Damn seizures

[lacyndarella]

I don't know what to do anymore. I start to think I see improvement, and then...crap. He had four tonic seizures yesterday. And he's had 3 already today. He hasn't missed any meds. He isn't catching a cold. He slept all night both nights. He's a little crabby, but I would be too if I kept having seizures. EPILEPSY SUCKS!

Lacy

[callyflower]

So sorry to hear about the seizures. Jimmie is so little, how about trying the keto diet now....before he's off to preschool and other situations where he'll notice the differences in his foods and his peers? I know you were thinking about it months ago, so maybe it's time to revisit that thought. Never underestimate the power of the right diet!

[LIZARD]

Aw, honey...((((((((Nacy))))))))). :(

I wonder if he's got new triggers?? Mine changed over time, as I think you know. We have definite fall now; it was in the--BRR!!--twenties overnight Thursday, and well, my brain let me have it all day yesterday. We're also about to get some significant rain. Maybe things like that are affecting him? They can be very subtle changes, too.

*hug *hug *hug Wish I had more answers for you...


L :(

[Denae]

DARN! I know all to well how frustrating, heartbreaking, and down right sucky that is.

It seems to be the way it is with LGS, and Ri's "LGS varient" Have you considered Keto anymore?

Now is better than later, I have to agree with Jimmies age trying now is better than later. I wish to this day that we had tried it with Riley when Dr.Parrott first suggested it when Ri 4.

(((hugs))))

[lacyndarella]

I know. I know.

I just was hoping to put that off for a while. The last thing I want is to spend a week on a hospital cot at 6-7-8-9 months pregnant. And once the baby comes, the last thing I want to do is take him to a hospital.

[Paul from Australia]

Dear Lacy,

We are sorry to hear about the seizure flurry. We all hate seizures.

Hopefully stability is very close.

With love to you all,

Paul, Alison and Grant.

[callyflower]

There's NEVER going to be a "good time" to start keto. But if it helps, you(and especially JIMMIE)will be so glad you made trying it a priority and if it doesn't, then you'll know.

[lacyndarella]

There's never a good time...but right now is a particularly bad time. There is more than Jimmie's health to consider. I am not going to rule it out, but I would like to wait at least until spring. I can barely get out of a regular bed, let alone that hospital chair/bed thing. I can't sleep on my back because of the pressure, and there would be no way to turn to my side in that thing. Plus, not a really good idea to be around that much illness this close to the end of my pregnancy. And then for at least the first few months I would like not to expose Charlie to it as well. If we could do it without the hospital stay, it would be fine, but that's not an option. So we will try and wait until spring at least. We have orders for levels check. We'll see if we can adjust the meds again and will give it a little more time...maybe he just hasn't adjusted to the changes we've made yet.

[Carly'sMa]

Lacy,

Of course it's your decision - but, ask the hospital what kind of accommodations they can give you for sleeping. I think they will work things out for you.

My 2 cents - I'd do before the baby comes if you can. The baby might be fine because your immune system will protect him. After the baby comes, you will need someone to watch him and it will be so much more to deal with. See if you can do it while the baby is still inside and not demanding. But, check with your obgyn and see what they say about your and Charlie's exposure if you were in the hospital with Jimmy. Also, could you take days and David take nights? That way you could sleep at home.

Sorry about the seizures. Maybe he's getting a cold, but you haven't seen the symptoms yet.

[LIZARD]

[QUOTE=Carly'sMa;286510]Also, could you take days and David take nights? That way you could sleep at home.QUOTE]

David works at night.


LIZARD, frustrated about this, too :(

[Mother's Heart]

Aw Lacy, I'm sorry. :( It does get rough....all the ups and downs, and the constant struggle and vigil. (((hugs)))

When I read the field trip thread thursday, I resisted the urge to say the moody cry/laugh behaviour sounded pre-ictal or prodromal for an oncoming sickness. I wanted to be in denial and didn't want to be a wet blanket.. Maybe he has a latent bug 'bugging' him, or was just leading into that unstable seizure-ness...or maybe not. Bless his heart, and yours.

cj

[lacyndarella]

Also, could you take days and David take nights? That way you could sleep at home.

Children's is a 3 hour drive, without traffic. Home wouldn't be an option. Ron McDonald's might if there is an opening...which on short notice, probably not...a hotel might be, but the cost would be prohibitive since we're talking downtown Chicago. Spring would be easier, even if it meant leaving Charlie with my SIL.

[Carly'sMa]

It's good that you have family support.

We are pretty much all alone - but I'm not sure that we could have really made it if we stayed in NYC. Our lifestyle with a disabled child requires so much more flexibility -- Plus, I have one brother, fairly disinterested. In laws are in Maine, and no way would I ever live up there. Parents are aging and can't lift Carly.

[Denae]

have they considered klonopin for short term use when he has flurries like this?

Origionally Ri was only supposed to be on Klonopin for 5 days to break up a bad flurry when she was coming off of topomax the first time.

I have to agree, there really never is a good time, but agree too that this many months pregnant would really stink sleeping on a hospital cot.

