New Here - 9 Year Old Daughter with Migraines, Vertigo, Abdominal, Pounding Headache

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.

sherame (beautiful name, btw) some or most of us here cannot read your msg because it is in a big block of print. we'd like to help, so here's how to fix it:

you can edit your message by first signing in, and then after every two sentences or so, put the cursor there and hit enter, so the text is broken up. i do hope someone has ideas for you and your daughter. dianne

Thanks so much Dianne. Hopefully the edit I just did fixed it so everyone can read it. Thanks for letting me know.

My heart goes out to you, Mama! I am a long-time migraine sufferer and my experience with migraines sounds similar to your daughter's as far as the symptoms go, but as a mother, I just cannot imagine watching my child be in such pain and misery and be powerless to help her. I hope and pray that you and your daughter find answers soon and a good doctor and that she gets better. Don't give up, Mom, and if this doctor is not cutting it, get a different one!

So sorry about your daughter‘s suffering, Sherame. There is nothing harder then seeing your child suffer and not being able to help.

I am sorry, we are really not being difficult, but this is one more symptom of migraine, but in order to read your whole text any block test needs to be divided. Otherwise it is really quite impossible for us to read it.

Just leave a line after pressing ENTER after each paragraph.

One important thing about childhood migraine (any migraine) is to make sure that your daughter never becomes dehydrated, but drinking something like half a glass of water every hour.
Also you might want to start doing a food diary to discover if she has any triggers which cause her migraines. Most of us, and children included, have several triggers which will cause the onset of migraine.

Some of the most popular are: chocolate, diet drinks and deserts which contain any artificial sweeteners, like aspartame. Also MSG (monosodium glutamate) which is added, as a flavouring, to most sauces and ready prepared meals and restaurant food. Cheese in any form including sauces and pizza.
Citrus fruit and drinks are deadly for some of us.
The list of triggers is very long this is why you need to start making list of all the food she has had over few weeks period so you can observe what she was eating before she had migraine.
Also she needs to eat small meals more frequently.
I do appreciate that when in pain she has no appetite at all, but she needs to drink water, since dehydration will make pain last longer.

Sadly the list of triggers is very long, since there are also many chemical triggers then can affect migraine, such a perfumes, scented soaps and shampoos etc, air fresheners and cleaning and washing materials including any OXY products and chlorine (bleach).

So it is best to eliminate all of these from your household. (You can use steam cleaners on most surfaces instead). The battle with migraine is not easy but if you can eliminate at least some of the triggers you might be able to spare her some of the attacks.

Most of us needed to change our lives to a great degree, but with right treatment and lots of determination this conditions becomes more manageable.

Actually I would be very, very doubtful about using chiropractors, because from what we heard so far here, they often do more damage then good. You need a neurologist who specialises in migraine (not all of them do BTW).

Ideally you need a neurologist who specialises in childhood migraine which often demonstrates as stomach pain. This was the case with my son, when he was little. He had abdominal migraines which as he grew up, gradually got better.

I hope you will find the right doctor for her, and come back here whenever you need to vent. It is a difficult condition to deal with, we know and we understand.
Mini UK

So sorry to read about your doctor. The lumbar puncture plus failed blood patch really really sticks out to me, even before you said she is better lying down. I would seek out a CSF leak specialist to rule in/out spinal headache. There are some special forums and groups for that but its not something I'm too familiar with (besides these sort of seemingly obvious signs). A combination of this forum and a specific forum could be helpful.

http://www.braintalkcommunities.org/forumdisplay.php/79-Cerebrospinal-Fluid-(CSF)-Leak
https://www.facebook.com/groups/31002608753/
http://www.csfleak.org/

Sometimes a blood patch is done wrong or just doesn't work (ie. failed blood patch). From my limited knowledge her symptoms could fit this. Hopefully Cheryl (Anna's Mom) will pop in as she knows a lot more about this than I do. I'd also search out a more helpful neuro who actually likes to treat headache patients.

