Logen is DESPERATE for your prayers. Pray blog family, PLEASE pray. Just grab this code and add it to your blog (html gadget) so you can help us spread the word! Thanks! Pray for Logen

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Tuesday, March 31, 2009

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.


* 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! :)

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  1. oh girl. I've been lacking to read lately and blogging and just read this. Praying for Logen. Huge prayers. Luke went 18mths undiagnosed. The Mayo clinic diagnosed him with CMS. This required no add'l muscle biopsy as this disease is blood tested and proven with an EMG. His first biopsy was a waste of time. (we realized this post final diagnosis)
    This said, the MAYO clinic is the bomb. I would desperately try to get Logen there. It's very good with neuromuscular diseases.
    Email me direct if you need me for further info:
    hugs sweetie..praying.

  2. Oh Jess - My what a crazy ordeal! Definite prayers for all of you. Stay strong girl.

  3. Wow Jess! Alot more info, yet still many unanswered questions and tests to be done. Stay strong and know that I'm here along the way!

  4. Oh Jess. I am thinking of you and you are in my prayers. I will think through some fund raising ideas. Most of the ones I have are pretty generic (i.e. spaghetti dinners). I know that you are close to Walmart headquarters, do they do any community sponsorship activities?

    Please, please, please keep us posted. I think of you often.

  5. Hi, I found your blog while I was doing some personal research on CP. Anyhow,you should try to get in contact with Angel Flights, they fly families for free to medical destinations for diagnosis and/or treatment. Also, refer your son to Make a Wish Foundation, or have a nurse that you know who is involved in his care to refer them. They do some pretty special things for children with medical issues (does not have to be a terminal medical issue). They pretty much grant all wishes. Get in touch with social services either through the dr he sees now or any of the drs he will be seeing, they can provide info for discounted or free lodging. Most big children's hospitals have a special place for parents to stay while there child is being treated (ei. Ronald McDonald houses). I wish you the very best!

  6. THANKS! I'm working on some things :)

  7. Hi. Jessica, I wish I knew more about fundraising.... Can your place of worship help, in any way? Does your state's Division of Developmental Disabilities have a Catastrophic Relief Fund? Google those things.

  8. Oh sweetie I will be thinking about you and your family. I will think of some ides. But I agree will your state help in any way? Or Social Security? I will keep thinking!

  9. I will be thinking about u and logen. Keep is posted I kmnow what its like to not have many asnwers we are supposed to have aud tested for motichondiral disorder too.

  10. Oh Jess! I am praying hard for Mr. Logen! Wow, what an overwhelming amount of information with no definites. Glad to see they gave you a list of a few things to avoid doing. If you need anything, just e-mail me. Much love coming your way. I will also check out some ideas for cool fundraisers.

  11. Oh, Jess!! I feel like I have been away som long...always thinking of you & praying for Logen!!

    Hugs to all of you!



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