Daughter in Crisis-Don't know where to turn for help

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Maybe she really does have celiac and her stomach pain is not psychological. She did test positive for it. If nothing else solves it, maybe consider getting a re-evaluation on this. If not, maybe it's a food allergy. Sorry things are so stressful, I wish you the best.

This is also made difficult by the fact that my daughter doesn't seem to be able to express how she feels. It's hard to describe...the psychologists gave her questionnaires with questions such as "when you are frightened is it hard to breathe?" and "Does your stomach hurt when you are frightened?" and she answers NO, Never. I asked her about this and she says she is not "frightened"...she would almost call it "nervous but not exactly". But because they don't word the questions or "therapy" exactly the way her mind defines how she feels she resists everything.

I cannot get a therapist to understand this! I don't know if this is executive functioning, or what exactly causes her to not be able to express how she feels/thinks to anyone.

The psychologist is trying to do Bio Feedback which I think is a machine which gives you visual feedback on your body, so it teaches you to control your bodily functions such as breathing, respiration, etc. But the psychologist comes out of the room and tells me "I can't get her to breathe from her stomach so this will take some time". Grace thinks the idea of "breathing from your stomach" is ridiculous.

These practitioners truly look at me as if I am crazy when I try to explain this. And I see these kids in the waiting room with these "stereotypical" autistic mannerisms-fidgeting, non focused, not listening, in their own worlds. My daughter doesn't fit that stereotype. At all. She hyper focused, hyper aware of every little thing, extremely responsive but with all of that comes a draw back- it's as if no one can understand-and she knows this-and it makes her angrier and sadder.

The psychologist told her to do certain things when these attacks come on such as blow bubbles, use a fidget, etc but I can't get this therapist to understand the nature of these attacks-there's no ability for her mind to say "oh yeah, I am supposed to blow bubbles"-she is in complete mental shut down/overload/non-functional mode. Her body at these times is basically just trying to stay alive. But we are continuing to see the psychologist in hopes that something will help eventually.

I think it could be celiac as someone mentioned. Unfortunately the only effective method of diagnosis is a biopsy of the colon/GI tract and I think we are all trying to avoid that if at all possible.

If it is celiac, the only thing you can do is remove gluten from her diet completely - https://www.csaceliacs.org/treatment_of ... isease.jsp so the low-FODMAP diet should be taking care of that, right? I don't ordinarily advocate removal of foods like gluten from the diet without a diagnosis...but you're right, in this case you are better safe than sorry.

It also sounds like (like my son - I've always thought our kids were similar) she is suffering from alexithemia http://www.psychiatrictimes.com/somatof ... lexithymia Psychologists should be able to figure this out - it's not uncommon on the spectrum - and it's also not uncommon to have a kid that doesn't fit the stereotype.

It sounds like where my son was coding all negative emotions as "angry" and thus acting out, your daughter is coding all negative emotions as either "sad" or "scared" and internalizing them all (she might well be justifiably angry, considering what she's been through.) We did a lot of labeling emotions by how the body responds, kind of like your therapist is doing, to help DS develop a vocabulary that included a wider range of feelings. We also looked at what his body did BEFORE he had meltdowns and taught him to do calming things THEN. (DS would clench his fists just before losing it - so we agreed he would go to his room to calm down if he felt his fists clench.)

This thread might be helpful: http://www.wrongplanet.net/forums/viewt ... p?t=226859

Also https://www.wrongplanet.net/forums/view ... p?t=214758 - I mention this program http://www.alertprogram.com/ which was helpful for coming up with appropriate coping strategies.

We also tried something goofy that worked for DS, which might work for your daughter - we gave him a "spirit animal." He chose his own (at the time, his current special interest) and then we helped him create an imaginary character that was always there with him in spirit, sort of like a Jiminy Cricket if you will. We helped him mold the character into something as loving, understanding and non-judgemental as possible, to give him something to "talk" to when he felt out of control.

I know it sounds like hokum, and we are definitely not spiritual-type people, but having a totem really helped. We put pictures up all over his room (including one by his bed where he went during meltdowns.) piles of stuffed animals, and I even found a little necklace on Etsy - he took that with him when he started 6th grade and I made it part of his IEP (yes, they all thought I was bizarre...but he did great in Middle School so nobody complained.) He eventually let it go on his own, but it was very helpful in making him feel safe.

Hang in there, Mama!

(I think it could be celiac as someone mentioned. Unfortunately the only effective method of diagnosis is a biopsy of the colon/GI tract and I think we are all trying to avoid that if at all possible.) :

That I understand, because it could be painful to do a biopsy or traumatic.

In that case, maybe remove all of the gluten from her diet for a certain amount of months (not just most of the gluten, because it has to be completely out of her diet 100% to work) and then see what happens. If that solves it, you figured out what the problem is.

This might help: http://www.thepaleomom.com/2012/09/how- ... osure.html

Oh wow, that thread has a ton of great info. Thanks!

