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Cerebral Palsy anyone??


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  #1  
November 2nd, 2006, 10:44 AM
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Join Date: Sep 2005
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My daughter Julianna his CP. I have been on this forum for over a year, but I left for a while because I was SO busy with the kids.

For those who don't remember me, I have three girls. Caydi is 5 1/2, Juli is 3 1/2, and Peighton is 1. I am also expecting a baby boy on Dec. 16.


Julianna has a very light case of CP but it still can interupt her life. At this point she is able to walk with braces and a walker which is excellent! She gets physical thereapy three times a week and goes to Pre-School at a regular public school, but she is in a class with SN children. For the most part she is doing well.

Anyone else have a child with CP??
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Caydence (4/21/01). Julianna (2/5/03). Peighton (9/1/05). Declan (11/28/06). Kelsey (12/18/07).</span>
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  #2  
November 2nd, 2006, 10:59 AM
Mom2brodyanddani
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My 9 mo old daughter was just diagnosed recently with CP. She has spastic diplegia in her legs and is very hypotonic in her trunk. It sounds like your daughter is doing great! WB to JM!
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  #3  
November 2nd, 2006, 01:00 PM
LuckyGirlx4's Avatar Mega Super Mommy
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My daughter has CP too. Anika is 4 years old and has Lowtone CP, which means her body is more lowtone then high tone. Most of her high tone is on her left side, so she's considered Left Hemiplegia; but her low muscle tone is throughout her body. NIce to see you!
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  #4  
November 2nd, 2006, 05:37 PM
*Lindsay*'s Avatar Platinum Supermommy
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Location: Virginia
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While we don't have an official dx of this, we will be getting one soon, for sure. I am not sure, but I am scared for it.


Quote:
My 9 mo old daughter was just diagnosed recently with CP. She has spastic diplegia in her legs and is very hypotonic in her trunk. It sounds like your daughter is doing great! WB to JM![/b]

When did they give you a dx for cp? I thought they didn't do it until at least one? Who dx'ed it? Your ped, neurologist???

Sorry for all the questions, but I am anticipating a dx of it next week and am terrified.
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  #5  
November 2nd, 2006, 08:48 PM
Mom2brodyanddani
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Quote:
While we don't have an official dx of this, we will be getting one soon, for sure. I am not sure, but I am scared for it.


Quote:
My 9 mo old daughter was just diagnosed recently with CP. She has spastic diplegia in her legs and is very hypotonic in her trunk. It sounds like your daughter is doing great! WB to JM![/b]

When did they give you a dx for cp? I thought they didn't do it until at least one? Who dx'ed it? Your ped, neurologist???

Sorry for all the questions, but I am anticipating a dx of it next week and am terrified. [/b]

She was dx'd a few weeks ago. We are seen at a clinic that has ped's, neuro's and physical med docs on site that review all the cases that come in. The ped was the one who signed it on her chart... but when I had my meeting with all the docs together, the neuro said that he has been expecting to give her this dx since her brain scans at 2 wks that showed the extent of her brain damage. He just didn't knoe what kind of CP she would have. She is 9 mos and not even reaching the 2-3 mo gross motor milestones. I was terrified of the dx too, and horribly upset when we got it, but I'm doing better now. . . Onwards and upwards!


ps. Sorry to hijack your thread!
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  #6  
November 28th, 2006, 05:17 PM
ZoesMommie's Avatar Super Mommy
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Zoe was dx with cp oct 17. but our nuero is still unsure how bad it is. he said most likey hell have more of an idea next vist.
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  #7  
December 1st, 2006, 06:35 PM
*Lindsay*'s Avatar Platinum Supermommy
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Quote:
She was dx'd a few weeks ago. We are seen at a clinic that has ped's, neuro's and physical med docs on site that review all the cases that come in. The ped was the one who signed it on her chart... but when I had my meeting with all the docs together, the neuro said that he has been expecting to give her this dx since her brain scans at 2 wks that showed the extent of her brain damage. He just didn't knoe what kind of CP she would have. She is 9 mos and not even reaching the 2-3 mo gross motor milestones. I was terrified of the dx too, and horribly upset when we got it, but I'm doing better now. . . Onwards and upwards!

