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Pemberley, hang in there. Seems to me you should politely, and very firmly, hold your ground. Hats *are*cheaper than incandescent lights...

DeeDee

Got a nice phone call this morning from dd's teacher apologizing for the whole mess and saying "not a soul in the whole building has a problem with her wearing a hat." According to teacher the entire issue was whether or not we have gotten confirmation of migraines and whether or not she should wear her hat during gym. Teacher says the nurse, who just started at the school last week, totally misunderstood and misrepresented the issue. Not so sure I believe it but at least it looks like my decision to reject the IEP made an impression. I explained that I thought a no cost, simple accommodation that affects no one else would be preferable over the expense of changing lights in the classroom or providing tutors at home because dd can't be taught in the building. It really doesn’t make sense for anyone to try to make an issue out of it. Needless to say she wholeheartedly agreed and will pass along my thoughts. I still can’t understand why SW couldn’t grasp the concept yesterday…

Was called to pick dd up today - another headache - and the nurse wouldn't even make eye contact with me let alone say hello. Apparently I did not make any friends in the nurse's office over this one. She told me over the phone that she did not see any reason for dd to go home - she looked fine - but dd insisted she felt really awful. When I took her to say goodbye to the special ed teacher (we were leaving just as take out would have been starting) the teacher said she could tell just from looking at dd how terrible she felt. The nurse issue could really become a problem As I asked the teacher on the phone this morning when you are dealing with parents who are running around to doctors, getting tests, having their kid in the hospital, etc and the kid feels awful why would the nurse choose THAT parent to give a hard time over something so ridiculous?

So I finally broke down and filled the prescription for Elavil to try to control her headaches. I wanted to avoid it but I just can't have her debilitated by headaches day in and day out. I will start it tonight unless someone or something convinces me in the next few hours that it's a bad idea. Very low dose used for headache prevention not as an antidepressant.

Yes, of course you want to help your daughter deal with the pain of these headaches.


I wanted to ask one question. A while you back you had written:


Any way you can take her out of school for the remainder of the year (e.g. homeschool)? That would buy you time as you investigate the possible seizures, lds, etc. (I know this may not be appealing and/or possible for you or her, but just wanted to throw this out there as an idea.)

If you are using Elavil for headaches, it is still an anti-depressant. Make sure you are keeping track of the possible side effects (especially anxiety and depression), per the recommendation on the drug use facts (not sure what kind you got, but for example, see http://www.webmd.com/drugs/drug-1807-Elavil+Oral.aspx?drugid=1807&drugname=Elavil+Oral).

Whatever you choose, your daughter will feel your love and concern, and we will be thinking of you both. Good luck tonight.

I'm so sorry you're getting attitude from the school nurse. She's a medical professional, so of course, she "knows" your daughter is faking her debilitating headaches.

It's frustrating to have to deal with people like this nurse, but know you're doing the right thing. And we've all been there in one way or another.

Hope you find the right solution for your little one.

My son tried Elavil (Amitriptyline) for his migraine headaches. We were told to try it for a month because it might take that long to start working. Not only did it not work, but that whole month my son was like a zombie. He stopped making jokes and was tired all the time. He decided it was better to live with the headaches than to feel like that. Our migraines are usually triggered by weather changes. I asked family members what worked on their headaches and my sister told me she took an over the counter medication with Ibuprofen and Pseudoephedrine like Advil Cold and Sinus (non-drowsy). It doesn't totally take away the pain but it helps enough that we can function.

My son was getting a migraine just an hour before he had to play the part of Linus in A Charlie Brown Christmas and after taking the Advil Cold and Sinus he was able to do the part well enough that I don't think anyone noticed that he wasn't feeling well.

Thanks all. DD is getting headaches just about every day in school and 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. We have given her ibuprofen the last 2 days and her headache has cleared in about 30-45 minutes. No headaches (or very, very few) on days she is not in school. I have a call in to the big name neurologist who prescribed the Elavil. 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.)

In any case they are saying that a) if she has 3 or more headaches a month we have a serious problem to address. (Our response - 3 headaches a week would be an improvement) b) She can't take Tylenol or ibuprofen so often or she will get bounce back headaches.

Excedrin usually works for me - nothing is really helping dh these days.

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? As if the ld's, fine motor deficit, anxiety and possible seizure disorder wasn't enough right?

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.

The school has offered to revise the IEP to include that she can wear a hat/sunglasses if needed. I just can't believe such a simple thing became so contentious. I do think I will be hiring an advocate after this experience. I think this has opened the door...

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.


After you have all the paperwork in a row, I will be surprised if they don't come around.


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.


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.


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

I don't have any advice for the school, but one of my internet friends has a slightly-older elementary-aged kid with migraines. At the advice of their doctor, they've been supplementing with:
- Vitamin D3: 1000 IU/day.
- Fish oil: 2-4 grams/day.
- Vitamin B2 (riboflavin): 200mg/day
- magnesium: 500mg/day

It's apparently worked really well. Before that, they'd gone through a slew of medications, with mixed success.

Got it. I now know you're not interested in home schooling.

I do think it's great to know about homes schooling in case you want to have something in your back pocket for your final back-up plan. I love having those;) We have, on occasion, ended up resorting to plan b, I mean c, I mean, well, okay, plan g... and sometimes have ended up really happy--albeit surprised:)

Just FYI (hope I am being helpful but sincere apologies if I am beating a dead horse here):

Often state law requires that the school still provide services (e.g. OT) to your child if they are home schooled.

In some states, a child can attend school part of the day (e.g. French and recess and speech therapy) but do the rest of the school day at home.

Some children attend school in the morning (see peers, get services) and go home for the afternoon.

All sorts of combos can be possible; it doesn't have to be an all-or-nothing choice.

Not sure what state you are in--depends on the state. The Home School Legal Defense Association provides a summary of rules for each state.

Anyhow, glad you are getting support/advice from folks who know about the topics of relevance and interest. Good luck, and let us know how it goes.

I really like the look of this protocol:

Both the vitamin D and magnesium will help alter the calcium and magnesium balance in the direction higher of magnesium, which will tend to increase the firing threshold of nerves, making them less irritable with respect to minor stimuli and decreasing the likelihood of triggering vascular spasm. Magnesium is routinely used medically to help relax muscles, dilate peripheral blood vessels, and as an anti-convulsant. Since you are dealing with a possible seizure disorder, this seems to be relevant. The fish oil acts as an anti-inflammatory, decreasing cerebral blood vessel inflammation. None of it is likely to cause side effects at these doses.