I just realized I hadn't mentioned the Florida thing. I admittedly am consumed with spending hours upon hours chasing treatments and the best places to get them. One such treatments is called Scrambler/Calmare therapy. It is
"a computerized medical device that applies a low amperage electric signal which transmits synthetic non-pain information through disposable surface electrodes on the skin (similar to an EKG) to surface nerve receptors of the c-fibers."
You can read more about it here. It doesn't work for everyone, but kids seem to have a better chance of it working. The doctor in Bonita Springs F,lorida is considered one of (if not THE) best. Supposedly the success rate is dependent on the operator, so we are not going to take our chances going anywhere else. It's expensive, but if it works it will be soooo worth it. Most people have to go back for boosters anywhere from 2 to 6 months later. The idea is that the time needed between boosters will get longer and longer. We fly out late on the 17th (5 days from now) and will be there approximately 2 weeks if all goes well. We should know within 4-5 days if its going to work. If it is going to work, the hope is that it will work in 10-12 treatments (one treatment per day). However I have heard of people taking as long as 7 weeks. I'm trying not to think about that and will cross that bridge when/if we come to it.
In the meantime we have joined a gym with a warm therapy pool and take G there for 1-2 hours everyday. At home she does epsom salt foot soaks and I massage her feet every night with epsom salt lotion. She uses a Tens Unit several times a day. She also uses an app called Recognise. It has pictures of left and right feet and she has to distinguish between R & L as quickly as she can. There are studies showing that the brain starts to disassociate from an injured limb which somehow effects the neural pathways. The app is supposed to help the brain continue to keep the neural pathways healthy on her left side. There is a short video explaining it and mirror therapy here.
She currently takes a Calcitonin nasal spray (to help with osteopenia that is happening in her bones) a high dose of Vitamin C, Vitamin D, Magnesium, Ibuprofen, and probiotics. She is on an anti-inflammatory diet. No dairy, gluten or sugar. She drinks kombucha and I have started making water kefir (another fermented drink high in probiotics).
We are getting her on waitlists for several pediatric inpatient pain programs here in CA and one as far as New Jersey.
Other treatments I am still researching are Neridronate Acid Infusion Therapy In Italy, Low-Dose Naltrexone, Ketamine infusions, Prolotherapy, Dynatron Rx STS machine, PRP (Platelet Rich Plasma), Transcranial Magnetic Stimulation (rTMS), Hyper Baric Oxygen Therapy, Infrared Therapy and PEMF therapy.
I don't feel adept at navigating these waters at all. I question every decision I make and I lament past decisions I wish I made differently. Overwhelm does not even begin to touch on the heaviness of this. I have a constant inner battle between sailing this ship and begging Jesus to take the helm. I have to keep reminding myself that He has already seen these days and what is to come, and that FEAR is not from Him.
