Unfortunately Cate had a fever today. She has been so healthy for 2.5 weeks so I am pretty disappointed. It has been a long winter of colds in our house. So far Charlie is happy and feeling well but tomorrow will tell more. When Cate is sick she is at a higher risk for seizures, is unable to do most of her program, makes 2 steps back with her progress, and is not her happy and funny self. I am hoping that she will feel better tomorrow and we can pick up where we left off.
The worst part of Cate getting sick are the seizures. So today I have been on alert watching Cate closely. She had her first seizure in March of 2013. After spending 5 days at the hospital she was diagnosed with infantile spasms and put on a very strong hormonal steroid, ACTH (adrenocorticotropic hormone). Her seizures slowed down and stopped for a few days but the medicine did not work and she was taken off 4 weeks later. ACTH is a medication that is very hard on the body and can cause a lot of problems. We have not put Cate on any other seizure medication.
When Cate had the infantile spasms her entire body would convulse inward once, would scream, then she would do it again. The episodes would last anywhere from 2 minutes to 15 minutes with about 2 seizures per minute. She would have anywhere from 1 to 10 seizure episode per day. Cate also had a constant hypsarrhythmia (brain disorganization). She had the infantile spasms daily until July 2013. When her seizures stopped and her brain started to “organize” itself again is when she started making great progress. I lost a lot of sleep worrying about my daughter during this time.
The great news is that the seizures stopped! We went to the Institutes for the Achievement of Human Potential in April of 2013 for the first time and learned a lot. During this trip we took a 5 day course only for parents. While we were in the course Cate was at home having more seizures. We left that week with a plan for Cate and our wonderful advocate at the Institutes helped us from a distance for the next 4 months. We put Cate on a liquid balance, changed her diet, started the oxygen enrichment program, and prayed. Cate did not have another seizure for 7 months, she has now had 2 more. The new seizures are a different type, they are focal seizures. She had both of them when she was sick.
Please pray that Cate will start feeling better. I will provide more details next time.