Tuesday, April 11, 2006


I'm worried tonight and I'm not sure if it something or nothing...but I have quickly learned that in CHARGEland, you always have to question EVERYTHING because this syndrome is so far reaching.

In the past few days, Max started "nodding/twitching" his head a bit...hard to explain...kind of like when someone does the casual nod to say hello (but less pronounced than that). It's just an ever so slight movement but it is noticeable. He doesn't do it all the time...but when he does, it is a repeated movement.

Today someone noticed it when I was babbling with Maxwell and commented "how sweet, he is nodding at you!" Then it was even funnier because the man's wife then commented "oh wow, he just winked at me!" Little did they realize that the "nod" was worrying me that something was wrong neurologically or with his muscles AND his "wink" was actually due to his facial palsy! Too funny! :) Then later, another person said "wow look at your baby...he sure never misses a meal..look how big and healthy he is!!!" I wanted to laugh and reply "you're right, he never does miss a meal...he eats 15 hours a day!" But I didn't...but it was SOOO wonderful to have people admire my baby, not because of how much progress he has made...but solely because he is an adorable baby! (See this is one of the first times he has been out and about without his O2 cannula on. Usually they comment on that first.)

But ANYWAY, I digress...back to my original concern. I don't know what to make of this "nodding/twitching." I have put the word out to other CHARGE families and tomorrow I meet with our PCP. I have a feeling if it continues we will be scheduling something with neurology. CHARGE kiddos often have seizures and/or related issues. And I am trying to not freak out yet but it makes me think this could be related to that somehow...but HOPEFULLY I am blowing this all out of proportion and this will go away.


Steph said...

Hoping and praying that the "nod" is nothing to be concerned about...keep us posted.


Magpie said...

could be Tourettes or just transient Tics. My oldest son (11) developed it, noticeably anyway, by age 7.
Your son is incredibly precious and I check in her often to see how Max is doing.
God bless him and you and your husband.

elle said...

in chargeland we need to be parraniod have you seen my blog amy i watn max to see it