Ds got tested too. A lot of the symptoms are the same.
Just curious why you wanted him sedated for tests?? My ds doesn't really care since he doesn't feel pain the same way we do... he learnt to be scared through peers :P
I know here for the fragile x study, they just prick their fingers. And we didn't have the results for like two months. I don't even know if they would sedate here for blood tests. They sedate for eeg's and mri's.
Tammy
DS was tested and was negative.Lol, that sounds like me. I hate going to the doctor. And the hospital, grrrrrrrrrr, everytime I go in there, I have a cold or sinus problems two days later.
Tammy
Nate's neuro suggested fragile x testing and I'm sure we'll eventually get around to it, just absorbing 1 thing at a time right now. He also suggested that when we take him we tell them to use a "butterfly" needle. It's much smaller, almost doesn't look like a needle because there are "wings" sticking out of the sides, is attatched to a long thin tube instead of directly to the vial, (the tube flows into the vial). It usually causes less stress because it looks different and can barely be felt.
Nate hates needles. He exhibits inappropriate responses to pain, he laughs when he's hurt, hysterically, but he's still terrified of them. Maybe see if they will use a butterfly needle with him, might make it a bit easier at least.
Hi ... Riley (8 1/2) has been stuck more times than a pin cushion, he's in the ER 1x month for rehydration, 2x month in the fall, and I can't tell you how many blood tests in the last 3 months. So now he's used to it, but the first time (2 yrs old) it took 5 of us to hold him down...I just think that first time can be scary...talk softly, give him lots of love...it'll be fine!
The butterfly needles are smaller, but there is still a prick. The best thing I can recommend is there is a 'swab' that numbs the area first, unfortunately we've only found that they use them at Children's Hospital here. But wow, what a difference.
Good luck, like I said, it goes quick and he'll be fine.
I am finally going to get Joe Formaly diagnosed. I have one from the center I deal with here but I really need a second opinion.(I am travelling to London in 2 weeks) After speaking with the psychologist she suggested that amongst other testing (Psychometric) I should maybe also test for fragile X (I brought it up actually) Well we are scheduled to take Joe to draw blood on Tuesday. I dont know how the heck I am going to do that. I wish we could sedate him..Has anyone done this before? I am also nervous about the results. I dont know why I am afraid that he might test positive for it, when I read the checklist on the website it certainly has a lot of things that sound like joe. (Hyperactivity, language delay, short attention span,poor eye contact...etc...
Has your child been tested for it?
Yeesh Tammy-I wish they would talk to the docs in Kansas. Katie and I were both tested and it seemed like they took VIALS of blood. We just held her down and they took the blood. Not fun, but no big deal. You are right..for testing purposes you really don't need more than a drop or two. What I didn't know is that you can end up with inconclusive tests. I have a friend with 5 kids and everyone including my friend showed up inconclusive (she has one on the spectrum and one with speech and language delays) and one who is too young to tell. If it is fragile x, so be it...they have all kinds of research foundations and support groups too! (I researched it for my friend).Where was the test ran at? I know in my case with my kids, it was shipped overseas. So maybe whoever read the test had no clue on how to read them, lol. Don't know.
Tammy
well over here they want a lot of blood. I dont know how I can hold Joe down he screams and kicks us all when the doctor wants to look down his throat, how are they gonna get 12cc of blood from him I dont know...Well, Jeffrey, lol, everytime they run his depakote level testing, he will look at them insert the needle and watch them as they draw the blood. He doesn't even flinch. Of course the lab techs are waiting for him to scream but he never does
Tammy
hi joe's mum
i dont know where in london u are going but when my boys have to go to hospital for blood tests etc either at my local hospital or great ormand street. i ask for sedation for treatments that make them unhappy and i have found that so far only certain scans have ment that they cant be sedated . so maybe u could ask them and he wont be as upset .
ps jordon was tested for fragile x
Jakob was tested for fragile X the same day he was diagnosed. It's usually pretty standard with an ASD dx. It wasn't too bad, just took a little blood. He didn't like it of course, but luckily I had daddy there to hold him for a change. Took about 4-6 weeks to get the results, which in our case were negative.Andy was diagnosed autistic through Norfolk Public Schools. When we moved to Texas, and had to find a new pediatrician, he decided he wanted a medical diagnosis. Andy was tested for Fragile X. He also had an EEG and MRI. Andy is in the minority. His MRI actually indicated abnormalities in his brain. Most autistic individuals don't exhibit brain abnormalities.
Kim
Yes we had fragile x testing done. Most doctors recommend ruling out fragile x when diagnosed with an ASD because they are so similar. Fragile X is a genetic disoreder that I believe (I could be wrong) with fragile X they are mentally retarded as well.
I can understand being a bit nervous of the outcome but it isnt going to change the sweet loving boy he is right this moment! So hang in there and love him with all you have.