Jimmie update: Not all good :(

[LIZARD]

Lacy called again tonight. They're still at the hosp. Jimmie is now determined not to be B6 dependent, but no other cause has been found for the szs. They are milder now, and he's having one or two a day, she said, although as of 8:30 EST, he hadn't had any today.

So...this means that ACTH has been started. :( We were hoping against hope that this would not be the case, and she said they'll try it for a month or two to see if it stops the szs. :confused: Now I don't understand real well. He may come off of it if it works (?).

She also said that insurance was refusing to pay for ACTH because of its unreliability(?). Did I understand that correctly? Anyone else have this problem?

I'm also quite baffled over the fact that the szs stopped after the B6 was started. If he's not B6 dependent, why did the szs stop for several days?

This sounds more and more like my parents' situation with my hydro 40 years ago, and my current situation with Drew; the more we know, the more questions we have. :( Dang...:(


LIZARD :confused: :(

[taft]

Taft doesn't have IS but when he starts something new its not uncommon for it to shock his system and they slow his seizures for a few days but hte seizures return soon after.

[RathyKay]

I'm so sorry to hear that B6 isn't the magic bullet for Jimmie. I hope the ACTH does the trick.

So...this means that ACTH has been started. :( We were hoping against hope that this would not be the case, and she said they'll try it for a month or two to see if it stops the szs. :confused: Now I don't understand real well. He may come off of it if it works (?).
I'm sure someone with more knowledge will chime in, but I thought ACTH was only a temporary treatment, whether it works or not. It's steroids, isn't it?

I'm also quite baffled over the fact that the szs stopped after the B6 was started. If he's not B6 dependent, why did the szs stop for several days?
but when he starts something new its not uncommon for it to shock his system and they slow his seizures for a few days but hte seizures return soon after.
Lizard, I thought you knew by now that there is no rhyme nor reason to seizures (says the woman who obsesses over every seizure her son has trying to figure out what triggered it). I was thinking along the lines of Taft, although "shock" wasn't the word I would have used. I guess I was thinking that some people talk about a "honeymoon" phase with drugs (and I'm lumping B6 in with AEDs here), and after that, the seizures return.

(((Hugs))) for you and Lacy, and continued prayers for Jimmie. I pray the ACTH works wonders for him and they get home from the hospital soon.

[LIZARD]

Lizard, I thought you knew by now that there is no rhyme nor reason to seizures

Yeah; I knew that. ;) Mine are very different from his, though, so I'm confused about this. Even after thousands of SPs, I can say my frequency of szs has never been what Jimmie's was before the B6 was started, so when they stopped, it seemed reasonable to think the B6 was the necessary treatment. Now, what?? How could they stop completely, when he was believed to have been having perhaps 100 a day, or even more?? She said he still has one or two a day, but this is after several days of none at all. That's still so much better! I'm just baffled that the conclusion has been made that the B6 was completely unnecessary. :confused: :( Am I making sense??


Thanks, hon'. :)

LIZARD :)

[Firewing]

First of all let me say how very sorry I am that B6 did not turn out to work for Jimmie. With almost every new drug Tehya tries she has some success, I call it the honey moon period. Tehya had the most success on ACTH, she had 11 seizure free days!!!! This was at a time when she was having 50 seizures a day. This was a honey moon period for Tehya and she started having seizures again after that 11 day time period.But they were never again up to 50 a day unless she was sick, so the ACTH helped. Because Jimmie is only having a few seizures a day, there is a really good chance ACTH will work for him. It is THE first line drug treatment for IS. With Tehya we did not try ACTH until she had IS for a few months because I was scared of the risks. I wish we had tried it sooner. It might have helped even more.

[chloaver]

So sorry to hear about the step back. I can only hope that the ACTH will work for Jimmie. I know nothing about those drugs but I know others do who can give input on them, I'm sure. Can't they keep Jimmie on the B6 as a precaution? Again, I know nothing about these type of seizures but if it worked at first or even helped lessen them for whatever reason, I would hope they could keep him on it. Hope they find something that helps. Good luck!!

[just laurie]

Well, whether it was a honeymoon phase or not, the B6 did improve his EEG and give him some seizure free days. That in and of itself is great. I'm sorry it didn't turn out to be the whole answer. I pray the ACTH proves to be the rest of the answer and little Jimmy is seizur free once again.

