Background

After one gets an autism diagnosis, there is often a lot of other “things to look for” that are left out. I called this the hole after diagnosis. In that post, I mentioned the importance of getting a neurological exam. We have shared the link between autism and neurology here. There have been a couple of updates as well. We have been through an EEG (prep & results) as well.

At the previous follow up, we decided not to add a medication to treat the impulses. We did increase his sleep medication that doubled as a seizure medication to help.

You may also recall, we attempted to discontinue this sleep medication in the spring. We found a correlation between the start of that medication and Nolan’s speedy language regression and wanted to see if language increased if the medicine decreased. After waking up in the middle of the night in a full blown melt-down for hours on end, we felt this was not working and put Nolan back on the medicine.

Update

We requested an additional follow up with our neurologist at the suggestion of our pediatrician after we felt Nolan continued to regress, struggle with learning to communicate (via oral language, iPad talker, or sign language.)

When the medication wean did not increase language, we got another idea: maybe the speedy regression of language and the medication (because he stopped sleeping) were because of the impulses in the brain. Maybe the meds were necessary to treat the sleep but the cause of the sleep problems and language problems were the same-starting at the same time.

After a 2 month wait, we got in. We had no new data, but we used the previous data-Nolan has neuronal instability that is electrical impulses of approximately 3 seconds- with what we were currently seeing- lack of progress and continued regression- and decided we needed a new plan of action.

New plan

We have decided to treat the impulses as seizures. We have hopes that by treating these impulses, the brain will get a break and be able to create withstanding synapsis in the brain allowing Nolan to better learn, retain, and communicate (the portion of the brain most effected currently looks like the language center so we believe these to be connected).

We were given a list of medications to try-talking the side effects over on all of them. We decided on a medication that had the least amount of effects and was supposed to be one of the safer–but the major side effect is Steven Johnson Syndrome. We can avoid this with a slow taper, but the taper will make it take 3 months before he gets a full dose. It will then take a couple months at the full dose to know if it is making a difference.

We will watch for obvious changes in Nolan, but also consider doing another 24 hour EEG to see if the actual brain activity is changing with this medication. We will always have the goal of having him on as little as possible so if there is no difference noted, we may wean back off, but if we see progress, this is a med that can bring a lot of new things to our life.

Since starting

We started the new medicine taper mid December. At a month in, in combination with all the other medications and therapies listed in our Medicine post, and we are noticing some great things!

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My goodness, this boy has made gains this weekend. Hanging out with us instead of alone, more contact and requests to be held, more language attempts, some independent toy initiation, AND putting his pants back on. This kid works so hard at things others take for granted but I’m so so so proud of him! Happy with out med choices as they appear to be working! . . . . . . . . #meetinggoals #babystepsarestillstepsforward #growingupgloudemans #gloudemansfamily #gloudemansfamilyof5 #gloudemansthree #NolanAlex #momlife #mompost #momblogger #momsofinstagram #honestmotherhood #motherhood #ourstory #autismmom #autismblogger #ourautismstory #ourautismjourney #raisingmyzoo #stayathomezookeeper #wisconsinblogger

A post shared by Siraya – StayAtHomeZookeeper (@stayathomezookeeper) on Jan 13, 2020 at 5:54am PST