Diagnosed as a teen?

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

Moderators: Tmagic650, Lori-ann

dskillian
Posts: 1
Joined: Thu Nov 09, 2006 3:11 am

Diagnosed as a teen?

Postby dskillian » Thu Nov 09, 2006 3:22 am

Several months ago, I noticed Alex, my 15 YEAR OLD was walking
funny. I wouldn't say he was limping. That sounded too scary. I
thought maybe it was bad posture. I really didn't know what to think
about it.

In August, I noticed his shoulder blades looked crooked. I took him
to his pediatrician thinking that scoliosis was the problem. In
addition to possible scoliosis, the doctor measured Alex's legs and
said one was longer than the other. Another symptom was Alex was
tired all the time. He referred Alex to the Shiner's Hospital in
Houston for an evaluation.

On Alex's first visit to the Shiners Hospital in September,
several x-rays were taken of his legs and spine. In addition, he had
a thorough exam. He had to walk and run down the hall many times, so
the doctor could get an idea of Alex's gait.

We were told that he had a small curve in spine, but they were more
concerned with the "contractures" in his knees. A word we were not
familiar with. Alex cannot straighten out his legs. He walks with
bent knees. Since he always wear baggy pants we were unaware of
this.

We were sent upstairs where a physical therapist showed Alex several
stretches to lengthen his hamstrings. An MRI was ordered and we were
told to return in 6 weeks.

The day following the MRI, Alex ran a 101 temp. That was on a
Friday. I began thinking maybe the fever was related to his legs.
The following Monday, he was back at the pediatrician where they
attempted to draw blood. Two nurses who had tried to draw his blood
agreed that his "blood was too thick." We were told that was Alex
was dehydrated and needed to drink lots of Gatorade and come back in
three days.

He did and we went back. A few days later the doctor called saying
that Alex was relapsing from a mono virus. We were unaware of him
ever having mono.

In the mean time I had collected a few tape samples from different
areas of our home and taken them to a lab in Conroe to test for
mold. Another thing we're wondering is if he has "building
sickness". Since we homeschool we are here 24/7 his body might be
reacting negatively to the air quality. He is running a low grade
fever almost daily and is extremely lethargic.

The doctors all agree that the fever/tiredness is not related to the
leg contractures

Last Monday, I took Alex to an allergist. He did not think that Alex
currently had mono though his level of the virus that causes mono is
high. He ordered several blood tests to see if Alex is allergic to
various molds, grasses, animals. etc. Depending on the results of
the blood tests Alex and I might be looking for a place to stay for
several weeks to see if his health improves.

Last week at the 2nd appointment at the Shriners Hospital the
doctor from the "spinal clinic" told us he had good news. The MRI
was great. Then he said that he thinks Alex might have cerebral
palsy. My mind is racing with questions. I went straight to Barnes
and Noble and saw zillions of boos on Autism and ADHD, but not a
single book about Cerebral Palsy.

The following day I found a good book at he library, Cerebral Palsy-
A Complete Guide for Caregiving. I've learned a few things.

This Friday he has another appointment at Shriners this time with
the neurologist. I was hoping you could tell me what to expect from
this appointment. If he has Cerebral Palsy what do I do next?

User avatar
admin
Site Admin
Posts: 98
Joined: Wed May 10, 2006 2:18 pm

Re: Diagnosed as a teen?

Postby admin » Thu Nov 09, 2006 2:01 pm

Hi dskillian,
Welcome to the forum. I moved your post to the parents section since it deals more with your topic.

First off..it seems a bit strange to me that he started showing symptoms at 15. Normally a person has CP from birth and the signs show up pretty early.

You made a good choice with Shriners. I went there a lot in my younger years and they were great in finding the care and specialists that I needed to improve my condition.

If you find from his next appt. that he does have CP then there are some things they should be able to do to help out. I recently had a baclofen pump installed to help with the spasticity in my legs and it works pretty well. The Dr's at Shriners should be able to give you some good advise for treatment based on the degree of CP that he is diagnosed with. Also, CP is normally pretty stable and does not get progressively worse, although it might get harder to deal with as your body ages. It sounds like he has a pretty mild case so I would not worry too much. Just keep an eye on him and if his symptoms start to worsen you might want to get another opinion as it could be something more serious.

Look forward to hearing about the follow up from his next appt. Feel free to jump on this forum any time and post any questions you have as I have quite a few other users that may be able to provide some input.

