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New and could use some help.

Welcome to the board. We have went through extreme amounts of genetic testing with no results yet. i wish I could help you more.  I am sorry to hear about what has happen to your family and what they have put your daughter through.  I always worry about CPS but I have enough paper work and evidence that I make sure my children have their proper care not to mention the amout of in home ppl who work with my children. I hope that you can get the help you need and can get some answers. My heart goes out to you!  Good Luck i hope someone here can give you more answers.

I hope you find some answers soon. I am not sure where you live but it seems to me that many docs in the US make an autism spectrum diagnoses on a list of symptoms alone. If you look at the DSM you could probably see if your dd meets the criteria. As far as the chromosome - maybe the following website could be helpful :

http://www.rarechromo.org/html/home.asp

 

How could someone take your daughter from you?? That is my biggest fear.
Who called CPS?? Was it the doctor's that you were taking her to?? I just
don't understand how someone could do that to a family. I am so sorry you
went through that. I also don't know about chromosome 16 but would be
interested to hear more about it. Welcome to the board.

Hello all!

I'm a mom to 3 lovely children ages 11, 8 and 5.

I've come to this board to seek some help and understanding so I would appreciate anyone who can offer me any type of advice or answers.

My middle daughter who is 8 has always had problems.  She was born very floppy, she was delayed in crawling, walking and speech.  When she was younger she had a couple of seizures but we never knew why.

As my daughter grew older she became obsessed with food, smells, and tearing things.  Her behavior spiraled out of control.  I took her to the doctor several times and each time I was dismissed not knowing what was wrong with my daughter.

My daughter was taken from me and put in foster care because it was assumed she was being neglected.  Eventually, CPS realized there was issues with my daughter and sent her to a geneticist doctor who did a very detailed exam.  Along with the exam she sent her for tons of blood work.  One test result came back that she had high levels of glycine in her urine which can mean hyperglycinemia not to be confused with hyperglycemia.

They also found an abnormal result with chromosome 16.  They called it a duplication.  Since the doctor has not yet spoken with me about this abnormal result it's driving me mad not knowing what is going on.  I looked on the internet and abnormal chromosome 16 sometimes goes along with autism.  My question is, is there anyone who has had a child genetically tested and had abnormal chromosome 16 and been diagnosed as autism?

I don't have any advice but I just wanted to say welcome! I hope you find
answers here

Welcome to the forums! Feel free to ask us anything! I don't know anything about chromosome 16, but hopefully someone else here will.

 

Thank you both very much.

It's one of those situations where you don't want to have to hang around but if it turns out I have to then there is a wealth of information here as well as very supportive people it seems.

The school called CPS on me basically because they couldn't handle her anymore.  When my daughter threatened to kill herself they called me and told me to come pick her up rather then sending her to the counselor or getting her other help.

In the 3 years she has been in school the school knew something was wrong, I knew something was wrong and the doctor knew something was wrong but yet the school didn't go extra lengths to evaluate her like I'm assuming a school should.  She went all these years to school without an IEP.  They got fed up with the behavior and decided to call CPS.  It just shows that this school doesn't have the right people to deal with special needs children.

I have my daughter back now.  It almost seems CPS targets people with special needs children and they think they are doctors and know more about your child then you do.

So now my daughter has been to two physciatrist, a psycologist and a geneticist doctor.  All of them have said Asperger's, PDD, Bipolar, ADHD.  The geneticist suspects Asperger's over all the others.

Here is a list of behaviors and symptoms:

Non social

Has no friends

Non verbal (most of the time)

Bully

Has different obsessions

Doesn't make eye contact

unusual obsessions such as smells

Now here are a list of health problems:

hunchback

scoliosis

flat feet

ichythyosis

hypotonia

My daughter is very smart however and LOVES to read.  Every year the kids are suppose to meet a goal for reading by the end of the year, my daughter always meets that goal once she starts a grade.

I'll stop now because I can go on and on and that wouldn't be any fun. :)

Thanks again for the warm welcomes and micki thanks for the website as I'm looking into it now.

Ugghh. That is just horrible how the system failed in your situation. The
behaviors definitely sound like Asperger's or ASD but the with the exception
of the hypotonia the health problems have me stumped. It does sound like it
could be genetic. I hope you get some answers. Sounds like you have a
smart kid!
 

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