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I need Info..please!

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Old 05-10-2006, 09:16 AM   #1
Join Date: Mar 2006
Location: Las vegas NV
Posts: 97
klstoneking HB User
I need Info..please!

I need some information, im hoping someone has experienced this or know someone who has. I took my daughter Hannah (15months old) to her doctor today for shots, and got a shock to say the least. Her head has not grown ANY since she was 9 months old, and she is still the same weight as she was at 9 months old. Its very scary and odd to say the least. We are going back to the neurologist in a couple of weeks. She has 2 cysts on her brain, could that be making her head not a bit confused and upset from this. Im not sure whats going on or what can cause this. She has many other problems, none like this, also i found out today , she is having seizures...also a shock, she does this thing where she kinda fades in and out, she will be playing and all of a sudden just blank out and stare off...then she stops and continues what she was doing. I never knew that, that is what was happening. Man what a day.....i need some advice, maybe someone has had anything similar to this happen. I also need a good specialist. I dont care where they are located. We have traveled to out of town doctors, and really are getting no answers..The older she gets the more problems seem to develpo. I need a Neurologist that knows a thing or two about CP babies and problems related. Please, id anyone knows any let me know. Any advice or referals are greatly used


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Old 05-10-2006, 09:56 AM   #2
Join Date: Mar 2006
Location: ny
Posts: 41
jandd HB User
Re: I need Info..please!

St. Louis children's hospital has a very good CP clinic. The neurologist there, is a very well known one, her name is
Janice Brunstrom, MD

One Children's Place
2nd Floor
St. Louis, Missouri 63110
Phone: 314.454.6120

Then they there is a specialist in seizures.

Liu Lin-Thio, MD

1 Children's Place
Suite 12E47
St. Louis, Missouri 63110
Phone: 314.454.4089

And finally Dr. Park, he is a neurosurgeon, doing SDR. I am not sure if your child has spastic CP, if so, you might want to get an eval from him as well. But i your daughter is way too young for this surgery at this time.

All three doctors are some of the best in the country. People all over the contry and world come to see them. Dr. B has CP herself, so she knows first hand what she is talking about.
Hope it helps. I know how it feels not to know where to turn and doctors not being much help.
good luck

Old 05-10-2006, 09:58 AM   #3
Join Date: Nov 2004
Posts: 310
Hope25 HB User
Re: I need Info..please!

Hi Kellie,

So sorry to hear about your situation with your little one. I could only imagine what you're going through and your inability to make all that go away for your baby.

However, are you sure this is CP or CP related? It doesn't necessarily sound like a neurological condition related to CP. Of course, I'm not a doctor. But there are many other influences that have this kinds of effects, from what I read. The enviroment, for one. Food that we eat, etc. Some medical conditions that we are facing today are the result of these things, and it's hard to find the exact diagnosis. Could it be she's epileptic?

The best thing to do is to have 3 or 4 evaluations from different doctors and see if they each say the same thing. Sometimes finding a doctor that suits a patient's best interests is so hard, being that most are just looking after their own interest first nowadays. But I wish you the very best, and stay strong for your child.

Old 05-11-2006, 12:27 AM   #4
Join Date: Apr 2006
Location: Vernal Utah USA
Posts: 3
FeistyCowgirl HB User
Re: I need Info..please!

I have a daughter who has the same type of seizures she does have CP but as a baby would do the stare and blank look often, She was seen by a pediatric nero at Lucille Packard childrens hospital by Dr Olson and his team she is now 11 and on a medication called Keppra. My suggestion is get a EEG and a MRI also make sure you see a pediatric nero not just a Dr of nero! My daughter went thru a time when she didn't gain any weight and was put on a high fat diet and now she is a average kiddo altho she has CP and seizures I wish you good luck and remember you know your child best and if your not getting answers then go get another opinion.

Old 05-11-2006, 11:11 AM   #5
Junior Member
Join Date: Jan 2006
Posts: 27
Teryn HB User
Re: I need Info..please!

Every time we go to the neurologist she makes sure Alexis' head is growing. Alexis went without oxygen for a long time in the womb and because the damage is severe her brain not growing normally is a possibility they warned us about. I don't know if your daughter had a trauma so it might be something different for Hannah. We see Dr. Amy Kao in Portland, Or.

Does Hannah eat well? Alexis at 15 months is only really able to eat from the bottle and she has reflux so she is gaining weight very slowly. Her pediatrician thinks that at some point we'll have to get a feeding tube.

Alexis also has what appears to be staring episodes. At first it was really scary and I would cry every time it happened but it doesn't seem to bother her at all and her doctors say they do not hurt her. They want to get them under control though because those kinds of seizures can interfere with learning later on. Alexis is on trileptol for seizures.

I'm sorry that you received such painful info. I hope your search for a specialist is successfull. Hannah is lucky to have you for a mommy.

Old 05-14-2006, 05:02 AM   #6
Join Date: Mar 2006
Location: Las vegas NV
Posts: 97
klstoneking HB User
Re: I need Info..please!

Thanks for all the advice on where to go for Doctors....they have said that its all related to her CP ( i find that hard to believe) . She does eat VERY well,, which makes the whole, "not gaining weight" odd. she eats more than my 7 year old at times. They said the seizures could be from her cysts on the brain causing pressure, and when that happens, a seizure happens. But that they cant remove the cysts so the seizures will have to be controlled with Meds. I have heard great things about the doctors at childrens hospital in st louis, now only if i can get a referral..=/ Teryn...hannah suffered severe lack of oxygen when i was in labor, i think thats why she is the way she is now. Her heart rate went from 170 to 90.....for a period of 4 hrs, off and on..But im at a lost about the whole "small head" thing. Ive never heard of that...and i guess that could have something to do with the cysts...i wonder if it is possible that the cysts are making it hard for her head to grow. She does have 3 rather large cysts. But to me she looks normal where that is concerned. I will update when we go to The Childrens Hospital here on the 26th. I hope i will get some answers this time..Thanks SO MUCH for all the opinions and advice, it will help me in asking questions to the doc as well.

feeling better now

Old 05-14-2006, 02:27 PM   #7
Join Date: Mar 2005
Location: Pittsburgh, Pennsylvania
Posts: 450
Steffers2318 HB User
Re: I need Info..please!

Originally Posted by klstoneking
She does eat VERY well,, which makes the whole, "not gaining weight" odd. she eats more than my 7 year old at times.
Spasticity causes muscles to contract constantly, and muscle movement uses up A LOT of energy. So she uses up a lot of calories, more than the average person, when just sitting around. To get enough calories to gain weight, she would have to eat even more than she does...which she really can't, because a person can only eat so much . A common symptom of CP is being underweight...I myself have always eaten a lot and have always been underweight. HTH.

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