Neuro Center

Deep Breath. Ok. Go!

Logen saw Dr Brunstrom yesterday. Dr B and her staff spent a good 4 hours with us. They are remarkable.

1) The "tumor" on Logen's leg was not all removed. She suggests a plastic surgeon remove he rest of the tumor and fix the scar on his leg, he can make it nearly invisable. We knew shortly after the bandage removed that it still did not look right. Once again, there goes my faith in our local Children's hosp. A few pages in Logen's medical chart were removed before they were sent to us. Also fishy.

2) We are going to order a Mckie hand splint with a supinator strap for Logen's left hand. This will help keep his thumb out. Insurance won't pay for it and neither will medicaid- so it's an out of pocket expense. He won't wear it all the time. We will put it on him when he's working (coloring, puzzles, shape sorting, etc)

3) Repeat Swallow Study, done in specific ways. Once it gets closer to time for the study- I will post on this.

4) Growth: he's falling off the charts. No growth has been made since she began seeing him in 2007. We will check his thyroid functions. However, this can also be resulting from a mitochondrial disorder.

5) And for the big stuff.

* She's referring us to John M Shoffner in Atlanta, GA for a fresh muscle biopsy. While there he will undergo more extensive testing as well- a spinal tap, amino acids levels, metabolic functions, genetic testing, etc. The lost of testing they do is long. Check out their website. Wow.

* Dr S will not see us until I have every medical record on Logen from birth to now. Our hosp is not cooperating with me so far. Our ped's office has also called and asked for the EEG on disk. We keep getting told it's to large to copy. They won't release the report either. And, apparently nobody knows anything about the missing pages in his medical history.

* We are looking at possible Mitchondral disorders/diseases now.
* There are many precautions they gave us.
* avoid prolonged fasting. She said not to let Logen go any longer than 8-10 hours w/o food. This means waking him up if he's sleeping.
* avoid extreme exhaustion
* avoid overheating
* all of the above can lead to brain damage if it is mitochondrial

* We are limited in medications for seizure control b/c of the way the body processes the meds. Mito disorder + certain meds = bad!

* Once we do the testing, results for the biopsy take about 3 months to come back. We can have the spinal tap results in 2-3 weeks.

* If we do not get Logen in to see Dr S in the next 3 months, we need to do the spinal tap before hand. We need to eval his CSF neurotransmitters and look for a cerebral folate deficiency. If he has a deficiency a medication can be given to fix! Dr B has seen major improvements with the med! IF we do the testing here, it will take about a month to get back.


ASKING FOR HELP!

* Just to do the testing with Dr S is $20,000.00+. Medicaid will not cover this b/c it's out of state. I am checking into our insurance. The minimum we would pay is 30% of all costs. We also need to get there (16-18 hours away).

* I need ideas on fund raisers. Anything you can come up with be so helpful. Any way you can think of to help us raise money for the testing, we appreciate!

* We also need prayer warriors!!!!! And lots of them! :)