Kaelyn | Biomedical Intervention of Kaelyn

So the highly recommended Dr. Adams was AWESOME. He is all about computers, so he and Buddy hit it off. He is all about proactive moms, so we hit it off. Kaelyn was in a BAD mood and wanted OUT of that room, so, well, it wasn’t so great for her and it’s ONLY about to get worse for her….

When we described the “seizure activity” to him. He said it sounded like “Benign Rolandic Epilepsy” — the most common kind among children her age. Benign meaning it will most likely go away without any treatment and I hope this is all it is. We’re supposed to…

1. EEG on Friday morning- MEANING UTTER HELL FOR US.
2. On Thursday night we keep her up 3 hours PAST bedtime, so 12 or 1am.
3. We wake her 2 hours BEFORE she wakes herself- so- 4ish.
4. Appt. at 8am, where I THINK she is supposed to SLEEP there (yeah RIGHT)… but we will give it a go and hope for the best!!

Now on to good things…

Dr. Adams said he was more than happy to work with the DAN! doctor and we are not his only Autism parents.  He was impressed we knew as much as we did, but gave us extra resources and steered us away from some we were looking at. He totally made me feel better about choosing NOT to send Kaelyn to Head-start non-verbal and still in diapers.  I had been feeling bad, because she DOES need the social aspect of it. He told us right off that all the test the DAN! ordered from that lab would NOT be covered by our insurance. He then found similar tests covered and got those ordered.  He was just so awesome.

The appointment was more about him seeing where we are at as far as Autism goes, he is sending us to a team of child psychologists as well to get her formally diagnosed.  I look forward to seeing him again. We were there for almost 2 hours with his UNDIVIDED attention.

Someone out there is watching out for us right now — and I am EVER so grateful.

To clear this up so you all don’t worry….
Kaelyn DOES have seizure activity.  She has not been diagnosed with seizures.  However- today when she first woke up, she came in bed with us and I watched her have 3 episodes back to back. That’s new… This is what they look like…
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As we are between pediatricians right now (see new one tomorrow 9am.)  I called Kae’s DAN! doctor, Dr, Jane. (AT HOME EVEN)  She told me that I should definitely mention it to Dr Adams (ped) and she will call him and request an EEG. I will be demanding one.
There is nothing that can be done about it TODAY- so everyone chill out on that. The type of activity she has will not show up on EEG AFTER the fact, they will be attempting to “catch” her while having an episode.
Seizures ARE a part of Autism. Truly- a part I was hoping we would NOT be encountering. This does not seem to be the case.  Now my hope is that it doesn’t get as bad as it can. (because it can be devastating)

If you are wondering why I am so calm- really I’m NOT all that calm, but I only allow myself brief periods of breaking down and I got that out earlier with Rachel.  This IS my life now. All day, every day, my life is about recovering Kaelyn.  I am overwhlemed. I am sad. I am confused and scared out of my MIND. But- my daughter deserves better than that from me and she will have it.
Maybe when this is all over and she can say “holy cow, Mom, CHILL OUT”- on that day, I will fall to pieces and have to be institutionalized for a vacation. (Not like THAT hasn’t happened before
So yeah- that’s where that is. I will blog tomorrow after the new Ped appt.
Wish me luck- if he is a DOUCHE, we are simply walking out. But, as he comes recommended by Dr Jane, I can’t see him being a bad addition to the team.