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    Default 12 year old never-ending headache

    My daughter just turned 12. In November I took her to a neurologist for a headache of 3 weeks. They admitted her to children's hospital straight from her appointment . They did an mri which was negative. And tried alot of drugs..none helped. Here we are in may and she has never had a day without a headache. About 4 days a week they are extremely painful. She has no sensitivity to light. They are always worse behind the eyes. Laying down helps but just a little. She has a supraglottic hemangioma that has required 35 surgeries and as a little one had benign recurrent sixth nerve palsy. Her ENT said all is normal in sinus and ears. We are at a loss as she is so uncomfortable. There has been no further evaluation with the neurologist except her mri in November and trying drugs. Has anyone heard of anything like this..... so recap....constant headache. ..never goes away but can get more dealable somedays...pain behind eyes and in head. Sometimes feels very off balance and sometimes when it's really bad she gets blurry vision. ...she is incredibly smart and is in gifted classes. .she pushes through school barely. ..and crashes when she gets home. Someone please help!!!!!

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    I'm sorry your daughter is in so much pain. I don't know much about headaches. The only things I could think of it being would normally show up on an MRI. Maybe you could go back to the neurologist and ask if she is having a central vestibular problem instead of an ear issue, that might explain the being off balance at least. Sorry I can't help more. Best of luck and I pray the pain stops.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
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    ((((((Marlesmom))))))

    To Child Neurology!

    What an ordeal for your daughter and how frustrating to not have an answer to the cause of your daughter's unrelenting pain. I'm so sorry that she and you are going through this.

    I don't have any experience in this area, but I've been trying to think of what could be triggering her headaches.

    Has she had her vision checked? Seen a neuro opthalmologist?

    How about blood work to determine an imbalance in hormones (especially since your daughter is entering puberty)? Thyroid and adrenal glands? Vitamin deficiency?

    Have allergies been ruled out? (Food or environmental)

    Does your daughter seem stressed? Could it be stress-related? Is she pushing herself too much to excel in school? How is her social life?

    So many things can cause headaches. It might just be a process of looking outside the box to find the culprit.

    We're glad that you found us and joined our family here. I hope you will stay with us, as we're here to listen and support, and share our experiences. I look forward to learning more about you and your daughter.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Thank you to everyone who replied! I am new to this and couldn't figure out how to send a message back.. ( had to sign in...duh...) Marley has an appointment on the 11th with a new neurologist at st. Christophers. ...to answer some questions. ...she had a neuropthamologist as a small child but we haven't gone back since the problem resolved. Waiting for an appointment there as it has been so long she is considered a new patient and first available is in August! As far as stress ....just from headaches. Fortunately she is very smart and school is easy for her academically. .too easy...but that helps when it comes too all these headaches. We did take her to a psychologist for an evaluation to see if stress....or anything else could be the case...expecially since she has already had 35 surgeries on her airway....they gave her a clear....I will ask for them to check for the hormone related things.thank you for the idea. As far as allergies. ...since November we have kept a complete food log and have done an elimination diet (not easy by the way) could find no triggers or anything that made a difference. .unfortunately! This is so hard to watch her suffer. As far as friends she has some great ones and tries her best to still hang out but has to say no alot of times because of the pain. Her Odyssey of the mind team is going to world's in iowa the end of may and I'm not sure how the plane ride...noise and all are going to be? We have also tried acupuncture. ..no help for her but getting a sitter and spending a half hour in a quiet room away from my 2 year old was wonderful! ! This has been a journey! I always loved and depended on children's hospital. ..we have spent so much time there and love her docs! Until neurology did an mri and a cbc...and said her migraines aren't typical ( no light sensitivity. ..never ending. .no triggers that we can find) but all they wanted to do is chalk it off as migraines and give her drugs and not look further. My motherly gut tells me something else!
    Thanks again

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    Marlesmom, First welcome to CN. This is a great group and can be very helpful. My name is Mary, I have a daughter Kathleen. She was born with Down syndrome but at almost 5 years old she was waking up crying everyday,we now know she was having headaches most likely. She didn't have the language to express what she was feeling. Then she started to have balance issues Started to look "drunk" at times. She had just gotten over an ear infection so our first thought was an ear problem but wasn't that. Then checked thyroid (can also casue balance issues amongst many many other problems) Not that... She finally couldn't walk. Ended up at the ER. An MRI/MRA (MRA part is very important since it looks at the vascular parts of the brain ). Do you know if hey did and MRA it's not always included in the MRI. Also the technician needs to know what they're looking for to diagnose. I also realized over time that the neurologist doesn't always look at the scans themselves but just looks at the report from the technician. Now I ask that the Dr. actually look at the scans. She had suffered several small strokes and luckily we had a neurologist who had seen this before, she was diagnosed with a very rare disease moyamoya. Most Dr.s shrug off the possibility of strokes in children and have no idea what moyamoya is or how to diagnose it. Like you I listened to my mom gut. This is probably your most powerful sentence that your motherley gut says something else. Keep at it... We have since had several other health issues diagnosed. She's 19 now. Every one of these health issues took a lot of digging and a lot of persistence on my part getting dr.'s to keep looking. Her belly issues were not stress like some thought (only because they didn't know what else to say), It turned out to be Celiac disease. This is another disease that's very often overlooked because Dr.'s think there has to be GI issues, it can cause headaches and a very long list of other symptoms. It's an easy test just a very specific blood test. Just because they don't see anything doesn't mean there's nothing wrong. You know your daughter and know when things aren't right. Another idea since you mention her eyes has she been examined by a good pediatric eye Dr. Dialation with and exam, they can see a lot when they dialate their eyes.
    Praying that you can get this figured out...Please keep us posted.
    Mary Grace

