Aspie with Reflux- advise?

[fiddlefern]

So... my 8 yo Asperger's boy has reflux.  For years it's been pretty much completely under control with Omeprazole.

He had failure to thrive as a toddler and was on a NG tube from age 2 to age 4.  When we had him in feeding therapy back then, they told us to feed him whatever he would eat, lots of barbeque sauce and pizza and chocolate, etc.  They said don't worry about the food causing reflux, we'll control the reflux with meds and deal with the failure to thrive.  That worked for a long time.

Well, now his reflux is totally out of control and has been for months.  We're finally seeing the GI doc on Wednesday.  He's on the max dose of Omeprazole, plus he takes two max strength TUMS every night 'cause the Ped said to use it if needed, and every night he suffers.  He's done eating 2 hours before bedtime, we elevate the bed, we have him sit up for story time, but when he lays down the gagging and throat clearing and swallow swallow swallow breath (swallowing a bunch of relflux) starts.

What can we do to help him?

Specifically:

1.  How to modify his diet when routine changes make him FREAK and he's already picky and the ped is already worried about his weight again?

2.  What meds are they likely to suggest to replace the Omeprazole and what are the long-term side-effects (since the reflux may be a life-long thing for him?)

3.  Should I be worried that he's been on Omeprazole for 6 years?

4.  What other therapies would you suggest?  We recently went for the first time to see a pediatric craniosacral therapist.  His reflux has been worse since that visit.  I still want to go back a few times and see if that correlation continues, since I've always felt guilty for not doing craniosacral therapy at birth (suggested by the doula because of long, difficult labor and long, difficult vacume extraction).  My bias: I'm not a real big believer in homeopathy and won't spend super big bucks on that, but I am fairly open to suggestion right now because he's suffering and I want to work more holistically.

Whew!  I'm waiting to get approval for an account over at P2P (parenting reflux board), but I thought I'd ask you mamas for help, especially for the Asperger's angle.

[KimPM]

I don't know what to suggest about the medications, we never did any meds, but let me give you our experience.

My DS had reflux from birth. He also had oral motor issues affecting breastfeeding and later eating. He also has serious texture defensiveness, so eating has been a problem. He didn't start even trying solid foods until he was almost 2 years old, and his trying solid food was only because of feeding therapy. He didn't start actually eating any decent amount of solid food until he was 27-28 months. He was breastfed until almost 3 years old. He was diagnosed with Aspergers at 4 y.o. He is now 6.5 y.o.

1. He had craniosacral therapy at around 3 months old to help the breastfeeding issues - he would constantly chew on me instead of doing a proper suck. Yes I saw a lactation consultant - it was way beyond her experience even. She suggested the CST. After each CST session it was different each time, sometimes better, sometimes worse. He only had a total of 5 CST sessions, one per week. He was also getting physical therapy for torticollis at that time. So the combination of both seemed to help him figure out how to breastfeed - almost correctly, well, at least so it didn't hurt me so bad. Don't feel bad if you didn't get your DS CST early on. I'm not sure that, all by itself, if CST would have made a difference for my DS.

2. Since my DS has picked up eating very, very slowly, we had the benefit of seeing the effects of adding new things slowly to his diet. We discovered over the course of this that he has sensitivities to at least 13 different foods. In hindsight, I can see that my eating of foods that he was sensitive to caused him reflux through the breast milk. This was also compounded by the fact that I was also eating foods that I discovered that I am sensitive to as well. I was tested for IgG food sensitivities (you can get a blood test via directlabs.com) when my DS was about 1 year old and he was exclusively breastfed. I noticed that after I stopped eating the foods I was reacting to, my breastmilk was no longer "bubbly" (I pumped my milk sometimes because of the chewing and pain he caused me, so I could see the milk before and after changing my diet). Some of my food sensitivities are shared with my DS. So both of us benefited from finding and removing my food offenders. His reflux went to just about zero after I removed my/our food offenders. I never had him tested for food sensitivities at the time (ever try to get blood from a 1 year old?).

3. Since then I've discovered a few other food offenders of his. This was largely found by writing down everything he eats. We still do this. It has been very helpful in finding things he's sensitive to. His reactions vary with the particular food, but it can be an obvious rash, or something harder to pin down, like unusual flare-ups in behavior.

