Tuesday, January 31, 2006

What comes next?

This week has been a bad week for Cameran as her runny nose seems to be getting worse after every upped dosage of her Topamax. Her Neuro doesn't want to put the 2 together. I took her to see her Pediatrician on Monday the 30th re: her nose and he said it just looked terrible. So he gave us some Clarinex Syrup to see if it will help clear it out. He thinks it sounds like its the Topamax causing her nose to do this as it seems strange for her nose to start running the day we started it and when we stopped it for the 4 breif days her nose cleared up only for it to return after restarting the Topamax again. We have had nothing but trouble out of this med from day one. Her breathing is getting worse and worse, she started gaging on her milk yesterday and started coughing really hard and started with a really heavy breathing almost sounds like she is on an oxygen machine the way it sounds. She has stopped taking any and all jar foods and table foods since starting the med, we have only been able to get her to take 1 jar food last week and that was a fight. The position we are in is: Is it the med doing this or her nose causing these changes they are both a possibility.

Her moods are horrible all she does is cry from being so off balance from all the meds she is on they are Zonegran 50mg 2xday, Keppra 2.25ml 2xday(=450mg), Klonopin .25mg dissolve tablets 2x day, and Topamax 25mg 2x day. She just isn't herself right now, Its so upsetting for us to see her go through this as she struggles to keep her balance. We are still awaiting a response from her Neuro as I have sent him e-mails and a phone call of when we can start the weaning of her Keppra and Klonopin as planned. We are in a rush to get this started as we know its causing her to have the drunken effect and Extreme Irritability. The seizures have come back as of last Sunday but they are very mild. We see very odd movements from her and don't know quite what they are as they are different from the classic head drops associated to IS. She now does shoulder shrugs weird eye movements and does a stiff neck type of deal. We are so hating this right now and are ready for this all to end already. I have never wanted her to grow up so fast so she can grow out of it! Caleb tells us all the time now, "Why is Cameran crying all the time?" It's not her personality at all to be this way and we hope to soon have her off the Topamax along with some others and start her on Vigabtrin.

Cameran is also teething really bad right now. She has managed to keep the teeth coming. She has now received her 8th tooth that makes 6 teeth in 5 weeks time. Our poor baby girl is just having a hard time as these teeth are driving her nuts she is chewing on everything shoes, feet, toes, fingers just everything. She also likes to bite so watch out, I got woke up by her the other morning of being bit on my cheek after she was blowing rasberries on my face. What a wake up call! Oh one more thing re: her nose when we saw her Ped yesterday he said after the X-Ray tech looked at her bumped nose from a couple of weeks ago that she did have a Non Disaligned Fracture. That would explain alot of the swelling and bruising that hung around for 2 weeks time! Well I will give an update soon of the Neuros comments and steps of things to soon start.


Kelsey Celeste said...

Hey Cameran! We just wanted to send our love from LA and tell you we are praying for you!! We love and miss you sooo much!!
Love, Tasha and Kelsey

JSmith5780 said...

Karen- the poor little girl. As a mom who as been there/ done that, I would recommend pushing hard on the neuro, tell him either he sets a wean schedule or you begin on your own. Not that I recommend weaning on your own (not to say I haven't), but hopefully it will be a wake up call to him. Four AEDs are 2 too many!! My second suggestion would be to talk to your Ped about the acidosis issue. See if he can order a bi-carbonate level. You really need to rule this out ASAP. Third, if you know Vigabatrin is the next step, go ahead and order it so you can start as soon as the neuro gives the okay. I use www.mastersmarketing.com, it's the cheapest by far. Some people on the site have had some delivery/customs issues but I never had. The longest an order took was 3 weeks, usually it's closer to 10 days. You know I am a huge fan of Vigabatrin...it worked for Austin twice, with minimal side effects of hyperness (lasted a few days) and NO vision issues!
Good luck,
Jen mom to Austin