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Pemberley, have you looked into possible environmental causes of the migraines?

Does the school have a mold issue? Has carpet recently been installed? Do they clean the carpets with noxious chemicals?

It's worth looking into.

I don't remember what the dose was and I threw away the pill bottle. I just remember the neurologist saying it was a low dose. Tylenol did not work well for my son either. Ibuprofen worked better but we were afraid to give it to him so often. His headaches got worse around the time he turned 11 and started puberty. He was getting them almost every day during times of frequent weather changes. He took Tylenol for his migraine the day he was tested by a neuropsychologist in one all day long test. I remember telling the neuropsychologist that some of the test results did not make sense to me and wondered if his migraine might have caused some of the crazy results. She said she didn't think a headache would affect the results that much. She diagnosed him with dyspraxia along with dysgraphia. I agree with the dysgraphia but I have trouble understanding how a kid with a motor learning disability can play piano only during his once a week lessons and still make progress and how he could learn a dance and sing well enough that the group he performed with last year won a talent contest. He had to sit out and watch at some of the rehearsals, so he didn't get as much of the kind of practice that would develop motor memory as the other kids. He had to also use visual memory. It is only on the days when he has headaches or right before getting one that he has trouble. When the piano teacher hears that the weather is changing she doesn't even expect us to show up. It really doesn't do any good for him to try to work through something that requires motor skills when he has a migraine. For some reason his migraines don't affect his speech as much. Even with a migraine he can speak very well and several people told us after his last performance when he had a migraine that they could hear and understand him better than most of the other kids in the theatre group. I have trouble talking when I have migraines. I still read to him a lot and I sometimes say the wrong word or pronounce words wrong and it only happens when I have a migraine or if I am about to get one. I didn't talk very much as a child because I had anxiety about possibly saying something wrong and I hated reading out loud for the same reason, but I did very well on written tests and was always in the highest reading group even though I was always one of the youngest kids in my classes.

My son also has more than one disability to deal with and it is hard to watch kids going through so much and not being able to help with the pain. My son worries about taking pain medication since a family friend died from an accidental overdose of pain medication. He also knows about possible side effects because he looks up medical information on the internet.

Since we homeschool it is easier for us to work around the pain. I don't think my son could handle going to our public school.

Yesterday, my husband took off a day of work to go with us to our state capitol for homeschool day. My husband and I talked to our state representative about the problems we had at our public school and why we had to homeschool and why we needed to have the freedom to homeschool our outside-the-box child without worrying about government regulation. We told her how my son started kindergarten at 5 with a May birthday already reading a a 5th grade level but that his disabilities made fine motor tasks difficult. My son could not get OT or PT in kindergarten for his disabilities because he was not failing and then later he ended up with disabilities that cause chronic pain. She didn't say anything about changing the state laws so that kids like mine could get OT and an appropriate education. She just said she agreed that homeschooling was a good thing and she supported our right to homeschool.

 

Well, OT and the rest of the services your son needs would cost money to provide. The rest... You homeschool and still pay taxes. Neat benefit to the state, right?

Sorry, feeling cynical today.

Yay to the OP for the hat victory.

+1 everyone about the nurse. She has no business modifying drug protocols for your daughter. You need a doctor's letter, and then escalate if she still won't follow instructions.

Advocate, good idea. It will keep them on their toes.

Quick update:

DD went to the nurse with a headache again today but this time asked to go back to class after about 20 minutes. (Still got Tylenol...)

DH has decided to try the combo Alexsmom suggested! Aculady's explanation makes so much sense. Now to run to the healthfood store to get everything on the list. Crossing my fingers for him - he's been in a really awful migraine cycle lately and nothing is helping him.

Thanks forumites!

Have you talked to the Principal about this woman giving her tylenol every day? I have to seriously repress the urge to come through the computer and find this nurse and slap her upside the head for you.

Have you tried feverfew for migraines? I know some adults who've used it successfully, but I'm not sure it's suitable for children.

I'm sending your dd a big hug Pemberley! I have migraines occasionally and even as an adult they are beyond bearable so I can't imagine what it must be like for a child to have to deal with them. This is lame advice and perhaps something you've already tried, but I find drinking a Coke helps mine just a tiny bit because the caffeine opens up the blood vessels that are constricting in the brain during the headache.

