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

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My daughter was diagnosed with Asperger's when she was 6. That was almost 6 years ago. In the beginning we dealt with horrible meltdowns-anger and frustration would cause her to become in a fight or flight mode. I wrote about many of those issues years ago on this site.

Throughout elementary years, I found a great, small school for my daughter, and while she had issues she was mostly happy and had a few friends and did well academically (mostly).

The small private school topped out at 5th grade and so this school year I enrolled her in the public school here. It's a large school, with almost 1000 kids. I talked to the counselors and administrators but we all probably took the wrong approach by taking a wait and see how she did approach to supports and modifications.

At first she did well. She usually does okay at first in new situations (strangely). She can be withdrawn and mute but she will do what is asked from her and she succeeded in making straight A's the first 6 week period.

During the 2nd six weeks there were a few incidents. With my daughter a negative experience has ripple effects and she will see the place, people, or situation a negative incident involves as "bad" and will avoid/be afraid of that thing in the future.

Negative incidences started to add up and she had what we are calling a "panic attack" at school last November in the locker room at PE. It was traumatic for all involved.

Shortly after that incident my daughter had a stomach issue and used the restroom several times at school. Because of the ruless they dictated in the beginning of school (and her strict adherance to the rules and her need to not get in trouble), when I picked my daughter up she was crying and stated she used "all of her bathroom passes and wouldn't get anymore". She was panicked. I calmed her down but it was a very bad stomach virus and she was out of school for a week. After that week, her stomach continued to hurt. I took her to Dr's who just said it's a bad virus but weeks went by and still the doubled over stomach aches persisted.

Mid January we were still dealing will the stomach aches. And her anxiety was really bad-she was starting to say strange things like she couldn't ride in certain peoples car, or she wouldn't get out of the car at school because she "felt something bad was going to happen". She started to get rituals and rules for everything. This was even happening at home.

The pediatrician ran many tests and she tested positive for hPylori so did a severe eradication process that consited of heavy antibiotics for 2 weeks. That made the stomach worse. By this time the school was afraid of the "panic attacks" and kept her in a room by herself all day and did not give her work. She listened to her music on headphones all day.
Through January and February her stomach aches were daily, and severe. The pedi referred us to a GI specialist who we saw early March.

By this time my daughter was having severe panic attacks on a regular basis. The panic attacks were different from the older "fight or flight" meltdowns in that they were fear based and not anger based. She would curl into a ball and scream-usually something like "help me!" over and over, but would not let anyone touch her. She would cry and scream until she exhausted herself and then would be eerily calm. It was very frightening.

The GI Dr said she has IBS (ran no tests) and put her on a tri cyclic antidepressant and referred us to a behavioral psychologist.

Early March I withdrew my daughter from school after a 3 hour meltdown/panic attack where she begged me not to go to school. It was heartbreaking/gutwrenching and horrible. I couldn't do it anymore!

I intended to homeschool but we've been basically decompressing ever since. She still has frequent "panic attacks". I put panic attacks in quotes because I'm not sure that's what it is. I really don't know. She also still has daily stomach pain.

The behavioral psychologist states she should have had supports/mods and that because of my daughter's sensory overload and anxiety at school, the mind-stomach connection was forged and that explains the chronic stomach aches.
This is very hard for me to believe.

This psychologist states she will fix things with the school and make sure supports/mods/iep is put in place to prevent this next year. My daughter is now fearful to even drive up to the school.

We are basically living as shut ins. My daughter has trouble leaving the house & it's getting worse not better. I don't know what to do. She is still on the tri-cyclic anti depressant (a very low dose-25 mg a day) but it's not helping. The psychiatrist won't do anything because he was appalled they put her on that drug. However, from what I read imipramine is good for panic.

I guess I am posting here for advice, or to find out if anyone else has gone through this. I am very frightened for my daughter's future & I don't know how to pull her out of this. She is so negative now...she hears everything I say as a negative. She thinks every possible thing is a potential negative. The negativity/snapping/anger is swallowing us. I just don't know where to go for help. All this psychology/psychiatry is just guessing and I've pleaded with so many doctors now to help us.

I'd like to know if anyone has advice or can relate. Thanks for reading if you made it this far. Any advice is appreciated. No one understands here.