Grace has been GF for 2 years (since she received the celiac positive test result). However, around Feb or Mar when the stomach aches were bad she stopped eating because she was afraid of her stomach hurting. She lost weight (and she was fairly underweight to begin with). The GI doc put her on a med that makes her so hungry she would eat (an antihistamine called cyproheptadine). Since that time she has eaten some gluten, though not much. I was so worried she was developing an eating disorder because she was afraid to eat. So I would try to get her to eat by offering treats, some of which were gluten.

But the stomach aches were present when she was GF.

I met with a psychologist today who knows more about IBS. she described it much better than the GI doc had and I think I understand that the anxiety can cause legitimate painful issues in the bowel and stomach. We have an appt next week to see if she can connect with Grace.

You might to switch therapists if the current one is too far off from an approach that works for your daughter. I think that concrete action based therapists are more suited to autistic people than ones who focus on feelings.

or perhaps also a dance instructor or Tai Chi instructor. And I'm serious.

The modern therapeutic approach, is still the medical model rather than playing to strength, intellectualizes in certain funny narrow ways. I don't know if it's great for anyone, and it certainly seems as though it can rub us on the spectrum the wrong way.

There's been some early research on whether pig whipworms can help to calm the immune system. In one small study, this seemed to help about half of patients with Crohn's and didn't helped the other half. You can look this up on the Internet if this interests you, TSO (Trichuris suis ova). In a sense, it is less invasive than a biopsy. But it's definitely the kind of thing that should be done with a light touch and not overdepended on.

I made a post on this where I excerpted from a science book (still speculative of course):
http://www.wrongplanet.net/forums/viewt ... p?t=236357

I don't know about gastrointestinal health, but Tai Chi certainly helped DS develop good proprioperception and better muscle tone.

Yes, I'd really like her to have an exercise program. I think it does a lot to improve mood. I don't know how she'd do in martial arts if it requires sparring with someone, but Tai Chi is the meditative movement martial art, correct? That or yoga I might be able to get her to do on a good day. Right now we are dealing with really bad days full of stomach pains, nausea, low energy, and probably some depression too. I am trying to carefully pick my battles.

She has a tutor now that she is not in school and that takes up a lot of her energy, plus all the doctor's visits which require travel to the downtown area of a nearby large city 30 miles away (we live in small suburb). That is difficult due to her vestibular sensory issues (sometimes she's hyper sensitive and sometimes she hypo sensitive) which cause car sickness a lot of the time.

I wonder if Tai Chi is something we could learn and do in our backyard?

As far as the pig whipworms, well I doubt there's any chance at all I could talk her into that.

Yes, it's easier to learn with an instructor (they help get you into the right position) but there are dozens of YouTube videos about it. We started with 19-step Chen style - here's an example: https://www.youtube.com/watch?v=c6pAvhAkqRY here's a tutorial on the basics that seems pretty good https://www.youtube.com/watch?v=C9FkTb-3uaM

If you have an Xbox with Kinect, there is a very good program called Your Shape Fitness Evolved - it's got a yoga/tai chi hybrid plus a lot of exercise games that are fun, and the kinect helps you keep your body in the right position.

Firstly, if I could give you a hug, I would. You're under a huge amount of stress trying to figure things out for your daughter and trying to find her happy place in this world. It's not easy.

My first thought about the stomach issues was yoghurt with live cultures. It will help with the healthy bacteria and depending on her underlying issue, may get rid of the pain and get things back to normal. I'm assuming she hasn't had any abdominal surgery at such a young age. If she has, then there is a possibility she may have scar tissue and with flare ups that can cause adhesions and there's generally only one way to find out. What I suspect as others have noted, is that the "IBS" as they're calling it, may have become psychosomatic, BUT - if you have ANY doubts that her stress is causing it, please seek another opinion or get more tests. Parental instincts trump all, as far I'm concerned and my midwife at the time my daughter was born basically said to always go with your instincts.

Your daughter is either going through puberty, or has started to. Are her periods regular? Are the flare ups with her stomach pain around this time? I know the stomach is a long way from the female reproduction area, but you'll be surprised at how connected everything is. I don't have answers, just looking at possibilities. Wishing you and your daughter the best and hoping for answers.

"she perceives it as REAL pain, but her pain receptors are perceiving pain where none exists". He thinks it is all due to stress.

I'll admit my daughter has had chronic stomach aches her whole life-but nothing like this."

I just read one of your later posts. The pain is VERY real. She has gastric issues, but I'm not a gastroenterologist, so I can't tell you what the cause is.

If it were me, with what I know now about gastroenterology now, and how much of a rabbit warren it was to find answers (and the tests were of no use because I couldn't get one of them which would have told them something useful)...I'd recommend seeking the pill-cam. It's a pill she swallows and takes a bunch of pictures and if it's internal, they should be able to find something.

We do have an xbox 360 but it's been shutting down every time we try to play it. We have hardly played it at all since my daughter received it for a gift but I will see if I can get it to work and look for that game.

I suggest that you google "GABA and autism" and go from there. You may find that some of the hits address the issues affecting your daughter, and in any case, there will be useful information on a general basis.