Hugs to Lacy, Jimmy, and family (and to you, to Lizard, 'cuz you are "sort of" family too:))

Laurie

[LIZARD]

Thank you all. :)

I wish so badly that I were closer to her. :( I have so many questions myself about all of this. I was really afraid it all sounded too simple for Jimmie to just have to take B6 for the IS to stop. I just hope to God they're not in for the frightening road of Lacy having to constantly watch, wait, and fear. :( My parents went through that with me, and Mom and I were talking about it today--how isolating it is, even today, when all everyone else you know is concerned with is recitals or soccer games. Even I, having a son with autism, know what that's like, and she's already so far from family. It would kill me to know she has to endure that. :(


LIZARD :(

[langansmom]

I am so sorry to hear this. I was really hoping that they had found the answer.

I do wonder about the B6 making such a big difference early on. Hopefully someone here with B6 dependent kids will chime in, but I have heard that sometimes B6 dependent kids need much more B6 than the typical dose. So maybe they could increase it? We tried it with Langan and saw absolutely no difference in seizures. She has always had honeymoons with meds but not with B6. I seem to remember that there was some supposed risk of nerve damage or tingling on huge doses of B6 but our neuro didn't think that was really a big risk and seems like I read that if there was an experience of that that things would return to baseline with the lower dose. Wonder if it would make sense to try a higher dose of B6? I also thought the true B6 test required that they use a huge dose, check the EEG, and then take the dose away completely in the hospital to see if the improvement correlated with the time when B6 was used. Did they do that?

On ACTH, my understanding is that it can only be used for a short period of time b/c of the steroid and infection risks. Kelly and Kim can tell you more about that- Jenelle and Lily both did ACTH. I have never heard of insurance not covering it. That stinks! I know they have a lot going on, but it might be worth an appeal.

(((hugs))) I know your heart breaks for them. I don't even know them and my heart hurts at the thought that they could be heading down this strange path we are on with Langan. I hope things turn around for them soon and that this is all a distant memory for them in a few years.

Please let them know they are in our thoughts.

[lacyndarella]

Okay, maybe I can shed some enlightenment! B6 really did nothing; they did the B6 IV push and it did not affect the EEG at all. We really have no idea why his seizures stopped. Further, the second EEG (the reason they thought he was B6 dependent showed no Hyppsarithmia (or whatever the spelling is) but some focal activity. When the seizures returned after 5 days, they were less frequent and less severe. I had every reason to believe the B6 was working, but apparently it was the topamax affecting his activity. Topamax, however, would not affect the EEG. His EEG when we returned to Dr. Stack showed the Hyppsarithmia returned and the focal activity (which was not present on the first EEG). Still Dr. Stack said the 3rd EEG was better than the first. The effectiveness of the drug was never the problem with BCBS covering the ACTH. Prime said they did not have any information on the drug, which is absolutely stupid since it has been THE drug for 50 years. Finally, they said they saw a powder but not a liquid or gel. I called the insurance company myself and got them to cover under medical instead of pharmaceutical coverages. We had to pay $520.00 (20%) because we have not met our $2000.00 deductible yet (not that we won't...this year and next without a doubt!).

I love Children's Memorial, but it is a hospital and I'm really glad to be home.

We did have a problem, while incarcerated! The baby girl sharing our cell was having intractable (sp) seizures and was very very sick. She was on red alert and the nurses had to come running everytime her alarm or call button went off. I understand that...I even understand their checking her first, since Jimmie is otherwise healthy and happy (they called him their Jingle Bell Baby). But after the 6th time I pushed the f@$%^g button and they ran in and checked her, I told the charge nurse on her way past, " I pushed the button." She ignored me, walked over and turned off the call and left. I promptly stood up and went out to the nurse's station and told the poor guy at the desk if they ignored my baby who is also a patient in that room one more time I would kick her ***...and could I please have some diapers. They moved the little girl that night and we had no more problems. They were all very nice and polite, and I might add, they answered our call button when pressed.

Lacy

[langansmom]

Glad you're home.

I remember that pharmaceutical vs medical coverage thing. I am convinced it was a ploy by the insurance company to make things difficult. :rolleyes:

Hope things keep improving.

Hugs to your sweet little jingle bell baby!!

[just laurie]

You are learning quickly how to fight for your little guy. Is it okay that I almost laughed at the pic in my head of you going out to the nurses' station? I could just imagine their reaction!

Good work on the insurance company too. Sometimes I am totally convinced they do things like that intentionally because many people don't bother to fight and then they don't have to pay. My motto is never take the first no as the final answer.

Hope this treatment resolves that EEG and sets Jimmy on track to a happy, healthy life.

Laurie

[LIZARD]

You are learning quickly how to fight for your little guy. Is it okay that I almost laughed at the pic in my head of you going out to the nurses' station? I could just imagine their reaction!

I sure did! :D She can do it, too. She's done it for my kids and me as well. :)

Glad you're back, hon'! Call me later.

***xoooo,

LIZARD :)