Sapphire’s Neurologist Appointment

Saff has had pretty bad headaches for a while now, but they got really bad about a month ago. She ended up in the ER, twice, and then had a follow-up with her amazing doctor, who referred us to a pediatric neurologist. Usually, you’d have to wait a few months to get in and be seen, but because she had been in the ER, it was seen as an emergency and her appointment was today. So thankful for that!

saffneuro

The neurologist diagnosed her with chronic migraines, and gave us a plan – and rules to follow. She has to keep a headache journal – how many times each day she’s had a headache, and what she ate 8 hours prior to the headache to see if the triggers are the same. We went gluten-free about 10 days ago, and she’s been headache free for 3 days (they were constant). It could be a coincidence, or it could be helping. Either way, we’re going to stick with it.

The “Rules”:

Get 8-9 hours of sleep each night – not more. No naps! — This one is going to be difficult, as she wants to sleep all the time.

Eat regular meals. — Again, difficult because she isn’t hungry most of the time (because of the headaches).

Exercise. — Difficult because of the sleep interrupting it, but she does have gym, recess, etc and she does play outside at home so it should be okay.

Drink plenty of water. — This is the easiest one because she drinks water all the time.

Limit Caffeine. — No issues here. :)

Reduce stress. — This is going to be the most difficult because she gets stressed out very easily. The neuro said it could be because of her ADHD, but setting up a better schedule will help reduce the stress.

The Visit:

The visit went well, though I can’t say I love the doctor. He did seem to know what he was talking about. He was very fast. He spoke fast, he moved quickly, etc. He said he was speaking to Saff so fast because that’s better for kids with ADHD (makes them pay attention?).

One thing that I didn’t like was that when he found out we don’t vaccinate, instead of continuing to talk to me, he turned to Sapphire – keep in mind that she is seven – and said “Well I sure hope you don’t die from one of those diseases your mom didn’t protect you against”. Errrr. She’s seven. You didn’t ask why we don’t vaccinate. You didn’t tell us why you think we should. You just told my child you hoped she didn’t die because of our choice. If she was 14, I could see that.. but seven? No. Not cool.

He also said that she was overweight, or creeping towards it, so he wanted us to make sure she got in lots of exercise every day. We’re going to sign her up for dance class in a few weeks. That should help.

What’s Next:

We have a follow up appointment in 4-5 months to see how the meds are doing, and he will look at her headache diary at that time. He ordered blood work because he wants to test her thyroid, test her for anemia, etc. We should have those results in about a week. He prescribed her Topomax and Naproxen. One is preventative, the other is to be taken at the first sign of a headache.

All of this is pretty overwhelming right now, on top of the ADHD/ODD/Asthma/Allergy stuff, so we’re just kind of taking it one day at a time. We cut out gluten, red/yellow food dyes, high fructose corn syrup, and lots of processed foods. I’ve gotten a lot of emails and PMs with support, and am very thankful for them. If you have any questions, feel free to ask and I’ll try to answer.

Comments

  1. Beth P says:

    When I went gluten free, I did not know right away that meds can contain gluten. My pharmacist is really good about checking for me every time I get something new. I hope the headaches stay away! When I was young, I kept a food journal also and found that peanut butter triggered most migraines. Now I am mostly migraine free because I am gluten free and have also learned to avoid processed corn and a few other additives.
    Beth P recently posted..This second pregnancy is tough!My Profile

  2. I was on Topamax for a while for headaches. It made me feel groggy and loopy and very, very sleepy while I was on it. My MIL suffers from migraines and chocolate and mushrooms are big headache triggers for her but of course I know that will be different for everybody. I don’t get headaches like I used to. They are mainly menstrual headaches at this point. I wish Saff all the best and hope she gets rid of these things. Headaches are horrible.
    Angie Bailey recently posted..Perfect Summer Mini Candles at Bath & Body WorksMy Profile

  3. Tracie says:

    I have migraine horror stories that I am not going to go into here in your comment section. But I do want to say, knowing the pain, that it is awesome she has been free of them for three days. I hope that continues as you work this plan.

    The vaccine thing was absolutely not cool. I would not have been pleased with that at all.
    Tracie recently posted..The Darkest ValleyMy Profile

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  1. […] as big of a transition as I had thought it would be – except when it came to eating out! Saff’s headaches have been gone for three days, and while it could be a coincidence, it could be the diet change, […]

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