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Kara - posted on 12/17/2008 ( 21 moms have responded )

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If you have a child with a brain injury join the group and lets do some talking

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DALIA - posted on 01/16/2012

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Hi, My baby has according to doctors Severe Brain Damage , he was born with a Mitochondria disorder and there was no way anyone could have known, He got bronchitis and didnt eat much which caused his disorder to worsen and signals to his heart were not strong enough which then didnt send enough blood to the brain and there was not enough oxygen to the brain either because baby stopped breathing.it is said he had a stroke. He has now been in the hospital for three weeks. Drs want to try to disconnect from the breathing machine and I need to decide if they will let him go if he cant breath on his own or if they will put breathing tube back on. I love my baby so very much and I dont know what to do because I am with him everyday at the hospital and I see improvements. Hes moving his arms and legs, his head, hes blinking. his other organs are functioning well. Drs advise we just let him go rather than him have a life with dificulties and possible pain. I believe in Prayer and Miracles. My baby is going to be 3 months old tomorrow.

Kara - posted on 03/26/2009

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Renee, it was good talking to you I have to run!  Come back soon and we will talk some more :)

[deleted account]

Destiny's affected side is her left also. Last summer she got a saebo her help her hand function. She walks okay with supervision (although she has had six falls in the last two weeks-I think because they just put an inch lift on her shoe). They do get easily tired. Everything takes so much out of them. Impulsiveness...we've worked a lot on that. She's getting better also.

Kara - posted on 03/26/2009

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Some of the information I have read has said that even mild TBI can effect you.  One of the kids that was in the hospital with us got hit in the head with a basketball.  We thought he would be fine but in the end his symptoms have been worse.  He has seizures and cannot be around a lot of people. He has to have his IPOD in at all times or he cannot focus.   It is cute though he and one of the other girls with TBI are dating now.  My son acutaully fell out of a little red wagon when he was in Kindergarten and got a basal skulll fracture with a head injury.  I could tell a difference in his personality even at that young age and his injury wasn't half as bad as Karlee's

Kara - posted on 03/26/2009

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We were dealing with the left side as far as OT and PT but she is doing better.  She just got some inserts for her shoes and her gait seems to be improving.  She has issues when she is tired or stressed.  She broke most of the bones in her left side so that was an issue to get over.  I think the actual brain injury is what effects her gait and they say  that will just have to improve with time.  I had her at the hospital because when she was tired she was getting a '"frankenstien" walk.  But it really is much better.  We were seeing lots of improvements with her memory and impulsiveness but seem to be having a relapse

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I agree with that. Our support group mainly consists of 3 families. The other two with injuries are ages 35 and 40. That's great that you meet with the other families you met in the hospital. Destiny was at The Children's Hospital in Philly which is 4 hours from where we live. So it was hard to keep in touch with the ones we met. I also received a TBI in the accident (nothing as bad as Destiny's though), and I feel out of place socially.

Kara - posted on 03/26/2009

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We do not have a very good TBI support group it is all older people and I think it is so different for teenagers or even pediatics.  We have really bonded with the kids from the hospital they were all in there and rehab together.  So we try to meet once a month to get the kids together.  TBI has such an effect on social skills, its hard for teenages to try to go back to the way they were before.  I swear they need social therapy. 

[deleted account]

At our brain injury support group there is a man who sustained a TBI in college. It has been 15 years since his injury and he has received his associates degree (it took him 10 years) since his injury and is working on his bachelors. It's hard. It's very frustrating when you can't come up with word you want to say, or remember simple things.

Kara - posted on 03/26/2009

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Yes, the IEP process is complicated isn't it.  Thats what I do for a living and when my own child was faced with that I didn't know what to do.  The memory is an issue.  We went through months of not being able to remember what we had for breakfast five minutes after.  She always remembered us but couldn't remember why or where she was.  That is what frustrates me the most.  We go round and round with little things.  My daughter just turned 18 and she is always forgetting where things are or what has happened with things and then she wants to blame everyone else when something is missing.  We just had Karlee's IEP meeting and decided to keep most of her goals so it will carry over to college.  College is a really scary thing for us but I have to let her go. 

[deleted account]

She was in kindergarden the first two years. Now she's in 1st grade. She will always be behind the class, but she is meeting her own individualized goals. It's great to see her able to remember things and memorize...it's a lot of work. It took me awhile to understand the whole IEP process, but this year I am very happy. She has a wonderful aide to help her.

[deleted account]

She was in kindergarden the first two years. Now she's in 1st grade. She will always be behind the class, but she is meeting her own individualized goals. It's great to see her able to remember things and memorize...it's a lot of work. It took me awhile to understand the whole IEP process, but this year I am very happy. She has a wonderful aide to help her.

[deleted account]

It is extremely hard. Destiny and I were critically hurt in the accident. My husband had to deal with both of us. Destiny was in the hospital for 8 months. She is still receiving PT, OT, and speech at an outpatient facility. Every little accomplishment is a big deal.

Kara - posted on 03/26/2009

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So she was 5 when this happened,  you should be able to help us since many of us are new to TBI.  My daughter was in a one car auto accident when last year.  She was in a coma for over a week and then had 3 months of in and out patient therapy.  She is doing better but it really is devestating as I am sure you know.  We were in the local Children's Hospital with several other kids with TBI so we got to see the gammet of severity.  I had several Dr/s tell us that Karlee would probably be brain dead but she came out of the coma and made good progress.  Thats not to say that things have not been hard because dealing with TBI is always a nightmare.

Kara - posted on 03/26/2009

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Renee welcome to our group!  I don't really know exactly what we are doing here but looked for a brain injury group and couldn't find one so decided to start this.  How did your child suffer TBI? How long has it been? 

Kara - posted on 03/02/2009

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That is a very interesting question Dora, but unfortunately I do not know the answer.  Brain Injury is usually caused by a blunt force trauma to the brain.   There are open brain injuries where the skull has been penetrated by an object like a bullet etc... And there are closed brain injuries where the brain is slammed against the skull like what happened with my daughter and her car accident.  Or like what happens in Baby Shake syndrome or if someone falls on the ice.  Brain Injury can also be caused by near drowning or lack of oxygen to the brain as in a stroke etc.  This also happened to my child because she was trapped in the car with collapsed lungs and without oxygen.  I wonder if the location of your son’s tumor and his surgery could have caused some developmental delays.  I am not a brain expert for sure.  The brain is such a complicated thing.  Has he had developmental delay’s? 



Dora - posted on 03/01/2009

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Could a brain tumor followed byan 8 hour brain surgery cause brain injury; and as a result, cause developmental and cognative delays, learning disabilities etc.

My son is now 21, the brain tumor which was located on his brain stem was removed at 3 months of age.

Thank you.

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