The First Tooth

Tonight, while playing with the girls, grandma found what may have been the source of Bree's irritability. Bree cut her first tooth - her bottom left one!!! We couldn't believe it; how exciting to have something like a tooth to bring such happiness to our lives. I know Paige is a few days away from her first tooth because she's been a little cranky the past day. The girls really are doing quite well - rolling over all the time, sitting up (with help), playing with toys as well as tracking them. Their development is really coming along. Bree's doing well so far on the Keppra even though it's only been a few days. We're very hopeful that this will be the medication that will get her seizures under control. We shouild be hearing from the Geneticist next week about the test done for Rett Syndrome. Fingers crossed it's negative; although they won't be out of the woods yet. The doctor will test them for one other mutation and if that one comes back negative they will continue further testing at Shands Hospital in Gainsville. So even more of the "wait and see" game.

Bree's New Medication

Our neurologist called yesterday and has decided to put Bree on Keppra. It's a very common drug used to control seizures with no side effects. She'll start slowly on her dosage and in 9 days be at a therapeutic level. So far her seizures have been very mild, with only 3-4 noticable seizures a day. However, her irritability is through the roof. She will have frequent screaming fits most likely cause by her seizures. It's hard to tell if she's in pain from a headache or blurred vision. The Keppra should only take a couple of days to see results and I plan on speaking with their neurologist to see if we can try B6 vitamins to help with the irritability. Paige is doing great! She's her happy-go-luck self and showing no signs of seizures. So all we need to do is wait and see if the Keppra works.

Here we go again!

About a week and a half ago Bree was getting big red bumps on her leg. A few days later the cluster moved to her arms. Her pediatrician said they looked like mosquito bites so I left it at that. Thursday she developed a cluster on her cheek that looked so painful. I decided to call the Neurologist and he told me to stop the medication and to give her Benadryl over the weekend. He asked that I call on Monday to discuss and alternate medication. Well on Saturday Bree began to have frequent eye rolling and gazing. She would drop her head and seem unresponsive. These types of seizures are common with the activity found in the occipital lobe. On Sunday I kept a closer eye and noticed it happened quite a few times again. I'm not sure if it was the haulting of medication that brought on the seizures or the allergic reaction. I called the doctor this morning and I'm waiting for his call back. I hope the next medication we try will be more affective. I never would have thought the seizure would come back so quickly. We're also keeping our eye on Paige; her seizures started shortly after Bree's before.

Another busy week!

Tuesday was a busy day. After dropping Connor off at school I took the girls to Orlando, an hour and 45 minute drive, to have their helmets adjusted. Their Orthotist, Steve, said he was very pleased with the improvement they're already showing. We go back next week. After that I picked Connor up from school and went straight to Daytona for OT/PT. While there Paige started to scoot on her belly and Bree sat for a few seconds with little support. Their OT said that they are really benefitting from therapy and improving by leaps and bounds. I continue to do exercises with them at home the other 5 days they don't have therapy.

Wednesday we took the girls to the Conklin Center for the Blind to meet with Stacy, a vision specialist with Early Intervention. She brought us into two rooms filled with toys for every age. She had us lay the girls in a large ball pit to help them make a connection with the different muscles in the body - they loved it. Then she had the girls sit in this chair and showed them different colored, textured, and moving toys. She told us that most of the Cortical babies she sees don't respond as well as the girls had. She told us it would be work on our part but that she's hopeful they will have sight. She sent us home with a special chair and table and a box filled with toys. These toys will help with senory intergration and gross motor skills. She will continue to meet with the girls once a week. Stacy told us we may be able to get a second chair from First Step - where the girls go for OT/PT. Tomorrow they have an appt. so I will ask.

Tonight we're going to Connor's Open House at school. We're so proud of him and he's been a great big brother. I'm looking forward to seeing what he's been up to at school.

Visit their Photo album for new pictures!!!

Saying good bye to Website

I've been very busy making the girl's blog and photo gallery the best it can be. I've learned so much in the process and have decided to make this website their home page. This website offers many things that I can not do on their first website (not to mention this is free)! So as soon as I have made all my adjustments I will be closing http://www.paigeandbree.com/. You can now use www.paigeandbree.blogspot.com/ as their new website. There are many links on this page that I hope you'll visit. Please feel free to leave comments to let me know what you like or what you would like to see. Paige and Bree thank you!

They get their helmets!

Tuesday we went to Orlando to get Paige and Bree's cranial molding helmets. The helmets are to treat their plagiocephaly (flattening of the back of the head). They will have to wear the helmets 23 hours a day for the next 3 months. We go once a week for adjustments as their head grows. So far they don't seem bothered by them although Bree's seems a little low on the front; she can barely see past it. I will be adding new pictures to their photo album for everyone to see.
In other news: OT/PT is going well! They are continuing to go twice a week and we will find out tomorrow if they were approved for massage therapy. Then they will be going three times a week. They were also evaluated by a vision specialist from the Conklin Center for the Blind. We go Wednesday to begin vision services. The nice thing about it is that they will come to the house; we won't need to go to Daytona four days a week.
Overall they are doing great! We are very pleased with their progress and look forward to what they will do next.

ACTH Price Increase

An important issue has come to my attention that I would like to address. Questcor, the makers of HP Acthar (the medication Paige and Bree were on for 8 weeks to treat their seizures) has made a press release announcing the new price of their product. Prior to this, the girls medication was $2000.00 per vial - we needed 10 vials to cover their treatment. After insurance paid their portion we were left with a $5000.00 bill. Questcor has announced they will be charging $23,269.00 a vial. If, and that's a big if, our insurance would cover such an expense we would be in debt $40,000.00. Most likely our insurance would want nothing to do with such an expensive medicine and we would be left with a $240,000.00 bill. Acthar is an Orphan drug, meaning no one else has the right to produce the same medication. There are other treatments availible for IS but none of them have been approved by the FDA, which leaves us to make a choice to have a drug sent from Canada. Questcor claims it has assisstance programs but how can they expect people to pay off tens if not hundreds of thousands of dollars. It's unfair to everyone involved but most importantly to our children. My support group through Yahoo! is doing everything we can to spread the word on this topic. I have contacted WESH 2 news and the Daytona News Journal in hopes that they will cover this story and help raise awarness for Infantile Spasms and Questcor blantant attempts at profittering. I have also sent an email to our State Senator, Mr. Mel Martinez. I'm asking all of you to show your support for Paige and Bree and all their friends with Infantile Spasms and tell him about the effect this increase will have on everyone.

Here is the link to Senator Martinez's website. Just click on the link below and it will take you right to his contact form. Enter all your info and share your story. Thank you to everyone for your support.

http://martinez.senate.gov/public/index.cfm?FuseAction=ContactInformation.Con...

Here is the link to Questcor and their press release. Click on "Latest News"

http://www.questcor.com/