Friday Morning:
This morning he had a really bad seizure at 6:28 am. It was one of the worst I have ever seen. Normally the "kicking" part of the seizure (not counting the staring spell that precedes it) lasts about 2 minutes. This one lasted 4. The jerks were hard and they lasted longer. Normally each jerk lasts only about a second, but these were each about 5 seconds and his right hand would tremble during them. Then at the end he had probably about 10-15 "after shocks" or small jerks that were about 2 seconds apart. These aftershocks are pretty new and only follow the severe ones. Poor baby.
The resident came by around 9am and gathered my log and they said they would look at it before they rounded in about 1 1/2 hours.
The neuro team came by and said everything looked great! They were not infantile spasms and we should just go up on the meds and continue to prepare for the ketogenic diet in 2 weeks. They agreed with everything my neuro in San Diego said, Great! It was so validating to have a second opinion that agrees so well with the first.
This morning he had a really bad seizure at 6:28 am. It was one of the worst I have ever seen. Normally the "kicking" part of the seizure (not counting the staring spell that precedes it) lasts about 2 minutes. This one lasted 4. The jerks were hard and they lasted longer. Normally each jerk lasts only about a second, but these were each about 5 seconds and his right hand would tremble during them. Then at the end he had probably about 10-15 "after shocks" or small jerks that were about 2 seconds apart. These aftershocks are pretty new and only follow the severe ones. Poor baby.
The resident came by around 9am and gathered my log and they said they would look at it before they rounded in about 1 1/2 hours.
The neuro team came by and said everything looked great! They were not infantile spasms and we should just go up on the meds and continue to prepare for the ketogenic diet in 2 weeks. They agreed with everything my neuro in San Diego said, Great! It was so validating to have a second opinion that agrees so well with the first.
Friday afternoon:
We are being discharged. All is well!!! Everything they were concerned about is just fine. No hypsarrythmia, no status, no spasms, just several seizures. They are completely on board with everything our neurologist says and is planning. We start the ketogenic diet in 2-3 weeks. I feel really good about it and am so hopeful. Please pray that the diet will be effective. It is amazing just as we have come down just 1ml on one of his meds he is coming alive! He is happy, engaged, smiling, laughing. I so want this diet to work and for him to be able to come down on his seizure meds. I want my baby back!
We are being discharged. All is well!!! Everything they were concerned about is just fine. No hypsarrythmia, no status, no spasms, just several seizures. They are completely on board with everything our neurologist says and is planning. We start the ketogenic diet in 2-3 weeks. I feel really good about it and am so hopeful. Please pray that the diet will be effective. It is amazing just as we have come down just 1ml on one of his meds he is coming alive! He is happy, engaged, smiling, laughing. I so want this diet to work and for him to be able to come down on his seizure meds. I want my baby back!
Friday evening:
Just as I was discharging and leaving, the lady that opens the door to the unit asked me if I was sure I had everything and I went back to my room to check. Dr. Hussain just happened to come by my room right then and I would have missed him! He is the one that was concerned and called me up to UCLA. We talked and Parker had a seizure while we were standing there. He watched the whole thing, was really concerned and went back to study the EEG.
He just called and they are infantile spasms. These can be devastating and hard to treat, especially when not caught early. The meds he is on currently makes them worse. We are titrating down immediately. Please pray they will improve this weekend as we go off this drug. The treatments are strong, hard and urgent. Please please pray that we will be guided which to try first and which course of action we should go. I feel like we've been led this far. The good thing is, if this can be treated, the neurological development he has lost during these spasms can be caught up. Please pray we are not too late and these treatments will work.
Just as I was discharging and leaving, the lady that opens the door to the unit asked me if I was sure I had everything and I went back to my room to check. Dr. Hussain just happened to come by my room right then and I would have missed him! He is the one that was concerned and called me up to UCLA. We talked and Parker had a seizure while we were standing there. He watched the whole thing, was really concerned and went back to study the EEG.
He just called and they are infantile spasms. These can be devastating and hard to treat, especially when not caught early. The meds he is on currently makes them worse. We are titrating down immediately. Please pray they will improve this weekend as we go off this drug. The treatments are strong, hard and urgent. Please please pray that we will be guided which to try first and which course of action we should go. I feel like we've been led this far. The good thing is, if this can be treated, the neurological development he has lost during these spasms can be caught up. Please pray we are not too late and these treatments will work.
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