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    Thank you for responding! No they never did an mra...just spoke to the original neurologist. ..she said take her to the ER and make an appointment with her maybe they need to do another mri? When I asked about other testing or reasons for the headache. ..she said her family doc would be better at assessing those things and since her MRI was negative all the bad stuff Is ruled out!! UGH! !! I will just hope she can wait it out until the new neurologist appointment on the 11th....she does have an appointment with her old neuropthamologist in August and maybe this new doctor can get her in sooner...I feel like I could get a medical degree from researching all her medical problems since she was born...it goes back to birth when I knew something was wrong with her breathing and her pediatrician kept brushing it off as something she would grow out of...well I took her to the specialist on my own out of pocket and thank God I did! She might not be here now if I didn't push it as her doctor said! We are blessed that she has come as far as she has without terrible side effects of so many surgeries in her airway. But this whole headache thing has thrown me for a loop. I want her to feel better I just don't want to cover something up with drugs that can cause other things without having an explanation when things don't seem right.....thanks for listening kriss

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    Marlesmom, Wow I hear you! I think a lot of us here can say we could practically get a medical degree with all the medical stuff we deal with daily. One thing I've learned is no Dr. knows everything. If she has another MRI maybe you can ask to add an MRA. this can see vascular things that the MRA may not show. Also as Rose said some testing for hormones and vitamin levels, Celiac disease. Hard to believe a neurologist would push off a young patient with headaches like your daughter's. I know what you mean about just masking things with meds. Lots of Dr.s want to do this but before giving meds I want ot know why something is happening. There's always a reason. My daughter had chronic constipation and they kept giving her more and more laxitives till she had no control. I finally got her to Boston Children's hospital for special tests and they found that parts of her intestines weren't working. No amount of laxitives were going to make them work. I'm not sure where you are but have you looked into a specialized children's hospital? Maybe a bigger neurology department? We've had to resort to traveling for some better health care. Let me know if I can help with any questions...

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    ((((((Kriss)))))) ~

    That's our mantra around here: Trust Your Gut! You're definitely among friends here at CN. We all know the frustration of mysterious issues, which doctors can't diagnose, and putting on our Detective Hats to try to figure it out ourselves. Like you, we all deserve an honorary medical degree!

    It's so exhausting, when "everything is normal," yet you know something is NOT normal. And you're so right that shoveling meds into our kids doesn't solve the problem of why they need those meds!

    My dream doctors are the ones who say, "I won't quit looking until we figure this out." They are rare, few and far between.

    I'm praying that the new neurologist is a dream doctor, who will press for an earlier appointment with the neuropthalmologist than August. That's way too long for Marley and you to wait.

    All of this, and you have a 2 year old! Bless you!

    Be sure that you take time to take care of yourself. You're important, and you need to be healthy.

    Stay with us and join in our conversations. We're so happy to have you with us.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Thanks for all the support! It's nice to know people get it! Things here are always pretty crazy! My husband and I started very young and we have a 21 year old graduating from college going 1200 miles away for a paid position to get her PhD in chemistry! (She was a preemie born 9 weeks early) so we are so proud! My son will be 14 this summer and Marley just turned 12....and I call our daughter Linden...my happy surprise! Having a 2 year old keeps you young and exhausted! Two year old so and doctors offices and hospitals is an interesting experience to say the least....thanks for reminding me too care for myself I think us mothers tend to put ourselves last...hard not too. My husband asked what I wanted for mothers day...my reply.......SLEEP IN past 6:00...no cooking...and no dishes for the whole day! I also added that does not mean waking up the next day to all the dishes from mothers day! So I hope all of you mom's can figure out your mother's day wish and it comes true! We have an appointment on Monday with Marley s airway specialist..I love this doctor so much! So I will talk with her about maybe calling the eye guy and getting her in much sooner. We will most likely be setting up another surgery and I would like her head to feel better for that because her surgeries can be painful in themselves. So fingers crossed that next week will be a more positive...fact finding..and better doctor care! Thanks again everyone! It's so nice to not feel alone!
    Kriss

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    ((((((Kriss)))))) ~

    Wow, you have a full plate!

    Congratulations to your daughter on pursuing her PhD in chemistry. That's quite an accomplishment!

    I love your request for Mother's Day, and your very keen insight that you don't want the dishes in the sink the day after Mother's Day! Good one!

    I hope your get your Mother's Day wish, and that you do have some time to rest and pamper yourself. You need to do that. It really is important.

    And you are not alone. We're here. And you can always count on us to be here to support you.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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