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#2332 From: "temp_mom" <temp_mom@...>
Date: Wed Jun 10, 2009 2:42 am
Subject: oral baclofin 		temp_mom
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forgive the spelling but have any of you used oral baclofin ? what were the

results?where there any side effects to watch for?/


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#2333 From: miriam weir <mweir2@...>
Date: Wed Jun 10, 2009 2:57 am
Subject: Re: oral baclofin 		mweir2
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Krys is now 19-of all the meds we have tried for various reasons with her disabilities, oral baclofin was the one that was a "no go" from the first day or two. The tiniest dosage caused her to become almost a vegetable--and she is a sharp kid-forgets nothing and loves life dispite her disabilities. By the end of the second day, her head was almost to her knees all the time--lost all trunk control, drooled tremendously, very spacey. If it causes your child to respond like Krys, you wont have to look very hard for what the problems and symtoms might be--hope it works better for you-Miriam

--- On Tue, 6/9/09, temp_mom <temp_mom@...> wrote:

From: temp_mom <temp_mom@...>
Subject: [cerebralpalsy] oral baclofin
To: cerebralpalsy@yahoogroups.com
Date: Tuesday, June 9, 2009, 10:42 PM

forgive the spelling but have any of you used oral baclofin ? what were the results?where there any side effects to watch for?/



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#2334 From: MARY PHILLIPS <p_l_u_m_d_u_m_b@...>
Date: Wed Jun 10, 2009 6:03 am
Subject: Re: oral baclofin 		p_l_u_m_d_u_m_b
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Hi there. I have a 3 year old son diagnosed with spastic quad CP and Dysphagia (swallowing issues). As soon as we started him on the oral baclofen, within a couple of days, he started having even more trouble than usual swallowing his food and actually aspirated on his apple juice. He also had a very strong AT &R reflex that surfaced and even after taking him off it, the characteristics of the athetosis are still there and are not masked by his spasticity anymore. His arms and head turn sideways and he gets stuck there. He has been off the medicine now for 6-8 months. It was not the right choice for my son! Hope that this helps some. Take care and good luck!! Maria

--- On Tue, 6/9/09, temp_mom <temp_mom@...> wrote:

From: temp_mom <temp_mom@...>
Subject: [cerebralpalsy] oral baclofin
To: cerebralpalsy@yahoogroups.com
Date: Tuesday, June 9, 2009, 7:42 PM

forgive the spelling but have any of you used oral baclofin ? what were the results?where there any side effects to watch for?/



Reply | Forward
#2337 From: Sandra Sanchez <temp_mom@...>
Date: Wed Jun 10, 2009 1:52 pm
Subject: Re: oral baclofin 		temp_mom
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hi my daughter is 4 and has mild cp only in her legs, she is high funtioning,she walks and runs granted her gait is a little odd but she keeps up with her 6 year old brother.she see's dr stelly seitz in houston,
she has had countless botox injections.they would like her to have a rhyzodomy.but i feel that is way to invasive right now.her orto wants to cut her bones to straighten her feet she is very pigon toed. i need to talk  to other parents that have gone thru these things. now they want to do oral bacolfen. she also has a seizure dissorder.they have her on carbatrol and keppra. im so afraid of damaging her liver.i guess im a little parinoid.i lost a daughter to cancer in june last year .now my son is fighting that same battle. different cancer.so im scared to death to try new stuff.. and advice you all can give is appreciated
 

From: MARY PHILLIPS <p_l_u_m_d_u_m_b@...>
To: cerebralpalsy@yahoogroups.com
Sent: Wednesday, June 10, 2009 1:03:13 AM
Subject: Re: [cerebralpalsy] oral baclofin

Hi there. I have a 3 year old son diagnosed with spastic quad CP and Dysphagia (swallowing issues). As soon as we started him on the oral baclofen, within a couple of days, he started having even more trouble than usual swallowing his food and actually aspirated on his apple juice. He also had a very strong AT &R reflex that surfaced and even after taking him off it, the characteristics of the athetosis are still there and are not masked by his spasticity anymore. His arms and head turn sideways and he gets stuck there. He has been off the medicine now for 6-8 months. It was not the right choice for my son! Hope that this helps some. Take care and good luck!! Maria

--- On Tue, 6/9/09, temp_mom <temp_mom@yahoo. com> wrote:

From: temp_mom <temp_mom@yahoo. com>
Subject: [cerebralpalsy] oral baclofin
To: cerebralpalsy@ yahoogroups. com
Date: Tuesday, June 9, 2009, 7:42 PM

forgive the spelling but have any of you used oral baclofin ? what were the results?where there any side effects to watch for?/




