5 yr old with frequent migraines, sigh.

[raquelita]

it has been a thousand years since i have posted or even lurked but i when ds was an infant i frequently found solace here. SO now, my 5 yr old ds has been diagnosed as having migraines for about 2 years. so many doc trips..neurologist, allergist, optometrist etc. without much assistance. after intensive food journalling(even though fam doc annnoyingly poopoo'd the notion of food triggers) i found soy, choc, nitrates and sulphites to all cause headaches-which are so awful by the way. poor little gaffer is usually vomits and is down for the count for several hours. taking those foods out of his diet reduced the frequency from maybe 6 or 7 times a month to 1,  if that. i feel like there are probably other foods or additives that i'm not aware of that could be triggering and with all my efforts and research i still feel so naive about all this. we eat simple food, often organic and rarely prepackaged but ds just started kindergarten/daycare this month, which both offer what they consider to be healthy snacks and although i spoke with everyone about the foods he cannot eat(and ds is pretty good at saying "no thank you" himself) he has had 2 headaches this past week.

i'm not sure what my question is exactly....except,  anyone out there have a similar experience? advice? 

[cameragirl]

Oh that poor little guy. I started getting them at around 11-12, and they were daily. I'd be so sick and started failing classes because of it. Nobody listened or tried to help. I saw an allergist, pediatrician, neurologist, etc. Just recently I discovered that they are triggered by muscle rigidity in my neck that causes irritation of the occipital nerves.

One thing that helps me is to put ice on the back of my skull at the occiput. If I really need it, I'll get in a hot bath and use the ice on my neck/head. That draws restricts the vessels in the brain and dilates the vessels in the body, helping to relieve the pain. I also get relief from chiropractic adjustments and Solumedrol (steroid) injections in the occipital area.

Has he seen a pediatric neurologist or a neurologist that specializes in headache treatment? Do you have a teaching hospital in your area? It definitely is not normal to have such bad headaches at that age, and I'd keep trying. I know that it is so frustrating to go from doctor to doctor when you're desperate for answers.

[raquelita]

thanks a lot for your reply. it sure is a frustrating process. what causes muscle rigidity and how did you discover that was the cause of your migraines? i also started getting migraines when i was about 10 so there's probably a hereditary factor at work but i luckily grew out of them. 

we do have a ped. neurologist who specializes in headaches actually but the appointment wait times are over the top-ds  had a ct and mri 3 months ago and we don't have a follow up appt til nov. blah.  

[cameragirl]

I have a rare neurological condition called Stiff Person Syndrome. It slowly progressed, so it took 16 years from the onset of the migraines to get a diagnosis. For a long time, the symptoms were vague and nobody was able to put two and two together. It can happen without any other neurological conditions, though. That is why Botox injected into the scalp works for some patients. Although I wouldn't recommend that unless it is a last ditch effort. Botox hurts. The steroids don't hurt much at all, and relief is pretty quick.

I see the head of neurology, and wait times are kind of ridiculous. He's often out at conferences or training other doctors out of state. However, they do have a great nurse practitioner, and I can get in to see her the next day if I need to. That might be an option with that practice. The nurse practitioner handles a lot of my care so that I don't have to wait, and she converses with my neuro and other neuro doctors as needed. I just schedule a check-up with the neurologist as needed.

[flightgoddess]

Chiropractor? They might have adjustments they can do to help improve the headaches.

[cameragirl]

Originally Posted by flightgoddess 

Chiropractor? They might have adjustments they can do to help improve the headaches.

That's an option, too. Adjustments on kids are easier than on adults, so it isn't a big "snap crackle pop." They also spring back quickly, so if it is a muscle or joint out of whack, it usually only takes 1-2 visits.

