Brain damage - Mothering Forums

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#1 of 10 Old 09-04-2004, 06:45 AM - Thread Starter
 
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My baby was diagnosed with cerebral palsy at birth and has infantile spasms and epilepsy. We managed to breast feed for 5 months before the drugs destroyed her muscle tone and frequent hospitalisations put a stop to that. She's been on steroids for 2 months now and cries continously. At 6 months old she has just started to smile but never uses her arms or legs :-(
I'm looking for tips, ideas etc that will help her grow to the extent that her brain damage allows. I'm upset at not being able to breastfeed anymore and I hate giving her the drugs. My other 3 have never even had tylenol yet the poor baby is on 8 different meds!
How can I help her?
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#2 of 10 Old 09-04-2004, 07:56 AM
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#3 of 10 Old 09-04-2004, 03:54 PM - Thread Starter
 
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Thanks for that. Sometimes it is just hard. Seeing 'normal' babies who play with their hands etc. At 6 months Celyn has just strated to smile. The Infantile spasms regressed her back to newborn. She isn't aware she has hands or arms or legs and never moves them.
I think I'm still stuck in the grief :-(
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#4 of 10 Old 09-04-2004, 04:10 PM
 
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Have you tried working with an Occupational therapist?I don't think they have age limits but they could help you with exercises and activities to help you with.My dd has been seeing one since she was 2 and it has been a great experience.I know how difficult this is,these kids chose us to be their parents for a reason.
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#5 of 10 Old 09-04-2004, 10:42 PM
 
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LOok up the early intervention program in your county. These folks can help tie all the threads together to make a comprehensive treatment plan. YOu might also be able to meet some other parents to talk to (IRL) that might support your moving through the grief as well as giving practical suggestions.

 
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#6 of 10 Old 09-06-2004, 01:54 AM
 
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I remember reading about infantile spasms in one of the mainstream parenting mags a few years back. I know they covered one famliy in specific who tried a contraversial drug that worked and they were able to prevent further brain damage in there child. Not much help I know but it was in the last 4 years, probably parents or parenting mag if you ever get the time and want to look it up. I did a quick search online but didn't find the article

I was wondering, have you tried pyridoxine yet?

Seriously?
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#7 of 10 Old 09-06-2004, 04:24 PM
 
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Hi. my dd has severe brain damage and also suffers from Infantile Spasms and generalized seizures. She is 13 months old now, and is at about 5 months developmentally. We have been through alot over this past year, and have tryed every drug available in the US to contol her spasms, but there still isn't an end in sight. I know it is extremely hard to see other babies doing things yours should be doing, and it is incredibly hard dealing with the seizures, but it really does get better after awhile. If you ever need to talk to someone, feel free to pm me. (gotta go change a diaper now or I'd write more)
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#8 of 10 Old 09-06-2004, 05:46 PM
 
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Quote:
Originally Posted by Shyrley
I'm looking for tips, ideas etc that will help her grow to the extent that her brain damage allows. I'm upset at not being able to breastfeed anymore and I hate giving her the drugs. My other 3 have never even had tylenol yet the poor baby is on 8 different meds!
How can I help her?

I can't pretend to know what you're feeling. I imagine it must terribly frustrating. I second the suggestion to contact early intervention. In my state they have many services, all free of charge.

There is a very wide spectrum within CP in terms of intellectual and physical ability. The extent to which your DD will be affected won't be known until she's much older. I'm sure you know all this.

I have a very dear friend who has CP. He did not crawl until he was two years old. He was born in a 3rd world country that had no services, but what the women around him did was carry him constantly. He had constant pysical contact with either his mother or a female relative. He says he thinks this helped him. Intellectually he is within the normal range as an adult, with some disabilities that affect his mental processing. He is severely physically disabled. But until 3rd grade it was assumed he was mentally retarded.

Is there a CP support center/ organization near you?

Can you try massaging her arms and legs? This is no comparison, but I had to cover up my DD's hands for most of her infancy so that she would not scratch open her severe eczema. She eventually stopped trying to use her hands and would use her feet to pick things up. I would massage her arms and hands through the cloth to help her "remember" that she had them.

Can she make eye contact? Maybe looking at her and singing to her might help with the crying. Playing music?

You must be so exhausted. Plase get some support for you and her. If you don't mind letting us know what state you're in, maybe we can look things up for you.

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#9 of 10 Old 09-09-2004, 06:24 AM
 
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(((hugs)))
I have an idea of what you are going through. My son does not have CP, but has issues, including seizures and hypotonia and developmentally he is newborn or possibly preemie even though he was a term baby and now 6 mo's old. I actually dont know what is wrong with him at all. He's unusual.

Do you know why your baby cries continuously?
What drugs is she on?

My baby had a tegretol overdose due to pharmacy negligence in July and has had odd behavioural issues ever since. He has weird pain behaviours and cries inconsolably a good portion of the time. He gets worked up until he can no longer breathe, or starts to seize. Topomax is controlling the seizures quite well, but the pain issue is terrible. He is on morphine and valium to control the pain. We have no clue what even hurts. He howls, literally.

My other babies never had more than ibuprofen and teething tablets. My oldest had an ear infection once around 1yr of age after an airplane ride in the winter. My 3rd was on reflux meds for a couple of months (long story) but it was transient.

I'm not used to the drugs. Kael is on 8 or 9 of them himself (reglan, zantac, phenobarb, topomax, valium, morphine, clonidine, caffeine, iron, vitamins, occasional simethicone or tylenol-for fever, he's had a cold this week)
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#10 of 10 Old 09-10-2004, 07:20 PM
 
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My twin sister has moderate cerebral palsy, with seizures and spasms.

The thing they told my parents, back in the '70's was, the earlier you get someone with CP into treatment, the better. Unfortunately, she wasn't diagnosed properly until she was 2, but my parents got her right into therapy.

She started with an Occupational Therapist when we were two, and did therapy for at least five or six years, like two or three days a week. They used the Bobath Method, which is all about stretching, and strengthning the muscles and keeping them flexible. They also did speech therapy, and other developmental therapy to help her become as able as she could be.

She had surgery to loosen her hamstrings, and has been able to walk with the help of crutches since she was four.

She has had to take medication for her seizures since she was six, but has been able to stay off of phenobarbital and work with either tegratol or depakote.

She's had a great, fulfilling life, complete with all the usual things. She's married, has kids, has a college degree, all those things.

My parents went through EasterSeals, which has a sliding scale of payment and is incredible in support and help with things like this.

The people who work for this organization are simply amazing. I can't say enough good about them. We all still have contact with her original physical therapist, 28 years later, she's like family. Their whole goal is helping the child as much as they can.

There are support groups as well, on ways to deal with having to cope with a disability, and I know they helped my parents a lot.

I know, it is be so hard when they're so tiny, and you feel so lost about what to do. But there is help out there.

Here's the website

www.easterseals.com

I believe the local places would also be in a phone book, under Physical Therapy or Therapy, or something like that.

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