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]

Wow you just described Grace in the few months after her g tube. Before her tube she was deteriorating very quickly. She would refuse to eat and her energy level was way down. Since the tube we have an active almost two year old. I actually find myself getting frustrated because she is getting into everything. Although she is not fed through the tube even her appetite went up, and she has gained 7 pounds since Dec. Dr. Cohen believes it is because she is getting her medications properly now and in the right doses, and we agree. This is the reason she had her tube placed, she was refusing to take her medications or eat. As far as the energy is concerned, she has her good days and bad. Some days she can go all day, and then there are days like today. Today she will play for a while and then need to sit down and have a drink, relax, for about 20 min. We seem to have more good than bad anymore so we are happy. It all depends on the day. We look forward to the good days but we deal with the bad ones. Overall I am ecstatic about her progress since the tube. Best of luck with you and Asher.

[Guest guest]

Wow you just described Grace in the few months after her g tube. Before her tube she was deteriorating very quickly. She would refuse to eat and her energy level was way down. Since the tube we have an active almost two year old. I actually find myself getting frustrated because she is getting into everything. Although she is not fed through the tube even her appetite went up, and she has gained 7 pounds since Dec. Dr. Cohen believes it is because she is getting her medications properly now and in the right doses, and we agree. This is the reason she had her tube placed, she was refusing to take her medications or eat. As far as the energy is concerned, she has her good days and bad. Some days she can go all day, and then there are days like today. Today she will play for a while and then need to sit down and have a drink, relax, for about 20 min. We seem to have more good than bad anymore so we are happy. It all depends on the day. We look forward to the good days but we deal with the bad ones. Overall I am ecstatic about her progress since the tube. Best of luck with you and Asher.

[Guest guest]

Wow you just described Grace in the few months after her g tube. Before her tube she was deteriorating very quickly. She would refuse to eat and her energy level was way down. Since the tube we have an active almost two year old. I actually find myself getting frustrated because she is getting into everything. Although she is not fed through the tube even her appetite went up, and she has gained 7 pounds since Dec. Dr. Cohen believes it is because she is getting her medications properly now and in the right doses, and we agree. This is the reason she had her tube placed, she was refusing to take her medications or eat. As far as the energy is concerned, she has her good days and bad. Some days she can go all day, and then there are days like today. Today she will play for a while and then need to sit down and have a drink, relax, for about 20 min. We seem to have more good than bad anymore so we are happy. It all depends on the day. We look forward to the good days but we deal with the bad ones. Overall I am ecstatic about her progress since the tube. Best of luck with you and Asher.