My Daughter and PCS
 

Hello Folks:

My daughter, Grace, was thrown from a playground swing when the chain let go as she reached the highest point. She was slammed to the ground, landing on her shoulder and head. She broke 3 ribs, and sustained a C7 fracture which, thankfully, missed the spinal column. She was diagnosed with a concussion, and went to the emergency room with the usual concussive symptoms; nausea, vertigo, etc. This was on April 30th.

After starting High School, these symptoms, which had pretty much gone away, have returned full force, along with other classic indicators of 'PCS' - fatigue, temper outbursts, mood swings, low frustration threshold, inability to control impulses, dizziness, impaired balance, etc. I'm not sure if the condition has worsened due to the stress of starting in a new school environment, etc, but she is becoming increasingly unable to keep up and do the work assigned to her.

We have an appointment this morning with a pediatric neurologist, and I feel that a proper and accurate diagnosis may be the key to resolving her problems.

Does anybody have any suggestions about what to tell the doctor that may help him figure all of this out?

Thank You.

-Grace's Dad

Grace's Dad

I sorry to hear your Grace is struggling so. Starting a new school can be tough without PCS.

I don't think an accurate diagnosis is the key. The more important issue is understanding the symptoms. The symptoms sound like classic PCS. If you will download Dr Johnson's TBI Survival Guide at http://www.drakecenter.com/file.axd?...vivalGuide.pdf, it will explain the symptoms best. Print it out and have a few copies for the whole family to read. You will have many 'ah ha' moments.

Each symptom needs to be looked at separately. Some are a able to be combined once you understand them. Grace is likely grossly overstimulated by school. This is a big stressor. Then she also has the normal stress of starting high school.

She likely has trouble with too much sound and too much visual stimulation. Walking down the hall with different voices everywhere is likely the biggest over-stimulation.

She will probably benefit from wearing foam ear plugs. This will cut down on the back ground sounds. The yellow foam ones work best for me. She can get custom ear plugs made at a hearing aid shop. They call them Musician's Ear Plugs. They look nicer. She can try the foam plugs to see if they help then get the Musician's Ear Plugs (about $175 a pair).

If the school allows her to, she can try a IPod with ear buds playing soothing sounds.

Sun glasses may also help.

The pediatric neurologist can also prescribe an IEP. Individual Education Plan. These can help her with school struggles.

Another struggle she may be having is wildly cycling hormones. A concussion can cause hormone struggles. And Grace is right in the middle of those years. You both can try to track her symptoms on a chart of her cycle. Finding a good doctor to help with hormone issues will be difficult.

It will also help to keep a journal of her symptoms. You both should keep one. Your observations will be different than hers. Include environmental and other conditions, i.e. noise, bright lights, exercise, reading, and any intense tasks. The journal entries will be valuable to a good concussion doctor.

It is likely that she will need to learn to live with these condition while she lets her brain heal. It will heal best when she minimizes stress loads and gets good rest and nutrition.

Be willing to slow everything down. Acknowledge her struggles. Don't try to fix her. Men tend to want to fix things. No, "All you need to do is..." comments. Be careful with the "You are doing so much better today" comments. You only see the tip of the iceberg. She lives with the whole iceberg. If you see a little struggle, she sees it at ten times worse.

Let us know how you all are doing. This is stressful on the whole family.

My best to you.

[QUOTE=Grace's Dad;712177]Hello Folks:

Dear Grace's Dad,

Ah to see your child struggle and be in pain is one of the hardest things a parent must endure. My heart goes out to you...

I am teacher who also has PCS from a fall back in March 2010. I am not teaching and will not return this year. I have taught high school and have 3 children in college, so I am very much aware of the class load, the social interactions, extra-curricular and the energy needed to live fully at your daughter's age.