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#2335 From: betsy pajak <pajak4@...>
Date: Wed Jun 10, 2009 10:24 am
Subject: Re: oral baclofin 		pajak4
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Matt is 5 and he is on 10mg 3 times a day.  It is a muscle relaxent so he was sleepy for the first week, but it all evens out.  I think it helps keep his tightness from being painful.
 
betsy

From: temp_mom <temp_mom@...>
To: cerebralpalsy@yahoogroups.com
Sent: Tuesday, June 9, 2009 10:42:09 PM
Subject: [cerebralpalsy] oral baclofin

forgive the spelling but have any of you used oral baclofin ? what were the results?where there any side effects to watch for?/



Reply | Forward
#2339 From: "temp_mom" <temp_mom@...>
Date: Thu Jun 11, 2009 1:51 pm
Subject: Re: oral baclofin 		temp_mom
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good morning thanks for your post. how severe is matts cp. i   am concerened

about the  bacolfin because moriah also has seizures and that is one of the side

effects,ant the effect on her liver

she is already on 1850 mgs of seizure meds.i don't know if it could be

depramental to her .you know what i mean

--- In cerebralpalsy@yahoogroups.com, betsy pajak <pajak4@...> wrote:

>

> Matt is 5 and he is on 10mg 3 times a day.  It is a muscle relaxent so he was

sleepy for the first week, but it all evens out.  I think it helps keep his

tightness from being painful.

>

> betsy

>

>

>

> ________________________________

> From: temp_mom <temp_mom@...>

> To: cerebralpalsy@yahoogroups.com

> Sent: Tuesday, June 9, 2009 10:42:09 PM

> Subject: [cerebralpalsy] oral baclofin

>

>

>

>

>

> forgive the spelling but have any of you used oral baclofin ? what were the

results?where there any side effects to watch for?/

>


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#2340 From: betsy pajak <pajak4@...>
Date: Fri Jun 12, 2009 12:29 pm
Subject: Re: Re: oral baclofin 		pajak4
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That's a hard one to answer.  Matt is 5.  He had a vagus nerve stimulator implanted just after 2 years old.  He has complex partial seizures.  Up until the vns, he had hundreds of episodes a day and was on several meds.  the meds always seemed to make things worse.  any kind of pain made seizures worse.  so, now he is on a small amount of meds, a bit of baclofen and the vns.  He is a much happier kid.   you can see him on youtube at
http://www.youtube.com/user/smopajak4
 
betsy

From: temp_mom <temp_mom@...>
To: cerebralpalsy@yahoogroups.com
Sent: Thursday, June 11, 2009 9:51:51 AM
Subject: [cerebralpalsy] Re: oral baclofin

good morning thanks for your post. how severe is matts cp. i am concerened about the bacolfin because moriah also has seizures and that is one of the side effects,ant the effect on her liver
she is already on 1850 mgs of seizure meds.i don't know if it could be depramental to her .you know what i mean
--- In cerebralpalsy@ yahoogroups. com, betsy pajak <pajak4@...> wrote:
>
> Matt is 5 and he is on 10mg 3 times a day.  It is a muscle relaxent so he was sleepy for the first week, but it all evens out.  I think it helps keep his tightness from being painful.
>
> betsy
>
>
>
> ____________ _________ _________ __
> From: temp_mom <temp_mom@.. .>
> To: cerebralpalsy@ yahoogroups. com
> Sent: Tuesday, June 9, 2009 10:42:09 PM
> Subject: [cerebralpalsy] oral baclofin
>
>
>
>
>
> forgive the spelling but have any of you used oral baclofin ? what were the results?where there any side effects to watch for?/
>



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#2341 From: Colin Kong <ckonger@...>
Date: Fri Jun 12, 2009 12:50 pm
Subject: What does a seizure look like? 		ckonger74
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Hi Everyone.

I had a quick question.

What exactly does a seizure look like? My 1 yo son does not have a history of seizures but as he was sleeping the other night, all of a sudden, he raised his hands and outstretched his legs and they quivered for about 10 seconds.

Since he is on a monitor, we saw that his heart rate and O2 saturation did not change. He may have changed color some but was soon back to normal.

Anyone have an opinion?

Thanks!

Colin



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#2342 From: Sandra Sanchez <temp_mom@...>
Date: Fri Jun 12, 2009 5:10 pm
Subject: Re: What does a seizure look like? 		temp_mom
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my daughter has seizures and is sounds like he might have been dreaming but I would let your nero dr know

From: Colin Kong <ckonger@...>
To: Cerebral Palsy Groups <cerebralpalsy@yahoogroups.com>
Sent: Friday, June 12, 2009 7:50:42 AM
Subject: [cerebralpalsy] What does a seizure look like?