Lots of anger and frustration getting out of control. I would suggest more sport, martial sports preferably for helping getting this at a controllable level. And a punching ball at home.
An energy-demanding activity everyday, like running or cycling with that!

I’m sorry that you and your daughter are having a tough time. I have asperger’s but did not get a diagnosis until I was 17. I started having GI problems when I was about 12-13 and I still have them. For the GI problems that your daughter has, maybe you should consult another doctor? Seems strange that they don’t make sure that it’s not something worse than IBS, not that IBS isn’t horrible, I know or at least it is what the doctors suspect that I have.

For me the things that make it better for me are avoiding certain foods like wheat, mushrooms, apple, lactose and popcorn. I also have to eat small meals and regularly. I don’t have food allergies but lactose most certainly affects me. Did you ever read about FODMAP? And I drink a lot of chamomile and pepper mint tea. Also certain probiotics are helpful. I also start the day with drinking a glass of water with psyllium seeds or linseed. Stress makes my GI problems worse, but also sitting to long, I need to move and stretch. I know that when I have extra bad GI problems everything becomes worse for me I get horrible anxiety and fears.

I’m not surprised that your daughter does well in the beginning, so did I growing up, but after like 2 months or so it would get worse. Because after the I was so tired and stressed from always being on high alert, when you are constantly super aware of your surroundings and constantly have to take care of how you act, and then on top you have daily stomach ache, daily anxiety then you will break down after a while. I never told my parents that I was bullied in school; I don’t know if this might be the same for your daughter? Maybe she keeps more things to herself? Does she sleep well? Sleep deprivation will make her problems a lot worse.
Maybe she needs a break, a chance to get some rest and a new start? Does she have any hobbies that she loves? Maybe you can focus extra on them for a while? Is it possible for start in a new smaller school?

I’m sorry I have no better ideas for you.
I hope that things will get better for your daughter.

Such a good age to learn some basic bodyworkouts and discipline, it might be hard work at first but that will be for a lifelong benefit, and even the bellyproblems will be more manageble with the exercise.

Oh, Mama - I don't have time to post anything but a quick thought; I'll try to come back later and see if I can think of anything - but I wanted to post that I am so sorry your beautiful girl is struggling and you are, too. Hang in there!

The only thing which worked for my increasing levels of anxiety was to completely stop doing everything stressful for a nice, long, relaxing vacation. I basically needed time for my anxiety to return to baseline levels. It took approximately four months to stop panicking every day.

I'm pretty sure that she won't be able to return to that same school even after. After all that negative exposure, she's going to start panicking even at the mere sight of the school building. She might even panic at places which just remind her of it.

Thanks everyone for the comments. We are on the low FODMAP diet. A few more things to mention: she tested positive for Celiac a few years ago but this GI doc said it was "probably a false positive" and that he didn't feel she had signs of celiac.

This GI doc is supposedly the "best" at highly regarded Children's Hospital. He explained why he thought it wasn't a disease or organic issue but a functional issue.

I feel that means "in her head" or "psychiatric" which doesn't sound right. When you have seen your child writhing in pain and the tears in their eyes you know it is REAL pain. I told the GI doc that and he said "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.

The psychologist did say exercise should help. And some days I can get my daughter to take a walk or jump on the trampoline. But some days she resists everything.

She just wants to lay on her bed and watch Doctor Who videos. She likes Doctor Who a LOT. We haven't found a hobby she likes, she doesn't like art, she pretty much doesn't like going where there are people. She likes to swim and this summer I am sure she will do a lot of that.

The psychologist tried to do Bio Feedback with my daughter but it made her sick. I don't know if that's a quack treatment or not, but she is going to try again.

That's all for now. Looking forward to your post Momsparky, you always have words of wisdom, which I really need right now.

Oh, honey, I feel so bad for you! I'm remembering that I had a stomachache pretty much all the way through elementary school...I do think there is a stress aspect to GI issues (and I also know, having been recently diagnosed with fibromyalgia, that IBS can be a part of that - I'd guess my fibromyalgia and potential AS are related.)

I kind of agree that it wouldn't be a bad thing to let her "cocoon" for a while - like, really, really cocoon if it is possible - as long as she is sleeping and eating, binge-watching Dr. Who for a while - a long while - should be OK. I know that will be very, very hard on you - do you have someone who can give you a break on occasion?