4. I do totally get the worries about changing your DS's dietary habits. We have probably *just* enough foods to keep our DS going. His diet is not all that diverse, but probably just nutrition enough. It does get worse when he's sick, though. And I have had to be creative at finding options when a kid has so many sensitivities. But it also helps him in the long run, because it's kind of a catch 22 - the foods that he's sensitive to also often make it such that he is even more sensitive to textures and has more problems eating. So limiting his diet ironically helps him to eat more.

5. We called in a private speech therapist who specializes in feeding therapy. I called around everywhere to find her and she has been great. She did NOT use behavioral techniques, she did play-based therapy. This was extremely helpful in getting him over the anxiety of even trying solids the first time.

6. We still deal with his limited diet and getting him to eat enough. But he is eating and has been generally healthy. I still try to get him to test a new food once in awhile, but I don't expect much. He pretty much sticks with food he knows. He also has a good understanding of which foods cause him trouble because we talk about it. Sometimes I feel bad not allowing him to eat something he wants, like the blueberry he's sensitive to, because he seldom actually indicates he wants to eat anything in particular. But as I explained before I know it's better for him in the long run.

I hope some of my experience is helpful to you. I would suggest you look into getting food sensitivity testing on him. Not simply IgE food allergy testing, but food sensitivity testing. This is a good starting point, but I would also suggest keeping a food log when you are ready to start identifying problem foods. I would also keep him in the loop as much as possible, letting him know you're trying to find what foods are bothering him. It may be that when you identify problem foods and remove them, he may have fewer eating issues and be able to eat more.

Let me know if you have any questions. I'm open to PMs if you'd like.

ETA: I also wouldn't expect your GI doc or any other mainstream doctor to know about or agree with food sensitivities.

Check in at the allergies forum:
http://www.mothering.com/community/f/307/allergies
There are probably more stories there of reflux getting better or going away with dietary changes.
Edited by KimPM - 6/2/12 at 7:52am

[FranklySpeaking]

I am an adult Aspie with terrible acid reflux at bedtime.

I am also an engineer, and one night a simple solution dawned on me; so simple I wondered why no one ever thought of it before!

Since the liver is on the right side of the body, and the stomach is on the left, if you sleep lying on the left side, the stomach contents have to go uphill to reach the esophagus. You sleep on the right side, you are essentially inverting the stomach and forcing the acid against the esophageal sphincter.

Go to Google Images, search on "stomach" and look at the stomach images, and you will see what I mean, how the stomach is on the left.

It helps to not eat near bedtime, of course, but my wife doesn't get home from work until late in the evening, so often I violate the common sense rule about not eating near bed time, and lying on my left side pretty much eliminates the problems with reflux.

[fiddlefern]

Thanks for the replies.

My son DOES sleep on his left side.  Interesting!  I always thought it was because this allowed him to face away from the door to his bedroom and thus the rest of the house (Aspie wanting privacy).  I'll bet it's a bit more comfortable.

I do need to check into food sensitivities.  This is going to be hard, since he eats pretty much the same thing all the time, so it will be hard to notice differences in diet.  My mom has suggested the food sensitivity thing before.  She's a nurse.  She also has reflux and food sensitivities that make it worse.  The thing is, even without food sensitivities he doesn't eat the type of diet that's very helpful for reflux- high fat, lots of BBQ sauce and pizza sauce.  Good for weight gain except that reflux is the reason he's NOT gaining enough weight.  Catch 22.

I went to the health food store today and asked for advise, and came home with some pro-biotics (duh!)  There's just so much to think about that I miss some obvious stuff.  The last time I considered probiotics, it was years ago before he was willing to swallow pills, and we tried sprinkling the powder on stuff and it was rejected.  Priobiotics are an easy thing to introduce now.  I gave him some today.  Too bad there's no way in heck he'd ever eat raw saurcraut.  There's a brand here that's amazing and would probably be awesome for his gut.  The rest of my family loves it as a special (expensive) side dish.

[FranklySpeaking]

It wouldn't hurt to check food sensitivities. By the way, some of them can be weird, not follow conventional wisdom. Conventional wisdom says either you can tolerate gluten or not, and if not, you cannot even tolerate a trace.

I most definitely can tolerate more than a trace of gluten, but too much, and I get a headache. My limit is about two slices of a standard medium pizza; any more and I will be sick the next day.

