difficult child 1 may be trying Clonidine for IBS of all things...

H

HaoZi

Guest
First I've heard of that use for it. It's a blood pressure medication with off-label uses for insomnia and aggression. I'm seeing a couple other uses for it listed, but IBS isn't one of them.
 

smallworld

Moderator
We've used Clonidine for sleep and tics. It worked.

Stupid question, but I don't see it listed in his medications: Has he ever tried Amitriptyline or Nortriptyline for IBS?

by the way, your difficult child 1 is on a boatload of medications. In your shoes, I'd want to wean him off of some. They could be making his physical sx worse.
 

BusynMember

Well-Known Member
I 100% agree about this kid on too many medications. Some can cause stomach issues too. I have a rule: Two medications max unless dire emergency. He's on tons of ADHD medications, a mood stabilizer, two antidepressants (Remeron and Streterra) etc. I'd question the doctor's competency. Does he try to medicate away every single symptom? in my opinion you can't and it can harm a child's body. And, no, never heard of that medication for IBS.
 

gcvmom

Here we go again!
My bad -- I need to update my sig. He's off the Strattera and doing much better with his mood. And he's had the IBS problems for a very long time. Much longer than he's been on the Tegretol or the Remeron. As far as I know, nothing he is currently taking can explain his IBS symptoms. Three different doctors in different areas of expertise (GI, GP and psychiatrist) have all reviewed his medications.

Yes, he's been on amitriptyline (Elavil) and it was at a time when he was only on a stimulant, the Imuran and the allergy medications prn. It made him more aggressive and violent.

More specifically, here's a quote that underscores the idea for using Clonidine (Tenex is also in this class but the psychiatrist felt it had a greater risk for irritability for my difficult child): "agonists can improve intestinal functions and induce a satisfactory relief of symptoms in patients with irritable bowel syndrome."

I appreciate the concern about "too many medications".

The Focalin, as you may know, is short acting and out of his system pretty quickly. He takes that because the Daytrana patch takes close to 2 hours some days to start working for him and he can be pretty horrible unmedicated, although that is improving, and who knows, we may be able to skip the Focalin at some point. We've actually reduced his Daytrana dose in the past two weeks, and he's doing o.k. at the new level.

The Remeron and Tegretol were introduced this year because of all the mood-related problems he's had. And he is doing a lot better right now. He's not violent. He's not angry all the time. He's more cooperative. So something is working.

The Imuran is non-negotiable because it's the one thing that put his Crohn's in remission.

The Allegra and Advair are most PRN at this point.

The melatonin has helped his gut pain, belive it or not.

I've had people tell my difficult child 2 is on too many medications, too, and at doses that are too high. But you know what? They are working.

We do finally have a therapist appointment for Saturday morning. difficult child 1's IBS has been pretty quiet this week so far. Still making more trips to the toilet than most people, but he's not hunched over in pain now, no abdominal tenderness like the weeks before, no body aches. He got blood work yesterday to make sure there's not a medical cause to this, too. He's been on break from school all week, which really makes me think this is stress/anxiety related. I'm hopeful we can get closer to answers before Monday when I'll need to decide about homebound instruction or another alternative.
 

DammitJanet

Well-Known Member
Jean, I can understand the idea behind why this might help. They actually gave me clonidine patches years ago to stop smoking. Have no idea if it was placebo effect or if they really worked but I stopped smoking...lol.

People, including kids, are individuals and we need what we need to function. People have told me that I am on too many medications before too. Or too high doses. Well...thats their opinion. Obviously my opinion and more importantly, my doctors opinions, happen to be that I need these medications to function somewhat decently in the world. If and when I can do so with less medications...or I need more...things will change.
 
H

HaoZi

Guest
My daughter and I both deal with some degree of IBS/IBD, and the best help I've found for it was modifying our diets and reading a lot of labels. We gear more for soluble fiber than insoluble fiber when possible, and luckily for us there's a lot of things in the grocery store today with added fiber that don't taste horrible. Some fruits/veggies are better tolerated when cooked than raw, some aren't tolerated well at all. I found this site to be a great help to us: http://www.helpforibs.com/diet/ Print the cheat sheet, it's a very handy item to have when you're at the store looking for stuff, too.

Adding on: I don't buy the supplements or teas. I do eat a good bit of yogurt (esp Fiber One and Activia). For the anise tea, I use a mesh ball that you can buy if you like loose tea leaves and anise from the herb/spice section at the grocery and make my own anise tea when I need it. Anything used for loose tea leaves or if you have a French press coffee maker can be used for it.
 