If you recall, DS went through something similar in 3rd-4th grade some years back - it took a long time for him to feel safe again, and the OCD-like behaviors were so extreme he could barely walk places. (Coincidentally, there is a manga character in Soul Eater that has a similar type of OCD; I think seeing that normalized it a bit and actually helped him a lot...) Some of it was getting him out of that environment - when we moved to the middle school and they ACTUALLY supported him and made him a part of the process, he gradually got so much better that we (actually - he did it) removed all his supports successfully except for pragmatics/social skills. It really was about him feeling unsafe and trying to control it; staying somewhere associated with a lack of safety was a really big ask for him.

A therapist recommended a kids' workbook on OCD ( http://www.amazon.com/What-When-Brain-S ... 1591478057 ) that really helped us a lot, even though DS did not present with a traditional OCD pattern (there was not a causal relationship between the obsessions/concerns and the ritual-like behavior, they were separate.) Some of what was so frightening for DS was that he did not understand his own feelings and his own behavior - I would guess from your description that your daughter is feeling the same way. He percieved feelings as kind of like a light switch: either "on" or "off," instead of having degrees of feelings - so he would ignore his own feelings of discomfort until it piled up and became panic (sounds like that is what is happening here?)

One of the things we did over time was help map out and label the little feelings very explicitly and carefully. For instance "I know we are going to school late today. Remember that you don't like things to be different, and that's going to be different. You might feel weird - but remember, that's because your routine is a little off today - it's natural to feel a little "off" when your routine is off. You will be OK."

I also had a really, really awful time with endometriosis, which was misdiagnosed as GI issues or "it's just cramps" for years. Your daughter is at least in the ballpark of puberty, right? Has that been eliminated as a factor in her GI issues? Just a thought - for me, it was one of those things where all the doctors said "just take an advil" and then when I finally wound up in the ER said "Oh, my GOSH, HOW did you STAND it?" I suppose being spectrum-y had something to do with it: I don't think I either understand or explain pain well.

I'm not sure what to say about meds...they are so hard for children, but I will say that being on an antidepressant that also works for some obsessive behaviors also helped my GI symptoms (Wellbutrin - prescribed for the fibromyalgia after a bunch of other stuff didn't work)

Problem with meds with kids is that it's mostly trial-and-error finding the right one and the right dose, and it is very, very hard to determine what is working and what isn't, especially when you have a kid in crisis. All that to say, I wish I could help: meds may or may not be the right course of action, and what you really need is an experienced doctor who specializes in obsessive behaviors and kids on the spectrum.

My daughter is nearing puberty and I thought of that but they tested her hormones and said that wasn't the issue. She is undeveloped physically and still very immature mentally in some regards.

She lacks introspection. When I try to determine how she feels about something she becomes agitated. If I persist she says talking about it makes her "relive" it. She strongly resists talking about "emotions". She does talk about how her body feels so I hear a lot of "my chest feels heavy" or "my stomach hurts" (I hear that literally 20-100 times per day) or "I feel funny" or "I don't feel right".

The psychologist is trying to do cognitive behavioral therapy which consists of fact based education on bodily functioning and how stress creates feelings in the body. Grace seems to be responding to that somewhat-but still feels hopeless and as if no one understands.

The OCD issues seem to be a marriage of stress and repetition and not true obsessions/compulsions. And they are dying down now that she is not in school (although we don't really have any instigators or stressors now). But she does need to very tightly control everything. And when things don't go her way she lashes out, sometimes in anger (meltdown), sometimes in fear (panic attack).

I know that it's not horrible that she lays and watches Doctor Who, but I really worry about her mental health and physical health and don't want her to pull more and more away from me. She uses me as a safety/security device. When she wants me to hug her she allows it, all other times she wants me to leave her alone, which is hard for a mom . I spend a lot of time trying to cheer her up, get her things to interest her, trying to engage her in conversation or a joint activity like putting together a puzzle, but she reverts to isolation and grumpiness right after.

I am very worried about her.

I completely understand your worry, it is very scary!

What I meant was not that I asked DS what he was feeling, but rather I told him - took detective work on my part, and I didn't do it perfectly. To this day, I get "I don't feel right" which I take as a sign to backtrack over his day and find something that might be bothering him (these days, he helps me, but back in the day I had to sleuth it out of his teachers and anything going on at home.)

