9 Year Old Daughter with Constant Headache and MAV, Migraines, Abdominal Migraines

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Date Joined Mar 2012
Total Posts : 1
   Posted 3/12/2012 11:10 AM (GMT -6)   

Hello, my name is Sherame, pronounced like Jeremy with an S. My 9 year old daughter Lily was hospitalized in October 2011 when her red and white blood counts and platelets went dangerously low. She had severe vertigo, was extremely off balance and needed assistance walking everywhere and was extremely fatigued and lethargic. They tested her for all kinds of infections and did 2 bone marrow biopsies and a lumbar puncture. They never found out what it was but believe it was some type of infection that possibly cleared from the few days she was on antibiotics prior to going into the hospital or a virus that cleared on its own. She was dizzy and off balance for a total of 3 weeks. She was in the hospital for a week and was released the day after she had the 2nd bone marrow biopsy and the lumbar puncture. She was home for a few hours and then threw up and developed a terrible headache. We thought the lumbar puncture didn't heal because the headache was better when she was lying down, in fact she couldn't sit up for a week and a half. They did a blood patch but it didn't help. She rated her headache as a 9-10 out of 10. She spent the next month trying to get back to school and seeing a psychologist since the neurologist said there was no reason she should still have a headache and said it was anxiety. Around mid-December her constant headache had gone down to a manageable level of 5. In January she was back in school full-time and had resumed most activities except for exercise. Then January 22 she suddenly became dizzy, off balance and fatigued again. It lasted for 6 days. Her headache remained a 5. We saw a different Neurologist who ordered another MRI since she had a pallet expander in her mouth when they did the one in the hospital. They found a thin Superior Semicircular Canal Dehiscence and sent us to the ENT. She had already had a VNG test that was normal, but she scheduled a CT Scan, VEMP, and hearing test. The VNG, VEMP, and hearing tests came back normal. The CT Scan showed a thin Superior Semicircular Canal but since it was fully intact she didn’t think it was causing the problems. She referred us back to the Neurologist and said she thought it was Migraine Associated Vertigo, MAV. On Feb 18th her headache became an 8 and was pounding like someone was hitting her in the head with a soft hammer. This lasted 3 days and she was in bed the whole time and very fatigued. We saw the Neurologist on Feb 29th and he was not really helpful. She had been on Fluoxetine, 10 mg for 3 months and he said to continue that. He also told us to give her 250 mg of Magnesium daily and 400 mg of folic acid in addition to the 400 mg already in her daily vitamin and gave us a sheet of migraine triggers. She had a migraine while we were waiting 2 hours to see him and she slept the whole time until he examined her. On March 4th she developed tummy problems and her tummy hurt for 4 days straight and she was very fatigued. She had 2 days with nothing other than the constant 5 headache and then yesterday she suddenly became very dizzy, off balance, and fatigued. She has missed a ton of school since September and is out again today. She can’t even walk to the bathroom without assistance. She falls straight back is you are not holding her. She has the normal 5 headache. Do you think she could suddenly have MAV, regular Migraine headaches, and Abdominal migraines  all in addition to the constant 5 headache??? She has not had one headache-free day since 10/19/11. I am at the end of my rope. The Neurologist told us to make a follow-up appointment in 3 months. Are you kidding me???? We have already seen 2 pediatric neurologists at Shands Teaching Hospital in Gainesville Florida and they are supposed to be really good. Oh, we also tried acupuncture and it didn’t help and she is scheduled for her first chiropractic adjustment today. Any thoughts??? Thank you so much.

Post Edited (Sherame) : 3/12/2012 10:26:22 AM (GMT-6)

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Date Joined Dec 2008
Total Posts : 2386
   Posted 3/12/2012 12:17 PM (GMT -6)   
Sorry mods, I'm going to give a medical opinion here.

Your daughter, with what you have said also has evidence of auto immune diseases. Going to a neurologist and rheumy and ent at a teaching hospital would be wise.

My migraines were like that for awhile, but it turned out it be an inner ear infection at the same time, hence the ENT doctor. But with the white and red cell counts you will need a rheumy to address that. The neuro is the one who actually does migraines. Migraines have many triggers. Write down everything she eats and drinks and when a migraine comes on. Take that to all your doctors. They will ask you anyways, to write it down, so therefore be prepared in the beginner. Also, try to get your daughter a full MRI. If there is anything like inflammation it will show in a MRI.

My migraine triggers are lack of sleep, bananas, chocolate, too much soda pop, coffee, stress, inflammation, illness (like when I have a cold, I tend to get migraines more)
Since I know what my triggers are, I avoid the food/drinks expect soda, I do that in moderation cuz thats my wake up caffeine. But I only will drink one two cans a day. I found if I go past 32 ounces of soda it causes migraines. I also make sure I get plenty of sleep. Every body is different. I need 9 to 10 hours a night of sleep or I get a migraine. If I dont get that, I wake up cranky, headache, nauseated. If that happens, I go back to sleep and usually feel better after the catch up on the hours I need.
It sounds like she misses a lot of school, have you considered home schooling? With home schooling, you can set your own hours as long as you meet the requirements of study. So say if the mornings are best for her, do only mornings. I know a family whom home schooled their kids all the way til they were 18. But when they hit high school, the mom made the kids to have one to two classes at the high school, to give them social interaction. Social interaction is the only down fall of home schooling. However, you can do things to give her it like takin her to a friends to play, sleep overs, youth groups, so on.
Please keep us posted. If you need anything my email is amerewildhost@gmail.com
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

New Member

Date Joined Mar 2012
Total Posts : 1
   Posted 3/12/2012 8:37 PM (GMT -6)   
As a mother and a migraine sufferer from childhood I can only offer you hugs and some ideas!

I JUST came out of one of one of the worst pretty much constant migraine cycles in my life and I had to do some pretty extreame things to get out of it! Keep in mind i am a life lond sufferer and have tried many things before this so that changed what i tried this time around!

Diet- Try a strict form of the Migraine Elimination Diet- its hard i am not joking i am doing it now -and blogging about it to help others -www.migrainemidset.blogspot.com- but it does seem to be working, it took a couple of weeks but it gets better and better! onions, peanuts, yogurt, cultured dairy like sour cream, plums, raspberries, bananas, broad beans, and more all have tyramine or other known triggers for people with migraines. on my blog i also have a list of supplements i take- your welcome to email me about them as i am short of time tonight!
other ideas things that have worked
magnisium infusions - these are prescribed by a doc- 2nd best is magnisum oil sold by radient life or on amazon get the around 30ish dollar one it really helps!!
butterbar- takes a couple weeks approved for children- brand is also on my website- only get that brand as it is purest kind available seems to really help
teas- i sell teas that would relieve pain make her feel better but she is in so much pain idk
when i was her age i was on amatriptaline/normatriptaline as a preventative- made me really drowsy but worked pretty good
i would avoid topomax the side effects are terrible and it makes you really dumb you cant think!
riboflavin and b vitamin complex might be a good idea- really helped me

buy a homeschool curriculum! there are some really easy to follow ones out there, i missed a ton of school as a kid too. you can supplement or just scrap school for a while. You can also take a medical leave from school and they have to provide a tutor if the doctor says she is too sick to come to school. i am pretty sure
hope this helps a little good luck mama!
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