Linda,

I recently read about a concern that the decompensations (relapses) that brain injured have from time to time may be undoing the prior healing. If Danielle is messed up for 3 to 5 days after enduring these events she selectively attends, she may be undoing things.

I wish I could locate the article. They talked about working to prevent seizures and decompensations as important to enable improvements to be long term. This is the reason many brain injury patients are but on anti-seizure meds in the ER before seizures are evident.

I have been on Neurontin (gabapentin) for years. It is a very easily tolerated anti-seizure med. Side effects are virtually nil. It helps my brain settle down inside. My new doctor was glad to see that I had been switched from clorazepam (Klonopin) to Neurontin. She says the benzos can cause cognitive, especially memory problems with long term use. She said that Neurontin is much easier on the injured brain compared to benzos (Clorazepate is a long acting benzodiazepine drug).

Personally, I know that when I made major changes to avoid the many decomps that I was experiencing, my condition somewhat stabilized. I would attend a noisy function, usually church, and decomp for the afternoon. I would sleep it off but still need a few days to a week to recover.

Church was a big cause of decomps. It was the noise and echoes in the auditorium that overwhelmed me, even with ear plugs. There were very few who could hear the echos I heard. Most people have echos filtered out by a properly working brain. I was only there to hear the sermon. I had stopped being in the auditorium for music years ago. I finally stopped attending service at church. Now I just go to Sunday school and work in the nursery.

You could almost say that I have become a bit paranoid of causing a decomp because it feels so much better to be free of them.

Does Danielle take any vitamins yet? There are basic things that you should be doing without a nutritionist to fine tune things.

200-400 mgs of B-6
200-400 mcg of B-12
500-100mcg of folate
50mcg of Vit K
200-400IU if Vit E
100mg of C
1000 to 2000 mg or more of D3
2500 IU of A
a good mix of the trace elements, Nickel, manganese, molybdenum,zinc, selenium, iodine, boron, chromium, chloride, biotin, lutein, lycopene
200 mgs or more of Niacin, extended release will help with the flush
good fish oil, EPA & DHA

Some say CoQ 10 too.

And, again, avoid the excito-toxins, MSG, aspartame, caffeine. The term excito-toxin means they excite the cells to the point of damage or death. A scary concept when I finally understood it.

I seriously doubt any neurologist would be concerned about her taking a good vitamin regimen like I listed. I take more than I listed but I'm 180 pounds.

Her hormones should be looked at. DHEA, and the girl hormones.
I think you said her Thyroid is good.

Has her doctor mentioned anything about the symptoms being more extreme during the teen maturing years? Common understanding is that many symptoms will lessen as the patient gets past these maturing years. My doc told me that in 1971 and I still see it in the current literature.

Give her a hug for me and tell her there is a grandpa type in Idaho thinking about her.