[loveandkindness]

We went through this with my DD, who is now 8.  We found her triggers were preservatives, sulfites, nitrates, chocolate, soy, etc. . . exactly as you have.  Basically the same triggers an adult would have.  We also have the hereditary issue here.  What has helped us is strict adherence to avoiding the trigger foods, making sure she gets LOTS of sleep, and craniosacral therapy.  Re the foods:  she now understands the cause/effect of the foods, and is militant herself about not eating anything suspect.  I am not sure she would have been like that at 5 years, though.  Sleep:  most kids her age need about 10 hours -- she does much better on 12.  It cuts into a lot of things, going to bed at 7 pm, and she hates that her friends go places and do things she can't stay up for.  But her body just needs that time to heal itself.  The craniosacral is easy for us, since when I was working I was a therapist, and I can do it every day for her for free, but if you could find a nearby therapist it could help a lot.  Kids are much quicker to "unwind" than adults, and it would only be 10 minutes or so,  so perhaps you could work out a cheap rate with the therapist, to stop by for 10 minutes 3 times a week and see if it helps.

[raquelita]

 wow. i can't tell you what a relief it is to hear a similar story. i feel often quite judged by people when i say ds can't have this or that.  as if i was just choosing to avoid these foods on principal or making it up somehow.  i feel a little lost in the nitrates department. disheartened to hear certain veggies contain natural nitrates? do you avoid them?  i've also read into some migraine diets and they recommend avoiding any citrus fruit, nuts, seeds,  aged cheese and olives. do you do that as well?  it seems so extreme but then again, so do the migraines. sigh.

i have been thinking of both craniosacral and putting ds to bed earlier. he gets a little over 10 hrs every night but it actually seems like it isn't enough! i have been second guessing myself on that, i shant any longer.

luckily one of my closest friends is cs practitioner and it really hadn't occurred to me til recently to get him some treatments-i'm not sure why since i found a great amount of headache relief myself after receiving only one treatment. a friend of mine also recommended osteopathy, which i know very little about. 

[cameragirl]

What about MSG? I know you've restricted his diet, but it hides in things like chips, soups, broth, etc. If you have one near you, Trader Joe's is great for people with food restrictions. They have a list upfront that will point out the foods safe for certain diets. They also carry nitrate free meats, all foods are clearly labeled, etc. The prices are also better than our local health food stores.

[loveandkindness]

Yes, MSG should be completely avoided.  We get the nitrate-free meats, etc, at Earthfare, which is like a Whole Foods except cheaper.  Trader Joe's is good, but you have to be careful and read labels because not everything in their store is acceptable.

Some people avoid the nightshade family of vegetables.  I think it bothers some people but not others.  We do avoid aged cheeses, DD doesn't like olives, so that's easy, but she seems fine with nuts and citrus.  Trial with your son and see what the outcome is, or just cut it all out until he is headache free and gradually re-introduce things to test them.

Osteopathy is what I think of as "kinder, gentler" chiropractic, so it could be very helpful.  But having a close friend who is a craniosacral therapist is the jackpot!  She can really help and he will feel comfortable with her from the get-go, so that is perfect.  And yes, I think more sleep will definitely help him.  Good luck!

[cameragirl]

I would consider asking to see an allergist, or ask the pediatric neurologist to run a food allergy test. The old fashioned prick test is still the most effective. Now they combine common allergens, so it is MUCH less to deal with then back when I was tested in 2nd grade. It also is a lot less painful - just a little pinch. Blood tests are good, but aren't as sensitive. Although, a blood test for delayed allergies may be a good idea. My sisters and I were allergic to things you wouldn't think of normally - rye, peas, etc. Luckily, we grew out of the food allergies.

[happy*mama]

yes, the preservatives, nitrates, soy, msg, autolyzed yeast etc. are triggers for me too.  It's best not to eat any processed foods and to read all labels carefully.  When in doubt don't eat it.  Aged cheese, especially if I mix with another trigger.  Craniosacral therapy has helped me.  Yes, relaxation, stress-free, lots of rest/sleep lifestyle is needed and helps migraineurs.  I posted a lengthy reply to another thread about a 5 yo diagnosed with migraines as well.  You have received some helpful responses here.  My heart goes out to you and your child.
 

 

[cameragirl]

How is he doing?