An EEG and a Tooth

The past couple of weeks have been full of excitement for us! William had a couple of episodes similar to infantile spasms. So, understandably, we were very scared. The Neurologist got him for an EEG as soon as she could. We got the news yesterday that he is NOT having infantile spasms and I couldn't be more relieved!!

He is also now up to his full dose of Baclofen and I can see some good changes in him. Again, they aren't knock your socks off things but the little things are so good! He can now get his hand to his mouth and keep it there for long enough to get a good chew on his fist! He can bring a toy to his mouth (a Winkel) and chew it! I have seen no extra floppiness at all. His mood continues to be good.

And he got his first tooth!!! He is a terrible, terrible teether! I'm thinking that because he can't gnaw on things like a typical baby, he gets crankier than one, too!

This looks very interesting

Including Samuel

Update on Baclofen

We started giving William Baclofen last Thursday. This is a drug to help reduce his spasticity. We are ramping up the dosage from 2.5mg a day to 7.5mg a day over the span of three weeks. My goal in starting this treatment is to help him have more use of his hands.

It has only been a few days on a very low dose but I am being asked if I see a difference at all yet. My husband says he sees no difference. But I think I do.

He, by no means, is grabbing or playing with toys. But I think he is able to get his arms out of his super stiff extension more. He is bending ever so slightly at the elbow now in order to grab my hair when I eat his belly. (nothing like hypertonic grip on the hair!)

Another change that I didn't expect is that his mood has improved dramatically, especially 30 minutes or so after his dose. Why? I'm not sure. I'm thinking that part of his crying and crankiness was due to discomfort in his muscles. Perhaps the spasms and hypertonia are quite uncomfortable. I don't know anyone with moderate/severe hypertonia to ask about this.

Also, he is vocalizing a lot more. Is it because of his improved mood or because of decreased spasticity in his mouth??? I guess I'll never know.

So far, I am not seeing any extra floppiness in his trunk or neck. I'm hoping I don't since he has a hard time with head control as it is.

So that is what is up with the Baclofen. I am hoping that with our next dosage increase, he will gain more function of his arms... keep your fingers crossed for him!

Look at me!

It is only for 10 seconds or so and it takes a LOT of positioning by Mommy BUT...

Pajama Time