Jack’s Story: Part 2 of 3 Drop Seizures, Epilepsy, ACTH, Therapy, Children’s Hospital, NOLA Trips
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- Опубліковано 6 вер 2024
- Part two of our JackMAN discussion.
Here we discuss traveling constantly to Children's Hospital in New Orleans, beginning ACTH injections, numerous seizure meds, and beginning therapies.
The good thing is that these parents never failed
Such a frustrating experience. What amazing parents. Wishing the best for your precious child!
Thank you! Just subscribed to your channel. It’s always good to know we’re not alone in all this.
I can definitely relate to having hopes up for a new med, only to lose hope in them quickly. Certain meds helped Raelynn for a period of time, but then their effects wore off even at their max dosage. Is that the same for Jack? Looking forward to part 3! This is like a series of a medical mystery show!
Definitely the same for Jack. Even now, he takes meds just to keep certain types of seizures at bay.
I hope you’re enjoying the vids! I knew we needed to have a sit down and explain everything (and it still isn’t everything) but I we didn’t want it to be too boring or chatty.
@@TheJackMAN2014 My wife and I will be making similar videos soon. We've been needing to make them for a long time, and people keep asking! 🤣
@@HopeAndSunshine Looking forward to it!
Y'all are such good parents Mr Gabe
I was diagnosed with Epilepsy when I was 2 and had my Seizure Tumor surgically removed when I was 8.
My Brother admitted awhile ago that before I was born he caused my brain damage by sitting on Mom where my head was saying he was trying to help Mom.
I don’t understand that part.
Mom said she didn’t even made it to the labor room because I came out early.
You've probably heard this question 1000 times already but, just in case. Was the genetic panel you guys did extensive? We are going through this now with our 7 month old, sigh. Infantile spasms. First genetics came back negative for everything and we thought that was it. Then a second genetics doctor realized they had only done a very basic epilepsy panel, which didn't include some other genes. We did a second one, more extensive and bingo. My daughter has a mutation in the potassium channel KCNQ3. Prognosis is not great but seeing your strength makes me think I will be able to deal with it too. Sending love to you and Jack ❤
Aww . Hope yall had a great day. Sweet dreams
Hope you did as well!
You guys are wonderful parents. Nothing worse than a sick child.
Thank you! We certainly try.
have you thought about trying cbd oil
hope you are doing well jack
Yes! We’ve tried everything imaginable! Thank you.
@@TheJackMAN2014Have you though? There's new strains being developed constantly. Maybe keep trying. The anti-inflammatory effects, over the longterm, might do something beneficial.
Do his seizures still change every few months?
They did, but they seem to be remaining basically the same for now, albeit a little stronger when he does have them.
@@TheJackMAN2014 come please do play date tomorrow please
how is Jack today, is he liking his new bed?
He’s been great! We can tell he love all the space in his bed! How are you?
@@TheJackMAN2014 I'm doing okay