Thanks,
Mike
Cerebral Palsy Forum Admin

Tmagic650
Posts: 46
Joined: Mon May 22, 2006 5:34 pm
Location: Billings, Montana

Postby Tmagic650 » Sun Feb 04, 2007 11:50 am

Yes dskillian,
concentrate on getting Alex's health on track, and don't worry about CP just yet. Let Alex be a happy and healthy 15 year old. Keep a positive outlook and don't dwell on negative things
Spastic Diplegia CP
aka Kurt... Sometime walks, sometime rolls

jak
Posts: 2
Joined: Tue Sep 18, 2007 6:30 am

I'll say the same thing

Postby jak » Mon Sep 24, 2007 5:49 am

Tmagic650 wrote:Yes dskillian,
concentrate on getting Alex's health on track, and don't worry about CP just yet. Let Alex be a happy and healthy 15 year old. Keep a positive outlook and don't dwell on negative things

thats what I'd do

Kolac
Posts: 14
Joined: Thu Feb 15, 2007 10:15 pm

Re: I'll say the same thing

Postby Kolac » Mon Sep 24, 2007 6:04 am

jak wrote:
Tmagic650 wrote:Yes dskillian,
concentrate on getting Alex's health on track, and don't worry about CP just yet. Let Alex be a happy and healthy 15 year old. Keep a positive outlook and don't dwell on negative things

thats what I'd do


I just tried to post a message, and it wouldn't let me. I haven't posted in awhile because you were having such spam problems.

User avatar
admin
Site Admin
Posts: 98
Joined: Wed May 10, 2006 2:18 pm

Hi Kolak

Postby admin » Mon Sep 24, 2007 12:45 pm

Are you still having problems posting? It should be working fine now. Let me know.

Thanks,
Mike

Kolac
Posts: 14
Joined: Thu Feb 15, 2007 10:15 pm

Re: Hi Kolak

Postby Kolac » Mon Sep 24, 2007 2:08 pm

admin wrote:Are you still having problems posting? It should be working fine now. Let me know.

Thanks,
Mike


I'm still having problems. This is what popped up.

"In order to try to prevent spammers, we do not allow our users to post URLs in any form until they have posted at least 10 legitimate posts and have been with us for more than 7 days. We appreciate your understanding in this matter in order to help us eliminate spam from this forum. If you have somehow gotten this message even though you meet both of the criteria, please let us know ASAP."

Kolac
Posts: 14
Joined: Thu Feb 15, 2007 10:15 pm

Re: Hi Kolak

Postby Kolac » Mon Sep 24, 2007 2:10 pm

admin wrote:Are you still having problems posting? It should be working fine now. Let me know.

Thanks,
Mike


This is what I tried to type....

"Hello All,

It has been awhile since I last posted because of all the spam problems. Another really nice website that I came across is called Healthboards.com message boards: http://www.healthboards.com/boards/foru ... y.php?f=36. I have received so much info. about CP, and different treatments. I stopped going to your site because of all the bad spam. I'm glad it is under control, and have always ejoyed corresponding with the moderator, and of course Tmagic650. How is everyone? I know someone had some type of surgery months ago. Fill me in. It is nice to be back. Take care..... "

Tmagic650
Posts: 46
Joined: Mon May 22, 2006 5:34 pm
Location: Billings, Montana

Postby Tmagic650 » Mon Sep 24, 2007 3:53 pm

Yes Kolac,
Mike had surgery... I'm doing fine
Spastic Diplegia CP

aka Kurt... Sometime walks, sometime rolls

User avatar
admin
Site Admin
Posts: 98
Joined: Wed May 10, 2006 2:18 pm

Hi Kolak

Postby admin » Mon Sep 24, 2007 4:10 pm

Yeah, it was me that had surgery. Had my tib and fib broken to straighten my right foot as it was quite crooked. The surgery went pretty well although it was very hard getting around when I was "No weight baring". Had a couple falls but managed to keep most of the weight off the foot. I've had years of falling "experience" and have become quite the Jedi Master at directing my falls as to not damage myself or the objects around me :-)

Anyway, I'm doing fine now...started putting full weight on my foot a few weeks ago. Its still a little sore but its getting better by the day.

Haven't had time to be as active as I would like on this forum. My wife and I just bought our first house and now that my foot is better I get to start doing some of the work instead of just sitting around supervising...even though I'm quite good at that :-)

Glad to see you both back and I assure you that you won't see many spammers here anymore as I installed some new scripts that ban new users from posting links! Yeah!!

User avatar
admin
Site Admin
Posts: 98
Joined: Wed May 10, 2006 2:18 pm

Kolac - Fixed Your Link

Postby admin » Mon Sep 24, 2007 4:21 pm

Kolak,
You were getting that message because I had the limit set to 10 posts before a link could be posted. Looks like you just met the threshold but you were below that earlier when you tried to post. I moved the limit down to 7 posts and have corrected your link. It should let you post links from now on out but let me know if you still run into issues.

The change I made was done to discourage all the spammers and it appears to be working great so far. I took a brief look at that site and it looks great. Thanks for the info.

-Mike

erica
Posts: 2
Joined: Thu Oct 25, 2007 5:26 pm

Diagnosed has a teen response

Postby erica » Thu Oct 25, 2007 5:41 pm

Hey dskillian ...I'm sorry this must be a difficult time for you...honestly the best thing my parents ever did for me when it came to my cerebral palsy was to treat like everyone else, because it helped me realize I'm normal I just have a harder time then some.
Hope that helps.
erica