Lamictal is the best drug around and those that can use it with results are extremely lucky.
Don't get riled up OLG. there is nothing to indicate that this boy did not get the best of care. Treating a chronic illness that is not
necessarily life threatening is certainly open to different methodology and it is definitely not a one size fits all situation.
Sure with hindsight being 20-20 and all it is easy for all of us to say what WE would have done. but there is not a person on this board that has the intimate details about his problems or how they were managed.
I would challenge anyone here to tell me from a distance with no inside knowledge of my son's condition how I should have treated him. Sorry, I did my own research, interviewed different doctors and followed my own mind and instinct as to what his care would be as a youngster. Many doctors were opposed to my care plan and guess what? they were all wrong
Warning: This will be a long post, hopefully to make people aware of how to save themselves or family members and to alleviate some fears !!
Hi JB, You wrote and asked me why I didn't come into the Jett T thread. I was afraid of what I might say and I certainly am not here to bash or question what the T's did or did not do for their son. I don't like the Scientology religion, especially since Tom C went off the wall on Oprah and Matt L. And I heard that a woman is not supposed to scream or carry on during childbirth? Ugh, that is all I wil say about that.
Let me start by saying my heart sunk when the report came in on Fox that Jett had died. I have admired JT for a long time as he loves very deeply. I remember when his girlfriend Diana Hyland passed away from cancer, he was much younger than her, but loved her so, it took him yrs. to get over it.
That is one of the reasons he didn't marry for so many yrs.
There couldn't be any two parents who would love their children any more than John and Kelly. I would defend that with all my heart. Also to those who write about JT, please include Kelly in your statements. Yes we all love John, but a Mother's love is as deep as can be and she is hurting as much if not more.
With the above said, I'm writing this to say, yes you hit the nail on the head when you said, "Doctors were opposed to your plan and guess what? They were all wrong."
Those are the ones I may bash, sorry but I've been through far more than most people in my own illness and there wasn't a doctor around who knew how to treat my illness, let alone anyone who had ever really treated an actual patient.
I have Vasculitis, it's still a toss up to which kind. Polyarteritis or temporal arteritis or both. Kawasaki is the childhood version and another variation of Vasculitis. It is in most cases self limiting and it sounds like the T's docs had a handle on this early on. Kudos to those docs.
Treatment for ANY vasculitis is usually prednisones, anti inflammatory meds and in severe cases, chemo such as Cytoxan. Not given in kawasaki, but the other vasculides. Aspirin in a child with a fever I question, due to Reyes syndrome. Note: Also scarlet fever can present with almost the same symptoms.
I am not going to go into my illness here as I want to list some helpful tips for those parents that are sitting here today afraid after hearing of this horrible tragedy.
Many children outgrow seizures, that's the good news, but they can come back later in life.
There is treatment with many drugs such as Dilantin, tegretol (which alleviates hyperplasia of the gums alittle better than dilantin) Lamictal, Depocort and a few others. Sometimes Phenobarb or valium is even given to bring a violent seizure under control. Also general anesthesia is sometimes used.
From what I understand, Jett was taken off his seizure medications due to it affecting his liver. My guess is his liver enzymes were up. With MANY meds, that risk is always there. Sometimes you have to weigh the risks against the consequences.
I had three people on seizure medication at once yrs. ago. I spent many nights without sleep watching over them as with two of my children their seizures were quiet ones. My hubby's were typical violent Grand Mal and he would go into status epilepticus. (That is where medical intervention is needed ASAP. Where the seizures do not end on their own.) But that also was his fault as I had separate pill cases for each of the three. Hubby was responsible for his own dosing, until I had to take over that responsibility too.
It was the Summer from Hell IIRC. They all had head injuries within a matter of months apart. Having four boys, they didn't play with dolls, it was always climbing, baseball and running through the house chasing each other etc.
Hubby had fallen against a steel drum and hit his nose very hard, almost pushing it up into his brain, the way he fell.
Anyway, swimming is out of the question unless seizures are under control and then only with extreme supervision. So are rides at amusement parks,
never skipping a dose of meds and if some one is a care taker, they
DON'T SLEEP. The night time care taker stays
awake, that's why they're there. I didn't have that luxury as I am not wealthy. People with seizures often need more rest and can't take a lot of excitemnet, noises, lights and activity. I feel a mother or parent knows their child better than anyone and can spot often when something is not right.
One seizure a week warrants someone taking the patient to and from the bathrm. and if a shower is needed, there are safety stools to sit on and other bathrm. safety precautions. You can even place a harness type device on a person's waist, and if they suddenly fall, you pull back and let them slide down your leg safely to the floor.
If seizure medicine has to be taken away, it can only be done at the rate of 1 pill per week. Same with adding a new seizure med when one isn't working or causing damage. In the second case, the process can be much quicker as long as another med is given to substitute.
Also blood levels need to be drawn to see if a person is getting enough medication or not enough. If your doctor doesn't seem to have a handle on things, change and do your own research. Don't always trust that they know best.
An example here is even if you don't have a seizure disorder and you were taking seizure meds for another reason, you would still have to reduce slowly as you
COULD have a seizure then. The same applies for pain meds, CNS (Central Nervous System meds) and many drugs prescribed.
I hope I have helped some, maybe I'll be in time out again. Hope not since I really wanted to make those aware of what to do and what not to do. To not be afraid, but cautious.
In time my children and hubby went off their meds and live normal lives now.
That goes without saying that I could at some time be faced with this same thing. I have learned we have little if any control, so I leave it in God's hands as we Mothers do get tired. :blowkiss: