While we were in the hospital Robert was treated with multiple allopathic drugs. Many were started and stopped in an attempt to find something to reduce his neural storming and hyper-toned (stiff) muscle condition. Some, like Keppra, were given as a prophylactic (just in case). Robert left the hospital on 13 different prescriptions. Some of these were given to treat the side effects of other drugs he was on. Our portion of the cost of these medications, after insurance, was US$800 per month.
It should be noted that these drugs were used ‘off label’ to treat Robert, either because they were not FDA* approved for pediatric use or specifically approved for use in treating TBI (Traumatic Brain Injury). (* – The US Food and Drug Administration. The government bureaucracy tasked with evaluating drug safety and efficacy testing.)
My observation regarding these medications was communicated to one of Robert’s physicians exactly as described in the points below –
1) The drugs used for Robert treated the symptoms of an injured brain but did nothing to heal the brain. I’m thinking in particular of Baclofen, Clonazepam/Diazepam, Clonidine/Propranolol and Bromocriptine that treated the ‘storming’ and hyper-tone. In Robert’s case (and many others with supporting imagery) HBOT was able to stop the damage and begin healing the brain. Because of this we were able to have Robert 100% weaned from the above meds within two months from hospital discharge. Robert has required no surgery related to his toning and never received a Baclofen pump. It is my hope that PM&R docs would consider early HBOT intervention to prevent damage – making the later rehab work easier.
2) The drugs above may actually delay brain healing. Where the mechanism of action is understood for the above drugs, they are all cerebral disruptors. How can a disrupted brain heal?
3) The above drugs have some nasty side effects and can be dangerous to wean. HBOT, when properly dosed, has no side-effects and basically no associated risks. Even if it doesn’t work in all cases, there is no reason not to try HBOT. As we were watching Robert suffer through the weaning of Baclofen, I said, rather darkly, that docs should have to take and be weaned from meds before they are allowed to prescribe them; much like police have to be shot with a Taser before they can carry one. I have logged over 150 HBOT dives with Robert, to date, with no issues. Based on the latest research, I may actually be holding off Alzheimer’s by doing this.
To date, I have received no response to these points.
After starting HBOT, we began weaning Robert’s medications one at a time and very slowly. This is an area where Doctor or Pharmacist recommendation on what to wean first is important. As shown in the paragraph below, one of Robert’s drug combinations is normally contraindicated. It is used ‘off label’ for TBI as the combination is believed to help with neural storming.
Clonidine and Propranolol
The combination may produce a mysterious hypertension that is unrelated to the pharmacology of either agent when administered independently. A sudden withdrawal of clonidine from adjunctive therapy with propranolol may cause fatal rebound hypertension. (Copied from Pharmacy Times, 10 Drug Interactions Every Pharmacist Should Know)
Because of the risks and side effects, we reduced one drug at a time. As the dosage was slowly reduced we watched for signs of stress or agitation and if we encountered them we stopped reducing the dose for a few days until Robert’s behavior normalized. By the time we finished the first round of HBOT Robert was weaned from all of his medications except Keppra.
During the weaning process we asked Robert’s pediatrician to do blood work to monitor kidney and liver function and look for other signs of distress.
We had great difficulty finding a neurologist willing to help us wean Keppra. It seems that weaning Keppra is not often done and several expressed surprise that we wanted to wean. Ultimately, the Keppra was weaned just like the other drugs. We were told to look for a breakthrough seizure and if we encountered one to restart the Keppra and call the neurologist. Thankfully, Robert never seized.
Throughout this process Robert was being supported with Fish Oil, MCT Oil, Essential Oils, CBD Oil and a high quality, largely plant based, diet. All of these are indicated to help with stress and inflammation.