Treatment

Posted by Melissa | Filed under Thoughts From Mom, Treatment

I’m really amazed at how quickly and effectively the Cerezyme treatment is working. It’s not just his tummy that is getting smaller, but is disposition is better.

Kyle has always been an easy, happy baby, but since he started treatment there’s an even deeper contentment. It’s hard to explain this change. But from what adults who suffer from GD Type 1 (the non-neuronopathic type) have said, they felt awful before treatment.

Kyle isn’t able to put the way he feels into words, so you don’t ever really know how awful he feels. And the thing is, he’s been suffering from the effects of this disease since he was like 3 months old, so he doesn’t know that you can feel any different. Living with this, is all he knows, so he deals with it.

But now that he is getting treatment for the physical aspects of his disease, he’s finally feeling the way he’s supposed to feel, and it shows.

His development has been progressing too. Where he couldn’t really crawl before, he’s getting around using his knees and arms. And what I never noticed until after his treatment, was that the size of his belly was actually preventing him from keeping his knees on the floor. Now that his belly is smaller, it’s easier for him to use his knees to get going.

His appetite has increased, and I can see his face filling out. Just the other day he ate 3/4 of a 7.5 oz jar of strawberries, and then 10 minutes later he polished off an 8 oz bottle. I couldn’t believe it! And I’ve noticed that for the past couple of nights he’s been drinking 8 oz of milk, as opposed to the usual 4-6 he usually drinks at one time. This is great news!

I’m working on getting him to eat more foods. We’ve done toast with butter, and though he can pick it up and take a bite, his bites are too big…so I break off small pieces and put them in his mouth and he eats them. He’s still a stinker about what baby foods he’ll eat. He only likes strawberries and blueberries, but I can’t really blame him because most of the food taste like crap, lol!

He’s also talking more. More baby babble and plenty of “dadada”. I’ll even ask him where “dadada” is, and he’ll look around to find him, and when he does, he breaks out into the mother of all smiles. There’s a new light in his eyes that wasn’t there before. It’s like he finally feels well enough to really live.

You know that awful feeling you have with the flu, and you just don’t want to do anything but lay around and sleep…now imagine if you felt that way 24/7. That’s kinda like how all these kids with Gaucher Disease Type 2 and 3 feel without treatment; they adapt and deal with is so well because it’s all they know, so it’s hard for anyone to really know there’s anything wrong with them.

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Permalink | Comments (9) | Jun 2, 2009

9 Responses to “Treatment”

  1. Tina Says:
    June 2nd, 2009 at 9:59 am

    Finally we are getting some good news and the results that we have all been praying for. Before long he is going to be running around getting into as much trouble as his brother and sister, eating more snackie pies than you can keep in the cupbaord. Keep thinking positive Lis, it seems that Kyle is going to be the one to break this nasty circle we have all been stuck in. Kyle’s got a big angel watching over him, keeping him safe through all this. :-)

  2. Tishia Lee Says:
    June 3rd, 2009 at 9:31 am

    It’s so great to read some good news. I’m glad to hear that you are noticing changes in him, changes that are good!

    Tishia Lee’s last blog post..Another Entry for a Contest

  3. Michell McKellar Says:
    June 3rd, 2009 at 2:12 pm

    It is so good to hear that there is something going right. Getting around, eating more, this is great! :) Keep up the good work Kyle!! Always in my heart.

  4. Mary Pruitt Says:
    June 4th, 2009 at 10:55 pm

    Hey, I am an internet friend of Carrie’s and I completely agree…it is ridiculous when you think of the lack of information and research out there. My son has Wolman’s, another rare storage disease. There are 3 survivors of this disease. Ever. Almost all of the children die within a few months of birth and alot of them aren’t diagnosed until they pass away. We have GOT to do something to raise awareness for these storage diseases! I know they are rare but just in the past few days, I have come in contact with a few families with Gaucher’s. Surely if enough people get together, we will be loud enough to be heard! There is nobody to talk to about Wolman’s, so I am finding comfort and information where I can. There is literally one useful article on Wolman’s disease. And no research is being done that I know of. Since we have no other families to talk to, we really don’t have an idea of what we are facing in the future. One of the families is in Japan and there are TWO in the U.S. Talk about finding a needle in a haystack. Sorry to ramble, I am just sharing my frustration with the lack of help out there for us. Hoping the best for your son, Mary gagepruitt.blogspot.com

    Mary Pruitt’s last blog post..frustrated

  5. Cari Buziak Says:
    June 6th, 2009 at 10:43 am

    That’s so wonderful that he’s feeling better after the treatments!! It must help his comfort level a lot… poor guy!

    Good for you for shaking your fist at this disease… punch it in the nose! :-)

  6. Kelly McCausey Says:
    June 6th, 2009 at 1:27 pm

    Hurray for good news! I’m so glad he’s feeling better. Continuing to pray :)

  7. Bonnie Says:
    June 9th, 2009 at 11:10 am

    Lis, that is wonderful news. And yes before you know it he will be running around getting into everything, but I am sure you will be fine with that. LOL And Tina is right, there is a big angel up there watchin over ALL of you.

    Take care and still praying for you. :)

  8. nabilah Says:
    January 17th, 2010 at 6:10 am

    im so glad you have some good news. i have a question. does this treatment work for gaucher’s disease type 2 too?

  9. Melissa Ingold Says:
    January 17th, 2010 at 11:21 am

    Hi Nabilah,

    For some reason I am just getting notification of your comment now. Yes, this treatment works for Type 2 GD as well. It will help with all the physical aspects of the disease, not the neuronological, but it will bring great comfort to someone suffering from it.

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