Confused in a good way - but need your thoughts

[Guest guest]

Hi,

I may have written about this before, but, please, bear with me and let me know if any of this sounds familiar.

Asher had a G-tube put in 4 weeks ago and has become a "new" kid. He is bouncy, full of energy, increased muscle strength, etc. He jumps with strength, runs (a little weakly), kicks and throws balls, goes up and down stairs more easily (doesn't alternate feet but can if asked to), rides his tricycle, does somersaults, dances around the house. He is shocking his P.T and she is ready to d/c services. She does still see that he has trouble getting off the floor on his own - but that is the only true PT work that she is doing now with him. Yes, Asher still fatigues more than most kids his age and, after being "bouncy" and full of energy, ends up, as he says, "I exhausted" and needing to take break when he tricycles home from the park (only about a block away). But, it's almost to the point that I feel a bit loony, b/c he is doing SO well. (which is great, just surprising). Asher has had so many muscle problems during his life that occurred BEFORE he started having GI problems and losing weight that I know that the muscle problems came first. And, the ped gastro thinks that the GI problems are because of smooth muscle problems in Asher's intestines. But, it makes me crazy b/c it almost looks like he's "cured" and I should go back to not worrying (except for the fact that he won't eat and has a tube sticking out his stomach).

I'm sorry. I don't think I'm making sense. And, as I sit and wait for the testing results from Shoffner, I feel confused b/c the G-tube has made him so much better, yet I know that he had muscle weakness for the first 18 months of his life when he was getting good nutrition. (he was on the same formula he's on now - Alimentum).

I guess what I'm asking is does this sound like any of your kids? Does it seem to you that it looks less like a congenital myopathy and more like a metabolic/mito disorder? I start getting afraid that Asher's progress (which I am THRILLED about - wouldn't trade it for a million dollars) must mean that I won't get any answers from Shoffner's testing that I"m waiting for - I still have that desire to find out what is going on with my son.

Confused in Florida,

Anne R

[Guest guest]

Thanks ,

I'm glad your daughter is really finding the tube beneficial. I was SO scared to make the decision to go to the tube and then the dr said we had to, and, now, I'm SO glad we did.

Ours is not so much for the medicine but for food. Oh, it's just so hard to wait for the results - I don't know - what if they tell me that they can't find anything? I know, I need to be patient and take it all one day at a time and enjoy who he is now, but, somedays, I just get so impatient and want answer.

Anne R

[Guest guest]

Thanks ,

I'm glad your daughter is really finding the tube beneficial. I was SO scared to make the decision to go to the tube and then the dr said we had to, and, now, I'm SO glad we did.

Ours is not so much for the medicine but for food. Oh, it's just so hard to wait for the results - I don't know - what if they tell me that they can't find anything? I know, I need to be patient and take it all one day at a time and enjoy who he is now, but, somedays, I just get so impatient and want answer.

Anne R

[Guest guest]

Thanks ,

I'm glad your daughter is really finding the tube beneficial. I was SO scared to make the decision to go to the tube and then the dr said we had to, and, now, I'm SO glad we did.

Ours is not so much for the medicine but for food. Oh, it's just so hard to wait for the results - I don't know - what if they tell me that they can't find anything? I know, I need to be patient and take it all one day at a time and enjoy who he is now, but, somedays, I just get so impatient and want answer.

Anne R