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Saturday, August 23, 2008

Never a dull moment

OK, OK, I'll say it, UNCLE!

Yesterday morning Dave went very early to his hyperbaric oxygen treatment. Ellie had been up again at 3:47am until after 5am. She wanted to come down at 5 but I didn't let her because I was worried about how little sleep she was getting. I had fed her and changed her diaper and held her and tried to coax her back to sleep getting more and more frustrated. Finally she lay down and scooted her way close to me. And then alternatively had reached out to grab a fist full of my t-shirt and then push me away. I decided that maybe my presence was too distracting so I put the blanket on her and stood by her bed until she fell asleep. Around 8am I heard her peep. I was so tired I let her peep a few times. She does that - makes a sound and then you go in and she has turned over again on her side, thumb in mouth, asleep. But then I heard an odd gurgle and ran in there. She was seizing. She wouldn't look at me when I called. I tried a few times. Nothing. She wasn't in there. Her eyes deviated to the left. I turned her on her side and gave her the Diastat kit and called 911. I kept calling to her, telling her mama was here and that she was a brave girl and that it was all going to be ok. This was a weird seizure because she grabbed my finger and held on with her little fist. Her color was good but the gurgling did not stop. I was worried about her choking but her color stayed pink if not a bit pale.

The EMT's were there within 4 minutes. They must know me on the 911 call because I called and the woman on the line said something like what is the problem. I said, my daughter is having a seizure. She said, what's your address. I told her and she said, we're on our way. I hung up after the 15 seconds all that took and went back to Ellie. I have since put a phone right by her bed because running into my room to make that call was excruciating.

She seized for around 40 minutes. Luckily they didn't have to give her as many meds as they did last time - just a 2.5 more milligrams of Valium. Last time it was three doses of ativan and one of fosfentoyn or something like that. It's in the post I wrote about that over a year ago, under the seizures tab. For some reason I don't want to commit the gory details to long term memory.

We were home again by 5pm because after Ellie had slept off the Valium she perked up and it was good to be able to care for her at home.

I'm sad. She was so bright and had just gotten her energy back. Her depakote level was 68 which is in the therapeutic range but apparently not for Ellie. My hope that she would out grow the seizures any time soon is gone. Her dose is upped by 125 milligrams now so we will see how her energy level is after two weeks when she adjusts. If it is low I am going to talk to the neurologist about trying some other drug. God I HATE giving her all these drugs - but if I don't the consequences are just as bad. The neurologist thought her latest bout of no-sleep and sleep being off might be due to subliminal seizure like activity that had been going on.

Sigh.

I'm tired. I'm sorry. I feel like I am a bad mother. I feel like if I had gotten up with her at 5am like she had wanted versus trying to help her back to sleep maybe she would not have seized. I feel like my bad mood over Dave's finger and the stress of dealing with it all brought her seizure on. I feel bad that she has to be on a drug that deadens her brain activity at all. She's so brilliant and we got to see that more and more over the past couple of weeks. She seemed fine today if not tired. I worked hard to make sure she was hydrated and getting her meds at precisely the right time and not letting her nap too much in the day so that she can get on a regular sleep cycle. I have set my alarm for 6:30am so that even if she is up at 3:47am I will wake her early and get the sun on her face to try to reset her internal rhythms.

She was practicing her finger spelling today again. That made me happy. I always worry she will lose something after a seizure. Her latest words are Mama, Santa, Dada as well as signing the ASL numbers 1-5. She is working on the letter's B and I and R - the open hand ones are harder for her. She even went in her pony for about half the time she normally does but it's a start. She's such a little sweetie and she is growing fast. She has really taken a stretch over the last couple of months getting longer all the time. I wonder if her brain is changing too and more prone to these fire storms when she is in a growth spurt.

Not much more to say, am still feeling a bit numb.

12 comments:

sleepy_mama said...

Hi Kathyrn,

I LOVE that Ellie is doing that finger-spelling. What a smart cookie she is.

I HATE that she had another seizure.

I hear your pain and frustration about worrying that you could have done something to bring it on or prevent it. You can second-guess yourself about that, but your intentions are always good, sweet, and nurturing of Ellie. I wouldn't want you to spend any time second-guessing that.

