Tuesday, December 14, 2010

Let's try again

I'd like to start by saying, "I love our pediatrician!"  I have been so stressed out about Natalie's seizures and seizure meds and the side effects of them.  I've asked everyone for advice, because Natalie's neurologist only appears to be concerned with stopping Natalie's seizures, not with what Natalie is DOING while she's not having seizures (even thought she is still having seizures).  I finally realized I should call our pediatrician for some perspective.

My question was: is it asking too much to expect a drug that will eliminate Natalie's seizures and have no side effects?  She said it is too much to expect, but we can pray for it and in the meantime hope for a balance between controlling seizures and acceptable side effects.  She said a whole lot more that was very encouraging to me, but I won't ramble on...unless you're going through the same thing, it might be too boring, but if you're interested, email me privately and I can ramble on about what she said, if your pediatrician is not as good at giving advice.

Anyway, last week Natalie had a blood draw to get a baseline for her liver (or kidney?  can't remember) function before she starts a new seizure med, Zarontin.  Her neurologist called me back yesterday morning to say that everything looks fine for her to start Zarontin, and I should keep giving her the same dose of Keppra until Natalie comes into the clinic again in 3-4 weeks.  But she said if Natalie gets too sleepy to call and they'd give me the instructions for tapering off Keppra earlier.

I hung up and then realized what I'd agreed to!  The whole reason we're switching is because the side effects of Keppra are not acceptable!  I don't want to wait for 3-4 weeks before we start tapering off.  So I called back, left a message, received a call from the nurse who said Natalie needs to have a level of Zarontin in her body before taking her off Keppra.  "But the doctor said if she got too sleepy, we could taper her off early," I said.  So the nurse left a message for the doctor, who called me by the end of the day to give me the same response, to which I gave the same response...so she told me how to taper Natalie off Keppra.  Which takes 4 weeks, by the way!

This morning as I was realizing the collision of tapering ON Zarontin while at the same time tapering OFF Keppra, I realized I needed a chart.  What if something happens to me and I'm not home to give Natalie her meds?  I can't even be sure of keeping track of this, and I knew Tom wouldn't be able to.  So here's the chart I came up with...after doing it, I am even more glad that I put this together, because I know I would get confused without it.

So we're trying a new medicine.  As the pediatrician that I love said, every kid reacts to every medicine differently, and just because the possible side effects of Zarontin are the same as Keppra, plus new ones, it doesn't mean Natalie will have those side effects.

Thanks for your prayers for a good outcome for Natalie and peace for Tom and me as we navigate this new path.


Brandi said...

Oh Cindy...that chart is overwhelming! I'm glad Natalie has a smart mommy that can put that together!

I hope this new medication works better and the side effects are better than the Keppra.

Hugs to you and big hugs to Natalie!

Angelica mom to JesusRTS said...

I would like to have the long talk her pediatrician gave you, jesus is also on keppra and I have noticed some side affects but his nurilogist says he is to young to know if he is being spacy or if that's just the way he is.. Anyways my email

Angelica mom to JesusRTS said...

is ajmedano187@yahoo.com

Jessica mommy to Alex/ RTS said...

Feeling overwhelmed.......You seem to be in a good place. Very encouraging.

Karen said...

I just want to take all these kids and give them a great big bear hug. You moms of special needs kids are so awesome. I know it is cliché to say God doesn't give us anymore than we can handle, but you need to know even though I don't know you, your children are so lucky to have you as their moms. Cindy-I've connected to a lot of blogs of kids with RTS because of yours and I am constantly amazed at how everyone copes with this disease and always takes a proactive perspective in giving their kids as normal a life as they can.

Please know that I'm a praying woman and I pray for you every day.

Cindy said...

Thanks for your prayers and kind words, Karen. Angelica, I emailed you privately...I hope it helps! Thanks for all the encouragement...it is overwhelming sometimes.

Jacqui said...

Cindy I do not always have time to write comments on your blog, but I do read it regularly. I just want to encourage you that you are an inspiration to me as a mother. I am praying that God whispers to you what will be the best strategy for Natalie. Just like God showed Gideon how to choose an army or directed Noah how to build an ark. Sending you hugs!

Anonymous said...

We'll be keeping Natalie in prayer. I'm thankful that you are proactive in searching out the best for her in all areas.


Kristi said...

Thinking of you too. Your chart will be very helpful.. I am hoping the right medicine will be the new one. Hugs from Noah to Natalie.