with the first shot. If anything he was much happier and energetic! Which is never a bad thing.
– Within the first week we noticed a significant different in his willie! Before we couldn’t see it at all and now it’s poppin right out!
– I think the biggest change we have seen is in his muscle strength. He was able to lift himself much easier after his shot and has definitely been able to move quite easier.
– As far as his mental development he has been doing pretty good. He has found his screaming voice and has decided to scream and yell at anyone in his sight… Which was really funny at the mall this weekend. Brandon and I have been working really hard object training with him. Anytime he touches something we make sure to repeat the objects name.. Which seems to be working. I plan on starting sign language with him which I hope will help.
He has still been doing his stimulators wrist and ankle rolls.. Which I have been keeping an eye on.
That’s pretty much it on the update. We go into the specialist next week to have his second shot and I will update before his 3rd of this first series.
Also – if you missed my update on the first post about this.. These were the two sites that have me the most valuable info on Klinefelters Syndrom
http://www.openingautism.com/Genetics/ConditionDetails/26
Genetics.org
Written with my iPhone… Sometimes my fingers are drunk… Often my phone can’t translate
xxyzguy
March 1, 2016 at 11:15 pm
Hi, I’m looking for the first post you made about XXY and your son, I think this is it, or I can’t read. 😀 I see in your keywords autism spectrum etc, so you were warned that your son might have educational difficulty? I’m trying to figure out why your son was diagnosed to start with, and could it be he was born with micropenis? If that’s true that would make him unusual, for XXY’s. As I said on another post by the end of puberty most XXY boys had a normally sized penis, or 77% in the study I was reading. I’m surprised to read he’s having more than 1 testosterone injection, I’m also surprised to learn you already know about AXYS genetic.org surely they can put ypou in touch with knowledgeable doctors and geneticists? I mean. what use is a support organisation that doesn’t support? 😀
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MammaBluette
March 2, 2016 at 11:14 am
As you can tell – my original post about his diagnosis was over a year ago.. so of course my tags have changed .. however, there are many XXY parents searching under autism since many are diagnosed as a secondary. We already know of 2 places where were can go.. we were just excited to see a dr. in town — as traveling out of state is not the cheapest. AXYSgenetic.org is a fantastic organization that has helped immensely.. like i said – he was diagnosed over a year ago and we have learned quite a bit since.
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