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/

Our visit to the Neurologist

Today was our rescheduled visit with Dr. Desai, the girls neurologist. We've been waiting for a week to find out the results to the girls last EEG. He examined the girls and told us he was very pleased to see their improvement after the ACTH treatment. The girls have been laughing and cooing, they're starting to sit with help and are eating solid foods on a regular basis. The good news is the hypsarrythmias (brain damaging seizure activity) are no longer occuring. The bad news is that both Paige and Bree are showing seizure activity in the right occipital lobe (the part of the brain that controls vision). Paige's spikes were mild enough to hold off on medication. It is unknown when she will have her first epileptic seizure-it could be days, weeks, or months. So for now we will just watch her for sign of a seizure and go from there. Bree is a different story. Her spikes are more frequent and stronger. The doctor doesn't feel comfortable waiting on her so he prescribed Trileptal-an anti-seizure medication she will be on for the rest of her life. We're hoping she will have success with this first drug. For now we'll wait and see-we're scheduled to see the doctor again in two months.

The girls busy schedule !

Last week was a busy week for both the girls and mommy. Tuesday we visited with the physical therapist from First Steps. She told us that she would be getting with OT and will set up a schedule as soon as possible. We're still waiting to hear from them. Wednesday they had their fourth EEG to check for any spikes in their brain waves. Paige had to be sedated but Bree was able to sleep, so she did not receive sedation. Yesterday we were scheduled to see their neuro for the results but he called in the morning to tell us the system was down and he was unable to read the tests. So we rescheduled for Friday morning. Friday the girls went to see the cardiologist for an EKG and ECHO. Everything check out okay and he said there's no reason to continue monitoring them. Their arrythmias and thickening of heart muscle were most likely due to their meds and since they have discontinued them they've showed improvement. One health issue we can finally move past.
Yesterday we saw the Orthotist about their cranial molding helmets. They had a mold taken of their heads and the bands should be ready in about 2 weeks. We had to come up with $1000.00 down payment with four "friendly" installments of $500.00. They gave us the "Twin Discount" and knocked off $500.00 a girls; so that was really generous. We're currently trying to get our insurance to cover some of the costs. They'll wear them for three months - going from a few hours a day to wearing them 23 hours a day.
I finally made the phone call to the insurance company to get pre-approval on a genetic test that the girls Geneticist wants to run. The test will look at theCDKL5 gene of the X chromosome to check for any mutation. Mutations on this gene are diagnosed with a neurodevelopmental disease named Rett Syndrome(RTT). RTT is a devastating disease associated with mental retardation and severe neurological symptoms (infantile spasms, severe global developmental delay, and profound intellectual impairment) found mostly in girls. The test is covered and the girls will be tested next Wednesday. The blood will be sent to Baylor College of Medicine in Houston, TX. It will take about 4 weeks for the result.
I pray everyday that this test will come back negative. To think we could have two little girls who will be completely dependant on us for the rest of their lives is to hard to accept right now. Everyday is a challenge to stay optimistic when I look at them as they're laughing and cooing and wiggling and know it could all go away. For now I will be realistic to allow little room for disappointment. I have to stop now - there's good days and bad!

Paige Comes Home!

Sorry it's been so long since my last entry. We're still working on a new computer so I'm using my mom's until then. Paige came home on Friday evening. She was discharged from ICU with some concern with her blood pressure. She was given Lasix to get rid of some of the fluid retention which helped temporarily. If the bp continues to be high they will start her on Clomazapene. Her ACTH was weaned sooner as a result and will receive her last injection today. Bree still has a week left. They are doing very well and have become more responsive and vocal. Both are cooing and laughing and will turn their head towards voices. Still no eye contact or tracking but we're excited with the little improvement we've seen. Bree has been a little hoarse and her cries are barely heard sometimes. She had a wet chest x-ray on Tuesday that came back negative so her pediatrician would like her to see her pulmonologist for an endoscopy to check her vocal chords and esophogus for infection. If it's not one thing it's another. Thursday we meet with Early Intervention. The meeting will consist of the Physical Therapist, Occupational Therapist, Speech Therapist, and Developmental Phsycologist. The girls are at a two month old level as far as milestones and those therapist will work with them to get caught up with things they have yet to accomplish. Right now we're hopeful that everything will be okay. We still have many more doctors to see and each week brings something new. I promise to keep everyone as up-to-date as possible. Thank you for all your positive comments and support. It means so much to all of us!

Paige's Surgery

Sorry I haven't written in awhile. My computer has died on me so I have to use the computer at the hospital where my daughter is staying. Yesterday Paige had surgery to remove a part of her skull near her metopic suture. The suture fused prematurely and was preventing her brain from growing. The surgery went well; she needed a blood transfusion (with blood that I was able to donate) and was but on oxygen. The doctors have kept her very comfortable through the help of morphine. She has a 1 1/2 inch incision on the top of her head that was stitched with dissolvable stitches. Her face is a little swollen considering she was so puffy already from the ACTH. She will be in ICU for another day and then move to Special Care for a few days. She took a couple of ounce of formula the evening and kept it down. Her potassium level has been low so they've given her more through her IV. She has an arterial line to monitor her blood pressure with has been a little high. Overall she's doing as expected and we're hoping to have her home soon. She misses her sister and big brother. I will try to keep everyone up to date.