Aa
HIGH ALT in my infant daughter
My daughter has intractable seizure disorder, meaning she has about 100 grand mal seizures a day, this started at birth. She is currently on dilantin the ONLY drug that gave her seizure control, it really has been a miracle, as we tried A LOT of drugs. Well, her Alt 2 WEEKS AGO WAS 99, we were asked to get another level this week, it is 200.
We CAN'T take her off this drug, I cant lose my baby, I cant. I'm sorry for sounding so emotional but I just want to be sick right now.
Her neuro mentioned that if her alt was still high or higher we may need to take her off the drug. Please tell me there is a drug therapy that can help her. What can we do? Is there anything we can try?
Sarah
We CAN'T take her off this drug, I cant lose my baby, I cant. I'm sorry for sounding so emotional but I just want to be sick right now.
Her neuro mentioned that if her alt was still high or higher we may need to take her off the drug. Please tell me there is a drug therapy that can help her. What can we do? Is there anything we can try?
Sarah
Geez jim, another curve ball. Whats is the plan if you don't have at lease a 2 moth drop by week 12? Guess you could just go shopping everyday. Hope your feeling well today.
The pills are a little to big for their little beaks not to mention the difficulty of spoon feeding them. The exterminator has said we could double-dose the injected spray if the response is weak. As I said before, extended treatment has been discussed but only if there's no RMR (rapid moth response) at week 4. Unfortuntatly, because this apparently has been going on for some time, he thinks it's a stage 3 problem. Oh well.
-- Jim
-- Jim
Though you'd be reluctant to share the riba - means more for you. How 'bout atlernative treatments? (for the moths). Like filling the closets with CO2 and sealing the cracks? Do moths scream?
Hey Jim good to cya! You get those moths, but I sure hope you're wearing a respirator around toxic chemicals...
You are very perceptive, you said
"Your doc seems to have listed a couple of pre-tx negs for you -- age and fatty liver. Yet, she's willing to go short track if you RVR. So, unless I'm not reading things right, your doc seems to be in the RVR trumps neg pre-tx predictor camp -- another hint she might be is both a 2 and 4 week PCR. Anyway, something you might want to discuss with her next time."
I had the chose of going the standard route for geno 1's at 48 weeks, or longer if need be, or the "new" method of thinking going 24 weeks if UD at week 4...As I mentioned on my original thread, she (Heathcote) is involved in a trial that gathers dna from bx smpls to determine response vs non response...I think this was a precursor to her trying the 4 week PCR and 24 week route for geno 1's...So any who - I'm taking this course based on low viral load, the fact that I am a woman (she also talked about men versus women and that men have quicker fibrosis time) and my age...If I am still active at 24 weeks I pull the plug...This gives me the 6 months of possible fibrosis being sheltered and am allowed the additional few years to wait for the PI's...Now the down side of that, I am then not tx naieve, so I will not be elegible for any trial, but I have weighed the risks vs rewards and waivered that in the event I MAY clear by 4 weeks...If I don't clear by 4 weeks, and show significant log drop by week 24, I am sure I will "re think" the whole scenario, but for now this is it...The beauty of all this is, I get the option to show I am a responder for the shortened course and if not I can go the full 9 yards...
*dippers*
You are very perceptive, you said
"Your doc seems to have listed a couple of pre-tx negs for you -- age and fatty liver. Yet, she's willing to go short track if you RVR. So, unless I'm not reading things right, your doc seems to be in the RVR trumps neg pre-tx predictor camp -- another hint she might be is both a 2 and 4 week PCR. Anyway, something you might want to discuss with her next time."
I had the chose of going the standard route for geno 1's at 48 weeks, or longer if need be, or the "new" method of thinking going 24 weeks if UD at week 4...As I mentioned on my original thread, she (Heathcote) is involved in a trial that gathers dna from bx smpls to determine response vs non response...I think this was a precursor to her trying the 4 week PCR and 24 week route for geno 1's...So any who - I'm taking this course based on low viral load, the fact that I am a woman (she also talked about men versus women and that men have quicker fibrosis time) and my age...If I am still active at 24 weeks I pull the plug...This gives me the 6 months of possible fibrosis being sheltered and am allowed the additional few years to wait for the PI's...Now the down side of that, I am then not tx naieve, so I will not be elegible for any trial, but I have weighed the risks vs rewards and waivered that in the event I MAY clear by 4 weeks...If I don't clear by 4 weeks, and show significant log drop by week 24, I am sure I will "re think" the whole scenario, but for now this is it...The beauty of all this is, I get the option to show I am a responder for the shortened course and if not I can go the full 9 yards...
*dippers*
Hey jim if this one don't pan out you might want to consult a mothologist. There usally found at larger exterminator's clinic's
Just a thought - didn't you say you were doing PEGASYS instead of Peg-Intron? Don't you haVE to use a regular syringe for that? Are you experienced? I found the redi-pens a SNAP easy as pie - I never thought I would be able to give myself a syringe (until I needed the Epogen and if I wasn't so sick I wouldn't have tried LOL).
If you are RVR but have a couple virus hanging around like I do...are you still going to pull the plug at 24?
Also just because we are not tx naive for the "new" drugs it doesn't mean there aren't other options. In addition to doing a longer course...there is the consensus interferon that Magnum and some others are doing. I'd like to do that with riba IN CASE but if my vl is that low at 24 (better than the 419 it was at 12) I might be convinced to hang around on the peg-interferon/riba. THEN if it didn't work...I could STILL switch over to the Consensus after if I had to.
Just my way of thinking of trying EVERY option available at this point....that is my grand plan....making sure I have more things to try IF I HAVE TO!
The doctor I went to today (he is a psych works in rehabs) has a lot of experience with HepC because of the huge amount of his patients with the disease. He was talking about the newer drugs with a pretty good amount of knowledge and he told me he thought I was doing the right thing attacking now because in all reality you dont really ever KNOW if they are REALLY going to come to be and the medical community has been excited by others that haven't panned out before. He said "your liver might be shot in 7 years...what you are doing now is helping to heal it, worse case scenario". That is what I've been trying to remind myself!
It made me feel better about being proactive - and it should make you feel the same. :)
If you are RVR but have a couple virus hanging around like I do...are you still going to pull the plug at 24?
Also just because we are not tx naive for the "new" drugs it doesn't mean there aren't other options. In addition to doing a longer course...there is the consensus interferon that Magnum and some others are doing. I'd like to do that with riba IN CASE but if my vl is that low at 24 (better than the 419 it was at 12) I might be convinced to hang around on the peg-interferon/riba. THEN if it didn't work...I could STILL switch over to the Consensus after if I had to.
Just my way of thinking of trying EVERY option available at this point....that is my grand plan....making sure I have more things to try IF I HAVE TO!
The doctor I went to today (he is a psych works in rehabs) has a lot of experience with HepC because of the huge amount of his patients with the disease. He was talking about the newer drugs with a pretty good amount of knowledge and he told me he thought I was doing the right thing attacking now because in all reality you dont really ever KNOW if they are REALLY going to come to be and the medical community has been excited by others that haven't panned out before. He said "your liver might be shot in 7 years...what you are doing now is helping to heal it, worse case scenario". That is what I've been trying to remind myself!
It made me feel better about being proactive - and it should make you feel the same. :)
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