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Bets, sorry, just saw your post here.
About the Onfi - who knows why these manufacturers shortages happen, but they are becoming more frequent.

You might call around to all the different pharmacy chains in your area, some of them may still have it in stock.

Also, I don't know if this is an item you can get from the Canadian Pharmacies, you might check with Canada Drugs or some such pharmacy.

Ellie - Thanks. The Canadian pharmacies have been complaining about their shortage since January as well. It's not like it requires plutonium or something valuable, so what gives?

The shortage is unfortunately nationwide, as there is only one manufacturer for this damn drug. The flip good side is that I'm not sure I even like it. It does address the seizures, but it's changed her personality some and also caused extreme fatigue. I guess because one of the components in the Rx is diazepam.

I was able to google the generic (clobozam) and found a series of letters from Canadian pharmacies blasting their Ministry of Health. They complain that the pharmaceuticals actively seek approval for dispensing these drugs but refuse to keep up the manufacture to meet the needs. I totally agree with them.

I have some friends with cancer that have difficulty getting their chemo protocols. I just don't understand WHY. Pharmaceuticals are making record profits, so if the demand is there, why not increase supply?

In D16's case, Onfi has addictive properties to it. It's probably going to be painful to get her off it. Ugh. And then we have to find another one that works, undoubtedly at the expense of pissing her nephrologist off. She's a great doctor but she sure does like to wield her hammer. Unfortunately, it's me who gets hit - because D16 will NEVER understand the consequences of kidney failure. I keep telling the Doc this, but she continues to try to get her to understand how important it is to drink. Blech.

BA - I toggled between your game and the Colts. Good for you! By the way, my other BB friend said he'd go with us. He has season tix and sold them, LOL. My cousin is still waiting to hear about whether or not he can get the suite. More later!

Good luck with Barbara!

TTFN,

Betsey

Bets - has she ever been on a ketogenic diet for her seizures?

There is a movie called "First Do No Harm" it kinda chronicles the Ketogenic Diet and one families struggles with epilepsy and finding a better way than what was being offered. A great thing about the movie is that several people in it were people who had been on the diet and saw great improvement in their lives. It's at least worth a watch. Hope it helps.

Ellie and Subguy,

Although we've discussed the process in depth several times (with the neuro and the GI), we've elected not to do it. And yes, I have several Angelman families locally who've had great success with it, and gone over pros and cons with them as well.

The main problem with her being on it is her other diagnosis of renal acidosis. The ketogenic diet makes a bad condition even worse.

The other issue is her mobility. It would be perfect for her under 2 circumstances: 1) she weren't developmentally disabled and could exercise her own willpower to rationalize sticking to the diet for her own welfare; or 2) she was confined to a wheelchair and unable to procure food on her own.

This is my kid who gets up in the middle of the night (not too frequently, but probably 1-2x in a 14 day period) to snack. I've had kiddie locks on the cabinets but she's been smart enough to cut them off or figure out how to remove the other types. I guess that's a good thing?

From what I know from other family input is that it only works effectively if you stick to the diet 100% and no variations. Otherwise, it's a touch and go thing.

The good news is that the zonegran she's on right now takes care of the lion's share of the seizures, and we were happy to increase the dose, but the nephrologist was the one who had the complete cow about that. She may not get a choice at this point.

Then I can continue to beat the horse named D16 about increasing her fluid intake. Such fun.

Anyhoo, that's what I know on the subject?

Thanks-
Betsey

3 years ago when one of Ryan's anticonvulsants was unavailable, a generic was substituted & I was not informed. He had some major seizures & vomited during one episode. At that time he aspirated which caused pneumonia. 3 days later he was having trouble breathing & we were told it was his last day. I pushed for heroics & after 2 weeks in ICU on life support he pulled through. & it was all caused by the generic substitution!

I know you know this but do your best not top accept anything less than your daughter deserves.

If you need to check out Canadian pharmacies - the largest is Shopper's Drug Mart. You could also try Rexall Pharma Plus or London Drugs.

Barb

Thanks, Barb! I've written them down. And if I ever get that desperate, D19 is 20 minutes from the Canadian border. I wouldn't hesitate to get her to do this for us either.

The thing is that Mr. W. and I really didn't like the side effects of Onfi (clobazam). She's seriously tired all the time and just not her normal congenial, upbeat self. One of the symptoms is suicidal thoughts... and though she can't act on them, she uses her talk chat program on her iPad to tell people that she's sad. I'm listening. And so a drug shortage here isn't the worst thing that happened.

Plus you know the dumbest thing? I probably shouldn't get started... Clobazam has been manufactured in Canada as Frisium for a really long time. But the US just started manufacturing it in 2012, and the FDA has granted them the rights to be formulary (no generics available) until 2016. WTF? Why, since this mfgr isn't the patent holder? How f*ing hard is it to manufacture a formula that's been in existence for more than 40 years? Is it any harder than aspirin or antihistamines?

Anyhoo, she does really well on the Zonegran (generic is zonisdamide). Her kidney doctor doesn't like it because of how it taxes the kidneys. But I'm just going to have to have the neuro talk to her and tell her to stick it up her butt. Right now, D16 isn't motivated to eat or drink much of anything. I'd rather be able to get her to do more and be her normal self. I miss *that* girl.

So all in all, I'm going to have to push the family agenda here.

And Barb, I'm so sorry to read about Ryan. That's so awful and I just can't imagine how you felt. That had to be a scary time, and one you won't ever forget. Big hugs to you for having to deal with that crap.

Wow Betsey you have a lot going on there. I have never had to deal with epilepsy, I am sorry you have to deal with all of that. I cannot imagine the emotions that go with everything involved.

My dad worked at a major research hospital for years, trying to find a cure for epilepsy. He was the laboratory manager and they were working with magnets, that is how I got interested in watching the show.

I sure hope things work out for you.

Betsey: we had just bought this house & were using it weekends while renovating Ryan's room, bathroom. I had not told my ex about the impending move (6 months away) that would take Ryan 3 hours away. One minute we thought Ry was acting funny, the next they were taking me to a funeral planning room at the hospital. In shock - I phoned my ex (couldn't even push the buttons on the phone) & after no contact for 5 years - he was in the room with me, Josh, Ashley & various relatives who were telling me they hadn't seen him in 10 years. And for the next 2 weeks I spent many hours alone with him. Small talk was difficult but we both behaved & we both love our son.

I'm glad to say that Ry is doing great & we are off to Disney World with him again in just 11 more sleeps! I have vowed to take him annually as long as he is doing well. And he knows! Today we were talking about it and he kissed me! Wow - I didn't think he knew how. What a great Mom moment!

Barb

Subguy,

Aww, thanks. But this is a road I've traveled all her life so it seems normal to me. Her epilepsy seems insignificant compared to the developmental disability - as far as being on my payroll and eternal worry list goes. But it's all good. Really. I wouldn't change her even if I had a magic wand. I know it sounds crazy, but I really enjoy her world.

That is really cool your dad was in the research side. That's fascinating and I'm so glad there are people out there who do that kind of thing. It's so worthwhile. Please thank him for me.

Her neuro just called and we put together a plan. We're weaning her down and will make the final call in a couple of weeks. She's also calling the epilepsy specialist at the hospital to have HIM put a call into the manufacturer to find out the deal. I told her to call me a jaded business person, but it will probably go back to money. At the very least, our next step is to see if she can even get more active and herself by going down to 5 mg a day. There's always hope.

Okay, time to head out for the day.

Thanks for all your input today--

Betsey