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Avatar universal

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
37 Responses
Avatar universal
Don't read to much into the ALT numbers. They can have wild swings brought on by a host of things.  Just keep an eye on them.
                                                  Ron
Avatar universal
I honestly have no opinion on this, it's a medical question that only Doctor's can answer, but I at least wanted to say hello and that I am sorry you are going this with your baby girl..I have 2 grown children and 2 grand children and I know what it feels like when your kids are sick, hope you find some good anwers soon...

Beth
86075 tn?1238115091
Hello, don't think you mentioned that your baby had hep c, so glad forthat if she doesn't, it does sound like you have more of a medical question that should be seen to by specialists, maybe even  hepatologist in that these meds seem to effecting her liver...I of course am not sure about this...just hope that your problems resolve for the better as they often do...best of luck to the both of you...
Avatar universal
Been busy today with the exterminator trying to kill moths instead of virus for a change -- so just caught a glimpse of your post. Congratulations on getting started. Sounds like you found a good medical team. I'm a bit curious about some of those SVR number she threw at you. Was that assuming you were non-detectible at week 4 or not? Also, if your doc thinks your age is going to be such a big factor (mine does -- I started at 58) how come she's then considering the short-track (24 weeks) if I read things right. Anyway, got to clean out another closet and kill those buggers before they feast on another sweater.

Funny though, I asked the exterminator how I'll know if they're gone. As g*d is my witness -- he said, wait four weeks and if you don't see any, you should be OK. Otherwise we'll have to treat longer. So I guess RVR works with moths too. LOL.

Again, congratulations. It must be a great load off your mind to make the decision.

-- Jim
96938 tn?1189799858
Try riba on the moths. Careful they don't go into a rage. But there is that birth defect warning....
Avatar universal
Just to expand a little (and to procrastinate cleaning the closet a bit)-- as you probably know we've been having this what trump what discussion regarding pre-tx negative predictors versus RVR. I've gotten a split decision with two of my doctors saying RVR trumps neg pre-tx predictors and my treating doctor saying not so fast as he wants me to extend to at least 58 weeks in spite of my RVR. And, to no one's surprise, many here have their own strong opinons :)

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.

Also, are you treating with Peg Intron or Pegasys? Did you discuss rescue drugs and when they will intervene?

-- Jim
Avatar universal
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.
Avatar universal
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
96938 tn?1189799858
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?
Avatar universal
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*


Avatar universal
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
Avatar universal
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.  :)
Avatar universal
I have never given myslef a needle...I wouldn't know the difference between the two, are you saying on eis easier to use than another?  This clinic uses both  manufacturers so it is my judgement as to which one I use, I said Pegysys because I saw on my husbands drug plan on the net that it was one of the drugs they pay for, and I forgot the name of the other one so I didn't look it up, but I can choose whichever I want...

As far as being treatment naieve, that doesn't stop you from using the new meds once they are on the market, it only prevents you from doing a trial..They like to start the trial patients with a "clean canvas" so to speak...

As far as me stopping tx at 24 weeks, yes that is my plan if I still showing active virus level...No, if it were like your case, where I show only a few hundred I am sure I would have to seriously consider whether to go on or not, but for now this is my plan...If UD at w2eek 4 go 24 weeks, if still active at 24 weeks stop tx....

*dip*
Avatar universal
I chose to do the redi-pen (Peg-Interferon) because it's just like a regular epi-pen type thing. It comes all inside and you click the top part to the bottom and it mixes and then you just have to jab the tiny little needle (ah so lovely can't even feel it it's so small) in and push down the plunger thing.  REALLY easy to do and there is no mixing of vials or getting out air bubbles or anything.  For me...who had never self injected before...I found it to be the right choice because I was really scared about doing it. I was PETRIFIED.  GOD I made so many "how do you do it posts at that time!!!!!!!  LOL

Once it came down to having to do it for the Epogen it was a different story I would have done ANYTHING to get rid of that feeling and I was looking FORWARD to trying it I was so desperate - plus I think the whole redi-pen broke me in sort of.

Remember...just as many people DONT get the anemia though.  I bet after all your worry you will be one of the ones who does NOT. I bet wouldn't that figure?

