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Please Answer..I'm very confused!

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Old 07-15-2010, 11:27 AM   #1
Join Date: Dec 2009
Location: Texas
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ccmitche HB User
Please Answer..I'm very confused!

I do not have time to explain entire story so to sum it up my daughter had a traumatic birth experience. She was not breathing at birth for an unknown amount of time and lost a lot of blood which required her to have 2 blood transfusions on the day she was born. The doctor was very negligent.

My daughter was diagnosed with PDD NOS, Selective Mutism, and Cognitive Disorder NOS. She doesn't relate to peers and doesn't know how to interact with others and does not pick up on basic social cues.

She also has physical defiencies. Her last OT diagnosed all areas of balance and coordination as extreme defiency. Her feet also turn outwards when she runs and her arms swing around etc. My daughter is now 12 y/o. She is on the high funtioning end of her diagnosis.

The last OT told me that she things my daughter may have Cerebral Palsy. This was mentioned a couple years ago. I didn't take it too seriously because I always thought of CP kids as unable to walk.

Recenty I came accross information that talked about how CP is associated with muscle tone, balance, and coordination and their are mild cases.

I did make an appointment for my daughter to see a neurologist back when my OT mentioned that. However, I was unable to make the appointment so I had my ex-husband take her. My ex has always denied a problem with my daughter and denies all of her diagnosis. He came back and said that the doctor said my daughter is fine. This was about 3 years ago.

I don't trust that my husband was up front and honest about the issues Abby is having and her OT diagnosis as well as the PDD diagnosis etc.

How is CP diagnosed? Is it a blood test? Is it medical history? Or is it by an evaluation similar to the OT's?

Should I take her to another neurologist and make sure I'm there this time?

Does the diagnosis really matter as long as she gets OT and stuff?

Also, are there any other health issues that would cause one to have poor muslce tone, balance, and coordination? There were other things on the evaluation like being able to reach for things a certain way etc. I don't have the evaluation with me as I'm at work.

I assumed her awkwardness was due to I'm not so sure. She was slow to reach developmental milestones but not significantly delayed.
She crawled around 10 months and walked around 16 months.
It took her a very long time to be able to tie her shoes, button her pants, zip her coat etc. She was 3rd grade before she could really tie her shoes.

She still does does not know right from left. It took her awhile to be able to ride a bike, but she can now. She cannot jump rope, hula hoop, ride a ripstik, summer saults, kart wheels, or anything like that. I even put her in gymnastics for awhile thinking that would help her, but it just humiliated her so I took her out.

Anyway, just want to figure out all her issues so I can make sure she gets the right services.

I know it seems so late as she's 12 y/o now. The problem is I was dismissed by so many people for so long. I was battling for my child for years and no one would help me.
Because she is high funtioning the school dismisses that there could be a problem.
They just refer to her as a weird, quirky, clumsy kid.

2 main questions:
Are there other health issues to explain what I described? Should I look at doctors other than neurologists?

Do her symptoms sound like they could be CP?

I have PPO so I don't have to have referrals.

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Old 07-15-2010, 01:13 PM   #2
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Re: Please Answer..I'm very confused!

My son has Spastic Diaplegic CP. He too had a traumatic birth, his CP is a direct result of this. He was starved of oxygen in the 20hrs prior to birth and then was not breathing when he was born. This was a factor for him when they diagnosed his CP.

CP is when the signals from the brain to the muscles in the body are not travelling properly for whatever reason and cause physical problems, such as high or low musce tone. (there are more manafestations of CP, balance and co ordination being some) In my sons case he has a cavity in his brain and a lesion which are confusing the signals to the muscles causing high muscle tone in various parts of his body. His balance and co ordination is also terrible. When my son was diagnosed I was told that for a CP diagnosis you needed to see some form of brain damage on an MRI scan or ECG. But have since learnt that this is not the case for everyone. All stories are different. A neurologist is a good place to start for a diaognosis though.

CP can be very severe or very mild. It can mean you can't walk / move / talk or it can simply mean that you find using your fingers for fine motor skills difficult. CP is the umbrella term, it seems to me that everybodys exprience of it is different.

The only thing which might help you might be Physiotherapy. Can you access this without a diagnosis? If you want to persue a diagnosis then it might help people be more understanding, especially as she is high functioning. BUT its not important if you know her issues and you have all the help she needs in place.

There is alot of information about CP online, have a look and see if she fifts. If you feel you need to persue it then I would see her doctor and express your concerns. Its not too late.

Feel free to ask me anything about our journey with our son. I'm sure others on here will help too - they've been great with us. Hope this helps.

Last edited by Basswife; 07-15-2010 at 01:15 PM. Reason: adding more information

Old 07-15-2010, 01:17 PM   #3
Join Date: Mar 2008
Location: Inwood, WV
Posts: 58
jammyslisa HB User
Re: Please Answer..I'm very confused!

As a special ed teacher and the mother of a son with CP, it sounds very much to me like your child has cerebral palsy. It would explain many things, even problems with language, because of small motor issues. CP is not really a diagnosis, but a constellation of of issues caused by lack of oxygen before, during or after birth. Usually an Occupational therapist or a physical therapist will know if a person has CP, it would also be helpful for you to get a Physiatrist, your OT or PT maybe able to help you find one in your area.

Last edited by jammyslisa; 07-15-2010 at 01:18 PM.

Old 07-27-2010, 05:00 AM   #4
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KarimsMUM HB User
Re: Please Answer..I'm very confused!

Get a second opinion, I've found that my gut is always more reliable. PT's are usually the ones to pick it up, however even if you haven't had it diagnosed you can still treat the symptoms regardless.

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