ps. Sorry to hijack your thread![/b]
Sorry I never got back to you. If you don't mind me asking, what did her brain scans show? Sydney is one year and still is at about a 4-5 month level with okay head control, but not completely steady yet. I keep wondering if and when it will ever get completely sturdy. Her doctors say it will though. I hope so.

We still haven't gotten a dx of CP yet, but it is inevitable.
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  #8  
December 9th, 2006, 09:02 PM
Mom2brodyanddani
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Quote:
Sorry I never got back to you. If you don't mind me asking, what did her brain scans show? Sydney is one year and still is at about a 4-5 month level with okay head control, but not completely steady yet. I keep wondering if and when it will ever get completely sturdy. Her doctors say it will though. I hope so.

We still haven't gotten a dx of CP yet, but it is inevitable. [/b]
Dani has PVL(periventricular leukomalacia). The damage in her brain looks pretty much solid white on MRIs and other brain scans because the "white" matter(nerves mostly) is either damaged or dead. She had extensive bleeding in her brain(IVH) when she was in NICU. The combination of IVH and PVL pretty much meant CP from the beginning. Her gross motor skills are particularly affected.
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  #9  
December 10th, 2006, 04:01 AM
*Lindsay*'s Avatar Platinum Supermommy
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Quote:
Quote:

Sorry I never got back to you. If you don't mind me asking, what did her brain scans show? Sydney is one year and still is at about a 4-5 month level with okay head control, but not completely steady yet. I keep wondering if and when it will ever get completely sturdy. Her doctors say it will though. I hope so.

We still haven't gotten a dx of CP yet, but it is inevitable. [/b]
Dani has PVL(periventricular leukomalacia). The damage in her brain looks pretty much solid white on MRIs and other brain scans because the "white" matter(nerves mostly) is either damaged or dead. She had extensive bleeding in her brain(IVH) when she was in NICU. The combination of IVH and PVL pretty much meant CP from the beginning. Her gross motor skills are particularly affected.
[/b]
I have never heard of PVL. I am learning so much new stuff with all this. Did you know something was up when you were pregnant or not until she was born? We didn't know until 4 months old!
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  #10  
December 10th, 2006, 03:31 PM
Mom2brodyanddani
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Dani was a preemie, her issues are a result of that, so I had no idea while I was pg that she was going to have special needs.
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  #11  
January 1st, 2007, 09:00 PM
m.and.a
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I've been totally avoiding any info on CP on purpose. We were always told that with her extreme prematurity, illness, infections, mega doses of steroids... etc that CP would be a possibility, but no one has made mention if it so far. What's the earliest a child can be diagnosed. Is there an age a child reaches that it's no longer a concern?

Aleah has had normal head ulstrasounds, MRI's, and EEG's so far. She did have some "iritable focus" on an early EEG after I noticed a seizure, but that seems to have resolved. I'd guess CP isn't in our cards, but like I said, I've been an ostritch about the entire issue.
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  #12  
January 1st, 2007, 09:59 PM
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Hello,

Yes, I have a child with CP. Lucas is 3-1/2 years old. Born premature at 27.5 weeks he developed bilateral brain bleeds (grade IV / III), hydrocephalus and PVL.

He was barely sitting at 18 months when we put him into an intensive pediatric therapy program and hbot therapy.

He is now walking and talking, wears an afo on his right leg and an orthotic on his right hand. He is right side hemi (mild cp).

Our big difficulty now is potty training. Doesn't seem interested, even gets mad when I even ask him about going to the potty.

Any suggestions would be appreciated.

