Friday, December 30, 2005

A New Year!

Cameran has her New Years resolution on the go with being Seizure Free for 7 days now!!! It was the best Christmas present ever! She was started on a new med called Topamax last week and it showed to be too much for her. She became very lethargic not responding to us or noises, refused to eat and started running a temp of 100.9. So we contacted the on call Pediatric Neuro where we were instructed to stop the med immediately. She has to stay hydrated on this med to avoid Kidney Stones and she would not drink nor eat. We pulled her off of it Friday, Dec 23rd, after only being on it for 2 days, we could already see a difference in the seizures that had increased and by Friday they were back down to 12 then Saturday she only had 2 and Christmas was the 1st seizure free day. Thank you baby girl! It still baffels the Dr. that she became seizure free even though we stopped the med. Wednesday our Neuro called and said he wanted to start her back on the Topamax at an even lower dose because we need to get her off the Klonopin as its not a long term med and can be very addictive. So we started it that night and she has done much better this time round. Her appetite has increased and she hasn't been to sleepy. We really hope things continue down this path! Its a new year and we won't except anything but the best for Cameran! We are anxiously awaiting her EEG appointment to see any improvements. Just a reminder it is Jan. 20th at 8:30am followed by Neuro appt at 4:00pm. Cameran's 1 st Birthday is fast approaching can you believe it our baby girl will be 1 years old on February 7th. We can't wait to see her Dig into her 1st cake! ;-0

Keep up the good work Cameran! Mommy, Daddy and Big Brother Caleb love you!

Here's to a Happy, Healthy, Seizure Free- New Year!!

Happy New Year!!!

Friday, December 23, 2005

Speech And Development!

Cameran's Speech and Development Evaluations! 12-23-05

Cameran's evaluations are in! The scores are as follows:
Auditory Comprehension she is at a 0-4 Month Age with a 60% Delay!
Expressive Communication she is at a 0-1 Month Age w/ 90% Delay!
Total Language is 0-2 Months of age which has her at a 80% Delay!
Her laughing ,smiling and such skills are at a 5 month level.
Her adaptive skills (feeding herself ect.) is at a 4 month level.

We were completely thrown off my all this but knew there were delays just not to this extent!

Her Evaluation Findings were as follows:
Behavior: Cameran is a sweet and active little girl! Cameran did not present as a social child. She preferred to play on her own and rarely acknowledged that adults were in the room(minimal eye contact, no response to voices). If stood in your lap she made eye contact and focused on the person more, but did not tolerate being "cuddled" she would try continuously to get out of the adults lap. Her attention span when playing was short (average of 1 minute per toy or task).

Cameran's speech/language skills are found to be profoundly delayed. She only produces ones sound (grunt-like sound) for all communication needs. Mom reported that even before the spasms began Cameran rarely cried. She would mainly grunt when she needed something. As stated above Cameran did not respond to voices. In order to gain her attention you had to shake a toy. Cameran was unable to follow age appropriate directions and unable to identify age appropriate vocabulary (including mom). If handed a toy she would hold it in one hand and suck her thumb on her other hand.

It is recommended that Cameran receive speech/language therapy 2x/wk to address the following goals:
1. Increase production of cooing and babbling (with age appropriate speech sounds)
2. Increase ability to recognize voices
3. Improve age appropriate receptive language skills.
4. Respond to age appropriate words and phrases (including own name)
5. Participate in simple age appropriate games.

Cameran's 1st appointments will begin January 4th at 3:00 they will becoming to our home which is wonderful. We will keep you all update on how it goes.

Wednesday, December 14, 2005

4th Month

Cameran's seizures are continuing to go back up in numbers again they are now in the 20-25 range forming in clusters like before and just as hard. Her Neuro requested a blood test Monday, Dec. 19th and it came back normal. This was required before they start her on the new Medicine, Topamax. See Camerans Medicine file for side effects and such. She is to start out on a very small dosage going up 1/2 a dose once a week until she is at 2 pills a day. She will be at full dosage at her next appt. Jan 20th where we will see if there are any changes on her EEG. They will start Cameran's weaning from the Klonopin at that visit so shes not on so many meds. We have lost the small babbling she had picked up and she is no longer responding to her name anymore. Her Speech Evaluation went as expected she did not respond to most things tested on. They are questioning her hearing as she doesn't respond to mommy's voice or anyone's for that matter only really loud noises. We were told Cameran is at a 5 month level on most things and some things even further back. She will start her Development Classes here at home January 5th and her Speech we are still awaiting the results but were told she would qualify since she doesn't babble
Cameran is 10 months now and is still having about 15-20 Head Drops a day. The Klonopin seems to be the medicine that has had best effect over the seizures but the Dr.'s worry that soon it will stop working for her. They say most will start showing a tolerance for the med after a couple of months. Cameran was down to like 2-8 a day but recently has gone back up but not by much. We hope this continues to work for her but no there are no guarantees.
On Tuesday, Dec. 7th Cameran had her 1st Development Evaluation. She says she looks great in the Motor Skills: crawling, sitting up, pulling up, standing unassisted and is taking 1-2 steps already. Go Cameran!!! But will need work else where. She does NOT poke, clap, bang things together, look for hidden objects, play peek-a-boo, hold her bottle(working on it) and shows no stranger anxiety. They also show concern on her knowing who mommy and daddy are. They asked if she will respond when we say "Where's Mommy, or go get Daddy" and she does not. We know our little girl knows who we are as she gives us the biggest grins when we walk in to the room but we don't believe she knows us by name(mommy/daddy)! She will get there as she is showing us new things weekly. Bigger Smiles and lots of Giggles. She had her 1st Hearing Test on Monday, Dec. 12 where she was such a good girl. She passed the Inner Ear Test but her Ear Drums didn't respond like they should(slightly)! They also put Cameran and I in a chamber like room together her in a high chair me in a chair in front of her. They would do small noises and loud noises in speakers to her left and right. She would only respond to the loud noises but then stopped all together as she wanted out of the chair. So she is to go back for another testing in March.
Her Speech Evaluation is Friday, Dec. 16th so I will update all that this weekend.

Friday, December 02, 2005

Cam's Dr. Appt 12-2-05

Cameran went to see the Neuro today and they thought she looked great compared to last visit. They said she looked more alert to her surroundings. While she is still having the head drops she continues to get better in her development. Starting by taking her 1st step 11-29-05. She is one determined little girl. They are requesting another EEG January 20th followed by a Neuro appt that same day to see if there is any improvement. They mentioned to us starting a new med Topomax to help out with the existing few she is having. We have been getting a great response from the Klonopin but they said they can start showing a tolerance to it a few months
starting it which is a big concern. We don't want to lose things we have gained. The Topomax will be our last smaller med before starting the BIG ones -ACTH and Vigabtrin routes we don't want to go but will if we have too. Cameran was such a good baby girl and was flirting with the Dr. She was batting those long eyelashes at him and smiling ear to ear.
She weighed in at 20 pounds 3 ounces w/clothes on and was 29 inches long. She is getting so big. She has been a little fussy the past few days but she has a new tooth fixing to pop through poor baby girl. She starts Early Intervention Wednesday Dec 7th they will be doing her 1st evaluation on her Development. She will also be getting a hearing and vision test very soon. So check back with us soon for updates for next week. Till then check her out trying to walk shes doing great at pushing herself to a stand and a new thing she has picked up is shaking her head no,no. It's too cute ;)
P.S. Can you tell she loves to stick her tounge out???