Update after first Pediatric Epileptologist App't

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Andrew's first epileptologist app't went very well. I was amazed at how thorough and detailed they were with him. Dr. Bello is definitely committed to his job. Between the reports I showed them on his motor and language skills, the assessment they performed that day, and on what I had to share with them on his history, they agree we need to find out whats going on fully, whether or not he has ESES, and what is causing his failure to progress-whether it be epilepsy related, or caused by something else.

He is going to have:
A 24 hr EEG
An MRI
A very thorough Neuropsychological Evaluation
A look at his AEDs, and how they may be affecting development

They are going to prioritize him, and get him in for the tests very soon, since they/we have development concerns. I also now have, a direct line to his epilepsy nurse, to use as needed.

Much thanks to Jenn for recommending we see a PE as I had never even heard of one at the time of Andrew's diagnosis. You, and a few others gave me the info and confidence I needed in order to seek out proper medical care for my son quickly. From the bottom of my heart, I thank you for that. :hugs:

I'm confident we'll have our answers soon. We will also have proper diagnosis for the learning disabilities Andrew has, and that will ensure I'll be able to seek out the extra help he'll need. His school now is refusing to test for any cognitive delays until grade 3. That's not acceptable to me. PE says that's common because they don't want to pay for it, and he hears it all the time. Once we have proper diagnosis, the school has to provide proper programming and any supports he needs to learn. It's the law, and it's his right.

An interesting issue-We met with the PE on Wed. The next day, yesterday, Andrew had his standard 3 month Drs app't with his local Pedicatrician-to have his blood levels checked, followup etc. He does not support the fact that I seeked out an epilepsy specialist at all. He told me we're wasting our time with a 24 hr EEG. That it won't show anything, because Andrew is on AEDs. My instincts are that the Ped Epileptologist in a bigger city, at a Children's Hospital knows more about what Andrew needs then him, a Pediatrician, in a smaller city. Also I think that if they keep Andrew on his AEDs, and the EEG shows no major issues then great! That's what I want-That means the AEDs are doing their job, and the eleptiform activity going on is controlled. If that is the case, we will also be able to rule out ESES. Which would be awesome. If however, even though he's medicated, the EEG shows activity that is causing his delays/regressions-such as ESES-then we'll know his meds are not controlling at least his night time activity, and that something else will have to be tried, and we'll know the cause of his delays. Also, his local Ped, has never seen him long enough to perform much of any evaluation. Am I not right with this thought?

*In reading through my post, I realize that I use the pronouns "I" and "We" interchangeably. In both cases, I am referring to both myself and Andrew's dad-my husband. Just that I'm involved slightly more with his care-probably because I'm the mom-hense the use of "I" often.;)
 
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masterjen

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Thanks for the update, KatymomtoA :) And :hugs: to you in return. It takes courage to plunge in with both feet and seek the help you feel is needed rather than wait for slow course of the usual system to finally do what you already know is necessary. Congratulations for that! I'm so glad to read that things are moving ahead for Andrew.

It sounds like you have found a very thorough PE who understands the urgency of the situation. You have a winner in the PE; the local Ped . . . I'm not too sure. He should have been at least as concerned as you about the developmental problems, and arranged for the testing as you requested. You are not wrong in your thoughts about this at all.

Looking forward to another update!
 
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