Get ready for 48 weeks honey because you are going to succeed and there will be no reason to take you off of anything.  Once you get that 12 and 24 week PCR and it is und und und und....I'll be smiling and saying I TOLD YOU SO!  :)
Avatar universal
CanDo said: 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
------------------------------

LOL. You may have a point, the fellow on his way over didn't even ask for the mothotype, which happens to be of course the hardest to treat, the webbing moth.

-- Jim

Avatar universal
I feel for you, I to have children and know how you feel.  First how old is your daughter?  Does she have hepC?  These are important questions.

My sister's son had the grand mal also, but out grew it.  He was on the same meds as your daughter. Not sure of his Alt ans Ast numbers.  I would seek out Dr. in any children's hospital.  They deal with illnesses that most Dr. have never seen.  Where do you live?  If your near St. Jude's children hopital that would be great, they also never turn any child away  for lack of Ins. or if they are able to pay.

My heart is with you , please post and let me know what is going on,

    The Beagle

Avatar universal
now you got me thinking about this injecting yourself stuff...YIKES!!!  what if I miss, does that mean that vial of drugs is no longer good...
Avatar universal
Hi Jim,
I had a problem with moths not long ago.  Don't know if you have the same moths that I had.  They were mostly little nagging moths.  I did not have to call the exterminator.  I followed them around for awhile and located them in my Pasta area.  This little things love pasta, rice, boxed pasta and/or goods.  They get in there and multiply fast.  All I did was take out everything in that cabinet and threw away almost all of it.  When I was done; they were gone.  So, if it does not kill them you might check out the area you have your pasta etc.

You guys are too funny with this one.  Always nice to have a good laugh.

cajun
Avatar universal
Is your hubby good at throwing darts? If so just draw a circle on your tummy and let him have some fun.... Works for me
Avatar universal
thanks for input...picking a needle to use never entered my mind until NY Girl brought it up...lol

I know the Pegysys is covered by husband's insurance, what's the other full name of the drug?  I need to look that up and see if that one is covered also..Also, is the riba part of the Interferon or is that a seperate cost?  This is going to be very expensive, we have a 10% co pay on our insurance, and like I said before I will have to travel 4 1/2 hours away for all this...But, I just heard from my primary care phsyician and I may be eligible for the "medical travel vouchers" that the governement of Ontario offers...Apparently if you cannot get the medical attention in your area that you need, and need to travel outside your area to a specialist then the travel expenses are reimbursed...That would be great if I qualify because the pockets will not be deep after all this!  lol
Avatar universal
oooo la la you just made me think of another thing that this treatment will offer in endless days of fun other than wigs....butt darts!!!!!!   woooooooooo hoooooo let the games begin!  My husband is a expert at the range with guns, so his aim better be good!  Thaks for bringing that to my attention!!  hehehe  *red faced dip*

96938 tn?1189799858
Let's look forward a few months. You're cranky and surly. You say to hubby, the marksman, 'honey, can you please shoot me?'. Honey says 'sure, dear'.  Before you know it we have a moose on interferon.
Avatar universal
I thought the same thing with the dose.  It makes me wonder if they really know what the H*ll they are doing.  I have thought it over and I am just going to pull .5.  I figure what can it do; after all I have already been giving myself .7 at there (wrong) direction; I figure .5 can't hurt, until I at least get into his office on Feb. 20. I am done going back and forth with this office on dosage.

I can not spend all my time on this right now.  My oldest son (15), has his first Formal tomorrow night.  And his, first date.  One of my babies has grown up now.  I just did not want to be so involved with doseage; that I would missed out on getting his Tux and Flowers and his limo.  I don't have much longer before he becomes more and more independant.  I will not let tx stop me from enjoying these moments.  

So, until my appt. I will draw .5 for my shot./  Oh, and Endocrin changed my Synthroid to a higher dose.

cajun
Avatar universal
hahahaha  that's funny..

I have already been "told" he will not take any abuse from me when I am on meds, and just because you feel sick it doesn't give people the right to be mean to thers (boy he should come here and say that  hahahaha)...But then redeemed himself by saying he would sell everything he owns to buy me whatever I need if we didn't have the money...Of course, now that I think of it, we have the money, so that wasn't so good now was it?...lol
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