VEEG Day 2...

[andromeda31]

Hello!

Day 2, VEEG. Doctors just came around. Her EEG looks about the same as last year I guess. Lots of spikes still and the drops. Not really one area that would be a candidate for surgery, there was more activity in the frontal vs posterior lobe and we don't want to cut there! SOOOOOO, we will now be trying med #7, felbatol. They are letting us start it up at home so that is good, waiting for all the paperwork to get done yet. Felbatol involves 3x/day dosing and weekly blood draws so that is going to suck, but hopefully it will do the job it is supposed to and make her better. Our other option was to continue to increase the topamax....which didn't thrill me as we were seeing less and less effectiveness with each increase in addition to all the behavioral issues lately. Cross your fingers that the felbamate does the job! I think we will choose the liquid form vs the pill form. The weekly blood draws hopefully won't be too bad as now Logan will be going to morning pre-k this fall so I won't be dragging him all around town. I am going to check if the new medical clinic near us can do an early morning lab. That would be convenient as it is on the way to school...then I could just bring Caitlin to school 3x/wk. I already do early AM PT and chiro appts so adding that in won't be so bad. It will be an adjustment doing 3x/day dosing but I am sure we will get used to it. Oh and felbatol also messes with depakote so we get to reduce that too in addition to weaning off the topamax once she gets going on the felbatol. Hoping this does the trick...and glad I get to go home today!

Lisa O.

[funnylegs4]

Just be aware that she may have withdrawl symptoms when you stop the old meds which can mess up her moods. Best of luck! I hope the new med stops the seizures.

[Paul from Australia]

Dear Lisa,

We hope that the new med helps miss Caitlin. Bless her heart.

God bless and seeya,

Paul, Alison and Grant the champ.

[Earth Mother 2 Angels]

((((((Lisa & Caitlin))))))

Sounds like you have a lot of med tweaking ahead of you. I know that can be nerve-wracking, and my prayers will be with you.

Did the docs tell you what time of the day to have Caitlin's blood drawn? It might be helpful to know whether they want a trough level or a peak level and what times of day those are for the assorted drugs. You will probably want the draws taken at the same time of day each week. We do trough levels for Jon's meds.

I'm glad that you two were able to come home yesterday. Home is always the best place to be.

I'll be praying #7 is Caitlin's lucky number.

Love & Light,
Rose

[andromeda31]

Hi!

They are looking for a trough level, which works out good. With Logan in AM pre-k this fall, he will be bussed to school (and so will my other boys) so I will be able to just put them all on their busses and then take Caitlin to the new medical (peds & adults) clinic which is about 5-7 min from our house and on the way to her school. I called them when we were still in the hospital to see if they had labs early...they open at 7:30 and even though peds aren't there til 8, the nurse I spoke with said we could have it done on the adult side. I am going to set up a standing appointment...she has PT on tues & chiro on fridays so we will pick another day to be lab day! I like that we can do it early and be done. That is what bothered me most about felbatol and considering it last yr, I didn't want to drag Logan to a dr office weekly and have him touching everything and picking up germs. This yr will just be me & C for morning appts. I am SO looking forward to that aspect of it! I've been considering switching all my kids to this new clinic since it opened...so nice & close. But I do like our ped we have now...she is 25 min away from us though. And my own dr is in the new clinic so that is a plus...nice if we are all sick or something to just go to one place (which I have had happen and had to go to separate facilities which wasn't fun when we all had strep throat).

Back on track though...she had her first doses yesterday. Refused to eat breakfast so basically just meds in her belly when she went to school. Her teacher said C had an episode in her stander where she said her tummy hurt and her eyes looked weird so they laid her on the mat to rest for a bit and then she was fine the rest of the day. I reported it to the NP at the hospital and she emailed back to make sure to take with food to help that. And her noon dose went well so this morning I pushed food on her so it wasn't just meds in her belly. No strange things like yesterday though she did have a major meltdown at the end of class. One of the aides that brought her out told me she had never seen Caitlin act like that before which she has known C since early childhood class so that is really something! I guess C was screaming and hitting/swinging her arms at the ladies who were only trying to get her shoes/AFO's on. My gut says topamax is causing this. I can't wait to get up on this new stuff so we can get rid of topamax. In fact, I kindof want to reduce the topamax a little bit just to see if she improves on behavior at all. It is so complicated with all these meds! We have 3 more days at this level for felbatol then go up a step. When we go up on the felbatol we get to go down a step on depakote. We'll see! I know they like to only mess with one thing at a time but I think lowering the topamax a bit too won't hurt. The depakote she has been on forever with no behavior issues from it.

Lisa O.

[Earth Mother 2 Angels]

((((((Lisa & Caitlin))))))

I'm so glad for you that you've been able to work out a schedule to have Caitlin's levels taken. Sounds like a reasonable plan to get your entire family into one clinic, too.

I'm keeping my prayers going for you that the wean off of Topamax and onto Felbatol goes smoothly, and that you will soon see improvements in all regards. Juggling 3 meds at once can be a challenge.

Please keep us posted!

Love & Light,

Rose