I just cant sit around and watch him go like this. I just wouldnt ever be able to forgive myself if i knew there was something we didnt try. I know hospice says no treatments but how do they feel about alternative meds? Had a friend of a friends mom call me about a month ago and said she went ahead and bought some graviola but after researching it i told her no thank you because of his existing symptoms. i was afraid...
He takes 2000mg a day of keppra and thats it. only other med is celexa. Guess i can only pray now he doesnt go blind. Maybe his will go away too... i dont know
Matthew has had eye trouble from the original dx and it has been one symptom that has gotten progressively worse over the 22 month nightmare. either one of his eyes will turn all the way out while the other one will stay straight. either one of them will do it but its usually only one at a time. he has had one pupil (the same one, his right eye) that has been slightly dialated since the dx of lepto. He had been seein...
Even though Matthews latest MRI has shown the lepto disease has slightly improved, the tumor close to his brainstem continues to grow out of control so they have stopped all treatment and hospice is supposed to be here today. He continues to get worse every day. he has completely lost the ability to walk again and his eyes turn out in the opposite direction causing his double vision. He used to correct it b...
Things can definitely go too far when people complain about headaches and tummy aches and simple bs but ive come to realize (after seeing so much of the bs that i wanted to explode, especially on facebook) that its only because people seriously dont realize how bad it can really be. Example... I have a friend of mine going to college and playing football and will probably be drafted by the NFL to play pro ball next y...
My son was on a small dose of celexa but our last stay at the hospital we were told alot of the anti depressants lower your seizure threshold. I cant for the life of me remember what they changed it to but it knocked him out completely. Slept like a bear in the middle of winter for quite a few hours so we got a second opinion from our NO on the celexa and were told it would still be fine so he went back on it. matt
Same with us Jan. I feel guilty that i didnt do enough research for some clinical trials that Matthew might have been eligible for when the waters were calm. there arent very many promising trials for a grade 2 which was what he was dxd with. But when the poop hit the fan it was avastin all the way. Im still learning the true nature of avastin and what a miracle drug it can be but the truth is in most cases it is a l...
Im glad things are looking better. Them damn seizures can be a bugger. Matthew hasnt had the grand mals but his also last a few days and sometimes weeks before he is back to "normal". matt
Hmmmm. Even tho Matthew is doing better these days, sounds like a good option for him as well. I wonder if it would hurt to break the capsule open and give it through his feeding tube? Think we might try to get the drops first too. Too bad smoking it dont work, as much as my boy smokes he would have been cured by now haha matt
Even though i got a call at work at 4:30 am Monday night/Tues morning from my wife tellin me she had called an ambulance because Matthew had stepped on the line that goes to his feeding tube and yanked it out, things have gotten better since that very time. By the time we get to the hospital he is able to have a full conversation again. After over a week without "talkin" to him, it has been such a relief to...
my perfectly healthy 19 year old son was dx with grade 2 gliamatosis cerebri on 7/22/11 after a month of double vision. he had his 7th of 33 treatments of radiation today on 8/31/11 and will be followed by chemo. what a bombshell
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