this new nurse keeps insisting on giving her Tylenol instead of ibuprofen because she is also complaining that her stomach is bothering her. In my world headache and stomach problems go together in migraines - not exactly sure why she won't give the ibuprofen which the docs are saying will work better than Tylenol.
Yes, get a written order for the ibuprofen (and dose). This nurse has no business contravening your instructions, or even giving meds without consulting you. If you give her the written instructions and she doesn't follow them, you go to the principal with a written complaint letter in hand.
Hoping I can get a letter that will clarify things for the nurse. (I will also ask them to include the hat request just to be a good sport. The original suggestion came from an out of state neuropsych we did a phone consult with – not someone I can easily ask for a letter unless I am willing to pay again.)
After you have all the paperwork in a row, I will be surprised if they don't come around.
Lori - what dose did your ds use? We are going to start at 5 mg. I have really wanted to avoid this but seriously - a first grader with a daily headache/migraine?
I use ami. (still can't spell it) for my migraines, and it's been a godsend. I'd say trust your doc, try it, and see how it goes. It has a cumulative effect (needs to be taken every day) but once it's fully in her system you'll know whether it's working or not.
Laurel - I have never really been a big fan of homeschooling but I have seriously considered it with what we have been experiencing. It wouldn't work, though, because dd has so much special ed now. Take out for reading, OT, speech therapy and anxiety along with push in for math. She is also very, very social and would be miserable without the social aspect of school. If the light situation gets totally unbearable I can see a possibility of battling down the road to have some of these services provided at home but right now it's not really an option.
It sounds like you have a very good sense of what is to be lost/gained in the various tradeoffs that are possible. I imagine your DD knows exactly how hard you are trying to make things feel right for her.
I do think I will be hiring an advocate after this experience. I think this has opened the door...
We love having an advocate; not because things are contentious (any more) but because it's one more thoughtful mind working on the problem of educating a complicated child. When things were contentious, I couldn't have lived without her; as it is, we still use her and are grateful.
Hope to hear that things are improving soon...
DeeDee
