Tinkering with Meds- Wish us Luck

[langansmom]

Langan has not had a seizure since Monday morning's seizure-free streak breaker. But she is not sleeping well at all and keeps waking up suddenly throughout the night. I was thinking it was maybe some sort of apnea problem but then realized that for the first 100 days of that nice streak she was sleeping so well and was full of energy in the mornings. Now, she's sleepy and grumpy at school. Apnea doesn't come and go, right? So it must be her little brain. Sigh. So, as much as I hate to do it, I'm going to increase her nighttime topomax and see how that goes. She's only on 12.5mg in the morning and 25mg at night right now so she still won't be in the "therapeutic range" but I think it's worth trying to see if it helps with her sleep issues. This was an increase that was scheduled for months ago but we stopped the increases when the seizures disappeared.

Our neuro says it takes 2 weeks to see the result of any med change, so we'll see how this goes. Wish us luck!

[lacyndarella]

Good luck. I hope you get positive results!

[just laurie]

Good luck! Hope the two week report is full of good news!

[mpalmer118]

Good luck! hope all goes well. *fairies The fairies are here to grant your wish. (boy do I wish it were that easy!)

[Denae]

Good luck to you little monkey! Topomax seems to be a good one for her so far, I hope that you are able to see even better results as she gets closer to the therapeutic range! It is excellent and I would think very promising that she did so well at such a low dose! Langan is an amazing little girl :)

Riley and I are thinking about you both....

[CoolAngel28]

Still thinking of you guys,hug Langan for me...:) Kristin

[RathyKay]

I hope it helps. Sleep changes definitely sound like something is up. And, since she went 100+ days... she could have gained a pound or two during that time to affect her blood levels. Any particular reason why you're increasing the nighttime versus morning, since the morning dose is lower? Just hoping to knock her out? Anyway, we're sending prayers your way...

[Little JT]

Good luck! Glad to hear things have settled since Monday.

[AnnMarie]

Good luck with the meds--Amanda is very sensitive to hers--we are in the process of weaning her Klonopin..it has been very slow, since Jan...we have 3/4 of a .5 mg tablet to go.. I hope the little increase in topamax is just what Langan needs--we have used that for nocturnal seizures for Amanda, when she needs a nasty cycle broken so she can rest. Annmarie

[Lauren88]

Good luck! I hope it does the trick!

Hugs

[langansmom]

We had a nightmare of a night. She tossed and turned and then woke up at least every hour acting very strange. It was horrible. It was so bad that I actually would have given her diastat, except we only had one dose left and I was terrified that she would have a full blown seizure and I wouldn't have it to give. So we barely slept. She fell asleep at about 5am and woke up at 7 in relatively good spirits- quiet but not fussing. I hated bringing her to school but she wasn't fussy and frankly I had no idea what else to do. And I just for some reason felt like we needed to act "normal" if that makes any sense.

I pulled our diastat prescription this morning to call in some refills- haven't thought about it in months but thought it was time. It has been so long that the prescription is expired. Sigh. So the nurse is calling in more today, I hope. I called the neuro and left a message about what is going on and have talked to the nurse- waiting for the neuro to call back.

I am just at a loss as to what brought this on. She hasn't gained any weight- if anything she is up and down one pound depending on the day. No new foods. No changes in any meds or even her OTC stuff. No illnesses or stomach problems. She was making amazing progress with potty training- which is all down the tubes now I am sure after this mess- so maybe all that learning triggered this? Sigh. I don't know. I am so tired I can't think straight. I had enough caffeine this morning to feel like I am on speed- and somehow won a trial when I could barely stand. And all I can think about is my sweet girl and what torture it must be for her to not be able to sleep. I am miserable enough after the last few nights- how bad must she feel???

Kathy, to answer your question, Langan's seizure activity is almost always at night, so the neuro keeps her evening doses higher than the morning ones. We did it with lamictal, too. It keeps her from being too drowsy during the day and SHOULD help her get better coverage at night.

Thanks again for the support. I know it could be so much worse- been there and done that. I am just worried we're headed in that direction. And I have no idea why.

[just laurie]

I'm sorry Wendy! Hope she gets sorted out soon so she can have another record-breaking seizure free streak...and so you can get some sleep!

Hugs,

Laurie

[lacyndarella]

Speaking of teething...could she be getting a molar or something or maybe have a cavity that is hurting? I'm just trying to think of something that might keep her awake or trigger the brain nasties that wouldn't be something obvious like illness or changes in weight and diet.

[langansmom]

Thanks, guys.

Lacy, she has been getting her 6 year permanent molars for a few months now but was seizure-free during the worst part. They're now all broken through the gums so I don't know if that could be causing this sudden crisis.

Talked to the neuro, who agreed with my medicine change. She wants to give it a week and see if things calm down, and she wants me to video any more episodes and send them to her. If things get worse or don't get better, we'll adjust Langan's vns.

I feel better after talking with her- I always do. It's nice to know she cares and that she has a plan.

[langansmom]

Oh, and on the cavity question, we actually have a dentist appointment tomorrow, as luck would have it, so he'll be able to check on that. But we are super strict about teeth brushing and she usually gets a big happy face sticker for her teeth.

Sad that I would prefer that she have a cavity than no reason for this new seizure activity. Sigh....

[RathyKay]

My only other thought... you did mention yeast a while back. How is that battle going? Is it tipping the scales in the wrong direction? We are still trying for control with Tom. I've never seen his legs look so bad. I'm starting to wonder if I should take him in and have them looked at. Hard to tell what is yeast, and what is just from scratching. Ugh. Needless to say, we're in no hurry to start chelation.

I hope you're able to pick up some Diastat soon. That's a scary feeling when you only have one tube and things are looking dicey.

[langansmom]

Thanks for the thought, Kathy. I'll take any ideas I can get.

Her yeast infection cleared a while back and I would think that this would have happened when it was at its peak rather than after it subsided, but who knows. I haven't given her any of the supplements you mentioned, yet, so it can't be from yeast being killed off too fast, either. I went through my records to see if she had anything unusual to eat or even anything in a bigger or smaller amount than normal- nope. Sigh.