I apologize I have not been able to write an update until now. Things have been very busy both due to the holidays, Jaylie’s first birthday and the Infantile Spasms treatment.
Despite Dr’s orders, we HAD to have a very small celebration for Jaylie’s first birthday. Jaylie’s party was very small but perfect. Here are a couple pictures:
Thank you everyone whom contributed to Jaylie’s first birthday! She had a fantastic time. We will never forget it! Thank you SO much!
We have stopped the ACTH treatment. It has been a bitter sweet departure from ACTH. Though the ACTH suppressed Jaylie’s immune system, caused extremely high blood pressure and major swelling, ACTH really jump started Jaylie neurologically. On ACTH Jaylie’s seizures stopped, started eating orally, sitting up, holding a bottle and feeding herself, rolling over, stopped spitting up and overall a lot more alert.
Since tapering off the ACTH Jaylie has digressed a bit. Jaylie has had a couple of seizures, though not as intense as before and not on a daily bases. Jaylie has stopped eating orally parting because we started giving her some medication orally she really does not like and partly because we have stopped the ACTH. Jaylie has also started spitting up, though not at the same level as before the ACTH she has started spitting up again. Though Jaylie has digressed a bit, she is still doing well and progressing forward.
One of the positive things that also came out of the ACTH use was we were able to transition Jaylie of the nightly feeding pump to just feeding her throughout the day, yay!
Due to the ACTH not completely stopping the seizures and not resolving the abnormally EEG patters the neurologist has started another treatment Vigabatrin (Sabril).
Vigabatrin does not have the same side-effects ACTH does and can be used as a long term treatment unlike ACTH. Long term use of Vigabatrin can cause permanent loss of peripheral vision though this vision side-effect does not happen within all patients it is a possible side-effect. The Dr will know if the Vigabatrin is effective within the first 2 weeks of use. We are currently on day 3 of the Vigabatrin treatment.
These last couple of weeks have been bittersweet - bitter with Jaylie’s regression, sweet with making it to Jaylie’s first birthday and first Thanksgiving.
We are looking forward to the next couple of weeks. Looking forward to having Jaylie’s first Christmas as home and looking forward to seeing positive results with the continuation of Jaylie’s Infantile Spasm treatment.
Please keep Jaylie in your prayers. We are praying Jaylie’s growth and development will continue to move forward, that the Infantile Spasms treatment is effected in stopping these seizures and normalizing Jaylie’s neurological patterns.
Thank you SO much for all your prayer and support! We could not do this without your prayer and support!
Nathan, Kristina and Jaylie