Re the school nurse, I would *write* an email and send it to her every single darned time something happens that is an issue and keep a copy of all the emails. We had quite a struggle with our school nurse when our dd (seizures, food allergies) was in early elementary - when our dd had allergic reactions at school and went to see the nurse she was turned away and sent back to class and told to come back 20 minutes later "if she still had hives"... of course she never went back - she hated the nurse! In first grade dd had a seizure at her desk and passed out - her teacher panicked when she couldn't wake her up and ran screaming from the room to get the security guard to come in and try to wake her up, she also couldn't wake her up (for anyone reading who's kid has never had a seizure, this is all really ok, it's what happens to my dd after a seizure and she wakes up about 20 minutes later)... anyway... eventually the school nurse called me just to let me know "everything's ok but your dd fell asleep in class and maybe you should come get her". You know, as a mom of a kid with seizures, I didn't panic and wasn't really even concerned, was definitely not going to rumble into the school throwing out accusations or anything - and I was met at the door to my dd's classroom by the nurse who made a huge point of telling me "Your dd is fine. There is nothing wrong. She did NOT have a seizure. She fell asleep at her desk. She's FINE. She did not have a seizure." (repeat on and on and on). I know from what everyone else told me - she had a seizure. I know from what dd told me - she remembered having her aura (tingly arms and legs and then going to sleep). I wasn't worried about it. Why on earth did the nurse so adamantly deny it? Maybe she didn't want to have to fill out a report, maybe she was worried that we might say something that happened at school had caused it - who knows. It was ridiculous. Another time she had a bad allergic reaction with severe stomach pain when dh was already on his way to school to drive on a class field trip. Once when the nurse was out I got a call from the school telling me the TA had brought dd to the office and she was lying on the floor screaming in pain and what should they do. I told them to give her her antihistamine ASAP and if it didn't help, give her her epipen - all written down on her IHP that was on file at the school (meds and symptoms). School called back and told me they couldn't do it because she really wasn't having an allergic reaction. DH showed up about that same time and just gave her the meds himself and she was fine - which meant, um, yes, it was an allergic reaction. Imagine what would have happened if it was a severe anaphylactic reaction?

Oops... I'm starting to rant about my dd's school nurse instead of writing anything supportive or helpful for you and your dd - sorry about that! Clearly I have some issues to let go of - lol.

polarbear

Wow polarbear - your story reminds me that things can be soooo much worse. Actually a mom I ran into from dd's terrible school last year is suing because the nurse refused to administer an epipen in the midst of an anaphylactic response. (Kindergartener with a peanut allergy was given a peanut candy as a reward by a teacher.) Despite clearly written doctor's orders the nurse flat refused to do it. Mom ran to school, administered epipen and called pediatrician who had an ambulance meet them enroute to the hospital. The kid is ok but really? Her son clearly could have died...

Anyway I am sure we will be able to address this with the nurse it just will take a bit of time. I still haven't heard back from neurologist's office but will try them again this afternoon. Once we have a clearly written note and others familiar with dd step in to help explain how to read her happy demeanor I assume all will be ok. Well, maybe too optimistic but I have to hope. The nurse was actually pleasant to me on the phone when she called and I think dd asking to go back to class is a good sign.

Only one more day to the weekend when she will hopefully be headache free. Then one more week until February break when she will hopefully be headache free. By then maybe the Elavil will have kicked in.

We have tried feverfew but I don't know how consistent dh was with taking it. I am hoping if he gets miserable enough he will stick with the supplements. Well, he's definitely miserable enough. Maybe I can get dd to help with this - she would love to remind daddy to take his pills when she has to take her Elavil. Hey... that's a really good idea! I love when I come up with great ideas as I sit here typing

The state I live in is 49th in per pupil spending and our state constitution mandates a balanced budget each year. There is no money to provide services for smart kids with disabilities like mine who can find a way to make it on their own without government help. I used to be really angry about having to pay taxes so all the other kids could get an appropriate education in our public school until I realized that so many of them were probably not getting the education their parents thought they were getting. My son's cousin made straight A's and got a football scholarship but struggled academically because he was not adequately prepared for college level work.

At home, my son spent his elementary years reading classic books and books on economics, history, science, psychology and sociology. When he was interested in neuroscience he studied using free online sources. He did not get OT but he got lead roles in musical theatre which helped him feel comfortable speaking and acting in front of an audience and he learned that the show must go on even when you don't feel well. He learned to work as part of a team with other cast members and to improvise when something didn't go as planned.

If he had been in our public school he would have been loaded down with homework that would have taken him much longer to do because of his dysgraphia. He would not have had time to do musical theatre or piano. He learned much more at home than they would have taught him at our public school.

I forgot to add that my son also drinks a Coke with his ibuprofen/pseudofed. His pediatrician suggested taking caffeine. I usually drink a cup of coffee when I have a headache and it helps.