Special Needs

Introducing myself

Hi,

My name is Jessica.  I have a 15 month old daughter, Abby, who has been red flagged for Autism.  I have been told that the place that red flagged her is "so good" that a red flag means she is Autistic.  She has taken the Mullen Test (scored just barely below average) and two behaviorial tests which the first one she scored Below Average and the second Concern. She has the ADOS test on June 4.  I'm unsure what to expect and what to do next and just mainly scared in general.  She is very happy, sweet, has a couple words, walks (like a drunken sailor-if nothing else, she has flat feet), sleeps great, she is a normal pooper after a few adjustments to her diet, but she does have muscle spasms a ton, and her receptive language is alittle behind.  She doesnt seem to retain a lot of things she learns. She has a habit of doing things like playing with the little car instead of rolling it on the ground. She is "on the low side of normal" as far as muscle tone goes but has improved greatly. She can stand up on her own in the middle of a room without haing to pull up on something and she can crawl up stairs etc. We have an MRI scheduled for Weds and Im terrified.  The neurologist says her reflexes on one side are slower and I have no idea what that means.  Her head grew from 50 percentile to 93 percentile from 2 weeks old to 6 months and no one said anything to me.  And as a first time mother, i was clueless. She's also not hyperactive at all.  More underactive but not too much.

 If you have any advice or thoughts on this I would really appreciate it.  Ive been lurking a bit and I noticed someone mentioned that their baby fell off the bed.  Abby did too at around 8 months old and I never got it out of my mind either.  I also "know" a couple of you (Hi Crazycrustacean and ncsubride!) so I already feel alittle bit at home :)  Thanks for listening.

Re: Introducing myself

  • I am so so sorry you are going through this. This is a super hard time for you right now as you get the diagnosis. Looks like Abby may have some other issues structurally (rather than just a very broad lable of autism).

    You are doing all the right things with testing. If it is Autism,you are starting early, and this is wonderful! Write down everything the doctors say - the next few months will be like a big black hole, it will be hard to remember what all the specialists said.

    You may want to start looking into different therapies to work on Abby's receptive and expressive skills, and maybe on her tone, too. Contact ECI in your state, they will help you.

    I was in your shoes 6 months ago, to the day. My son has Autism. I love him, and he is the best thing that has ever happened to me.

    Keep coming to this board - lots of wonderful women and tons of great advice. And breathe.... this seems to be the hardest....

  • can I ask what you mean about "issues structurally"?  is there a medical term? I want to make sure I ask the right questions to the doctors.  I really appreciate it :)
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  • Well, this is what we did:

    - Microarray - this will tell you if there is a chromosomal abnormality like fragile X or other condition contributing to the overall condition. Some still do FISH, an 'older style' test. You will need to see a geneticist to order these.

    - Blood work - we did amino acids to figure out mitochondrial disease that can too contribute to the overall presentation. A pedi or a geneticist can probably order these

    - EEG and MRI to rule out brain abnormalities like fluid, overgrowth, etc.

    Again, this is only from personal experience. Other ASD moms have opted to also see a GI specialist and do IgG and IgE testing to rule out food allergies and reactions that may lead to a 'leaky gut'.

    Obviously you cannot do this all in a week, so pace yourself. Do research and talk to multiple professionals. I also did a hearing test and an ARB to rule out deafness before I went to GI for example.

    Good luck, and please ask questions. This boardis very helpful. I know you will get more responses once everyone is back at their computers :)

  • Hey sugar. Welcome on over. 
  • Aww.  You forgot about knowing me!  :*(

    Welcome to the board.  I hope you get some answers in these tests that you have coming up.

     

    imageimageimageimageimage 9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks
  • Hey sweetie ;)
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