Your darlin' has been injured and all the above is now being lived on a different playing field. One that feels and is like slow motion compared to the rest of her friends at school. Needless to say, school work can and will be a challenge with the "fatigue, temper outbursts, mood swings, low frustration threshold, inability to control impulses, dizziness, impaired balance, etc."
The concentration needed to be in school and interact with others can bring on the worst of headaches and fatigue. I know.

I would recommend that your daughter have a neuropsyche test to determine her impairments. This would need to be ordered through a neurologist. I had one and it clarified my needs and subsequent treatment.
I was referred to a speech and language pathologist who has me doing a computer program at home that specifically addresses my impairments.
And I will be seeing a cognitive behavioral therapist at the end of the month.
I state all this because your daughter needs to be evaluated.

Regarding school, it is important that you speak with her guidance counselor or special education director to let them be aware of your daughter's condition. Accommodations can be made for her regarding receiving breaks, more time for testing, etc. She might be entitled to be put on a 504plan or IEP and if I remember correctly medical evidence is needed.

I do hope this helps as you advocate for your daughter. This forum has been a great resource for me and many others as they journey through this world with an injured brain. Please know that we all hold your daughter, you and your family in our hearts. For we have been held here, when we first arrived.

Peace
Grady Lady

Poor Grace
 

Grace's Dad,

What a terrible thing it must be for a child to deal with post-concussion symptoms. If she is frustrated and angry, I don't blame her one bit. That reaction is completely understandable.

I hope that you get a pediatric neurologist who can help. Don't be afraid to shop around. Neurologists have different expertise and experiences. Some, sadly, will not understand.

On the positive side: I did have a playground accident when I was a child. I hit my head after falling from the top of a slide. I was concussed and my vision was really messed up, to the point that I couldn't see. I was off school for quite a while, but the positive thing is that I did make a complete recovery from that episode and I was not aware of any long- term effects. (My present symptoms are due to a subsequent trauma that I had as an adult.) So, children can make a complete recovery, and perhaps children have more plastic brains which helps their healing take place.

Another positive, is that Grace does seem to have recovered to the point of being symptom free until she went back to school. Would it be possible to try to recreate the conditions that allowed her to be symptom free? Perhaps she went back to school too soon and she needs to recovery completely before giving her brain too much stress.

My guess is that you might be guided to some extend by how Grace feels about it, and if she is showing that she is angry and frustrated, she clearly isn't happy about the present situation. You do need a long time to heal, even children, and that is far more important than any school that she might miss. When I had the concussion as a child, I missed a lot of school in one year. I think that I was off school for about 16 weeks. I think that the school year is only about twice that, so basically I was off for half the year. Did it make any difference to me? Well, I still ended up doing the best academically of anyone in the class, so I would say that I didn't miss anything important, but I did need time for the concussion to heal, that was more important.

I would say that making sure that Grace is in a relaxed, stress-free environment, stays off school if necessary, eats well, gets a good night's sleep if she can, these are some of the most important things that will aid her recovery, which hopefully will happen given enough time.

Probably the neurologist isn't going to sort everything out for you. Let's hope that the neurologist does at least help.

Good luck and I let's all hope that Grace gets better soon.

CS

Grace's Dad

I would definately have things set up where she has a 504 plan or iep.

It takes a little more to get a IEP in most states. So it might be that
they have to do psychoeducational testing, or they may need to
see that she is struggling and her grades are suffering.

But a 504 plan takes mainly a medical doctor to say she has this problem.
PCS, and needs to be considered for a 504 plan.

I would definately have the neuro see if lighting effects her. And remember
different buildings have different lighting. She may need to wear sunglasses
in the halls. Between classes. Or she might need to change classes at
a different time than others. So the noise and other problems aren't a problem.

These are things that can go in a 504 plan.

Now for the schooling side, also have it put in she gets extra time for homework. And test. This is so if she is exhausted she can wait to do
the work.

It might also be that a reduced day for a while will help her. And that
she needs a tutor.

These are all things that can be in a 504 plan. If you need more help
let me know.

I'm a parent advocate in Indiana.

Donna:grouphug: