Monday, March 24, 2008

You're Going to Need a Bigger Boat

It has been a crazy few weeks. I came home a little early from work the other night, about 6:00 p.m. DH, the in-home respite worker and I were trying to decide on dinner. For some reason, I looked over at DS #2, who was at his usual seat, on the bar stool, watching videos on the laptop. Normally, (or perhaps I should say “usually”) he replays a small segment over and over and over…. For whatever reason, I looked at him and noticed that he was drooling onto the keyboard. He was slightly hunched over it, but that is not particularly unusual since he is legally blind and often puts his face right up against the screen. The drool was unusual.

We had just been looking at pictures of when he was 2 and 3 years old. He still drooled then and almost always wore a bib. DH and I had congratulated ourselves on getting his oral motor skills strong enough that he no longer drooled, or if he did it was very minor and when he was excited. So, I was a bit chagrined to see the drool stringing from his mouth to the keyboard. I grabbed a towel, wiped his mouth and asked him why he was drooling. He didn’t pull away or object when I wiped his mouth, so I grabbed his chin and looked him in the eye, to repeat the question. Then, I said, “OMG, he’s seizing!” DS #2 was quite ashen, his carotid was just bulging and his stare was vacant. When we couldn’t bring him around in a minute or so, we laid him on the floor and began to document the seizure. Since, a few months ago, the school claimed that DS #4 was seizing, we knew the questions that would be asked. After 10 minutes, I called the doctor.

Of course, I got the new doctor. I had to go into my brief litany of 25 weeker, profoundly autistic, severely mentally impaired, blah, blah, blah. She made me call 911. So, eventually I had a sheriff deputy and two EMS units at my house. By then, it had been 35 minutes and he was coming out of it. But, we had to go to the ER, which I dreaded. After reading so many ER blogs, it seems that most ER workers despise the people whom they serve. Especially those who arrive by ambulance when there is no trauma. I didn’t want to go but I had to per the pediatrician. So, I rode shotgun.

You might think that the ER doctor would appreciate the fact that we had 3 adults there and had documented the event but noooo. I used the word “Nystagmus.” So, then the Munchausen’s by proxy questions started. Like I enjoy coming to the ER. I’ll have you know that this is only the second time that I have been to the ER with a child in the past 12 years. I know it’s unusual to have 4 kids with autism but professionals have diagnosed all of them. The kids are rarely sick but when they do it, they do it big. Last time we saw a specialist, I got chastised because there was “nothing” in the file. Just 4 well child check ups and a pre-op physical before dental work done under anesthesia for my then 4 year old DS #4.

I do learn about my children’s illnesses so I know what’s going on. I guess you can’t win for losing. If you learn about your children’s issues so you can have an intelligent conversation about them, you get accused of Munchausen’s. If you don’t learn, you get accused of neglect. Oh, and I know the term "Nystagmus" because it’s part of sobriety tests performed by the police. But, I didn’t even want to go there. I prefer the ER to NOT know that I am an attorney by trade.

We had labs drawn, had a CAT scan since he wouldn’t stop vomiting, and then went home. Of course, the ER doc called the pediatric neurologist during our ER visit and the neuro told me to follow up with his office. When I called to follow up, the office wouldn’t give me the time of day. They said it was impossible that the neuro told me to follow up directly. And, there is no other pediatric neurologist in the area. The pediatrician got involved and took care of it. See, this is where I get annoyed again. I’m looking for cooperation people, not obstructionism.

So, the EEG is set for this week. That will be scads of fun! An almost non-verbal 12 year old, who hates to have his head touched, having an EEG. At least I’ve been through it in the last 6 months. I’ll tell you though; after seeing this seizure, there is no way that my younger son is having seizures. No one would miss this. This would scare the pants off you. It did us and we KNEW it was a seizure.

On the up side, I had a great conversation with one of the nurses at his school. There are 4 RNs at the school and probably over ½ the kids there have seized at one time or another. She’s got it set up so that if he seizes at school, they will call a stat. All 4 nurses will come down and document the seizure for us. If, in their opinion, 911 needs to be called, they will call. Otherwise, they will document the seizure and let me know. They also have oxygen available if needed. If he begins to seize regularly and needs oxygen regularly, then they will have us get a prescription. She also told me that many of the students seized once or twice during puberty and haven’t seized since. For some of those kids, it’s been 10 years. So, we feel that this may be a one-time deal. No meds at the current time.

Just when you thought it was safe to get back into the water…..

4 Comments:

At March 25, 2008 at 1:10 PM , Blogger The Preemie Experiment said...

Oh my it has been chaotic (more than usual) at your house!!

How dare you use a medical term to a doc! Don't you know better? (yes my words are dripping with sarcasm-lol)

I'll be crossing my fingers that the EEG set up goes smoothly and DS will cooperate. I would not leave there without a script for rescue meds. One for the school and one for home. This way you can avoid another ER visit!

Paige's seizures never were as severe as your DS's and we had to have rescue meds with us at ALL times!

Hugs,

Stacy

 
At March 27, 2008 at 10:28 PM , Blogger Cornelia Read said...

I'm ready to take my baseball bat to that ER as soon as I'm done with bashing windshields at the CDC...

The last time my D had an EEG, they put a cap on her head that made her look like the secret love-child of an Australian lifeguard and a heavily wired electronic alien life form. She got away from us for a second, grabbed a rolling office chair, jumped into it, and used one foot to push herself at VERY high speeds down the neurology hallway at our local Kaiser, with about a dozen grownups sprinting along behind.

All fun and games until she got to the stairs, but I grabbed her RIGHT before she made it that far.

I hope your experience is far, far better.

xxx Cornelia

 
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