How to engage in consensual decisions and parenting when it comes to...

[wytchywoman]

medical issues.
I am hoping I put this in the right spot as it could go here, it cold go in teen years, it could go in SN parenting and it could go in health and healing.
My 15 yo has a host of medical issues, we have diagnoses but I am strongly suspecting that there is a bigger picture that is being missed, namely food related allergies/intolerances/celiac disease.
A surefire way to clear all of this up is to have him undergo an endoscopy. Problem is my son has aspergers so he does not behave like your standard 15 year old. We do have behavioral issues. he is also EXTREMELY needle phobic and overall doesn't handle dr's visits well at all. Many people that are aware of what is going on have given the standard " get the endoscopy, make him do it", but seriously, how do I "make" a fifteen year old who is taller than I am do anything, especially submit to and cooperate with a medical procedure that he is terrified of. My sister gave me that reply and I countered back with " what, do I beat him in the parking lot until he submits and then drag him into the hospital?" She of course said yes.

Medically speaking, if I just start putting him on a special diet to hunt for food intoleraces, it will screw any chances of ever finding anything out by endoscopy. So if the diet doesn't work we won't be able to find out what will.
On the other hand, my mommy intuition ( and my natural healing intuition) says, "screw it, put him on a gluten free diet, that's what he needs". I also think at 15 years old he needs to start taking charge of his health. He isn't a baby anymore and he understands that not getting the endoscopy could cause repercussions that he will have to live with, and that we don't know what all of those repercussions could end up being.

I guess maybe what I am looking for is reassurance that I am not a bad mommy for not forcing this kind of medical procedure on my son . What would you do if you were in this situation.

And for those who will respond with "make him do the test", I need to hear how you would go about that. Once again, fifteen years old, strong, and taller than I am. if you would insist that your child get this test, how would go about enforcing it?

TIA.

[lolar2]

You probably have checked out all options, but just in case: are there other tests, even if they are not quite as accurate? Such as capsule endoscopy or MRI [there are some recent advances in GI MRI technology] or whatever? And would any of those be acceptable to him? With someone that age I agree, it really isn't possible to force even if you wanted to.

If you are pretty sure that celiac is the culprit, a gluten-free diet is harmless AFAIK, if he'll go for it.

[ChetMC]

Thoughts

Have you talked to your DS about this? What does he say exactly? Does he understand that finding a way to do the test could improve his quality of life? Does he understand that you may be able to find a way to do the test that he's comfortable with?

Have you talked to the doctor about doing something like conscious sedation? I think this is fairly common with procedures that are particularly traumatic... either because of the age of the child, mental state of the patient, or nature of the procedure. I had conscious sedation when I needed to have a vaginal cyst drained. My cousin had it done when she was eleven, broke her arm and needed to have the bones repositioned.

[wytchywoman]

Originally Posted by lolar2

You probably have checked out all options, but just in case: are there other tests, even if they are not quite as accurate? Such as capsule endoscopy or MRI [there are some recent advances in GI MRI technology] or whatever? And would any of those be acceptable to him? With someone that age I agree, it really isn't possible to force even if you wanted to.

If you are pretty sure that celiac is the culprit, a gluten-free diet is harmless AFAIK, if he'll go for it.

I never even thought about MRI or capsule endoscopy. Thanks!!!!!! Those are great ideas to investigate. The capsule endo I am sure would be no big deal if I am correct in that it is a camera in a pill right? An MRI would probably be OK. He is not claustrophobic or anything. I think he might have difficulty laying still but other than that I think he would be OK. I know we also have an open MRI center here in town too.
I am kind of torn about instituting the diet. If I institute the diet before the endo, and actually heal his gut, the endo won't show anything. then again if I institute the diet and heal his gut, then problem solved right? The big problem is that I have family (who have no clue what life is like with a SN kid) who insist that the endo is the way to go and I am being stupid and weak if I don't force him to do it. I have received so much input about this that my head is spinning. Medically speaking the endo is the apporpriate choice, but we all know that medically speaking is not always the appropriate choice for how we choose to raise our kids, KWIM? Thanks for your input and your ideas, I will definitely look into that.

[wytchywoman]

Originally Posted by ChetMC

Have you talked to your DS about this? What does he say exactly? Does he understand that finding a way to do the test could improve his quality of life? Does he understand that you may be able to find a way to do the test that he's comfortable with?

Have you talked to the doctor about doing something like conscious sedation? I think this is fairly common with procedures that are particularly traumatic... either because of the age of the child, mental state of the patient, or nature of the procedure. I had conscious sedation when I needed to have a vaginal cyst drained. My cousin had it done when she was eleven, broke her arm and needed to have the bones repositioned.

