HIGH ALT in my infant daughter

[miasmommy]

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

[vegas777]

again I suffer from not proof reading what I type  LOL  it's sensitivity not sensibility, although in some cases of a PCR they both may apply...lol

[miasmommy]

She was in a childrens teaching hospital for two months.  What they *think* she has is so rare that only 132 people in the world have been diagnosed with it.  Its called Ohtahara, although there is an underlying cause causeing the seizures, they are fairly certain she wont grow out of it.

No, she doesn;t have hepc, but I didn;t know who else to ask.  I know from experience that the patients and the patients parents tend to know more about new drug therapies, which is why I am talking you you guys first, so I can talk to her neuro armed with some info, you know?

I just wondered, there has to be drugs that lower these enzymes, see I have no knowledge of liver diseases, ask me a question about the brain, I got it covered....lol.

I'm just nervous as he seems to want to take her off of it and try a new drug, she has tried many many drugs, none except dilantin worked.  I cannot go back to the hospital for months and watch her seize.  Cant do it.  I know milk thistle has been known to have some cleansing preoperties, so I will ask about that although western medecine tends to frown on alternative therapies, I dont know what else to do.

[NYgirl]

Part of me would LOVE so many PCRs but the rational part of me knows I would crack up - I find it to be the MOST stressful thing in life and have no doubt as to why at first you did weekly's and then switched. NO DOUBT.

I think honestly the smartest thing to do (IF again insurance would LET us do them but of course getting insurance to approve such a thing is impossible) a weekly or bi-weekly PCR but mentally I just dn't think I could take it.

I had a 4 and 12 and that's enough till 24 for me.  I still may go next week just to find out what is up with the 400 problem........but then again since I have no desire to quit I might not.

If I had just had that 12.......I'd be looking through different color glasses ;-)

[cuteus]

I know the fear. I for one did not want to do this again either. I rather feel like c**P longer than feeling well and then start feeling c*appy again. One long run was better for me.
yesterday< I was at the clinicaltrials.gov site, checking for post tx studies and I saw one that was recruiting 3 s for a study of 24 v 48 wks, I thought it was interesting since other studies claim there is no difference, so why study it further?
I also saw one from Schering about tx extension to 72 wks for geno 1. I guess they don't believe 48 is enough for some either. I did not get through all of the studies, though, too many(if there is such a thing).

when the last stretch comes, you get that fear and then that little voice telling you "hey, is not that bad, go a little longer, for good measure..."  Tough choice...I always go with my gut, ok, when it counts.
good luck

ps I hate the riba feeling on the stomach...argh...that first thing in the morning sickness. yuck!

[vegas777]

the sensibility is <50

[jmjm530]

My doctor did weekly PCR's starting at week 1 until I became non-detectible at week 6. Thereafter his protocol is monthly PCR's but I decided to only do them every 2-3 months. Monthly was getting too stressful. LOL. You mentioned your doc's protocol is 2, 4, and 12 week PCR. Curious what the sensitivity is.

-- Jim

[NYgirl]

Jim's the one who convinced me to have a 4week!

In relation to judging the 4 week to the 12 week I find that it is crucial...I would have been ECSTATIC at 12 weeks to find that I had a 419 count - but because I KNOW i had a 411 at 4 weeks......it ruinned it.

Had I not had it....I would have been looking at a completely different scenario and assumed that I went from 589,000 to 250,000 to 100,000 to 411 or something like that instead of what it now appears.

I'm all for it if the insurance company will pay for it that is!

[vegas777]

you're just a moth kind of guy I guess....Hey, did you have a 4 week PCR?

[jmjm530]

I wish I had your mothotype which was probably a grain moth. Instead of throwing away food, I have to throw away and/or dry clean clothes/rugs as my mothotype is the Webbing Moth. :) I always seem to get stuck with the harder-to-treat species :)

-- Jim

[vegas777]

I am hypothyroid too and also on synthroid...how is your TSH levels on tx?

[can-do-man]

Now you went and done it, we went from a mothologist to maybe needing a mooseologist. Will the madness ever end?

[vegas777]

how much does the riba cost?

[NYgirl]

Most likely the Peg-Interferon is covered by the insurance as well I can't see why it wouldn't be at all.  I mean it's pretty much the same stuff!

The Ribavirin is a whole different prescription.  Pills (well capsules).  I get 5 a day x 30 days.  It's got a lot of different names (I take Rebetol).

You want to find out in advance too on the Epogen or Procrit - Ambien and a good antidepressant.  The antidepressant is crucial as 1/3 of us would be suicidal without it. I went on it a month before hand so that it could reach effectiveness.  Oh also maybe check on the Neupogen.  You KNOW the Ep and Neup are just in case situations........but I wouldn't leave the doctors office without the AD and the Ambien.  The Riba can make you speedy - and since I've been on this junk I've had the MOST VIVID NIGHTMARES IN THE WORLD.

I mean the not sleeping is one thing but now I sleep and have the craziest nightmares all night long!  Without the Ambien aaagh!

[vegas777]

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

[cajunlady]

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

[FlGuy]

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.

[vegas777]

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*

[vegas777]

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

[can-do-man]

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

[cajunlady]

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

[vegas777]

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...

[Mister beagle bailey]

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

[jmjm530]

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

[NYgirl]

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!  :)