Friday, 18 October 2013

The Seizure Verdict

It’s been a really long week.  Nothing particularly stressful or negative, but I am feeling a bit weary these days again.  This always seems to happen about 6 weeks after a visit to the developmental pediatrician. We come away with a “new” plan and I get busy organizing and implementing, and spend the next few weeks feeling extremely hopeful.  This time around the interventions with Nate have been pretty positive, the mitochondrial cocktail really does seem to be having some impact.  His speech, while still very inconsistent, is definitely covering a wider vocabulary.  Speech development in autism is, well, it’s just freaking weird.  No offense to my gorgeous son.  I think it feels this way to me because we don’t always know what he’s thinking, or what he’s aware of, or what he actually comprehends.  So when I was getting him out of his jammies this morning and I said “hands up” and he looked at me and repeated “hands up” my jaw dropped.  He won’t say hi or bye, but he will say hands up, and he said his OT, Amanda’s name the other day.  The words that come out are not the basic building blocks that one would expect with developing speech.  Nate has said full sentences, and then nothing for weeks.  The frequency of these bursts of speech has increased on the cocktail without question, and he is not getting the full dose.  The powder the compounding pharmacy supplied keeps solidifying and I find myself chipping chunks off and trying to dissolve them in his juice.  Not an accurate measurement to say the least and it’s not dissolving well so there is always quite a bit of residual in the cup.  I spoke with the pharmacist this week and he offered to send a slightly different formulation.  I agreed, but also told him that if this one does the same thing, I want to change to a liquid- the copay will be twice as expensive, but I will pay that to know that he is actually getting the full dose. 

Ok, getting back to the point.  After the interventions have begun, there is always a bit of a lull- and I feel like I’m not doing enough, and it stresses me out.  It has not helped that we did Nate’s sleep study over 2 weeks ago, along with the EEG and I have had NO results, thank you very much government shutdown.  Now there’s one impact of the shutdown that not many people may have considered- congress let me worry for an extra two weeks about my son’s health status.  I know that we are lucky and many are experiencing huge hardships due to the idiocy in Washington, but to be frank, worry is worry. 

I would like to share a picture with you:

This is the picture of a gorgeous little boy with autism.  A little boy who as of now is seizure free.  The government reopened when, Thursday morning?  The neurologist, who I admire a bit more each day, called me at about 9:45 on Thursday to let me know that Nate’s EEG did not show any blatant seizure activity.  She had not had the opportunity to fully analyze the sleep study.  Remember, we finished it on Monday morning and the government shutdown went into effect that day at midnight.  She could tell me that she did not see any major REM disturbances in the one night of good sleep that Nate had.  She explained that she had been in touch with the research board, and that in order for them to fully analyze and qualify Nate for the double blind portion of the study, we would need to repeat the whole 48 hour ordeal.  She further stated that in light of how the first night looked that she didn’t think it was necessary.  He doesn’t look like a good candidate for that portion of the study.

What does this mean for Nate?  In my eyes, it means that we got really good news intervention-wise.  She offered us participation in the third arm of the study which is the open label trial of the medication.  Basically, there is no chance, if he participates in this portion, that he will receive placebo.  Everyone in this area receives the medication.  If you remember, my biggest concern going into this was that we would go through all of this and eventually find out that he received placebo.  That would suck.  Well, that’s not going to happen.  In about a week, he will start the medication.  He will be on it for 6 months, and then his sleep, and developmental assessments will be monitored for a year after this for any improvements.  This is what we wanted. 

The medication is Aricept- here is the study…

How do I feel about this?  I think my husband put it best.  I called him at work to let him know about the EEG, and we were both happy to know that Nate is not having seizures- and in some ways disappointed.  Not that we want him to have seizures, but we want to find something that we can help him with.  We want to have a tangible something to work on.  We have more answers than we did when we started- which was the point.  Two more pieces of the puzzle that is Nathan are now in place- no seizures, no REM disturbances.  This is positive.  But we know that he has issues- despite the intensive therapies he receives, the progress, compared to that of a neurotypical child (which I know is not a fair comparison, but bear with me), has been slow at best.  I think we both feel that at least if we had something to focus on, we could feel like we are making progress, like we are helping him.  The truth is we are making progress- we are narrowing down the factors that are contributing to his delays.  No, it doesn’t give us something in particular to work on, but eliminates some scary possibilities, and for that I am grateful.  And we will be able to try this medication under the supervision of one of the best physicians I have encountered on this journey.  That is a blessing.  She will be watching over my Nathan- he is a lucky boy. 

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