The endo would be sedated, that is what he is freaking out about. he cannot abide by needles. even simple bloodwork is an absolute battle, so to insert an IV or give a shot is impossible. His thoughts are the same as mine. he is torn. he doesn't want to be on a restrictive diet i he doesn't have to be, but he is terrified of the endo. we both are trying to hard to chosse between two equal evils, KWIM? I have explained to him the pros and cons of both and I think cognitively he understands, but on an emotional or psychological level I am not sure he gets the lielong ramifications of the consequences for each choice. He is a teenager, an immature one at that, so I don't know how reasonable he is being at this point.

[sapphire_chan]

I'm confused a bit. If the diet change worked he wouldn't need the endo, right? But if it didn't work you're saying that trying the diet will ruin the chances to do the endo?

[caspian's mama]

could they put him under at first with nitrous, then inject something else after that to keep him under?

otherwise, if he's willing, go the dietary route. that's ALWAYS my preference when it comes to med stuff anyway.

good luck

[greeny]

could they put him under at first with nitrous, then inject something else after that to keep him under?

I was wondering if there was a way to calm him first too, like a Valium or something.

I've had the endo, and it does use conscious sedation (though for me I was completely unconscious and don't remember a THING!), but to give the sedative you need an IV.

I'd talk to the doc about if there's something they could give him before the IV to calm him down.

[nalo]

Whether he is gluten intollerant or has actual Celiac disease doesn't matter - strict avoidance of gluten is the way to manage each. So if you put him on a GF diet and he gets better then you will have your answer - you really don't need that test to tell you he needs to be GF. However, if he goes GF for a while and there is no change then you will need to look into other foods that might be causing a problem which an endoscopy cannot show you. You can try additional elimination diets and/or allergy testing (although that does require a blood draw so you may want to do the ED first). I don't think you should force him to do any medical procedure that is terrifying to him and really has no impact on his health that you can't find out through eliminating foods, yk?

[lolar2]

Yes, the capsule endoscopy is a camera pill.

I have Crohn's disease, and I am a member of a message board that might be helpful: IBDSucks.com. If you log in and go to the "pregnancy, parenting and pediatrics" discussion, you can find the "parents with children who have IBD" subforum. It is fairly common for random parents to show up without a diagnosis ask questions about getting their kids to take GI tests and what tests to take. The regulars there are experienced hands and some of them have children with SN on top of IBD, so you might get further ideas there.

[LynnS6]

Why does he have to be awake for the endoscopy?

In addition to talking to him, I'd talk to the hospital social workers, and the doctors and see what sort of solutions they can come up with. Explain his phobia, his anxiety, his ASD (i.e. flexibility isn't the name of the game here) and ask whether they'd be willing to do sedation.

The thing about doing the diet before the endoscopy is that they do the diet first, then the docs won't be able to see what type of damage there is, and so it might be difficult to get a correct diagnosis.

[wytchywoman]

He would be sedated for the endo, it's getting him sedated that is the issue. we could try valium again but we tried it in the past with blood work with very little success. For those who have done an endo, is there really a necessity to knowing the damage that exists? I was talking about this with my mom and I asked that same question. All it would confirm is that damage to the villi existed, and there is no procedure or med that can reverse the damage. Either the diet fixes the damage or it doesn't, is this correct?
I am very grateul to all of you for weighing in. Ben has decided that he wants to try the diet first. He understands what this means for him ( I think) and as he put it, we both highly suspect that gluten is a major offender here. So we can do the diet and fix it now, or we can wait months for a procedure that he doesn't want and do the diet after the procedure, either way chances are extremely high he is going to have to weed out gluten rom his diet. I was pretty impressed with his reasoning on this actually.
So, the diet it is.
Thanks again for all of your help.

[caspian's mama]

hope it works out for him.

[kcparker]

If dietary changes don't end up helping and he does end up needing the endoscopy, would he possibly go for hypnosis-as-anaesthetic? I know that it can be used effectively to operate without pain on people who are allergic to anaesthetics, and it might be less terrifying than the needle because he could practice it beforehand. It is non-invasive and gentle, and it might be worth investigating...

[lolar2]

The advantage to the endo would be that, if it's something other than celiac that has similar symptoms, it would be a faster way to catch that and start getting it treated. If things are at the non-urgent point where you could take the slow dietary route, I think that sounds reasonable. Obviously if he gets worse you may need to re-evaluate.