Eileen


Quote:
My daughter Julianna his CP. I have been on this forum for over a year, but I left for a while because I was SO busy with the kids.

For those who don't remember me, I have three girls. Caydi is 5 1/2, Juli is 3 1/2, and Peighton is 1. I am also expecting a baby boy on Dec. 16.


Julianna has a very light case of CP but it still can interupt her life. At this point she is able to walk with braces and a walker which is excellent! She gets physical thereapy three times a week and goes to Pre-School at a regular public school, but she is in a class with SN children. For the most part she is doing well.

Anyone else have a child with CP??[/b]
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  #13  
January 2nd, 2007, 06:03 AM
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Join Date: May 2004
Posts: 393
[quote]
Hello,

Yes, I have a child with CP. Lucas is 3-1/2 years old. Born premature at 27.5 weeks he developed bilateral brain bleeds (grade IV / III), hydrocephalus and PVL.

He was barely sitting at 18 months when we put him into an intensive pediatric therapy program and hbot therapy.

He is now walking and talking, wears an afo on his right leg and an orthotic on his right hand. He is right side hemi (mild cp).

Our big difficulty now is potty training. Doesn't seem interested, even gets mad when I even ask him about going to the potty.

Any suggestions would be appreciated.

Eileen


Eileen,
I am in the same situation as you with the potty training. My little boy Cade is approaching 4 1/2. He has left side hemi and zero interest in potty training. He is also walking and talking and despite great efforts to potty train we have had zero progress. I would be very interested in anything you find out. What have you tried so far?

Jenn
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  #14  
January 2nd, 2007, 06:33 AM
ThatStaceyGirl's Avatar Oh noes!
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My DS was diagnosed with a mild case of cerebral palsy by his neurologist on October 2nd, 2006.
He's seen on a weekly basis by a speech, physical, and occupational therapist. He's slowly making progress.
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  #15  
January 3rd, 2007, 06:47 AM
*Lindsay*'s Avatar Platinum Supermommy
Join Date: Apr 2006
Location: Virginia
Posts: 12,516
Quote:
What's the earliest a child can be diagnosed. Is there an age a child reaches that it's no longer a concern?[/b]
I *think* that a dx of CP is rarely made before 1 year old, at least from what I have read/learned from doctors.

We were told yesterday that Sydney would be considered spastic quadriplegic CP because she is so tight in her arms and legs.

She gave us a script for valium to help loosen her up. It is a very small dose. Anyone ever done this and what was your result. I have a call in to the neuro first before I even fill the scrip. I need to know if it will interfere with her Keppra although the doctor said it wouldn't and would likely help the mycolonic jerks that she has! That would be nice! But, I must be sure, so I always double and even triple check!
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  #16  
January 3rd, 2007, 03:58 PM
ThatStaceyGirl's Avatar Oh noes!
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Quote:
Quote:
What's the earliest a child can be diagnosed. Is there an age a child reaches that it's no longer a concern?[/b]
I *think* that a dx of CP is rarely made before 1 year old, at least from what I have read/learned from doctors.

We were told yesterday that Sydney would be considered spastic quadriplegic CP because she is so tight in her arms and legs.

She gave us a script for valium to help loosen her up. It is a very small dose. Anyone ever done this and what was your result. I have a call in to the neuro first before I even fill the scrip. I need to know if it will interfere with her Keppra although the doctor said it wouldn't and would likely help the mycolonic jerks that she has! That would be nice! But, I must be sure, so I always double and even triple check!
[/b]
I'll have to ask about Valium at his next appt. Kade is similar in being very tight in his arms and legs. The most that's been suggested to me so far was Botox injections for his legs. But his physical therapist said it may be a while yet before the neurologist recommends them.

ETA: Kade was diagnosed with CP at 9 months. That was based on his MRI's and recommendations from his 3 therapists. I think he was diagnosed so early because Indiana has an early intervention program for special needs children.
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