[jjbeck]

Ok ... the past couple of days Ava has had that metallic smell to her again. I have been sleeping in her room the past couple of nights expecting an episode.
Abut 3:30 this morning I just needed to get some sleep so DH took over. When he watches her at night, he is able to go to sleep and wake if he hears anything. I tend to need to stay awake ... or at least my brain thinks it does.

7:30 I woke up and went to check on DH and Ava. He had Ava right next to her.
( we now have a bed set up in her room) Said she was fine. Her back was to him, I peeked over to be sure she was ok and sure enough she was seizing. THIS TIME, we were not giving any obvious clues such as her vomiting or trying to clear her throat. YIKES! How horrible is it she can be right in DH's arms and he not know she is seizing!
This one looked quite yucky! ( I know they all do)
She was trying to talk but couldn't. She had no motor function at times. So scary. When she looks like this, it is so hard for me not to wonder if she is having another stroke.
Gave the diastat. Thought it was helping then she slipped back into it. Called 911 and gave second dose. Again, seemed to be coming out of it. Lot more responsive by the time EMTs arrived.
Got to the ER and the doc thought she was probably PI .... I HATE HEARING THOSE WORDS!
I knew in my gut it was not over. A minute or so after the doctor left she slipped back into. Could not respond by the time he came back. They did the usual. IV Ativan labs etc. THIS TIME, Ativan was not working. Gave a second dose of ativan
, still not working. Now I see these guys are getting nervous.
Gave phosfentynoin. This is the first time we have gotten to that point. Our protocol only goes to give the phos if diastat and ativan fail. Guess we will have to revise our protocol.
She came out of it after the phos. However, pupils are still dialated. They are not sure if that signifies anything or not. her pupils typically dialate w/ seizures.
We are home now. If she starts seizing again today, they are going to life flight her to Boston.

So our plan for night time monitoring needs adjusting. Simply watching a video monitor or even having her in bed with us failed.
Time for the pulse ox and HR monitors as well as having some O2 at home. Neuro does not like this idea, but pedi said she would help us with it.
Hopefully our neuro will not hold it against us. It absolutly needs to be done. This is crazy!

Hate this so much. It is exhausting.

[RathyKay]

(((Hugs))) That doesn't sound good. And definitely scary, with seizing in your hubby's arms and not realizing it!

I'm trying to remember... did you have problems in the ER before OBT crashed? With them not recognizing she was still seizing? At least this time they didn't pat you on the head and try to send you home without actually doing something. I'm so sorry you made it to the end of your protocol.

What about the metallic smell? Have you done any investigation into that? Asking her pediatrician? I know Tom's breath starts smelling different when he has a cold, or sinus infection, or his yeast is on the rise. But, never metallic. I sent a hair sample (among other tests) for heavy metal toxicity testing, done through our DAN! doctor. That's the only thing that pops in my head. Is she excreting too many metals at certain times, affecting her chemical/vitamin/mineral balance? (And maybe a mineral supplement at those times would balance it out?) No, I don't know what I'm talking about. Just trying to throw out some ideas. It just sounds like if you could figure out WHY she has a metallic smell on occassion, that you could hopefully prevent it, thereby preventing seizures?

Prayers you have an uneventful night... and a good night's sleep for everyone. Definitely look into the monitoring system. Is there any reason you'd have to tell your neuro in the first place?
(((Hugs)))

[langansmom]

(((((((((((hugs)))))))))))

My heart was in my throat as I read your post. I can only imagine your terror. We know the horrors of status but have never had a situation where we could be so close to Langan and not know she was seizing. How horrible.

We, too, battle with how to make sure we don't miss anything in the night, as Langan's seizures are almost always at night. We have the video monitor and I often have her in bed with me or am on the floor next to her bed. The thought that doing that wouldn't be enough is absolutely terrifying.

I hope you are able to find a solution soon. We had a pulse/heartrate monitor for a while (pd for by insurance, fyi) but Langan is such an active sleeper that it kept getting dislodged and the alarm kept going off in the night. Now I wonder if maybe we need to just live with that for the sake of safety.

Ugh. I hate seizures!

(((hugs)))

[jjbeck]

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?

[lilac7700]

prayers to little Ava.