This is probably going to be another rant. While I don’t know the statement to be entirely true, my other possible title was, “Tone never killed anybody.”
We have seen multiple children that were weaned be put back on drugs to, ‘help with the tone.’ Like a slow poison, we watch these kids break down over the following weeks and months. The inflammation, swollen face, extended tongue, bulging eyes . . . .
When we were still in hospital with Robert and the doctors were throwing drugs at him in an (unsuccessful) attempt to control his storming; Gabapentin was ordered. As with everything, we began furiously researching side effects. The first drug fact sheet I encountered said something to the effect of, ‘it is unknown how Gapapentin works but it is believed that it prevents the creation of new neural synapses.’ I handed the drug fact sheet to the doctor and asked if I should be giving my severely brain injured son a drug that prevented the creation of new neural synapses? He said, “It says that?” and walked out of the room. I have since found studies confirming this and recommending against pregnant women taking Gabapentin as it may prevent the development of their baby’s brain. I have included the lead paper and a summary of the lead paper below.
Robert was on the maximum dose of oral Baclofen when he was bent backwards. It did nothing to help. We found out later that Baclofen is not effective against, or recommended for, spasticity related to Cerebral Palsy (CP). Most drowned kids have a companion CP diagnosis.
We have watched ‘long haul’ Baclofen kids fail. We are now working with a child who cannot maintain body weight. I searched the literature for long term effects of Baclofen. There is little useful information and most describes embedded Baclofen pumps and not oral Baclofen. However, an interesting discovery is that Baclofen is used off-label for weight loss! It causes rapid loss of fat. It also leads to loss of muscle tone. This is troubling on two counts: 1) what happens to the brain and nervous system when the body dumps fat? Does this cause loss of brain mass and de-myelination? 2) how do we expect kids to regain movement if they are being given a drug that reduces muscle tone? Have these issues been studied?
When we left hospital with Robert, after refusing a Baclofen pump, we were told we were permanently harming him and causing irreparable damage to his body. As with so many things, this proved to be untrue.
All drugs have side effects. Many of the drugs used on our kiddos have never been tested for pediatric use. The longer we walk this road, I become more convinced that rest, good food, healthy stimulation and HBOT are the best medicines.