Hi Everyone.

I had a quick question.

What exactly does a seizure look like? My 1 yo son does not have a history of seizures but as he was sleeping the other night, all of a sudden, he raised his hands and outstretched his legs and they quivered for about 10 seconds.

Since he is on a monitor, we saw that his heart rate and O2 saturation did not change. He may have changed color some but was soon back to normal.

Anyone have an opinion?

Thanks!

Colin



Hotmail® has ever-growing storage! Don’t worry about storage limits. Check it out.



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#2336 From: Stacy <goflymykite@...>
Date: Wed Jun 10, 2009 1:00 pm
Subject: Re: oral baclofin 		goflymykite
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Hi there - Katie has taken baclofen by her g-tube. I found . that at first it did make her very sleepy, even a tiny dose. Now, that seems to have evened out, but it also made her quite fussy, and I have wondered if it upsets her tummy. (she has a pretty sensitive tummy). So, she has one teeny dose of 2 mg a day, and we use clonazepam primarily for her tone. This usually makes her sleepy briefly, then she's good to go. ALthough, when we first started that, she was very sleepy for a week or two, as well...
Stacy


--- On Tue, 6/9/09, temp_mom <temp_mom@...> wrote:

From: temp_mom <temp_mom@...>
Subject: [cerebralpalsy] oral baclofin
To: cerebralpalsy@yahoogroups.com
Date: Tuesday, June 9, 2009, 9:42 PM

forgive the spelling but have any of you used oral baclofin ? what were the results?where there any side effects to watch for?/



Reply | Forward
#2338 From: "Bruce & Ronda Buckley" <5buckleys@...>
Date: Wed Jun 10, 2009 2:12 pm
Subject: Re: oral baclofin 		rondabuckley
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I wanted to comment to tell you that we are blessed with a son Luke that has Quad Cp . He is only four and we have been following his hip development with an Ortho . We have talked about hip surgery but I'm really not sure I want to put him through the pain and the casting as well as the muscle spasms from being in a fixed cast for weeks .
I spoke to a mom yesterday that has been through allot of ortho stuff with her son and she said "put surgery off as a last resort ", "Wait as long as Luke is not in pain " ! I just wanted to pass on her advice to you .
 Have you tired a SWASH brace ? This brace would help her leg and possibly foot position while she walks ?
Thinking of you and sending hope and healing your way today , Hugs Ronda & Luke
 
 
 
----- Original Message -----
Sent: Wednesday, June 10, 2009 6:52 AM
Subject: Re: [cerebralpalsy] oral baclofin

hi my daughter is 4 and has mild cp only in her legs, she is high funtioning,she walks and runs granted her gait is a little odd but she keeps up with her 6 year old brother.she see's dr stelly seitz in houston,
she has had countless botox injections.they would like her to have a rhyzodomy.but i feel that is way to invasive right now.her orto wants to cut her bones to straighten her feet she is very pigon toed. i need to talk  to other parents that have gone thru these things. now they want to do oral bacolfen. she also has a seizure dissorder.they have her on carbatrol and keppra. im so afraid of damaging her liver.i guess im a little parinoid.i lost a daughter to cancer in june last year .now my son is fighting that same battle. different cancer.so im scared to death to try new stuff.. and advice you all can give is appreciated
 

From: MARY PHILLIPS <p_l_u_m_d_u_m_b@yahoo.com>
To: cerebralpalsy@yahoogroups.com
Sent: Wednesday, June 10, 2009 1:03:13 AM
Subject: Re: [cerebralpalsy] oral baclofin

Hi there. I have a 3 year old son diagnosed with spastic quad CP and Dysphagia (swallowing issues). As soon as we started him on the oral baclofen, within a couple of days, he started having even more trouble than usual swallowing his food and actually aspirated on his apple juice. He also had a very strong AT &R reflex that surfaced and even after taking him off it, the characteristics of the athetosis are still there and are not masked by his spasticity anymore. His arms and head turn sideways and he gets stuck there. He has been off the medicine now for 6-8 months. It was not the right choice for my son! Hope that this helps some. Take care and good luck!! Maria

--- On Tue, 6/9/09, temp_mom <temp_mom@yahoo. com> wrote:

From: temp_mom <temp_mom@yahoo. com>
Subject: [cerebralpalsy] oral baclofin
To: cerebralpalsy@ yahoogroups. com
Date: Tuesday, June 9, 2009, 7:42 PM

forgive the spelling but have any of you used oral baclofin ? what were the results?where there any side effects to watch for?/




Reply | Forward
 
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