I also cannot eat/drink anything with the seaweed based thickener carrageenan in it; one glass of store-bought chocolate milk and I will be very sick the next day. Many ice cream products and puddings also contain it.

I am also very sensitive to nitrate withdrawal; i.e. if I eat ham or other nitrated (corned) meats several days in a row and then stop for day, I will get violently ill.

I also suffer from an excess production of adrenaline, which makes me jumpy and tremble. The common blood pressure medicine carvedilol is an alpha and beta blocker, which block the effects of adrenaline on both the heart/vascular systems and skeletal muscles. It is NOT a mood altering drug, it just blocks adrenaline. The only side affect is you are sleepier, but then again, that's what you would expect if you removed the effects of a constant flood of adrenaline. I get the impression many Aspies and autists would benefit from blocking adrenaline.
 

[fiddlefern]

FranklySpeaking, thanks for your experience.  The developmental ped has suggested that somewhere down the line if the sensory therapy and the social therapy aren't enough (his Aspie diagnosis is pretty new), that we might consider medication for anxiety.  It's interesting to think that perhaps just blocking some of the adrenaline that rushes through him might work.  I'm going to file that info in the back of my head for later.

I'm realizing that the more verbal my son becomes, and the more aware of his body, the easier it's going to be to figure some of this stuff out.  He has some crazy hypersensitivities to pain, (and then some hyposensitivities too, like not noticing he'd put a staple through his finger) but the hypersensitivity might actually work to our favor in terms of figuring out what his food sensitivities are.

[FranklySpeaking]

With the self awareness from having been professionally diagnosed as an Aspie, and raising a couple of Aspie boys in the dark ages before anyone had ever heard of Asperger's, I have a unique perspective.

I suspect many kids who bounce off the walls and are given attention deficit drugs really just needed anti-adrenaline drugs, which are pretty harmless drugs, pretty safe drugs, and not mood altering.

Regarding pain in Aspies; I have theories based on my own perceptions, tales from my Aspie brothers and catastrophies with my sons. Both I and one of my brothers can have major dental work done without anesthetic. I theorize we are capable of this not because we do not feel pain, but because pain does not evoke emotion. My father, I, and my one son especially have had tales of woe regarding doctors missing broken bones and completely misdiagnosing serious problems. What I theorize is going on is: when a doctor tells a neurotypical to push or pull or whatever to gauge the pain reaction and decide if X-rays are necessary, the neurotypical cries out in pain or refuses to push or pull. My father had a shattered collarbone and the doctor missed the diagnosis. I had a wrist so broken my hand/wrist would separate from the arm, and the doctor missed the diagnosis. My son had a broken arm, yet followed commands to hold a weighted bucket while his shoulder separation was being X-rayed, and his broken arm was missed for days. I can seem hypersensitive to pain when I step on a tack, but it is not the pain that is provoking a strong reaction, it is the startle, the surprise.

Take everything I say with a grain of salt too; Aspies are not monolithic, our personalities can vary just a widely as any neurotypical. None of my brothers or sons have the same personality or perceptions. For instance, I cannot tolerate a single speck of black pepper cooked into a pot of stew, and my most Aspie son dumps hot sauce on everything.

One bit of advice I can give; it may have been rough growing up and my raising kids in the dark ages before anyone had heard of Asperger's, but at least we didn't have the "Asperger's" label attached to us like a dead albatross. I made the mistake at one former employment of informing co-workers I had Asperger's, and overnight I went from being an oracle to being treated like I was retarded. If I was a parent raising kids today, I would tell as few people as possible about my kid's Asperger's (it is none of their business) and not tell my child he has Asperger's until he is old enough to understand the importance of keeping such things secret. I cannot reveal who I am when I blog, or be too specific about family because I do not have the right to "out" my brothers or my sons. Outting an Aspie can cause them to lose their job.

Aspie's can have great careers where depth of knowledge and attention to detail are useful; your job as a parent is to overcome the intrinsic shortcomings by drilling into the child how to (borrowing this phrase) "pretend to be normal".

Your son is a picky eater; he must change in order to get along. Pose to him this challenge; when I worked on hydroelectric dams in a Central Asian country, I had to have lunch with an energy minister. Would your son eat the strange food? Would he be ready to propose a toast? Would he speak their language? (I speak four major foreign languages).