I've read that there is a decline in the children's progression due to the infantile spasms. The therapists and I had been noticing this over the past couple weeks with Charlie. He had shown glimpses of better head control, purposeful movements and tolerance for therapy but all of this had either plateaued or declined recently.
The treatment the Doctor recommended was ACTH which is a hormone that increases the body's production of steroids. It usually stops the infantile spasms if the child is an infant but has a lesser chance the older they get. Dr. Filloux and I decided that we would try this more aggressive therapy despite the side-effects. If it doesn't work then we will try different seizure meds.
Things Dr. Filloux told me about ACTH
* It is an injection that I will need to give him daily for at least 6 weeks (probably more like 8-10) into a muscle.
* It costs $29,000 for a 30 day supply. Where do I sign up to sell hormones for that much profit? I'm so grateful we have insurance!
* We will know in about 2 weeks if it works or not. It is usually all or nothing. If it isn't working we will will try an increased dose once and if it still doesn't work we will taper off and try something else. If it does work then after the treatment the seizures shouldn't return.
* It has similar side-effect to steroids- excessive weight gain, water retention, “moon face” characteristics, Irritability, Anger. Sound fun yet?
* It can affect the kidneys and liver and mess with his blood sugars so he will be monitored every 2 weeks.
* It can increase his blood pressure so he will need to have to monitor it nightly.
* It decreases his immune system- This is what I am most nervous about because we are just about to start cold season. I was just starting to feel comfortable taking both boys with me everywhere. I guess we are back to staying home and limiting sick visitors.
Britt trying out Char's new sensory therapy (Thanks Suz)
Highlights from appointment with Dr. Such Neibar (rehab dr)
* Results from his hip X-ray show that he has mild hip dysplasia (they come out of socket) so she wants us to put him in his stander more often (3 times a day for up to 1 hr each) to erode the joints.
* Tight ankles and hands- keep stretching them every day and go back to using the leg and arm braces.
* Neck tortacollis- he still can move his head to the left but the fact that he prefers to have it to the right is making his right neck muscles stronger and shorter. We will start using a neck brace to keep his head mid-line and possibly botox his neck muscles in the future.
GOOD THIINGS I'VE NOTICED:
A month ago Charlie was discharged from speech therapy because she thought we could do everything she was doing at home. He seems to enjoy baby food. On a good day he can swallow ½ jar of sweet potatoes. We try to practice this everyday. He also likes to suck on pretzel sticks.
Improved vision: He is doing so great with his vision. He is now following moving objects more and more. There are no indications that he recognizes anything that he sees yet. Eyes still prefer to be to the right but now he will occasionally move them to the left. The right eye also still drifts to the right.