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Dr. Bob
Dr. Bob, Neurologist (MD)
Category: Neurology
Satisfied Customers: 5762
Experience:  Neurology & Int Medicine (US Trained): 20 yrs experience
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My granddaughter was born with asymetric symptoms and was diagnosed

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My granddaughter was born with asymetric symptoms and was diagnosed with cranial stenosis and had an operation to open all 5 fontanal at the age of 5 months. Pretty horrific.

She is an absoute beautiful child with no no signs of Down Sydrome or any other abnormalities.

She has an extremely retentive memory and will read the newspaper for hours on end and tell me who is who but know at 11 years cannot read or write and has no ball skills.

She is very good on the computer and exceptional at puzzles

Is there anything we can do to help her as she is so eager to learn.Thanks Lorraine

Doctor-Bob :

Hello. Has your granddaughter had an MRI scan? Has she had genetic testing to rule out an underlying hereditary syndrome?

Customer:

Hi

Doctor-Bob :

Hello.

Customer:

Hi yes at 5 months and after the surgery and then again at about 6 years old.No she has had no genetic testing but my daughter who was scared of having another child has had another daughter now 13 months old "alias monster mash" who is extremely advanced and as cute as a button

Doctor-Bob :

sounds wonderful. well, speech and language delays are common with cranial synostosis, so your other granddaughter will likely need some special therapy, and perhaps involvement in a support group as this can be a very stressful and emotionally draining condition to deal with.

Doctor-Bob :

Have you heard of the Jorge Posada Foundation? This is an international non-profit foundation that provides support to patients and families dealing with the conequences of craniosynostosis through their Mentors Network. Here is a link you might find helpful.:

Customer:

I certainly don't think Monster Mash" will need any assistance as she has is already saying a lot of words but you haven't answered my question of how we can help my Grandchild with the problem.Any advice will be welcome

Doctor-Bob :

I was referring to your GD with the craniosynostosis, not Monster Mash. :-)

Doctor-Bob :

She will likely need special therapy and schooling, as well as a support group.

Doctor-Bob :

She sounds very bright and is still young, so intervention now can make a big difference in her ability to learn to read and write and thrive in school.

Doctor-Bob :

First, she will need special testing to determine what deficits she has, so they can be addressed one at a time.

Customer:

Sorry the rest of your message didn't come through. Will try the link.Thanks regards Lorraine

Doctor-Bob :

You're welcome, Lorraine. Follow up anytime if you have further questions.

Customer:

Hi Thanks for the chat.Can you indicate what type of tests she needs to determine her deficits she has? Thanks

Doctor-Bob :

She would need what is called "neuropsychological testing"...it can be done by a neuropsychologist, a child development specialist or a child psychiatrist.

Customer:

Thanks Regards Lorraine

Doctor-Bob :

Glad to help. God bless.

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