Friday, August 22, 2014
Kaylee Update: The last month has really been a struggle. We were not able to successfully combine the AC/DC CBD oil and the felbamate because the two can interact with one another. Since kaylee was quickly getting worse we decided to go solely with the Felbamate.. Two weeks ago we were blessed with 3 seizures free days. It seemed as though we had finally reached an effective dose of felbamate. However, the seizures came back, stronger and stronger. As a result, we continue to increase this darn felbamate with no results. At this point we have almost completely maximized the Felbamate and will soon need to consider other options. The future plan seems to be the Ketogentic Diet and/or possibly adding depakote to the felbmamate. I can't believe our little girl is only 13 months old and we have exhausted almost all treatment options.
Sunday, June 15, 2014
Kaylee's Journey to CDKL5
It is hard to summarize the longest and hardest 11 months of our lives, but i'll do it as simply as possible.
Kaylee's page is a work in progress. I'm new to blogging so learning to navigate this site may take a while.
Kaylee was born on July 9th, 2013, healthy baby girl, vaginal delivery, vacuum assist and cord around her neck. But as soon as she was out, she turned pink and screamed. Everything was "normal" until about 4 or 5 weeks.
5 weeks old: crying inconsolably, slept very little.
3 months old: Still screaming almost all day, lots of throwing her head back and arching backwards, vomiting, Doctors diagnosed her as a "colicky" baby. I pushed for a GI consult, suspecting GERD/Acid reflux. Sensory issues started this month. Kaylee is very sensitive to noise. We have to keep the house almost silent when she is sleeping or napping. Even the slightest sounds startle her. It was also at this time that we realized she does not like cuddles.
4 months: diagnosed with GERD and torticollis. We started physical therapy.
5 months: Still "colicky," at this point we had tried almost every baby formula on the market except alimentum. On October 31st we started alimentum and saw a big improvement within 24 hours.
5.5 months: our first complex partial seizure. Immediate regression in development noted. We ended up staying in the hospital for four weeks. We failed multiple meds (keppra, onfi, depakote, and topmax). She was ultimately diagnosed with infantile spasms and Complex partial seizures. We started ACTH and were sent home.
8 months: No improvement on the ACTH, started Sabril. Allergy testing confirmed Corn allergy.
9 months: Our "Honeymoon" period. No seizures or spasms while on sabril. We thought our nightmare was over :(
9.5 months: Seizures returned, however they were still focal. We became surgical candidates.
10 months: PET scan showed global diffuse hypometabolic activity. MRI showed changes in the basal ganglia and brain stem. We need to rule out a metabolic disorder called leigh's syndrome. This means we are no longer surgical candidates. We stopped sabril and started felbamate. (Worst week of our lives).
11 months: the end of our searching. Kaylee was diagnosed with CDKL5. She has a complete gene deletion. We continue to use felbamate. We are on the wait list for charlottes web/MMJ and are starting synergy wellness cbd oil next week.
Kaylee's page is a work in progress. I'm new to blogging so learning to navigate this site may take a while.
Kaylee was born on July 9th, 2013, healthy baby girl, vaginal delivery, vacuum assist and cord around her neck. But as soon as she was out, she turned pink and screamed. Everything was "normal" until about 4 or 5 weeks.
5 weeks old: crying inconsolably, slept very little.
3 months old: Still screaming almost all day, lots of throwing her head back and arching backwards, vomiting, Doctors diagnosed her as a "colicky" baby. I pushed for a GI consult, suspecting GERD/Acid reflux. Sensory issues started this month. Kaylee is very sensitive to noise. We have to keep the house almost silent when she is sleeping or napping. Even the slightest sounds startle her. It was also at this time that we realized she does not like cuddles.
4 months: diagnosed with GERD and torticollis. We started physical therapy.
5 months: Still "colicky," at this point we had tried almost every baby formula on the market except alimentum. On October 31st we started alimentum and saw a big improvement within 24 hours.
5.5 months: our first complex partial seizure. Immediate regression in development noted. We ended up staying in the hospital for four weeks. We failed multiple meds (keppra, onfi, depakote, and topmax). She was ultimately diagnosed with infantile spasms and Complex partial seizures. We started ACTH and were sent home.
8 months: No improvement on the ACTH, started Sabril. Allergy testing confirmed Corn allergy.
9 months: Our "Honeymoon" period. No seizures or spasms while on sabril. We thought our nightmare was over :(
9.5 months: Seizures returned, however they were still focal. We became surgical candidates.
10 months: PET scan showed global diffuse hypometabolic activity. MRI showed changes in the basal ganglia and brain stem. We need to rule out a metabolic disorder called leigh's syndrome. This means we are no longer surgical candidates. We stopped sabril and started felbamate. (Worst week of our lives).
11 months: the end of our searching. Kaylee was diagnosed with CDKL5. She has a complete gene deletion. We continue to use felbamate. We are on the wait list for charlottes web/MMJ and are starting synergy wellness cbd oil next week.
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