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gcvmom

Here we go again!
Janet, I have also seen it recommended for smoking cessation. It has something to do with the kinds of receptors involved with nicotine, I think...

No word yet on labs. His pediatrician was out today and no one has called me back, so I'll probably have to wait until Friday now for that info.

I still am not sure if I should go ahead with the homebound instruction for the rest of the semester. If it will get him caught up and get his grades in some of the faltering classes up in the C range, then it will be worth it.

I may go ahead and ask the pediatrician to sign off on it Friday, then discuss with the therapist on Saturday before giving the school my answer Monday.
 
hey gvc,

I work in a psychiatric hospital and we give clonidine for abdominal cramping in people who are withdrawing from opiates.

Point being -- it does have implications for treatment of symptoms of the digestive system (as has already been mentioned) as well as all the other uses that have been mentioned.

Hope the clonidine helps.

Jo
 

gcvmom

Here we go again!
Thanks. No word yet as to whether the psychiatrist will call it in for me. He may defer to the GI to deal with this now that I'm thinking about it. We have an appointment with another pediatrician GI on the 13th and don't see his regular GI until the 22nd... I just hope we don't have to wait that long to get help for this.
 

crazymama30

Active Member
G, I understand the medication thing. People look at husband's medication list and freak. Problem is, there is nothing we can eliminate, he needs every single one and badly. I hope the clonidine helps.
 

TerryJ2

Well-Known Member
I can see the connection, vaguely, with-clonidine, to calm him down. But I'd cut out milk products instead, or at least, give him acidophilus with-every single meal. A huge amt of IBS sufferers are lactose intolerant.
It's easy to test. Just cut out anything with-milk (incl hotdogs, believe it or not) for about 10 days, then pour him a big glass, have him drink it, and see what happens.
Best of luck!(by the way, I have IBS and yes, part of it is nerves, but most is handled with-acidophilus.)
 

gcvmom

Here we go again!
Terry, we tried elimnating dairy -- he managed to go about an hour before sabotaging THAT experiment. So then I went out and bought the lactase enzyme tablets for him to take with meals. He took one with EVERYTHING he ate, just to be safe. And we did this for about 10-14 days. No change. So I don't think he's lactose intolerant. He doesn't get bloated. Just cramping and alternating D and C, and the more stressed he is, the more he's in the bathroom. Also, he's been on a probiotic supplement for over a month with no noticeable change.
 
H

HaoZi

Guest
Did you check that site I listed and grab the cheat sheet? See if there's correlations between that list, what he eats, and his symptoms.
 

gcvmom

Here we go again!
I'm looking at that list now. I had wanted to go back to oatmeal for breakfast so I'm going to give that a try tomorrow. Tonight he suddenly felt ill after coming out of the shower and went straight to bed. About an hour prior to that he was snacking on some chips (maybe the fat/oils bother him?) while watching TV and had taken his evening medications.

I'll call to see if the lab results are in tomorrow morning. They should be back by now.
 
H

HaoZi

Guest
I missed the Crohn's. I know my friend that has it is on a VERY restricted diet to control it. Could be the chips, much as we like things like fries the stuff they're cooked in does a number on us (IBS).
 

gcvmom

Here we go again!
Well, his labwork came back completely normal. Soooo, I am inclined to think this is really and truly a brain/gut dysfunction resulting in IBS.

He's eating oatmeal this morning, albeit reluctantly. And will get back to work on some late assignments at the top of the hour. Tomorrow we see the therapist and I'll follow up with the GI with an email today and a phone call on Monday (they are not in clinic today). I guess I'll hold off on the hombound instruction forms until next week to see how it goes...
 

gcvmom

Here we go again!
UNBELIEVABLE.

The GI office said okay to the clonidine, but they won't rx it because it's not an IBD (inflammatory bowel disease medication). Nevermind the fact that it's being rx'd for a GI problem!!!! So they are defering to the psychiatrist. So now I'm asking him to call it in today. Otherwise, we'll have to wait until 12/13 when we meet with a regular GI at the children's hospital (which is where he was diagnosis'd with Crohn's, but we transferred to the specialist GI because I'd heard she was better). It's just unbelieveable.
 
Sorry you're having to jump through these ridiculous hoops (((((((gcvmom)))) Just ridiculous. Makes you think your head is going to explode, doesn't it?

If it's any consolation, you know we've all been there in the hoop jungle. You are heroic for hanging in there for your son, and it will come back to you.

I just gave some clonidine today to someone with nausea, abd. cramping.

Jo
 
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