[RathyKay]

(((Hugs))) I'm with CJ on the change in behavior possibly meaning illness or seizures. Tom's had a couple of extra giggly moments recently that have me on alert. I don't like extra passive behavior, either. Although, to be honest, reading your fieldtrip account, I was really wondering about allergies. If the hay was bothering him? Or animal dander? They could also be seizure triggers.

I also wanted to chime in that sooner is always easier than later on diet changes. The more aware of the world they are, the harder it is. I wish I had started things sooner, for all of my kids. Of course, I think dairy-free would really help Jimmie. It's sooo much easier than keto, and you can stay at home and sleep in your own bed.

[lacyndarella]

Jimmie's meds tends to constipate him somewhat. Always have. According to the epi, this is not a normal reaction to zonegran, but whatever. About once a month, he'll go a few days without pooping. He pooped on Thursday morning. Nothing since, until about 11 am today. 4 seizures on Friday. 5 seizures yesterday. 3 this morning...and none since pooping. And goodness what a poop. I have been controlling the slight constipation with diet. This morning he had prunes. This usually gets things moving. But my thought is now that the constipation (however minor and easy to control) may be the new trigger. We'll see how the next few days go and if when he gets less than regular next time if we see another increase in activity.

[Paul from Australia]

Dear Lacy,

Unfortunately constipation can certainly be a trigger. In the olden days before the PEG and when Grant ended up in hospital with bad seizures the neuro routinely would have Grant's bowels cleared out totally. He believed that the conspitation could be a trigger.

We hope to hear good news soon.

Paul, Alison and Grant.

But my thought is now that the constipation (however minor and easy to control) may be the new trigger.

[andromeda31]

Hi,

I can relate to being pregnant and in the hospital...I was 6-7mo pg when Caitlin had her hip surgery and was in hospital for 5 days. It wasn't so bad, we actually got more attention and I didn't have to lift a finger! (Whereas the previous hospitalization I was doing ALL the work-like vomit cleanup, sheet changing, etc things you would think they would do). I mostly laid on the couch-bed and read my books. If you have a choice, this would be what I recommend.

And it actually wasn't so bad having the baby along this summer for all Caitlin's shunt revisions (total of 4 wks in hospital!). It is just hard to divide your attention between the kids and you feel like you don't get as much breaktime for yourself. It was easier the younger he was...I am afraid now what I would do because he likes to move & crawl (I am still nursing him so can't be away). He was 2mo old the first trip so basically he just ate & slept and I would push him around in the stroller for entertainment (and a break for me to get out of the room). The 2nd trip in august I also brought the packn play and he played and slept in that. I didn't worry too much about germs since I mostly just sat in the room with Caitlin and went to eat in cafeteria...he probably came into less contact with germs since I wasn't taking him to stores or places like I normally would have been doing. Hope this gives you a little stress relief about it! :)

Lisa O.

[lacyndarella]

Thanks Lisa. I appreciate the personal experience. I am going to talk to his neuro soon, but I thought I would wait until I get his blood levels done, so that at least she has those in hand...that should be sometime this week. I think she will be willing to give it til spring, especially since we just changed his med regiment like 2 weeks ago. That really isn't long enough to know if it is working or not...and it did look promising before the weekend.

[mpalmer118]

Lacy, I am late chiming in, as usual. :rolleyes: I tend to agree with you about being in the hospital while pregenant. I think Jimmie will still be young enough and adaptable enough to adjust to Keto by Spring.

I am so sorry you are seeing the increase, hopefully you are right and it is constipation. Have you thought of trying glycerin suppositories? We had to use them for Rachel when she was little. The doc said they were fine to use as long as it wasn't an everyday thing. I didn't want to put her on any additional meds.

[lacyndarella]

I bought pedialax grape flavored strip things after I made the connection. I can usually get him moving with fruit, but sometimes it takes a day or two. This stuff is supposed to work overnight and should be okay as long as it is not used more than once a week or so. If I see a need for anything more regularly than that, I will talk to his pediatrician. But he really is mostly regular. And tugging at my chair at the moment. lol

[RathyKay]

Constipation definitely causes problems. I keep thinking Chelsea (Leah / lkelley) had seizures when she got backed up? We've never seen seizures, but Tom is definitely more spacey (tends to miss the door and walk into walls among other things) when he is backed up. At this point, I finally have him pooping daily, and if he skips, I hit him hard the next day. He does so much better all around when he's not backed up. I keep thinking there will come a day when I won't worry about whether Tom has pooped or not, but we're not there yet.:o Anyway, now that you have the connection made, it's something to look out for and act on.

[andromeda31]

Hi!

Yeah, all of Caitlin's seizure stuff began with her not 'going' for a week...april 2007. Ugh. In fact she has a visit with the 'poop doctor' today (GI clinic). She is off of the miralax now, but still get 2 chocolate exlax for 'dessert' every night. But she likes them and she goes every morning like clockwork! It is so much better than when she was backed up all the time....it would be nice to not think about poop for a day though!!

Lisa O.