Go easy on yourself. The more you beat yourself up, the less you'll have for that Angel Girl.

--Christa

Bird said...

I think you should pat yourself on the back. Thanks to you she seized safely in her bed and not on a hard floor.

Is it possible that her lack of sleep actually caused the seizure? I've read in some of the epilepsy forums that lack of sleep can trigger a seizure. Is it possible to prescribe a small child something like ambien? Or maybe a small dose of ativan if she's having trouble sleeping?

Also, I know that you are not an ABR person, but there are several parents on there who have been to IAHP, which is vehemently against seizure medicine. Many of their children are on "modified atkins" to control seizures.

Ok, that's it. Prayers for you and Miss Ellie. The first time I ever read your blog was during the last seizure you referenced. Since then my own baby has had his share. THey suck SO much, but I remind myself that the kid has hardware in his brain--is it any wonder sometimes thing go wrong?

Kathryn said...

Thanks Christa!

Bird - what is IAHP? and do you know the name of that diet you referenced - have not heard of it. Not sure it would work for Ellie because she is very intolerant of any richer foods especially meat. But definitely worth looking into!

Eliza said...

Dear Kathryn,
I am so, so sorry to hear that sweet Ellie has had another big seizure, but glad to hear that this one wasn't AS bad. I personally get terrible migraines which my neuropsyche has me on Lyrica and Keppra for (he believes based on my trigger pattern, nausea, and semi-comatose state after that they are some sort of subliminal temporal lobe seizure activity--I was already on these meds when I first had an EEG and it was normal, but I did not at that time have a migraine and was premedicated and not sleep-deprived since it was done while I was in Club Med for something else, so who knows). I think it is entirely possible that the sleep disturbances are to blame at least in part; since I had a series of sleep studies and went on Mirapex for severe RLS and have been sleeping better I have barely gotten migraines at all. And there IS, after all, a reason they have you come for EEGs sleep-deprived. Lack of sleep=increased possibility of seizure activity. And I really don't think you are to blame for the sleep disturbances--Ellie seems like she's just going through one of those phases.
The other thing I thought of in reading this (I have three special-needs kids so I am an armchair pediatrician but am not in fact an MD so take this with a grain of salt) is that since Ellie'e recent growth spurt perhaps she has "outgrown" her dosages on some, if not all, of her meds. We recently went through this with my youngest, who has severe GI motility issues and suddenly after a long period of doing fine (and GROWING!) started getting very "backed up" and vomiting again. I was freaking out, thinking "oh no, the Neocate isn't working any more, the child has gotten WORSE!" and then I read a post by another special-needs mom about her son outgrowing his meds (Depakote, funnily enough) and starting to have increased problems as a result. So per our GI doc I increased the dose of Miralax that the child receives daily via G-tube by two grams et voila! Daily poos again, and no more throwing up or residuals. I also gradually increased the volume of the bolus feeds of Neocate, since the baby (I really ought to stop saying that, the child turns three in a couple of weeks but is my BABY!) had been getting fussy before feeding time. And sure enough, no more fussiness. Could Ellie's sleep disturbances perhaps be due to reflux? As she's gotten bigger she may have "outgrown" her reflux meds, which could certainly lead to sleep issues. I myself have a hiatal hernia and severe GERD, and if I forget my bedtime meds wake up with a VERY sore throat, so perhaps her throat is hurting and the refluxing is disturbing her sleep? Just a couple of theories for you. I didn't think of adjusting doses after a growth spurt until I read that post and then felt like a total moron for not thinking of it, but it's not something that automatically springs to mind as you care for your child as a non-medical professional.
Since Ellie HAS grown, perhaps the increased Depakote will not affect her as severely, and maybe if you go up a bit on the reflux meds and she gets back into a better sleep pattern you could reduce the dose by a tad, just 50 mg or something, if it starts "zapping" her. And the last thing...if Ellie is allergic to Sulfa drugs (Omnicef, etc.) do NOT let them give her Lamictal or she could develop Stephen-Johnson's Syndrome (which I have had and do not recommend). There is a connection between Sulfa drugs and Lamictal that some doctors forget about. Keppra may be a possibility for her--I take it and while it initially "zapped" me just a LITTLE I have now adjusted and don't even notice it.
Best of luck, and go easy on yourself; you're doing your best and you're under a TON of stress.