I know she doesn't have OCD - but if you can get a copy of the book, take a look - some of the language it used was really, really helpful to us.

The stomach issues sounds a lot like anxiety and stress related but it could be an actual medical problem. My best friend had a very stressful childhood and she suffers from anxiety issues...stomach issues were very common (and still are) when her stress levels hit the fan. She's told me it feels like really bad menstrual cramps that wont stop and last hours or days... or as if there was a critter inside her clawing its way out. If its anxiety related then of course finding a way to control that anxiety is the way to go.

If its medical, you could try asking your doctor about the possibility of changing her intestinal fauna. Essentially they clean the intestines out by a combination of medicines and colon washes (I think thats what they call it? flush liquid into the intestine rectally and then they take it all out) and then they take a lab-grown 'good intestinal fauna' and put it in so that it grows in the intestines.

Sounds like a terrible thing but its relatively simple to do and the results for people with GI issues is amazing. Gut fauna has also been directly linked to many mood problems (including depression and anxiety). Best of all? The doctor can keep a sample of the original fauna and if the results aren't good, they can simply put the original back in.

I just ordered the book from Amazon and will give it a try. She does get agitated if I try to tell her how she is feeling or even suggest. But I will try to do that. I think pre-teen female angst might be playing into her "Mom, you just don't understand" stuff. I try to be understanding but she really does feel like she's on the wrong planet. Thanks for all your suggestions!

As for the intestinal fauna-the GI doc does have her on medical grade Pro biotics called VSL 3-only available by a prescription. Scientific studies have shown it to be effective for restoring "good bacteria" in the gut so we are trying that.

That's a clue. That sounds a lot like the heavy antibiotics wiped out too much of the good and healthy gut bacteria, leaving a lot of open terrain for the bad bacteria to colonize. This is one reason hospitalized patients sometimes get 'c diff'(?).

I think it's a good thing her GI doc is trying the prescription-strength VSL 3. Only thing I might add is that like a lot of things in medicine, it's probably trial and error in a respectful sense and no doctor in the world can tell in advance. For example, I think the gut bacteria most probably are a pretty complex ecosystem indeed. And I think there's a lot of tinkering steps that can be tried before the cleanses and recolonizations that Dantac is talking about. I like the general approach of a solid medium step, observe feedback, another medium step, and so on.

I'm sorry you and your daughter are going through all this. It sounds like it's no fun at all.

Looking back on it, one thing that helped me as a teenager was that both my Boy Scout troop and judo team were in the other school district. And thus all my social eggs were not in the one basket of school.

Sounds like she needs a reboot.

I don't know if it is possible to take her out of the school for the rest of the year and try again in the fall? PErhaps even try a different school?

My daughter operates a bit like this, but she is only 7 and it's easier to "reboot" her by just switching up her schedule, or switching her to a different teacher. She got bad around december/january herself and the teacher/school, thankfully, were nice enough to change the schedule for the whole classroom for the rest of the year... which was no small feat.

But she also gets these almost paranoid bouts of depression where something is bad and it will never be good again and she will have panic attacks etc... it's pretty upsetting when it happens.

I don't have any good ideas for how to get out of this severe anxiety, the only thing seems to be to continue regular therapy. Perhaps tell her that it is not necessary for therapists or anyone to fully understand her at any deep level, but that they can help her with reducing anxiety and being more functional and not ruled by anxiety. Many autistic people report therapists not understanding them, but I think it is wrong approach to think that a therapist will understand someone well, but better approach to work on reducing anxiety like a functional task, learn some mental tools to help with that in real-time, and these are all things that therapists can help with.

THIS.

(Though I do think there are more and more therapists who are starting to understand autism.)

Not meaning to harp on it, but I felt like I hadn't framed this correctly before - this is one of the reasons I liked that book: it approaches OCD and its component parts in a very, very functional way. When I did it with my son, I explained that he didn't have OCD, but that a lot of the stuff in the book applied anyway, and part of the discussion was what things did/did not fit, which in itself was helpful. One of the things that scared him so much was the anxiety itself, so taking away the mystery from it by talking about it in an academic way helped enormously.