My son was diagnosed with ADEM April 2015 and is still in recovery. Since my last update my son is now at home and the rehab center feels that he can heal better at home.
I took my son to a functional medical doctor. He ordered some blood test that was not done since the brain injury. The blood tests showed that his testosterone levels were that of a 75year old man and my son is 33 years. We were really struggling with his anger outburst and low testosterone levels contributed to his depression and aggressive behavior according to his doctor. Low testosterone also contributed to his, weight gain, and lack of motivation to learn. To increase his testosterone levels he was given bio identical testosterone gel to be used once daily. He also found that his thyroid levels were extremely low and recommended Idorol – 7 tablets a day. I have managed to wean him off most of the psychiatric drugs. In the process he has lost 30lbs so far. The doctor suggested we place him on a Ketogenic diet as it will also help the brain heal and it is beneficial to his overall health.
He is on the following Prescription Meds:
• ¼ Wellbutrin (bupropion HCL XL) per day. (The doctor recommends I continue to wean him off the antidepressants at 10% reduction of the antidepressant every 2 weeks.)
• 1 garpentin at night. (300mg) In order to minimize the side effects of the Gabapentin he suggested we give him a low dose of 300mg in the evening and (it does cause aggression so we give it to him at night. We also give him Hemp cbd oil for breakfast and lunch to help as an anti seizure medication but we have increased the dosage from 2 droppers to 4 droppers per day. We use the Charlotte’s Web one as there are so many on the market that is mixed with coconut oil and does not have the required amount of CBD. The CBD oil also helps to manage depression his depression. The downside is that Hemp CBD oil is really expensive but I want to mitigate the side effects of the anti seizure medication and anti depressants. The Hemp CBD oil also helps him sleep and calms him down. The doctor agreed that it would be ok to lower the anti-seizure meds (due to their side effects)and since on this protocol we have no seizure activity to date. He also takes the following supplements that help with depression and to heal the brain and rebuild the myelin. High doses Magnesium and vitamin E for example help with depression, seizures, and sleep and to heal the brain. He suggested we increase the vitamin D to 15 000iu per day. So he is on the following supplements for depression to help heal the brain and prevent seizure activity. :
• Vitamin D - 15, 000iu
• Biotin - 10 000iu
• Vitamin B12 - 2500 mpg
• Niacin – 8 000mg a day (helps with depression and to regrow the myelin)
• Magnesium Citrate 400mg - 3 times a day (1200mg per day)
• Vitamin B1 - 500mg - 3 times a day (1500mg)
• Vitamin B2 - 100mg - 3 times a day (300mg per day)
• B Complex ” 100” - 3 times a day
• Vitamin E - 400 IU - 3 times a day (1 200 IU a day)
• Omega 3 -950mg -3 times a day (2850mg per day - EPA - 504mg(1,512 per day) and DHA -378mg (1,134 per day) – Helps with brain healing.
He suggested we do a gut bacteria test to ensure his gut is healthy as there is a brain gut connection and also suggested we do a Spect Scan with the Amen clinics to ascertain exactly where the damaged areas in the brain are so that we can target rehabilitation more precisely and the scan will help in suggesting how many ozone treatments are needed and the amount of hyperbaric oxygen therapy required to accelerate the brain’s healing. We have done 3 ozone treatments already (blood is extracted and oxygen added and to IV and placed back into his body.
The doctor also mentioned that aerobic interval training has a similar effect as ozone therapy and that Vibration Platform workout machines are also beneficial in helping the brain heal.
He also recommended the use of the following supplements to help heal the brain heal:
• Brain Octane Oil
• Alpha Gommunicate PC) 2 capsules daily
• Aniracetam Powder
Our functional medical doctor stated that his purpose is not to replace the treatment and advice of our neurologist but that his purpose is to try and accelerate the brain’s healing capabilities.
My son just had another round of chemo last week. (Rituxan- given every 6 months to prevent an ADEM attack as his attack was so severe.)
I feel we are still a long way off from recovery and we are not sure how far he will heal but he has not reached a plateau yet. Contrary to what one neurologist has told us he continues to heal very slowly. His long-term memory seems to be good but still struggles with short-term memory and he has just started using short sentences. Speech is still not spontaneous and an issue but he seems to understand everything. He still struggles to communicate so we are not totally sure of what his cognitive ability is because of his inability to effectively communicate. Since off the psychiatric drugs and this is my personal experience as everyone is different he seems to be more present, aware and calm and less aggressive. We are a long way off from recovery but he is easier to live with minus all the prescription drugs. He no longer needs Valium to calm him down or sleeping medication. His attention span has improved and enjoys watching movies, plays games and loves to watch science experiments and scientific equation formulations. This is quite a journey for our family but with the help of our Functional Medical doctor we have been given renewed hope.