3 yr old daughter diagnosed

[Guest guest]

Hi, I am a new member and this is the first time that I have written. My 3

yr old daughter was diagnosed the day before Thanksgiving with Chiari. My

pediatrician has never dealt with this so he hasn't been able to help me

much. He is referring us to a Ped. Neurosurgeon in Dallas very soon. All I

know is that she is type one and about 12mm. This is really breaking my

heart because I don't know what she is feeling or how much pain she is in and

I don't think that she would know how to explain it to me. She has headaches

so bad that she holds her head in both hands and cries and cries. Sometimes

she screams out and twice has thrown up because of them. She also says that

she is itchy on her arms. Is this the tingling or pin & needles sensations

that she is feeling? I would appreciate any feedback from mothers who have

children with Chiari. I don't know what to do or what not to do to help her

while we are waiting to see the neurosurgeon.

Thank You, Robyn ( Shelby's Mom)

[Guest guest]

I'm 31 and I just found out what was wrong with me this past year.

When I was little I would wear coat hangers on my head. I also would

scratch my older sisters face and just throw fits. I was obviously in

pain and didn't know how to show it. My Mom took me to all sorts of

doctors but they never really found anything wrong with me. My Mom

thought maybe I was retarded at one point. lol She did find that I

had a urinary tract infection and some bad teeth. As I got into my

teenager years I just thought that everyone had headaches. When just

my family was around.. I would stretch the plastic coathangers out

and wear them around my head to relieve pressure. I also told my

family that I had bugs in me. (pins and needle feelings).. Anyway, I

have four children now and they all seem to be much normal then I

was. lol I'm in the Dallas area and I wish you luck in finding great

help. You are very lucky to know what is wrong with your daughter.

> Hi, I am a new member and this is the first time that I have

written. My 3

> yr old daughter was diagnosed the day before Thanksgiving with

Chiari. My

> pediatrician has never dealt with this so he hasn't been able to

help me

> much. He is referring us to a Ped. Neurosurgeon in Dallas very

soon. All I

> know is that she is type one and about 12mm. This is really

breaking my

> heart because I don't know what she is feeling or how much pain she

is in and

> I don't think that she would know how to explain it to me. She has

headaches

> so bad that she holds her head in both hands and cries and cries.

Sometimes

> she screams out and twice has thrown up because of them. She also

says that

> she is itchy on her arms. Is this the tingling or pin & needles

sensations

> that she is feeling? I would appreciate any feedback from mothers

who have

> children with Chiari. I don't know what to do or what not to do to

help her

> while we are waiting to see the neurosurgeon.

> Thank You, Robyn ( Shelby's Mom)

>

>

>

[Guest guest]

Robyn: My name is Sylvia and my daughter was dx with ACM at 3 1/2,

last year. It was so scary and painful...same as you

described..crying,holding head and vomiting at times. I would like to help

you if I can. Call me at 561 218-0844 if you'd like, I'm in Florida. I may

not be able to talk right then, or you might get a machine but I'll call you

just as soon as I can. Until we got to the neurosurgeon, we did a few things

-- gave the highest dose possible of Tylenol for pain control, kept the diet

bland and did not push food, and helped with position -- i.e. she

would feel better when lying down. We also did not make many demands on her.

When we saw neurosurgeon, it became clear she had developed hydrocephalus

from the ACM compression and needed something done right away. He

recommended a third ventricle ventriculostomy (let me know if you know what

this is). We made the decision to do it right away. Post surgery was tough,

but with patience and luck, we all got thru it and became better. At

least the headaches went away. The tingling can very well be from the ACM.

had and still has many other side effects. She had not had a

decompression for multiple reasons, but we have had a better than average

year and a half since the symptoms you describe. We are neurologically

stable for now, with follow up MRIs every 5 months and consults with

neurology and nsg, and ophthalmology. Hang it there, be sure you see the

neurosurgeon soon, and ask for help. This is the right group! SYlvia

>From: RobynWil@...

>To: Chiari

>Subject: 3 yr old daughter diagnosed

>Date: Tue, 27 Nov 2001 02:09:00 EST

>

>Hi, I am a new member and this is the first time that I have written. My

>3

>yr old daughter was diagnosed the day before Thanksgiving with Chiari. My

>pediatrician has never dealt with this so he hasn't been able to help me

>much. He is referring us to a Ped. Neurosurgeon in Dallas very soon. All

>I

>know is that she is type one and about 12mm. This is really breaking my

>heart because I don't know what she is feeling or how much pain she is in

>and

>I don't think that she would know how to explain it to me. She has

>headaches

>so bad that she holds her head in both hands and cries and cries.

>Sometimes

>she screams out and twice has thrown up because of them. She also says

>that

>she is itchy on her arms. Is this the tingling or pin & needles sensations

>that she is feeling? I would appreciate any feedback from mothers who have

>children with Chiari. I don't know what to do or what not to do to help

>her

>while we are waiting to see the neurosurgeon.

>Thank You, Robyn ( Shelby's Mom)

>

>

>