Feeling abandoned by migraine "specialists"
My 12 year old daughter has been suffering from migraines for the past 3 years. On October 7, 2014,she started with what we thought was a regular migraine. Because no home remedies, ie, preventative and maintenence prescription medications, were working, we went to the emergency room for a migraine cocktail. We left after the cocktail with my daughter mumbling that her headache was a zero. However, the next morning she immediately had a migraine. After 2 more trips to the er for more cocktails and supposedly zero pain after the cocktail only to wake up with the same pain level, I asked whether or not my daughter was suffering from the same migraine that started on Oct. 7. I was told that because she left the er saying her migraine was gone, it was a new migraine. I talked to her neurologist who put her on imitrex for immediately when her migraine started. W tried that a couple of times, even to increasing the dose from 50mg to 100mg twice in 4 hours. Still nothing was helping this migraine. Finally, at the end of October after being in the er 4 times in a week, I demanded that my daughter be admitted so that she could be monitored after the cocktail to see what happened with her migraine. After 5 days in the children's hospital, being treated with constant cocktails, depekote, steroids, and IV magnezium, we were basically told "this is all we can do for you, go home" even though no progress was made in reducing my daughter's migraine pain. The doctors went from being concerned about my daughter's migraine pain number to saying the number doesn't really matter because it was all relative. So they wanted to focus on functionality. I explained that I was not overly concerned with functionality since my daughter had been functioning perfectly well for the whole month of October. We were still told there was nothing more they would do except to refer her to behavioural and psychological support because she MUST be depressed or stressed out which was causing the migraine. Before the hospitalization I knew my daughter was not depressed or stressed, so was not happy with this diagnosis. But now, after being told that nothing could help her, she is fatalistic about her pain and fights in trying anything because she's "just going to live with this pain the rest of her life."
We met with a "headache specialist" who said there is nothing to do but wait out the headache and to see her back in 4 months, and to meet with the neurology behavioral specialist.
Since then my daughter's pain level has increased, with the pain moving into her eye. We again tried a cocktail which did nothing. We contacted the "headache specialist" and was again told we had to "wait out" this migraine.
A 2nd MRI/MRA was done before the hospitalization but was suboptimal due to my daughter's braces. A previous MRI/mra had shown an abnormal configuration of being which were determined not to be a problem. However, the new MRI/MRA could not see these veins because of the braces but no one seems to want to do a new scan without the braces.
I feel abandoned by the doctors and specialists. I cannot believe that my 12 year old daughter has to be in constant pain. As of this week, my daughter has been in pain for 2 months straight. She is missing a lot of school because of this migraine.
Is there anyone who has had this kind of experience? Are there any other treatments that can be tried? Can anyone help?
Marian
Hi Marian,
I am so very sorry to hear you and your daughter are going through this. Unfortunately it's not uncommon for adults and children alike to go a number of years without a correct diagnosis. Let's see what I can do to help.
I've not experienced this with my children. But do understand as both my children (who are now 25 and 19 years-old) have migraine. It's awful to see them and pain and not be able to make it go away.
Of course it's a different story with me. I've been to so many doctors I've lost count. If doctors are unable to help us, I really wish they would recommend another one who can. I think you will find plenty of information on our children/adolescent page; https://migraine.com/migraines-in-children-and-teens/.
Not many of us are aware of the fact that there is a huge difference between doctors who say they are 'headache specialists' and doctors who truly are. I didn't know this until I became a patient advocate and educator. So here's the deal - neurologists may be fine doctors but have a difficult time being experts in one area. This is because they treat so many different conditions such as stroke, multiple sclerosis, epilepsy, Parkinson's' and others. Even though a doctor may treat many patients with migraine/headache, it doesn't' make them a genuine expert.
A true migraine/headache disorder specialist is typically board certified in headache medicine and treat this condition all day, every day. Let me share information on what makes these doctor so special and how to find one; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/. You can also find a list of migraine experts who treat children in this link; http://www.migraineresearchfoundation.org/pdf/Childrensheadachecenters.pdf.
Please keep me posted on how your daughter is feeling.
NancyNancy, thank you for your response. Unfortunately, fortunately?, of the list you sent me of the "true" headache specialists, we have already been seen by one, Dr. Cleves, and have spoken with another, Dr. Kanieki, both in Pittsburgh, PA. Dr. Kanieki isn't taking any new patients until I think it was February or March next year and Dr. Cleves was the one who told us to wait it out, there nothing we can do to help and come back in 4 months. So, fortunately, we were referred to the right specialist from the start. Unfortunately, they're the ones I'm most frustrated with.
I've gotten my daughter's pediatrician to order a bunch of blood work, including a basic lupus screening to see if anything abnormal turns up, which is something the specialists seemed reluctant to do. I also asked my daughter's orthodontists to consider performing jaw surgery now rather than many years from now and to try to get the insurance company to cover it. They have also changed her brace treatment so that my daughter no longer need to use bands on her braces, thus reducing the length of time she'll need to wear them. I feel somewhat better now that I've got two medical professionals who are willing to try different things to help my daughter.
And basically, that's all I wanted from the specialists. To listen to me, believe what I tell them about my daughter and to try some alternatives, whether they feel the alternatives will work or not.
We'll see what happens from here. Thanks again and I'll update this as things change.
Marian
Gosh. And I thought I had it bad. I hate to see kids with this disorder. Its so hard, even with adult coping mechanisms.
It sounds like you haven't even started with alternative therapies. If I had a kid in this situation, I'd start by looking at the school lighting. I know that sounds weird, but the school lights can be brutal and wearing a cap and/or sunglasses inside is such an easy fix (just make sure you talk to the school about what you are doing.)
There are some very safe herbs out there for kids. You don't need to wait for the headache to subside to start. I would start with a formula called "kid's calmpound." Its got catnip and skullcap in it. Very safe and non-interactive with other medicines. Acupuncture is great when the problem is teeth clenching. Its an option for some kids, but not for all of them. They are so sensitive to the needles! And migraines can make you more sensitive. But if she's in enough pain, she might be willing to try it.
Thanks so much for the comments and ideas. We have been addressing issues at school and her desk has been moved to a quieter place and her teacher is very receptive to anything else that might help her.
As to alternative therapies, she not interested in acupuncture but we're going to look into chiropractic services. The herbs are new to me. I know catnip is good for cats but hadn't heard humans can use it too. So we'll look into that as well.
Thanks again and happy holidays.
Marian
