Rathykay, thanks for remembering about that ER issue. Yes, they did not recognize it at first, they were considering stroke and other conditions, but said it was NOT a seizure. She seized for 3 hours in the ER that time ... we found he that way so who knows how long she had been seizing. Since that episode we got a protocol from he NEW neuro ... one that was not afraid to put something into writing unlike our previous neuro. I had a meeting with our ped... then later with head of the ER. There have been a number of meetings w/ peds office and with the ER docs and nurses about Ava. They have watched a video of her seizure. Now when we go to the ER, they all know us and they all know what to do now. They are very respectful now.
In fact, when we called 911 yesterday, one of the head EMTs heard the call, came to our house before the ambulence arrived to be sure they did things right.

About the smell, told ped a while back. She called neuro ( the previous one) and asked if we should be doing any metabolic or genetic testing. At that time he said no, there is no reason to think there was anything else going on as she has the brain injury. SZ are from that. Now that we have a new neuro, a far more proactive neuro, I am hoping she will have some ideas.

We did the hair analysis test too. Several things were off. Some metals and minerals and maybe a vit or two, yes. Some, the ND was not sure what was related to the smell. She wanted to do further testing. A yinalysis thing. Fairly expensive. I surely will do this if I have too, but when I talked about the results of the hair analysis to the pedi ( who was the one that referred me to the ND) and she said she was not sure what to make of the results but warned me how easy it is to get inaccurate results due to contamination. She said even in peds offices this happens. I do think about that from time to time.

Thanks Langansmom. We do the same with Ava in terms of sleep. We do the vieo all of the time and also have a bed set up in her room so one of us could either be right next to her, or have her in bed with us. This was the case yesterday morning. She was in bed with me for a while, then when I needed my sleep, DH took over.

In terms of the monitor, Ava is SUPER restless too. I suspect there will be many false alarms and nights where she just will not be able to keep it on. But it will be good to have I think for those times I feel the seizures coming on ( that smell) and also for when she does seize, I will feel more at ease knowing what is going on and if she needs o2 I can give it. desatting is common for her. If it is common and the diastat is only going to work 50% of the time .... I think it is wise to be able to see what is going on and have o2 available. I asked pedi how long does a person have to be desatting before it is dangerous. She could not give me a time and just said they do not like to see it at all.
Does this make sense?