PCS Pediatric Caregiver Advice

[kjmommy]

My daughter is experiencing many life altering symptoms of PCS. She is eight. Our whole family has been dramatically effected.
Does anyone have advice on how best to care for my daughter, her siblings, my marriage, and/or myself?
I am feeling overwhelmed and unsure if I am doing what she needs.
I wish there was a handbook? Is there?
Mostly, I m heartbroken that this is so hard for my daughter and sad for our family.
Thanks!

[Bobbi]

I feel for you, too.

It's heartbreaking anytime anyone close to us has a health condition and is relying on us for care and for support.

I'm not really sure what PCS is, though I did Google it. Might I suggest, and this is solely from the top of my head: Contact your local chapter of MDA (March of Dimes), Salvation Army, as well as her pediatric (sp?) doctor/s. They will likely be able to offer you ideas on how to get support.

Also, a local chapter of PCS national organizations or associations should also be able to help in terms of where to find support, and, possibly, too, a respite grant or scholarship.

Please update, and soon.

[pretdou]

Hi kjmommy,

I only have a minute as I have to get my daughter to bed but my heart really, really goes out to you. It is absolutely gut wrentching to see your child injured in such a manner. My daughter is now 13 and she very sadly has had at least three concussions. The third was really bad and resulted in PCS. She was 10 at the time. One month ago she ran a 10k and three days later the sx of PCS began. I really feel your pain, it is incredibly, incredibly hard.

Please feel free to PM me. There are things about caring for a child with PCS that I really wish I had had someone who had been there to share with me. I'm still learning for sure. Every case is different obviously, but most do go on to do very well but there are serious decisions to be made about sports and other aspects of lifestyle for those that have had multiple concussions/PCS.

Please find your way to the Traumatic Brain Injury/Post Concussion Syndrome form here (it is farther down). There are any number of posts from those of us with children going through this, as well as adolescents posting for themselves. The folks posting there provide a lot of support and a lot of valuable information. They will ask you about the specifics of the symptoms with your daughter and provide you lots of ideas and information.

I'm so sorry you are going through this.