Jaylie had her follow up EEG yesterday. This EEG was the best EEG we’ve had so far. The nurses whom performed the EEG were great and we were out of there in record time, 45 minutes! After we went to the EEG appointment we headed over to the neurologist to have the neurologist take a look at the EEG and examine Jaylie to determine if the ACTH treatment is working or not. The neurologist was really pleased with Jaylie’s development on the ACTH. The Dr said she DID still see some slight abnormal brain activity, the same activity that is a contributing factor to IS (infantile spasms), and so the Dr would like to keep Jaylie at the maximum ACTH treatment for the next 10 days, then start to wean Jaylie off of the ACTH steroid. The Dr advised the weaning off process takes a couple of weeks (2-4 weeks). The Dr also advised Jaylie immune system would continue to be compromised for 4-6 weeks after we stop the ACTH (so if you’re doing the math that puts us at 6-10 weeks more of Jaylie’s immune system being compromised). The Dr advised due to the type of brain activity she is seeing, Jaylie will be at risk for seizures even after she is off the ACTH and therefore will start an anti seizure medication after we stop the ACTH. The Dr advised Jaylie may grow out of the seizure risk category but at least for the next 2 years she will need to take this anti seizure medication.
This info is a mixed bag for us. We are still processing it all.
On one hand we are completely ecstatic with the results we’ve seen! Jaylie eating food, rolling over, sitting up and developing is awesome, a direct answer to prayer!
On the other hand, Jaylie’s first birthday is less then a month away, Thanksgiving just after that, Christmas following shortly-there-after, all of which falling within the 6-10 weeks during which Jaylie immune system will be compromised meaning we CANNOT take Jaylie out to socialize with friends nor family this WHOLE holiday season. Not being able to take Jaylie out this whole holiday season and having to be hyper sensitive to cleanliness, not being around sick people and keeping Jaylie from being exposed to ‘bad stuff’ is a burden by itself. Add having to do this during Jaylie’s first birthday, her first Thanksgiving home and her first Christmas home and it becomes even more of a load to carry – in other words it just plain sucks…
The Dr acknowledged going through this process and having to care for Jaylie with a compromised immune system during this time of year does suck but it is necessary. This treatment affects the rest of Jaylie’s life and the overall quality of life Jaylie will have. A couple months of seclusion is a small price to pay to ensure Jaylie has the best quality of live possible.
A couple of things we will be praying for Jaylie for are: continued growth and development, complete healing from IS, 110% developmental recovery, complete protection while Jaylie’s immune system in compromised.
Thank you all SO much for your prayer and support!
Nathan, Kristina and baby Jaylie
I know it will be hard to miss all the firsts with a big group and families, but it will so be worth it all in the end. My older daughter that had IS, we didn't take her out of the house except for dr's appts from 6 months until she was 18 months. She only saw my parents and husband during that time and surprisingly is super social now. I also wanted to let you know that even after having her immune system compromised the way it was, she has had nothing more than a cold since then. She is almost 6 and in school and everything.
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