Angela said...

I am so sorry to hear Ellie had another seizure/911 call. And I also know the feeling of hoping it's behind us, only to have it strike again...

You did everything right -- you are a terrific mommy and you did NOTHING to contribute to the seizure...okay?

Sending our love and lots and lots of finger spelling Ellie's way!

Angela

PS -- Bird, is it the Ketogenic diet? Or Keto for short?

Mamá Terapeuta said...

Hi, Kathryn
sucks that you have to go throu this again. Four weeks ago my daughter seized for the very first time, it was terrible. Actualy, it was a status epilepticus, she seized for almost 2 hours and then was in an induce coma for 5 to 6 days... Awful. Luckly, she is now as she was befor the seizure.

I see Birdie hasn't reply to you yet. I'm also an ABR mother, so I guess she is talking about the same things I've heard!!! The diet is a ketogenic diet, a lot of kids have had good result with this. It is even a treatment included in medical research about epilepsy. You should do it under a doctor supervision.

And the IAHP is the Institutes for the Achievement of Human Potential (www.iahp.org). They offer a good rehabilitation program specially for the cognitive area. They dont like the drugs, neither does ABR and I think any parent... I HATE to have started with Depakene... Hope that ABR will help me to take it of in a couple of months.

Hope you both are doing better now. Big hugs.

julie said...

Oh, Sweetie, I'm so sorry you are going through this hard time. When it rains it pours. Please don't blame yourself. It seems to be the mode of the mothers of our era to blame ourselves for our childrens' suffering, both great and small. I have noticed with my second daughter how much less worry and guilt I feel - simply because I have been through mothering before and realize how much is out of my control. I know that my situation is very different than yours, but I believe that as mothers we must simply show up and do the job of the moment. What other choice do we have? We make choices in the moment based our best intentions. I know that you have the highest intentions (in your beautiful, and as you say flawed, human form) so the second guessing of passed moments has no place.

Love to you and Dave and Ellie.

BusyLizzyMom said...

Big Hugs. Seizures are so scary.
We love that she is finger spelling. Too smart.

Laura said...

I'm so sorry about the seizure. I hope you can get everything worked out. I'm glad Ellie is doing some finger spelling now. Spelling and reading seem to be her link to the world.

Penny L. Richards said...

Sleep-deprived moms don't cause seizures. If they did, seizure-free kids would be a rarity.

Jake does sometimes get "disorganized" after a seizure--he's not unwell, but he seems to lose some motor-planning skills and other sequencing abilities for a few days or maybe a week after a seizure, and then it comes back, slowly. He seems so frustrated during those times! It's hard to be patient--but so far, the skills have always come back, and sometimes he even gets a little "bump" (or so it seems).

And Jake definitely has seizures related to growth spurts--it's pretty much the only way we know for sure that he needs a dosage change, because he gets a smallish dose of his meds for his weight, and they don't blood-test for levels with this one.

Bird said...

Ok, I wasn't talking about the Keto diet, but now I'm going to dig around the board and see if I can find the link that someone posted about "modified Atkins." Those boards could be printed and sold for all the information they contain.

Pam said...

The diet referred to is the Modified Atkins Diet for seizure control. There is a super informative yahoo group called atkins4seizures. It is based on the work done by Dr. Kossoff out of Johns Hopkins.

I don't know how it would work for you since the underlying theme is FAT heals the brain. Rich. I will vouch for its effectiveness. My daughter, 16, started on the diet on August 27. One month later we began weaning off of 1000 mg. of depakote. As of last Friday, she is completely weaned. She has had one breakthrough seizure 2 weeks ago. Much milder, shorter, and with no after fatigue. Other than that, no seizures. No depakote. No brain fog, hair loss, depression, or fatigue.

If you google Dr. Kossoff, Atkins, you'll get alot of info. Also, Matthews friends, and several sites related to Atkins for Seizures where you buy an online book. But the first references are all free. Many of the MAD-ers have other disabilities as well.

Best wishes on your journey to find wholeness and health for your child.

Pam