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.

Saturday, January 21, 2006

Improved EEG

1-23-06 Cameran's EEG) Results are in her EEG is reading normal! WAHOOOOO! She had 1 head drop on the 22nd and 2 today which is throwing us for a loop but whats most important is that its showing normal. I guess the potential for seizures is still there as he mentioned and thats just what has happened. Maybe it has to do with her new Toothy she got today this makes #7!
*4 weeks and still going strong! Cameran is still seizure free and is greatly improving everyday. She had her 3rd EEG yesterday and she did wonderfully. Having slept before starting the placing of the cleanser/glue/electrodes/gauze. All this did not wake her as she was to be sleep deprived and that she was the poor girl snored with her mouth wide open the whole time. It was so funny! She woke for the last part of the flickering light test and touched at her head one time and that was it. The results aren't final yet but her Neuro and another read some of it. They say it has really improved, which is great news. They say it is NOT showing seizure activity but is showing Potential for seziures-meaning if we don't keep up with meds and such its possible for them to come back. We are to start weaning 2 of her meds very soon. They want her to be at full dose of the Topamax first and that will be next week when she reaches 50mg a day. She is tolerating it well but still refuses jar and table foods and it is starting to show in her weight as she was 19 pounds 5 ounces last week this week she is 18 pounds 4 ounces and is 28 inches long head cm is 45. The Keppra will probably be weaned 1st then the Klonopin and just leaving her on Topamax and Zonegran! She is so happy and loves to smile. She has a new squeel and started a new sound and it sounds like Chewbaca off of Star Wars its hilarious. She isn't really moving forward in her Speech Classes yet where they are also trying to teach her sign language and basic toys on how they work she shows no intrest. Cameran is so destracted by her thumb that we are getting no where. She is starting her Development Classes Tuesday and will have that once a week. She is awaiting her evaluation with OT they will be helping with all the eating issues. She goes back for her next Neuro appt on February 17th. They will later schedule another EEG to see if their are any further improvements!

Today (Sunday the 22nd) she had another break through it was just one head drop like we saw a couple of weeks ago. It's so frusterating to see these things keep peaking through on her. She has been really fussy today and has been fighting her sleep which doesn't help matters. As we lurk into the weaning process it will probably throw some seizures our way which is our biggest fear. If thats the case she will have to be upped on Topamax as she still has room to grow-up to 100mg. I'll post again when she is to start her weaning process and on her final results of her EEG when it comes in.

Saturday, January 14, 2006

3 Weeks Seizure Free!

Ok minus the 1 head drop we saw on Monday thats all we have seen. It has now been 3 wonderful weeks of being seizure free! She started her Speech and Development this week and is on the road of recovery from the damage of IS! They are teaching her sign language, helping her to explore toys, learn how to self feed and the big one To Reconize Voices (Any Voices) She responds to toys only! She is on the roll with walking and is babbling up a storm. Her newest two things are standing upside down looking in between her legs almost like she is trying to do a flip and is also squeeling up a storm, Its loud but cute! A few days ago she held her arms up to me and said "mama" and I melted, for one she doesn't hold her amrs to be held and two I think she reconized me. But I couldn't get her to do either again so who knows. I was just thrilled to see it. Reminder she goes next Friday the 20th for her EEG. Regarding the Topamax it has been upped again and she is showing it with not wanting to take her bottle. Yesterday we were only able to get her to take about 10 ounces today she has only taken about 4 ounces and its almost 3:00. But she has a really bad runny nose so we think that is playing a role in this also! But her mood has been great! The medicines have been seperated from her meal time now and she is doing much better. She takes her medicine willingly and is taking her jar foods again. But refuses table foods still and even refuses her favorite: cheerios and fruit bites. We hope this will all change soon with the help of OT! Will keep you posted on how her EEG goes which is at 8:30 am(has to be sleep deprived yea right at 8:30 in the morning that ought to make for an interesting day) it is to be followed by her Neuro appt at 4:00 so we will be in Nashville for most of the day so I will be sure to post that night if possible!

Wednesday, January 11, 2006

New Rash & Sore Nose

Cameran really has had a rough couple of days! Starting with a breakthrough in her seizure free 2 weeks! It was so depressing to see her have one of these again. But thankfully that was the only one we have seen! We took her to the Dr. yesterday to what seemed to be a broke nose After x-rays it turned out just being a pretty good bump but no Brakes. shewwww......We still have no idea what she hit. But they are looking into getting her a helmet!
This morning Cameran has woke up with some pretty nasty looking red marks and welps between her legs. We have a call into the Dr.'s to see what to do! She is very irritable right now so we are hoping for a quick response. Thank you IS group for all your help with this! Ok the Dr. called and said it is possible to get a rash from Topamax but it doesn't look like the typical one, says it looks different than this, but don't rule it out. We are to inform him of any changes! He mentioned that you can have a rash reaction to any medicine. Thankfully by the end of the day it went away and hasn't returned. It will probably be like her poor little nose and never know what caused it.

Sunday, January 08, 2006


2 Weeks Seizure Free and still counting. Every Saturday will mark a new week since having her last seizure on Saturday, December 24th! She is improving drastically everyday. Cameran is babbling up a storm and is WALKING! Although she is still wobbly she tries to run. She is loving the new way to get around but gets mad when she falls down! Wednesday night she shared her 1st interaction with her Big Brother and sat in the kitchen floor and laughed for a good 30-45 minutes. Luckily we were able to catch it all on film and what an adorable laugh she has I might say! Caleb loves making his baby sister laugh -he kept saying "She laughs just like me now"! It was so precious seeing them together as a team. As you see in the pictures she has been nothing but smiles and just a happier baby girl all the way around.

New Information I received from our Neuro that I thought I would share! I had recently asked what kind of Hypsaryythmia Cameran showed and his response was:
Camerans shows generalized and multifocal so she's got a little of both types. After we repeat the EEG it will determine if the pattern has improved...I think we will see improvement if she is not having seizures now and this is most important.
Generalized would mean that there is no specific starting point in the brain for the seizures. A focal seizure means that it is coming from a specific point in the brain.
The Topamax seems to be going great the second go round. The days we up to the next 1/2 dose is the days we get less response out of her and she wants to sleep alot. But after 2 days she comes back around but she still plays great on the bad days just is a little more grumpy! Her eating has been soso! The bottles she is taking 20-30 ounces, the tables foods and jar foods she is flat out refusing! We are having to hold her down to get it in her since that's how she gets the sprinkle meds. She gets so mad she want even finish her food! We know it is due to the Topamax as the pills have to be crushed and we know they have to taste horrible as she has only been refusing food since starting this. So we have called in the experts from the IS group(who are wonderful) and they gave us a bunch of pointers like: separate her meds

from eat time so she doesn't associate eat time with pill time thus making her refuse the food. So we started with meds being giving w/Applesauce only with sitting on the counter instead of her normal eating place the booster chair so we don't confuse the two! And I have to say its actually starting to work she still won't eat table foods but is getting better on jar foods! She is to start seeing an Occupational Therapist to help with her self feeding since she seems to be having problems in this area. Its the small things like cheerios that she has problems with, she can pick it up but doesn't know what to do with it from there. So we know with a little help she will get there.