Fwd: Please follow your children's progress! (JJ's story) REPOST

[Guest guest]

Hi,

I haven't posted in a while; but I feel it necessary to post again.

My son, JJ, who is now age 2.10 years reached most milestones a

little early. He could walk when he was 8 months, started to speak

at nine months, etc. He had some moderate feeding issues but

nothing too major. At the age of 12 months he quit talking and

eating consistently. I begain taking him to his " then " pediatrician

who told me not to worry. Well after four months of not eating and

talking I worried. We switched pediatricians - she told us the same

thing. We started JJ on Pediasure and began formal speech therapy

at the age of 18 months. We took him to the local hospital speech

therapy and she gave him a loose diagnosis of apahasia and oral

motor planning problems. At the same time as speech therapy we

begain to sign with JJ. He picked it up quite quickly, although

some signs he adapated to his own style, i.e. tea.

He did have some gross motor problems and he still to this day has

some sensory problems. We had him evaluated by Early On. JJ had

the speech of a 6 month old (when he was 18 months). They suggested

taking him to a neurologist. My husband and I looked and looked.

Finally found what we needed at U of M. We were put on a 4 month

waiting list. But after some tests and then finally an MRI we were

told our son's problem in November of last year. JJ has Arnold

Chiari Malformation. He began having severe headaches and they

planned a brain decompression surgery for February of 2003. They

did the surgery - after a month JJ returned to school at EI. He was

taken off restrictions in July. In August he began preschool for

language impaired. He goes five days a week. He is beginning to

talk and he will actually sit down now during meal time and at least

try what we're eating. Prior to his surgery he wouldn't eat meat of

any kind and now he will. The arnold chiari doesn't go away. He

has had four MRI's since his first. He will need one every year and

it is quite possible that he may need to have the surgery done again.

He has made significant progress WITH therapy. Speech, OT, sensory

and physical.

Now to my moral. Every parent knows their own child. If you feel

that your child is behind in ANY way, please at least have them

evaluated by early intervention. Start there. Don't accept the

first answer you hear. Don't accept the first pediatrician's

answer. By the way we are on our fourth pediatrician now.

Some things are unseen to the naked eye and require more thorough

testing (MRI, cat scan, eeg).

Below are the address(s) for JJ's web pages.

Please visit and may you all have a blessed day,

Kim Antolak in Michigan - mom to Carissa, age 10 and normal, and JJ,

age 2.10 years, apraxic, SDI, and Arnold Chiari Malformation

http://www.geocities.com/1pizzalady/JJSpage.html

http://www.geocities.com/1pizzalady/JJSpage2.html

http://www.geocities.com/1pizzalady/JJSpage3.html