I Can't Do This For Another Year

[Hope]

I think the GF/CF diet is worth a try if you are going to radically modify her diet anyway. We saw results in a week. One of my girls was dx'ed with ODD and Depression and she is fine if she sticks to her diet. Her problem is not controlled, it is gone. Just like abstaining from alcohol removes symptoms of intoxication.

I am strictly on the GF diet and mostly on the CF diet. I thought I would do the GF diet around my kids and eat whatever I wanted when they weren't there. I feel so much better that I am never even tempted to eat something with gluten. I used to be irritable all the time and anxious. I thought I was being prepared for the worst case to happen and that was a good thing, but since the diet change, I don't even spend time thinking about the worst case.

The GF/CF diet is a miracle for our family. We do have to be extremely strict about even tiny amounts. We've been doing it for over 4 years and it is only getting easier with more and more people discovering it. We can even get a GF/CF pizza delivered to our house now.

That being said, my younger daughter used to be an anxious wreck. She would take offense at the slightest criticism, or hint that she was less than perfect. She would get very angry and run up to her room and do something up there that made the whole house shake. The GF/CF diet didn't change this. She has some other health problems and I believe treating them has made her explosive anxiety go away at least for now. She is taking Lexapro for OCD and Remeron for sleep now, but her raging problem went away before she started psych meds.

We discovered the GF diet because my younger daughter had stomach problems from it. It turned out to be causing my older daughter's ODD. We were told my younger daughter's tummy problems were anxiety, but eliminating gluten and milk got rid of them. We have found the best success with psych problems accidentally by working on physical, supposedly unrelated, problems.

[geekparent]

I'm not going to quote, but I am going to reply and hope I hit upon everything.

First, I think I'm not understanding some of the abbreviations. What's a pdoc?

GFG has a pediatrician, an allergist, a psychotherapist and a psychiatrist. Her pediatrician's office referred us to the psychiatrist who referred the psychotherapist. (Whom I'm very displeased with at the moment because she did not call back and I called her last week regarding GFG's school behavior. I fully intend on asking for another referral from the psychiatrist at our next appointment).

The pediatrician has nothing to do with GFG's treatment or dx.

The initial dx came from a psychologist (will be called Psych #1) when we finally got one to take us seriously, which didn't start until GFG started school.

Psych #1 dx with generalized anxiety. Psych #1 moved out of state and we transferred to Psych #2.

Psych #2 was very nice, and while she was a good person for GFG to talk to, we weren't seeing any changes or help in the school situation. She did however, refer us to a psychiatrist for medication for the anxiety and possible ADHD.

Crack!Psychiatrist #1 was a joke. He didn't even do a proper dx. He took the referral from Psych#2, dx'd ADHD as well and then threw drugs at us. When GFG was kicked out of her private school, I realized that I needed a real dx or at least a real psychiatrist.

Psychiatrist #2 seems to be very good and knowledgeable. He gave us an official dx of ADHD (hyperactive, impulsive) and anxiety. He explained how daughter's brain chemistry works and why she reacts the way she does. His evaluation took four hours, though it wasn't the multi-level I guess that a neuropsych does.

So, this is where we are. Psychiatrist #2 is willing to meet with the school psychologist, principal and teacher to talk about GFG and her issues and how to work with her properly. I will be trying to cement this at our next appointment (on Saturday)

Should I see if I can get Psychiatrist #2 to do the neuropsych referral? Or should I just go ahead and try to do it myself. I have one more place I can check with.

[geekparent]

A dx helps. You need one to get an IEP. That's another point for the doc - she needs help at school, she needs extra support that they can't give her, without a dx. IT DOESN'T MATTER IF THE DX IS WRONG. Tell the doctor tis. A dx can be changed later, but the IEP, once in place, provides more support than she is getting now.

She has a dx. It's ADHD w/anxiety. I don't think that's all that is there, however. The dx came from her psychiatrist - the first specialist in over three years of seeking help who actually seemed inclined to dig a little deeper. Her pediatrician has had nothing to do with any of this mess aside from getting a referral for the psychiatrist from the pediatrician's office. The pediatrician, while wonderfully on the physiological end, was one of those who just didn't believe us when we said "something is wrong with our kid, this isn't typical." So, we sought help on our own for years (with no one taking us seriously until the school backed us up).

I'm not going to say that the dx is totally wrong. I do see the distraction, the hyperactivity, the impulsivity, the restlessness and constant energy, the ongoing chatter, etc. The only time I've ever known her to sit still for five minutes was when she was earning a stripe in her karate class and it was part of the test. In 8 years, I have witnessed her sitting still for five minutes just that one time.

I also see tons of anxiety. She shuts down in new situations, no matter how much we work to prepare her - explanations, social stories, the works -- but once in the situation she shuts down. She hugs herself, she goes stiff and she will eventually start to cry if not removed from the situation. If left in the situation (and in some cases, such as karate where the sensei and shihan know what's going on with her and don't mind) she will eventually calm down and warm up to it but it does take a while. She couldn't even handle our old neighbors moving out; when she finally adjusted to that, she freaked out because we had new neighbors move in.

She is her own worst critic, as I said before and she sees the world from a very "me" point of view. Even moreso than the "average" child.

I guess I just need some support and direction. I guess. I'm really at a loss. I want her to have a chance at "normal" and "average." I want good things for her. I just am feeling like we're running in circles with her.

[Marguerite]

pdoc generally meeds a psychologist or psychiatrist. tdoc is therapist.

It sounds like the dx is at least partly in the right direction. The runaround you describe unfortunately sounds fairly typical. People move (including doctors).

We also had a dx of ADHD that didn't explain everything, with GFG1. For years we asked questions and did not get answers tat helped. He was 14 before we got a dx of Asperger's. Oh yes, on top of the ADHD.

Girls are more difficult to dx with Asperger's. Bright kids are harder to pinpoint with it too. But what you describe sounds to me, not inconsistent with Asperger's.

To have a sneak peek (unofficial) go to www.childbrain.com and look for their PDD questionnaire. Whatever the result, print it out and show the various people in your daughter's medical team. See if someone (especially Psych 2) is prepared to follow it up.

Marg