Thanks so much everyone for your stories, sympathies and advice. I'm sad there are others out there dealing with it themselves, or with their children, but it is really helpful hearing other people's experiences.
The anxiety issue is pretty big trigger in our DD. Though she is a very happy, easy going child she is a perfectionist and holds herself to some very high standards. She is also very empathetic and can easily take on other people's emotions. She has an intense fear of not being liked by people who are in any kind of authority position over her, including her dad and I. We are working on all of that with her child psych and while that is going well, she is still learning the tools to manage her anxiety.
A number of people mentioned her SPD. For her it is oral textures (food aversions), smells and I'll unofficially add light to that because it can be an instant migraine trigger. She also has texture aversions, but not very strong and they have decreased with age. With the texture it's difficult to tell because she has allergies to different fabrics (wool, poly blends), lots of detergents/perfumes etc. so there is kind of a combined whammy there. We're thinking she may have an intense reaction to coffee as Nature's gate organic lotion gave her an actual chemical burn. (The only suspect ingredient was coffee after confirmation of the lotion, but we haven't taped a bean to her yet because her reaction almost put her in the hospital, Crazy.)
Typing that all makes me note that while I don't get migraines, I will get an immediate headache at a movie, show, elevator where I am close to someone who swam in perfume. I also have allergic reactions to detergents/lotions etc. but not as bad as hers. I'm not sure what an OT could do to help her though which is why we haven't gone that route for her SPD considering much of it is combined with an allergic reaction. The food issues FWIW seems to be genetic because I have the same gag reflex she does (and GI issues have been ruled out for her as well, resulting in the same diagnosis of 'intestinal migraines' - go back to her neuro for that). Anyone have any thoughts on the OT?
Like I said earlier she was put through the ringer when this all first started. No one suspected migraines. They started with meningitis, diabetes, immune system issues etc. and ran a battery of tests repeatedly. The first Dr. she saw was an infectious disease specialist because of her vaccine status (selective, delayed and modified) and we were pretty much laughed out his office the poor guy.
She's done a full GI workup, MRI, cat-scans, evals by Opth's, ENT's, Neuro's etc., etc., etc.... We're left with the only other option based on elimination; migraines. It's odd but part of me wanted someone to find something that already had a name that they could pinpoint to an exact cause, it felt like it might have been easier.
She went to the neuro today and we had a long 1.5 talking in there, reviewing her history, her current symptoms. She's a text book case of Chronic Migraine. She's had 1 day the entire month of June w/o a headache. She runs on them now and Triptans don't work as well (they just hold off the knock her on her ass migraine and maintain a moderate 'headache'). We've been given three options by the neuro: daily presc. strength antihistamines (SE's: sleepiness and weight gain), anti-seizure meds (SE's: sleepiness and jitters), anti-depressants (SE's: sleepiness and thoughts of suicide in depressed people). We're sitting on an unfilled script for the antihistamines.
I mentioned in an earlier post that she was seeing a psych through the neuro clinic who is helping with the anxiety and pain management through biofeedback. We actually bought DD the RESPERATE (http://www.resperate.com/
) through our HSA and it came in today. It has helped her in the office with the psych so we are going to give that a try and focus right now living a more structured and routine life. We need to get her out of the chronic migraine loop, and I feel a sense of urgency about it. DH and I need to sit down and have a long talk about either 1) trying it on our own with lots of scheduled relaxation, 5 square meals a day and 11 hours of sleep or 2) try to kick it with the script. Neuro knows where we stand on this, but I feel like we have a short window to try it our way because she needs to kick it and enjoy the summer a bit. Either way it has to be kicked before school starts in late Aug.
Grrrr... I hate migraines.
UptownZoo - how's Carter doing?