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Just need a little input from everyone.
My husband wants Ryan to have an endocscopy and a colonoscopy just to make sure there is no damage from the scleroderma and to see if it is systemic. His reasoning (and it does make sense), is if it has affected his organs then we want to start with IV AP and not just oral. I, on the other hand do not want to put my little boy through any more than he is already going through and to be honest part of it might be that I really do not want to know because I am scared. So, I want to make sure that I am arguing the point with Ryan's best interest and not my own.
He is currently using his new sauna every other day and he really likes it — do you think he can safely use it every day?
Sue — Ryan's Mom
Sue,
This is a very difficult question. Will you use the results to press for coverage of IV antibiotics or will the results just help you decide whether or not that is something that you will personally spring for?
I'm not sure that those two tests will rule out all of the possible places/organs that scleroderma could be hiding out in. The tests are fairly invasive. I would swing toward using them more if it woud provide more information other than for scleroderma. What you know already would be enough in my book to seriously consider the IVs.
If you haven't done this already, you should look into any possible Lyme connection through testing with Igenex. The reason I say this is because there's a good chance the Lyme itself can be treated with AP antibiotics but there are other co-infections such as Babesia that need anti-malarials. I would pursue this actually first over colonoscopies as positive blood work for mycoplasma and/or Lyme can help you get IV antibiotics covered by insurance (in the right hands, of course!).
Sue, I have had two endos and two colonoscopies (all but the last one, a colonscopy being painful when I was coming out of it, and they stuffed me full of morphine immediately which took care of the pain) with no bad memories. But I am an adult. Honestly, they aren't that bad, and I have to agree (and I am new and do not know the full story here), but the doctor's reasoning makes very good sense. And it was a relief after all four to be fully cleared of anything wrong, and the first one diagnosed my enlarged thyroid, which was then later surgically removed, so it was worth it and did what it was suppose to do.
I would insist that the doctor spend alot of time explaining the entire procedure first, so you both know what to expect. Kids can handle alot and do much better if doctors treat them with respect and explain things instead of just shoving them into a procedure with no forewarning.
The only thing that surprised me, the first time, is after they lightly sedate you and they say, okay here we go, is they pop a cork into your mouth and then you are out. I am assuming its to stop your jaw from snapping shut so they can do the procedure.
And its your call, and I wish you both the best. I don't know you or your child as I am slowly reading and learning about the members here, so I apologize in advance if you take offense or I got something wrong. Best of luck and take care ~~ Cathy
Thank you for your input. The doctor actually said he felt there was no reason to do the tests because it really did not matter if there was damage??? He said that nothing could be done even if there was! This is the pediatric gastro that said this, NOT the AP Dr.
We are not trying to prove the need for the IV's for insurance purposes because the AP Dr. does not take any insurance anyway. My husband just really wants to know how bad it is.
I don't have a tag line yet because Ryan has been diagnosed with: RA, morphea, mctd with arthralgia and/or scleroderma.
Sue
Sue,
When I first started using abx for scleroderma I didn't know I had Lyme, that actually Lyme had induced my SD and RA. Minocin did a good job of getting the ball rolling, buy with Lyme and the coinfections you need a whole host of abx in your arsenal and an experienced LLMD that knows how to use them. Before I would put him through any invasive procedures that could result in scarring, I would most definitely do the Igenex test for Lyme. That test is only 2 vials of blood. If Lyme is part of the mix, then treating the Lyme appropriately will take care of the SD. Lyme treatment is an antibiotic protocol, just using more antibiotics.
No one can give you an iron-clad guarantee, just our personal experiences.
Take care…..kim
Boy, I did get something wrong. I didn't catch that its your husband, not the doctors, wanting the procedure. Oh boy, there's a big difference, sorry.
You obviously have a big dilemma. I wish you the best in making the right decision for your child. I will be thinking of you, your husband, and Ryan. How old is he?
Take care ~~ Cathy
He just turned 14. He really is handling all of this well and I am so very proud of him. I think the tests are harder on me!
It sounds, based on the feedback of the GI doctor, that maybe your son will not have the two scopes.
My question is, do the benefits outweigh the risks? I had my first colonoscopy at roughly your son's age (I think I was 15) due to Ulcerative Colitis. I must have had a nightmare doctor, because I could feel and remember more things than I probably should have. I found the whole thing EXTREMELY unpleasant. An adult can understand the need (and I stress need) for such an exam. However, a child, maybe not so much.
Additionally, what would happen if the doctor does something like accidentally rupture his colon during the scope? This happened to a neighbor. A perfectly healthy woman went for a “routine” colonoscopy, yet was injured during the procedure. Is some mishap such as this worth risking?
I know nothing about SD, but is your son having any upper GI or lower GI distress that even warrants such exams? JMO, but these invasive procedures don't seem warranted only so that your husband can find out if there is any damage. What if there is (God forbid)? Will these tests change the course of treatment? Will the outcome, favorable or unfavorable, cause your son, your husband and you more worry?
These types of invasive exams seem awfully unwarranted especially when the pediatric GI doctor is discouraging you from proceeding with them.
Ryan has had chronic diaharrea since he was a baby. Now, we have that pretty much under control via the use of probiotics (Oh, if I had only known about the affect of this little pill a long time ago!). They did do an upper GI barium on him a few weeks ago which showed no damage and they told us that if he had Chrohn's disease it would have shown up on that.
If we did the test and it did show damage from the SD, would the protocol be any different?
Hi,
Please think very carefully before having an endoscopy and colonoscopy for your son, Ryan. Mitchell, my son, has Crohn's disease. He had 2 colonoscopy and endoscopy procedures before the age of 11. Those procedures are very invasive. His Crohn's flared more than ever after the procedures. We knew he had much damage to his intestinal tract prior to these tests. Mitchell, 15 years old, is on AP and in remission. He does have problems but his medication can be adjusted. If the pediatric gastro doctor doesn't recommend the tests, I think it is better not to do these procedures. I hope this helps you make a more informed decision.
Mary M
Hi
An endoscopy is an unpleasant thing for adults –for children far worse —if there is no reflux then then is no damage to esophagus —
richie
Hi,
There is no reflux but there is chronic diaharrea — could there be damage in his lower intestines or colon caused from this or could the chronic diaharrea have caused the SD?
Sue
We have not started — we are starting on Tuesday because the dr. wanted to get his diaharrea under control more before giving him antibiotics. I have gotten his diaharrea under control through probiotics.
He wanted to start him on tetracycline but we said we wanted minocin but I don't know what dose it will be.
Sue
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