ACTH

On Monday last week we contacted the Riley Neurology Department to inform them that Topamax was not working. On Tuesday we were told ACTH was our next move. So the nurse began making the arrangements through insurance and with a pharmacy that carries ACTH. I then took Nicolas to Parkview North so that he could have a Chest x-ray, blood and urine test. In order for Nicolas to take ACTH we had to prove he was a good candidate (i.e. not a diabetic, does not have high blood pressure, does not have an infection). Then yesterday I had to wait for UPS to deliver the medicine...apparently insurance wants you to sign for $84,000... This will last us three weeks. We will know if it works within 1-2 weeks. ACTH is a medicine given by injection (shot) in the child's leg. It is given at home once a day. If it does work, Nicolas will be on it for 9-10 weeks. Nicolas will be taking a high dose and along with that comes the following side effects...

• Increased chance for infection
• Thrush of mouth
• Diaper rash
• Increased appetite
• Water retention ("chubby cheeks"...as if he needed help in this department)
• Stomach irritation (He is back on Zantac for this reason)
• Increased blood pressure
• Fussy or irritable
• Rash on face
• Electrolyte imbalance

Because of the side effects, once a week Nicolas will have lab work. The 1st week is at Riley, 2nd and 3rd week can be done in Fort Wayne, and then the 4th week (if ACTH is working) Nicolas will have another eeg along with the lab work at Riley. As of today Jake, Nicolas, and I checked into Riley to be taught how to give the shot. Nicolas had been really good about getting his immunizations so I thought...piece of cake, right!?! Well I just gave him his first dose. He did great...I cried. No turning back now! We pray for his health and healing.

Lord, hear our prayers...
Felisa