Anyone have a young child with a brain trauma/injury?

[SoonerSarah]

I'm looking for support, websites or info on children who have had brain trauma or injury, as well as for those that have had strokes. Has anyone been in a similar situation?

 

[starienite]

My son has an AVM in his brain. It ruptured resulting in a pretty bad bleed, although he has mostly recovered.
Is there a brain injury association in your state?
http://www.biausa.org/
With Dev he was medically comatose for 12 days, has had brain surgery, inpatient neuro rehab for two weeks and a few months on outpatient rehab.

 

[disneymommy78]

Hello!

My DD is 13 and in treatment for leukemia. When she was about three months into treatment, she was hit with an invasive systemic fungal infection. It started out in her sinuses and lungs, but eventually invaded her brain. When she had neurological involvement, it caused her to have six seizures total (four on one day over an hour period!), and was sedated/medically induced coma and on a vent for about a month, had surgery, then was inpatient for another two months after with daily OT, PT, and speech therapy.

She recovered from that and then last month she had a stroke like episode caused by one of her chemo drugs. She actually has an MRI tomorrow to check up on that damage and to see if there has been any improvement.

 

[CPT Tripss]

I'm looking for support, websites or info on children who have had brain trauma or injury, as well as for those that have had strokes. Has anyone been in a similar situation?

Sooner=OK resident? Here's a start. http://www.ok.gov/health/documents/Section12.pdf

 

[SoonerSarah]

We are Sooner fans living in Texas actually.

My daughter fell off of some playground equipment on May 29th. She was fine for the most part in appearances and actions (breathing a tad off, which could have been explained by the fall, and on her skull a few pinpricks of blood, some bumps and bruises). We took her to the ER anyway because I remember Natasha Richardson and how she was fine. Anyway, she had a skull fracture and brain bleed and was flown to another town for surgery. Things got worse and the surgery became emergent. Anyway, she had a massive brain bleed,several days later she had to have an external ventricle drain put in, and then on Friday she had to have her bone flap removed to help with swelling. She also had a venous infarct (stroke). She was extubated, then intubated again, and extubated again yesterday, she seems to be doing ok. We are still unsure of brain damage, if she will be able to eat again, etc. We are looking to be in the hospital for another month, and then in-patient rehab for likely several months.

 

[cm8]

We are Sooner fans living in Texas actually.

My daughter fell off of some playground equipment on May 29th. She was fine for the most part in appearances and actions (breathing a tad off, which could have been explained by the fall, and on her skull a few pinpricks of blood, some bumps and bruises). We took her to the ER anyway because I remember Natasha Richardson and how she was fine. Anyway, she had a skull fracture and brain bleed and was flown to another town for surgery. Things got worse and the surgery became emergent. Anyway, she had a massive brain bleed,several days later she had to have an external ventricle drain put in, and then on Friday she had to have her bone flap removed to help with swelling. She also had a venous infarct (stroke). She was extubated, then intubated again, and extubated again yesterday, she seems to be doing ok. We are still unsure of brain damage, if she will be able to eat again, etc. We are looking to be in the hospital for another month, and then in-patient rehab for likely several months.

, I will keep you and your family in my thoughts and prayers

 

[SueM in MN]

How scary for your family and how lucky you thought of getting her checked put even though she did not seem badly hurt at first.

Hugs and best wishes to your whole family.

I second the recommendation for the Brain Injury Association.
I work in a hospital that does brain injury rehab. We don't have pediatrics - only age 16 thru adult.

We get patients who have just left ICU, many still in comas, many on vents. Recovery can be a very long process and 'normal' for your family may shift multiple times. But, we see amazing things sometimes - people who were not expected to come out of a coma who end up walking and talking. They may not get back to exactly where they started out and the trip to recovery may ne long, but kids are even more resilient than adults.

 

[rivey]

I'm so sorry to hear about your daughter's accident. What a frightening nightmare

Please keep your hopes up. One of my twins has mild CP, the MRI showed an area of "old damage", almost certainly from a stroke before she was born (small one). I have an older sister who was hit by a car and her head went into the windshield and she suffered a bad closed head injury. The good news is both are doing really well. My older sister did a year of therapy and rehab, but ultimately as far as her brain injury is able to have all her skills (now, she always kinda had behavioral issues and was impulsive, and those things haven't really changed...but probably weren't helped by the brain injury). My daughter continue to do PT and OT and probably will for many years to come, but she's made great great strides and has made improvements. Brain injuries are as serious an injury as they come, but, the brain is amazing and come overcome and heal and rewire.

I will pray for your family, for healing and peace in such a difficult time

 

[Sarasein]

Oh, my. Big hugs for ya'll. That sounds so scary. My youngest has mild CP, but she was born with it. We know no difference from her.

 

[starienite]

Also take a look at www.helpingkidsbrains.com it is a good resource for when your daughter gets back into school. It really spells out the laws that on your side and how to navigate the red tape if your child needs an IEP or 504.

 

[wishin' on a star]

I don't have advice, but wanted to offer my prayers for your little one and your family. I'm so glad you had the sense of mind to take her to the ER.

