Questions for troysmom

[PhilC]

Hi troysmom,

I noticed that your son has dermatomyositis, and has been having GI troubles lately. Has he been evaluated by an LLMD and/or been tested for Lyme Disease using a reliable test? And is he taking a good probiotic?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[troysmom]

Thank you for your questions/concerns, as for a good probiotic, I can only assume it is, probiotics have not been recommended by any of his doctors I just went to the health food store and picked some up based on the info I read here, I have PB 8 by Nutrition Now.

as for LLMD no he has not had an evaluation

[troysmom]

This past Monday a GI doc prescribed him Cyproheptadine HCL 4mg tablets, the medication is initially used as an antihistamine but a side effect of this medicine causes the stomach muscles to relax.

The antihistamine affect worked as well because every night Troy was taking benadryl to help him sleep better and itch less, my son looks like he has a never ending peeling sunburn or better yet body dandruff, he is constantly shedding flakey skin, his skin is often vulnerable and raw.

I am not sure why his stomach msucles are not relaxing on his own and in the long term I would like to understand the root of the problem but for now it is helping and temporarily that makes me happy as well as my son.

He has had an increased appetite since starting the meds, which the doctor mentioned might happed, for him it is a positive. 

In the past year he has lost 23 lbs, for someone who is not active, my son is physically limited and barely manages to burn calories through out the day, he has not grown significantly, but he has had a huge decrease in appetite since doing two treatments of pulse steriods back in December of 2008.  Which we stopped because of the severe naseau that followed for 11 days, in those 11 days he lost 9lbs alone.

He said to me tonight after asking for seconds that maybe he just wasn't eating before because his stomach was upset often, he didn't have a constant feeling of hunger, with everything else he lives with I think he just started to endure it.  He has such a high tolerance for pain, which is good because he lives with pain daily.

In the past year I had adjusted to giving my 13 yo son smaller meal portions then his 5 yo sister was eating, she had double the appetite my son has had, she would often finish what was left of my son's meal when he couldn't finish, tonight it was reversed, as usual I gave Troy a smaller portion and when his sister couldn't finish he asked if he could finish it, after he said that we both looked at each other amazed.

 

[PhilC]

[user=1358]troysmom[/user] wrote:

as for LLMD no he has not had an evaluation

You should seriously consider taking your son to see an LLMD (Lyme Literate Medical Doctor). Lyme disease is a possible cause of dermatomyositis.

See:
http://www.rbfbb.org/view_topic.php?id=2904&forum_id=1

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

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