If it were my daughter, I would seek to have her re-admitted to the hospital under a doctor who actually wants to non stop look for the cause of this. They can do some special imagining to try and see if there is a leak. They can be very tricky. It doesn't sound like migraine or just migraine (it could very well be migraine on top of the spinal headache or whatever). I agree trying supplements and seeing the neuro again in 3 months isn't going to help!

If she is as bad as you say, its a shame a chiro or acupuncture therapist would even treat her. My goodness. Especially the chiro. Hang in there! Me thinks they didn't take a complete history, just heard headache. Too many neuros even jump to the migraine conclusion. Just because you have the head + stomach + disturbance type symptoms doesn't necessarily rule it in. I was mis-diagnosed migraine for years. Best wishes.

I am so sorry to hear about what you are going through with your daughter. I am going through something similar with my 14 year old daughter. She has had chronic migraines for several years along with abdominal migraines and recently has been diagnosed as having ocular migraines. I kept food/activity diaries. We couldn't figure out what was triggering them.

She has been through an MRI, CT scan, lumbar puncture (with a spinal headache afterwards), and several different medicines. She was on one medicine (an antihistamine) for a year and gained so much weight. There were some other medications that didn't really help all that much. Now she is on topamax. It helped for a while. She sees a nuerologist on a regular basis. She went to a chiropractor for a couple of years (we really didn't see all that much difference.) The nuerologist sent her to a physical therapist thinking the pain might be coming from her neck. After just two weeks, the physical therapist said her couldn't help her anymore.

The biggest help came from when the nuerologist sent us to a pediatric gastroenterologist. This dr ordered all sorts of blood tests including food allergies. (I had asked her previous dr's to do food allergy testing, but I was told it wasn't necessary.) We found out she is allergic to peanuts. Taking her off of peanuts has helped her abdominal migarines a lot, but nothing has helped her migraine headaches. She is still having 3-4 each week. The GI dr also sent us to a metabolics dr. because of some wierd stuff in the blood test results. The metabolics dr found out she has polycystic ovarian syndrome. We are scheduled with another dr. to start treating her for this.

We homeschool, but even with homeschool, she is so far behind. Now she is having trouble retaining things and learning in general.

As a mother, it is so terrible to see your child suffer like this. I hope that your doctors can find some answers. My thoughts and prayers are with you and know that you are not alone.

I see this is an older thread but was hoping to get a reply in regards to the status of your daughter and her migraines. How is she doing?

I thought I'd post our story in case it helps anyone.

My daughter, only 9 yrs. old, was diagnosed with Migraine Associated Vertigo (MAV), I believe they also call it Vertigo Migraine.

It started out the first week in March, 2012 as an ear infection (or so we thought.) Her ears were bothering her and the antibiotic didn't take the pain away. We went back to her GP after 2 wks, but now her ear pain was accompanied by dizziness. The GP said she had labrynthitis and not to worry it would go away on it's own. A couple more weeks went by with no improvement. By this time it was debilitating...no school, no dance class, no play, etc. She was becoming depressed and I was frightened and felt so helpless. We were referred to an ENT. He believed it to be either meneirs or migraines. At this point she didn't have headaches. He prescribed some medication that only made things worse. Next, we made an appt. with a Neurologist at Children's Hospital in Denver; however, there was a 4 wk wait and during this time, the headaches came. She continued to have a 'muffled' or 'full' feeling in her ears (off and on) with sharp 20-30sec pains in a ear - 10 to 15 times a day. She would scream when this pain came in her ear (sound was triggering the pain at this time.) During this time she was dizzy 24/7 with NO breaks. CONSTANT! She was experiencing severe anxiety and never wanted to be separated from me - she was scared.