My daughter was born with multiple congenital anomalies, and has a shunt for hydrocephalus. She's an amazing miracle. Kids are SO resilient. I hope you see lots of improvement in the days to come. Please keep us posted.

 

[mumto2]

I understand what a tough time you all must be having right now and wish you and your family well.

My daughter is a pediatric stroke survivor. We have found tremendous support from CHASA.org. This is the website for the children's hemiplegia and stroke association. They have a listserv that I also highly recommend. It is completely a volunteer organization, and anytime I have had a question, one of the other parents has always had an answer.

 

[dskib]

I can't offer you any information, but I wanted to send you huge hugs and lots of prayers for your beautiful girl. And thank GOODNESS that you took her to the ER anyway even though she looked ok. So scary.

Wishing her a speedy recovery!

Deb

 

[Perrinsmommy]

My 8 yr old was born at 25 weeks with a grade IV brain bleed. When that subsided he was left with Periventricular leukomalacia and hydrocephalus controlled by a VP shunt. When he had a shunt malfunction 2 years ago, we had the whole system replaced and the neurosurgeon made a mistake during surgery and pushed the catheter too far and caused damage to his corpus callosum.

 

[laughinplace199]

We are Sooner fans living in Texas actually.

My daughter fell off of some playground equipment on May 29th. She was fine for the most part in appearances and actions (breathing a tad off, which could have been explained by the fall, and on her skull a few pinpricks of blood, some bumps and bruises). We took her to the ER anyway because I remember Natasha Richardson and how she was fine. Anyway, she had a skull fracture and brain bleed and was flown to another town for surgery. Things got worse and the surgery became emergent. Anyway, she had a massive brain bleed,several days later she had to have an external ventricle drain put in, and then on Friday she had to have her bone flap removed to help with swelling. She also had a venous infarct (stroke). She was extubated, then intubated again, and extubated again yesterday, she seems to be doing ok. We are still unsure of brain damage, if she will be able to eat again, etc. We are looking to be in the hospital for another month, and then in-patient rehab for likely several months.

How scary, but thank goodness you brought her to the ER!

I don't have any advice, but just wanted to send and to your sweet baby.

 

[1girln3boys]

Sorry to hear about your little one. check out the Pediatric Stroke Network. When we thought our son had an inutero stroke, they were great support and resource. We thought he had a stroke for 4 yrs turns out it wasn't a stroke but NF1.

 

[alizesmom]

PM me if you want. My 5yr old son (adopted) had a massive TBI due to shaken baby syndrome. Karen

 

[SoonerSarah]

Thank you all for the support. She got her bone flap put back in just a little over a week ago and has done very, very well since then. We are most likely going to be transferred to Our Childrens House at Baylor Medical this week. She has full function on her left side and we have started to see a tiny bit of movement on her right side. Shenplays and interacts normally with family and does OK with hospital staff. She had surger this past Friday to have a Mic-Key G-tube placed in her abdomen and she has been eating some pureed baby food by mouth. That has been a bit of a struggle, and I think it will be for a while.

 

[MinnieVanMom]

We are Sooner fans living in Texas actually.

My daughter fell off of some playground equipment on May 29th. She was fine for the most part in appearances and actions (breathing a tad off, which could have been explained by the fall, and on her skull a few pinpricks of blood, some bumps and bruises). We took her to the ER anyway because I remember Natasha Richardson and how she was fine. Anyway, she had a skull fracture and brain bleed and was flown to another town for surgery. Things got worse and the surgery became emergent. Anyway, she had a massive brain bleed,several days later she had to have an external ventricle drain put in, and then on Friday she had to have her bone flap removed to help with swelling. She also had a venous infarct (stroke). She was extubated, then intubated again, and extubated again yesterday, she seems to be doing ok. We are still unsure of brain damage, if she will be able to eat again, etc. We are looking to be in the hospital for another month, and then in-patient rehab for likely several months.

I will keep you and your family in our prayers. TBI's is so hard on everyone and affects the entire family and friends.

 

[mdvlprof]

We are Sooner fans living in Texas actually.

My daughter fell off of some playground equipment on May 29th. She was fine for the most part in appearances and actions (breathing a tad off, which could have been explained by the fall, and on her skull a few pinpricks of blood, some bumps and bruises). We took her to the ER anyway because I remember Natasha Richardson and how she was fine. Anyway, she had a skull fracture and brain bleed and was flown to another town for surgery. Things got worse and the surgery became emergent. Anyway, she had a massive brain bleed,several days later she had to have an external ventricle drain put in, and then on Friday she had to have her bone flap removed to help with swelling. She also had a venous infarct (stroke). She was extubated, then intubated again, and extubated again yesterday, she seems to be doing ok. We are still unsure of brain damage, if she will be able to eat again, etc. We are looking to be in the hospital for another month, and then in-patient rehab for likely several months.

Oooh. So hard when your kid, regardless of age, is hurt.
DS didn't have his stroke until he was 17 [long story], so I don't have much advice.