I love it when you guys smile. This would be too sad to watch except for your positive attitude. Jackman is lucky to have such good parents. Keep the faith. God bless you all.
Loved Jacks smile when he met Mickey. As always, thanks for sharing. My wife and I fought getting the feeding tube for the longest time as we just wanted my son to avoid going through another surgery. A nutritionist sat us down and informed us the complications not having it would bring when puberty hit. Hindsight is 20/20, but that was the best surgery for him. Truly feel with you all in the video (even if it is a couple of years old).
Godspeed to you both! (And your daughter!). Having witnessed the trials these children go through, it's amazing that they have parents that can 'go with the flow'. Bless you and Jack!
Jennelle Huff 1 year ago Godspeed to you both! (And your daughter!). Having witnessed the trials these children go through, it's amazing that they have parents that can 'go with the flow'. Bless you and Jack! 3 1 The JackMAN Show
It's fascinating to see Jack when he was younger. He appears to be much more alert. Is that accurate? Raelynn's alertness comes and goes. Looked like he really enjoyed Disney World!
Why did it take so long for them to do the 24hour EEG?. As I understand, it finally gave you a diagnosis.......maybe because it’s such a rare condition?
There's some encouraging studies out on ketogenic diet helping some children with LGS. Just a thought, though I'm sure you're sick of people offering suggestions and I totally get it. It's a roller coaster of emotions trying to hang on to hope and you just want to scream at the sky and dream of a day that after all the billions spent on epilepsy research, with the army of doctors and experts discussing epilepsy, someone, somewhere, would actually figure out how to effectively treat seizures instead of guessing which med or dose of a medication will help this month. As a mother of an autistic child with epilepsy we've also tried a plethora of medications. Keppra and lamictal have been the most helpful. Depakote caused hyperammonia, but was useful in stopping atonic seizures. The antidote/treatment to hyperammonia is lactalose, btw, as per doctors.
Yeah, we’ve discussed a ketogenic diet, but his neurologist is fairly certain it wouldn’t change anything. I don’t believe it would either. And yeah, as far as meds go, we’ve hit a pretty good median after much trial and error. It’s always changing though, as I’m sure you’re aware.
I love it when you guys smile. This would be too sad to watch except for your positive attitude. Jackman is lucky to have such good parents. Keep the faith. God bless you all.
We certainly do our best. He’s our guy, and he’s easy to love!
Loved Jacks smile when he met Mickey. As always, thanks for sharing. My wife and I fought getting the feeding tube for the longest time as we just wanted my son to avoid going through another surgery. A nutritionist sat us down and informed us the complications not having it would bring when puberty hit. Hindsight is 20/20, but that was the best surgery for him. Truly feel with you all in the video (even if it is a couple of years old).
Happy to share! It’s always nice to know we aren’t alone in all of this.
Godspeed to you both! (And your daughter!). Having witnessed the trials these children go through, it's amazing that they have parents that can 'go with the flow'. Bless you and Jack!
We certainly try our best! Going with the flow in this case isn’t very easy.
Jennelle Huff
1 year ago
Godspeed to you both! (And your daughter!). Having witnessed the trials these children go through, it's amazing that they have parents that can 'go with the flow'. Bless you and Jack!
3
1
The JackMAN
Show
It's fascinating to see Jack when he was younger. He appears to be much more alert. Is that accurate? Raelynn's alertness comes and goes. Looked like he really enjoyed Disney World!
Yep. He used to smile and respond quite a bit. Just kinda regressed. Would love to see it again.
You father's inspire me to keep my fightn
@@dominiquezayas9574 We sure try our best!
Yes it's always Fridays when something happen
Yes it is.
Why did it take so long for them to do the 24hour EEG?. As I understand, it finally gave you a diagnosis.......maybe because it’s such a rare condition?
We had a really bad neurologist at first. It’s one of those things that you wish you knew then what you know now.
There's some encouraging studies out on ketogenic diet helping some children with LGS. Just a thought, though I'm sure you're sick of people offering suggestions and I totally get it. It's a roller coaster of emotions trying to hang on to hope and you just want to scream at the sky and dream of a day that after all the billions spent on epilepsy research, with the army of doctors and experts discussing epilepsy, someone, somewhere, would actually figure out how to effectively treat seizures instead of guessing which med or dose of a medication will help this month. As a mother of an autistic child with epilepsy we've also tried a plethora of medications. Keppra and lamictal have been the most helpful. Depakote caused hyperammonia, but was useful in stopping atonic seizures. The antidote/treatment to hyperammonia is lactalose, btw, as per doctors.
Yeah, we’ve discussed a ketogenic diet, but his neurologist is fairly certain it wouldn’t change anything. I don’t believe it would either.
And yeah, as far as meds go, we’ve hit a pretty good median after much trial and error. It’s always changing though, as I’m sure you’re aware.
Jack's Story: Part 3 of 3. LGS, Seizures, Make-A-Wish, Disney World, Give Kids the World, G-Tube