Update on Wyatt

[WyattJennifer]

Hi Everyone,
This is long over due but with dial up and a sick child my INTERNET moments are far and few!
First I wanted to thank everyone for their e-mails and responses a while back regarding my posted thread:" new symptoms" that my son Wyatt (2) seems to be showing.
At the time I wrote he was c/o pain in hands and feet and blinking his eyes a lot and saying they hurt. They did an eye exam and found everything to be OK directly related to his eyes
Wyatt continues to show changes every day. His Dr. put him on Nueronton. Now all he does is sleep or lay around. He still complains his hands and feet hurt,maybe it is not helping?? He almost has his toenail picked off. I think he is trying to pick away the pain?? I try to not think the worst that all these symptoms are related to the questionable re growth of his tumor. I suppose all of his ailments could be post surgery which was in Aug 07. Any insight on this would be welcomed
His nest M.R.I is this next Tuesday, We hopefully will know more then. But maybe not? I have learned from many of you that the waiting is the hardest part! I need to learn how to live with the unknown, rather than waiting for this nightmare to be over.
I will post again after Tuesday, thanks!

[ScrapHeap]

I am so sorry to hear that he is in such discomfort. Neuronton makes most of us sleepy. It use to knock me out cold w/in 40 minutes after taking it until I was on it for a couple months. Eventually the "pow" factor lessened. Though I was still a bit groggy at times.

As far as if the Neuronton is helping or not, it's hard to say. I imagine it would help at least some. I had super hyper sensitivity in both feet REALLY BAD! Neuronton did calm it down some over time. But Lyrica works much better for me and many others. Not sure if it's an option or not for Wyatt.

Maybe ask the Doc about how one might go about desensitizing the irritated areas? I remember from day one after surgery being subjected to it. As soon as they heard me scream from cover contact on the feet they started desensitizing. 3x per day... hospital socks on. Then off. After a few days reduced to 2x per day, and so on. Maybe the combination of medicine and desensitizing is an option. Just trying to think of anything I can that's worth trying or asking the Doc about that I am familiar with.

The MRI may or may not show something. Depends on the size or lack thereof I presume. Took about 3-4 years for mine to show its ugly shape in an MRI. But I don't think that is quite the norm. Hopefully w/Wyatt there is nothing to see in that regard.

Yes, Patience, patience, patience. I KNOW it is very hard.... feels like we "hurry up and wait." Learning to live w/the unknown is a struggle for most people, if not all. Being a factual, reality based kinda person myself, it has been life changing. So, please know that you are not alone on that. But it can bring a kind of inner peace that is hard to describe. I'm (still) learning to identify those things more quickly and put them in a category for mental reference. That being "I have no control over this. It is what it is and I can only try to do my very best to deal/cope w/it." Sounds easy in type. It's much harder to say it. Living it is an ongoing process of improvement.

Please keep us updated on Wyatt. I will keep positive thoughts for both of you.

[WyattJennifer]

Hi There,
Thanks for your encouraging words, and suggestions.
I plan on asking his DR. about the side effects and now about Lyrica, Do you know off hand if it is used on children?
The desensitizing sounds very interesting. this has been one of Wyatt's big issues, sounds like it is for most.
Since the weather has been warmer he has actually went bare foot in the grass, something he would never do. So we are making progress.
I can relate to a degree about the inner peace. I am going thru so much spiritually, and with my inner self. Sounds sappy but it's true! I sure do cherish every moment with my kids like I never have.
This has been hard on my other children, Son 9 daughter 6, especially the oldest.
How does your family cope? It really effects everyone around you.
Hope you are feeling well.
Jennifer/ Wyatt