By this time I was able to monitor some triggers....
flouresant lights
malls/stores/large places
noises - music, car window being open going down the road, ticking, etc.
Concentration
Reading
Looking down
TV/computer/ipod, etc.
Tiredness (bedtime has been moved up an hr.)
Changes in weather

So after a battery of tests....EEG, EKG, MRI, endless blood tests, VNG, echocardiogram, etc. And after seeing 9 different doctors. It wasn't until we went to Children's Hospital in Denver and met with a Neurologist that we finally got the diagnoses and proper medication. She was prescribed Periactin (Cyproheptadine) 4mg, 1x a day. They said to give it 3 wks. During that time the Neurologist would call and check in (she was worried and said this was the worst dizzy/migraine case she'd seen in a child). It was exactly 3 wks when ALL of it was suddenly GONE (99% of the time.) We also followed up with a Neuroradiologist who confirmed it was MAV. She gave us a ton of information and how to control it through food and other natural remedies (this is TBD since we are slowly making changes to diet.) We've eliminated chocolate, caffeine, and most sugar. She has gained 10lbs on Periactin BUT with excercise and change in diet, she's losing it.

We are 3 months into the Periactin and she's had a handful of migraines which were relieved by laying down in a dark room for 10 min. She's experienced a handful of dizzy spells (triggered by stress or one of the above listed triggers) and ear pain (seems to increase with weather changes) but it's manageable. She's back in school, on the swim team and functioning like a 'normal' child. Thankfully we homeschool 3x's a week and she attends a private school the other 2 days, so we are able to slow down and take it easy with the school work when necessary. I'm not sure she could function in a normal classroom with the lights, sounds, demands, etc. Also, the anxiety is gone.

She also has severe acid reflex...not sure if this is related. It's controlled using Prevacid.

I'm looking into eliminating MSG and possibly having her return to a chiropractor (we made a couple visits but was not sure what to think of them cracking her neck and back.)

I'd love to have contact with other parent's for support, as well.

This past week she had her braces tightened and has experienced 2 dizzy spells, one with migraine lasting 1 hour each after laying in a dark, quiet room.

I know doctors can be doom and gloom - I've been told 'it only gets worse' and meds with need to be upped or changed....

There is hope!

In Him,
Michelle
guateangel @ msn . com

I couldn't imagine any child having such pain issues and not being able to do much to help. Very difficult.

There is also a migraine associated vertigo forum --

http://www.mvertigo.org/


Lynn

Hi All,

I am not sure if this will help you, but I wanted to post it anyway.

I got my first migraine at age 12, then had several episodes of migraine- all lasting 5-7 days until age 17. On October 28, 1997, my world changed completely when i got a migraine that has never completely gone away. I have been told by some drs that my headaches have more in common with some of the pediatric migraine types than the adult migraines.

In many ways, I was fortunate that I was attending boarding school in Baltimore at the time and eventually treated by some really great pediatric neuros at Johns Hopkins. One thing that we discovered by chance was the fact that I have low blood pressure/ POTS. This can make you dizzy and feel like you are gooing to pass out. I was just wondering if your daughter has been checked for this. It can't hurt to look into it, especially with all she has been through.

Pain free days,
sailing

Does your daughter feel better when she lays flat?

Does she feel better if she is laying down and her legs are more elevated than her head? No pillow under the head and pillows under the lower legs and feet. She may have to lay like this for a few hours, to give it a good trial. My daughter laid in bed like this for a two week period of time, as a request from her neurosurgeon. That sure was hard!

From her story, it seems that your daughter developed head pain HA after a lumbar puncture. Blood patches don't always work. The fact that one blood patch didn't help her doesn't mean much. There are patients with CSF leaks who have been blood patched many times, fibrin glued many times, and finally surgery is called for to try and repair their leak/leaks.

If the problem is a CSF leak, nothing will help head pain much long term until the leak is sealed. Leaks can be very difficult to detect. Diagnosis and treatment for a leak with neurologists is pretty shaky because the whole thing is so very tricky.

I would suggest you copy and paste your post here:

http://www.csfleak.org

This is the most active and most knowledgeable CSF leak forum. "Frankly" is the most knowledgeable poster on the forum. If she answers you, take note of what she has to say. She has been a big help to me during the past year.

My daughter has had two big CSF leaks due to surgical complications.

I wish you both the very best!

Cheryl