Went to neurologist and am I confused

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Registered: 03-27-2003
Went to neurologist and am I confused
5
Tue, 12-28-2004 - 9:50am

The DOctor we went to was "the best in the area for kids" so I thought good we will actually find something out. I was told that she really thinks TJ is autistic but cannot make a definite diagnosis until closer to 3( he is 28 months), in the mean time he has to follow up with his ped. and have an eeg(2 hour study that should be fun!), hearing test, and a blood test for fragile x (what is that). We are to follow up in 6 months. So when we left I was so confused. Wha tnow- I am going to continue his therapy schedule until further notice, at least I see some improvements. This is just so hard not knowing what exactly is wrong with him. I feel like I am not paying enopugh attention to the others kids who ar 3 and 28 months. Then there is the whole issue with my 15 year old. There is just not enough time in the day! My hisband is of little or no use when it comes to the kids especially TJ. Thanks for listening to me ramble I just have no one else to talk to.

KAthy

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Registered: 11-01-2004
Wed, 12-29-2004 - 12:28pm

Kathy,


First of all big HUGE (((((HUGS)))))) I am so sorry they are not able to give you a definitive answer yet.

               

 

iVillage Member
Registered: 03-27-2003
Wed, 12-29-2004 - 10:08pm

If you do a web search there are some good sites for Fragile X.

Jan & Matthew (11) - mild hypotonia, apraxia, dysarthria, autism

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Registered: 03-27-2003
Wed, 12-29-2004 - 11:48pm

Wow Kathy,

It sure sounds like you've got your plate full. It is such a catch 22 isn't it? They make a big deal about early intervention being the key and early diagnosis, but when you try and do that, you get a lot of hemming and hawing. It sure does make it tough on the parents. Hugs to you. And I know what you mean, it can seem like the other kids can fall through the cracks if you're not careful (and I am sure you are careful!) I wish I had answers, but I guess sympathy is all I can offer.

I do know that Fragile X is a genetic disorder where the X chromosome actually looks broken under the microscope and it can lead to a range of issues, most mental. It is a lot like autism, and it ranges in severity, but it goes back to the chromosomes.

I think you're being wise, just keeping going with what is getting results. These doctors can theorize all they want, but you are dealing with the reality of living. Good for you for keeping going. TJ is so lucky to have you as his mom.

Rachel

iVillage Member
Registered: 09-20-2004
Thu, 12-30-2004 - 3:32pm

Kathy,

I'm so sorry that you are going through such a rough time right now. I have another child to and it is so hard! My kids are 23 mos. apart.

As for Fragile X - I had Gabriel tested for it when he was one. I read an article on it and requested the genetic testing. He came back a normal male carrier. It was so hard having to wait the three weeks for results, but at least that is out of the way.

You and your family are in my prayers!

Kim

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Registered: 10-09-2004
Thu, 12-30-2004 - 7:20pm
I can sympathize with what you are going through. My ds PJ is 2.5 and I have been dealing with "stuff" since his birth. Now I have a 2 mos old and I feel like I am not giving me all to him, as I should. PJ has been getting back to back evals done lately and starting therapy! My dh is useless, and always said ds was fine... not to worry. Well he is gone over thirteen hours a day and doesn't see what i do! Wouldn't admit there was any problems till a friend told him there was! UGHHH! I know how you feel... but just bare with it. It may take a little time, but will be worthwhile to everyone in your household in the long run. Do you have other family that can lend a hand? Or even a friend nearby?