View Full Version : Newly Starting Enzyme and too much Energy!!

March 9th, 2004, 04:06 PM
I have noticed that Allison has SOOOO much energy now! Especially on Treatment days. Wednesday when we get home from the clinic, she bounces off the walls! She doesn't nap after we get home even if she only slept an hour durring her infusion, and the last few weeks, she has even been hard to get to bed at night! Her sleep schedule on Wednesday leaves her OVER - tired on Thursday. Has anyone else noticed this? Just wondering!

March 9th, 2004, 11:12 PM
HEY~ :? Didn't I write that? :lol: It is still true! Alli bounces off the walls on treatment day! I know I have told Tami this ..but Everything she says after treatment on Wed. ~ she SCREAMS! Everywhere she goes ~ she RUNS! Wednesday is NOT a quiet and peaceful day at the Restemayer's house!


March 9th, 2004, 11:40 PM
:lol: I was going to take Ali's name out of it, but I just needed you to post her picture again!!! I'm going to post the picture you sent me of Noah, Ali, Connor at the Walk/Run!!! I love it!!

Love and Hugs,

Steve Holland
March 14th, 2004, 02:05 AM
We also experienced the energy bursts when the kids first started on therapy. However, over time they seem to have settled down. The thing we primarily notice on treatment day is the effect of the benadryl. By the end of the day, the kids are generally out of sorts - or more accurately, just a little cranky. However, they are back to their usual laid back selves by the next morning.


March 14th, 2004, 12:51 PM
Oh Yeah Right! That guy, Steve What's His Name, is CRAZY! But then, I'm the one who takes the kids to treatment, aren't I?
When Spencer first started the trial for ERT six years ago, the first thing I noticed was his energy level had increased. When the girls started their double blind placebo trial, from the very first infusion Laynie started bouncing off the walls and taking anywhere from an hour to three hours to get to sleep at night. That's how all three kids are on the night of treatment and Laynie has continued to have trouble falling asleep at night.

As for being "a little cranky" after their infusions, all three of our kids become Linda Blair!!! They are absolute terrors! Heads swivel! Fangs appear, and I am the true target of their lethal and scary temporary insanity! "Out of sorts"........Ha!

March 14th, 2004, 01:17 PM
:lol: Too funny... Why is it Moms notice more of the symptoms than Dads??
Dads are just too calm. It must be their job. :lol:

Laura Brodie
March 14th, 2004, 01:45 PM
Amy going off the topic -but my hubby keeps telling people-that Will sleeps alright now!! :8): As I'm up 3/4 times a night compared with 6/7 I spose he could be seen to be accurate!!! :roll: Love Laura

March 14th, 2004, 07:07 PM
I just have to say I was laughing so hard when I read this!!! :lol: My Steve and I have such different views on how Jake is doing as well!!! Too Funny! Melanie

March 16th, 2004, 12:23 PM
Amy you always make me laugh so hard!!!!

Jacob is always cranky on treatment day but Sami is fine. But she never sleeps on treatment day anymore. Jacob sleeps all day! And God help me if I wake him up :lol: The next day everything is back to normal again!!!


October 12th, 2004, 11:06 PM
well i haven't had that much improvemnt with my energy but it deffinitly is better. i no longer need a whell chair getting around the mall or sleep most of the day from lack of energy. It deffinitly is a miricle that they found this treatment. o never thought i see one in my life time for huntersyndrome.

October 16th, 2004, 09:35 AM
:) Mike,
It is so wonderful to hear of all of your gains through the trial for Hunters!!!! I am so happy for you and for the prospect of our many other hunter children!!!

Glad to hear from you, maybe you could write a brief intro in the new member section so others on the forum who may not visit this thread can Welcome you to the island!!! :D

October 16th, 2004, 10:13 AM
I can't wait for the day we can start treatment for Sam :cry: