squirmin' wehrman

So many things to say!  It will have to be a list format so as not to ramble forever.

1. Today, 6/6/13, Charlie is 1 and 3/4 years old.  :)
2. Yesterday, Charlie said “cheese” at daycare, making it officially his first word!  Whee!  His teacher also reported him saying “crazy”, but we haven’t heard him say that yet, haha.  
3. Late this winter, Andy and I filled out an “18 month old questionnaire” for his development team.  We actually filled it out early, at about 16 months.  Those answers, combined with an observation his developmental specialist did in April, gave us a new evaluation and assessment report.  It does not provide age-level equivalents, but is on a Z-scale:

• Adaptive domain: -1.67 [class: delay, category: borderline]
• Cognitive domain: -1.53 [class: delay, category: borderline]
• Expressive communication: -2.33 [delay, moderate]
• Receptive communication: -2.67 [delay, profound]
• Fine motor skills: -1.33 [no delay, low average]
• Gross motor skills: -0.67 [no delay, average]***
• Social emotional domain: -1.20 [no delay, low average]

***I think the only thing holding him back here is he still isn’t drinking from a cup or pointing. One or both of those might be fine motor, but I can’t really think of anything gross motor wise that would be delayed.

Obviously, this reporting was done before we heard any words at all, but it shows we still have a lot of catching up to do!  So far, we are really happy with the new daycare and we think the new medicine is helping with his focus.  Here’s hoping for a summer full of exciting new developments!

For those who want the nitty-gritty of his appointment at the Cleveland Clinic this past week:

After we talked with the neurologist for about half an hour, she concluded the following:
 

- He is officially past Infantile Spasms!  HOORAY!

- Charlie needs off the Topamax because it is preventing him from sweating, which is not so much a “side effect” but an “adverse reaction”.  Secondarily, we believe [the doc does not] that it is extending his language delay.  She doesn’t think it will make a big difference, but why not try?
- His staring episodes are not to be worried about since he can move his eyes (and sometimes his head) - that apparently means they are definitely not seizures.  We knew that, since we had captured them on EEG previously, but she reconfirmed.  They’re also far less frequent and far less intense than they were a few months ago, too.
- We are moving to Lamictal.  It is a really slow titrate up, but comes with very few side effects.  The worst is apparently 1 in 300 kids get a really bad rash, so we can deal with that.  We’ll be moving off the Topamax completely in approximately 8-10 weeks.  That won’t leave much summer for sweating, but it’s something!
- Since he has not had a seizure since last July, and has not presented any other seizure types, she didn’t think a PET or MRI was necessary.  However, since his EEG in November still had extra electrical charges/impulses [spikes], she wasn’t comfortable going totally meds-free.  It’s a little conservative, but she said those spikes* are indicative that he will develop a different type of epilepsy down the line, and keeping him on meds may help keep that at bay longer. 

p.s. This is an excerpt of an email I just wrote to a friend whose daughter Miss E was diagnosed with IS earlier this year.  She is doing great, and I am so proud of her (and her mama)!  Hi, RH!