Hello! My name is Kelly Keys I have met some of you, but I don’t always keep in touch. Between my own business & my husband’s it keeps me pretty busy. My daughter is CarlieRae she is 10 & will be 11 in march. We tried acth when Carlie was 10 weeks old. At first it stopped all of the seizuresfor about three weeks. In that first three weeks life was great beside her rapid weight Gain. She gained 22lbs in those weeks,but she was more alert. Then in the fourth week all of our probelms started. The seizures came back worse than before. Her breathing became labored. Her reflux was really bad,so bad she started aspirating. Which in turn made her lungs even worse. They started giving her lassix to try & get rid of the fluid weight she gained. Which in turn gave her kidney stones really bad.To make a really long story short it was the start of hundreds of new medical probelms.I started off before the acth with a baby with only seizures. To a baby with a feeding tube,oxygen, suctioning, many medicines & aalot of hospital stays. Which down the road lead into a three year old child with a trach , ventilator 24 hours a day, four g-tube surgeries, 24 hour tube feedings due to sugar probelms, a permanant iv line to draw blood and give iv antibiotics, an ileostomy and still 15-20 seizures a day lasting 5-35 minutes in length. So for three weeks of good, We got 10 years of fighting for carlie’s life. One minute she can be fine & the next in critical condition. If i had it all to do over again I would haave taken longer to investigate ACTH. I would never suggest anyone take the chance I did with my daughter for three good weeks. I hope this helps. God Bless all.
Kelly Keys
CarlieRae10