09/18/2023
Update on Celine’s PMG:
We seen the Epilepsy Neurologist and Team last Wednesday. The news we received was devastating to say the least. Celine has been taking on more frequent seizures which can happen every hour for two minutes since the rescue drug is still allowing for seizures to happen afterwards it is determined that she is drug resistant. The cause is Polymicrogyria (PMG) that affects the whole right side of her bread where the cells look like little beads and knotted up. One huge section is worse than the rest. Since she is 3 years old, her nerves are trying to make connection to brain tissue that isn’t functional. Solution is 100% major brain surgery to save the left side of the brain. The left side is being affected because she is now having Generalized Tonic-Clonic Seizures that are clustering to the left side of the brain since the right is miss firing, then results in her normal Focalized seizures. This is dangerous as it can cause damage. By the age of 10 years old could suffer from SUDEP (Sudden Unexpected Death in Epilepsy) since puberty causes a huge about of nerves to try and connect. The plan is to figure out which surgery would be most helpful.
It is going to be 1 of 3:
- It is either dissection of a 1/4 of her brain where the majority pmg is at and hope the seizures don’t come back from the right side the brain. (This option probably won’t be selected as half of her brain is not formed properly.) Success rate is 3% of pmg patients. Not to mention huge whole in your head. This is something we will likely refuse.
- A corpus callosotomy is when they cut the corpus callosum (middle nerve fibers), essentially disconnecting the left from the right side of the brain but both sides still function. This probably won’t make her seizure free as it has affected her left side already where she is now having generalized tonic-clonic seizures from the right side passing over to the left. Success rate is 5-7 years seizure free.
- The hemispherectomy is when they either disconnect or remove completely half of the brain, and then that half of brain no longer functions or causes seizures. They are leaning towards this one because she is young enough new nerve endings should form on the left side of the brain and make limitations smaller. But she would still need to learn how to sit up, talk, walk, all over again and possibly eat,
We will have to travel back and fourth to London frequently for multiple tests to be done to have a baseline for hearing, sight, development while tracking her seizures since this is brain surgery and if something goes wrong they need to know where. While this is tremendously affecting all the family members, she is a twin and we have a 7 year old who is autistic and doesn’t fully understand. Celine is heavy care as she wants to be carried everywhere and only wants her mommy for the most part. It is difficult for her to eat as well and right now we are seeing some good days. The doctors have drastically increased medication my adding aggressive drugs that all come with side effects and gave stomach medicine that is equivalent to children coming out of chemotherapy. Cold & flu season is here which means this could cause her to have some serious complications. Funding for different programs is still in the process of trying to happen as we all feel like we are in snail mode for anything to start happening. This could be a year processing of testing which feels debilitating. Because of all these circumstances we are severely behind on standards of life bills and the whole household feels it while fumbling to make sure that we have enough for hotels. Since she isn’t going through Chemo this means that hotel stays come out of pocket some offer $100 a night instead of $150 plus food and fuel and not working. Therefore we started another gofund me and will be doing various things to raise money. Please consider donating.
Let’s Extend Celine’s Life: 3-year-old diagnosed with polymicrogyria The unexpected and … Sherry Sloan needs your support for Let's Extend Celine's Life
