Need Suggestions - Where Do I Go Next?

I am at a loss right now and don't know what to do next. I could use some advice. My 17 yo daughter has had a headache for 4+ years, non-stop, 24/7 (except for 1 day). She got a double concussion when she was 13, playing soccer, and has been suffering ever since. We have tried many, many things over the past 4 years. She currently sees a headache specialist in MA (we live in ME). Her diagnosis is Chronic Daily Migraine (Intractable)/New Persistent Daily Headache. Over the past few months her pain level has gone through the roof, and we have had to go to the ER for relief (twice in Dec, once yesterday). She did an inpatient treatment beginning of January for 3 days at Dartmouth-Hitchcock. Was given DHE, Benadryl, Reglan and Toradol 3x daily. Left the hospital with no headache!! Very exciting!! Woke up the next morning with the headache and still has it 24/7. Got approval for Botox, scheduled for Jan 23rd. In the mail today got the notice from Ins saying they have approved the procedure, but they won't cover the Botox med. It's approved for 18 and older, but she is 17. I don't know what to do next. The thought of telling her this won't happen is killing me. Today she's at a 7/10, which is much better than yesterday. I don't know if I should fight with the insurance company, or find another treatment to try. I would really appreciate any suggestions you might have.

I am so sorry about your daughter's suffering. I know first hand how difficult your situation can be. I have a thirteen year old daughter who has been suffering with chronic daily migraine for the past 9 months. My heart goes out to you both.

We haven't gotten as far into the process as you have. I have yet to find a doctor who is willing to prescribe botox to her. This is very puzzling to me, because they have been willing to prescribe serious systemic drugs like anti epileptics...but that's another topic. I realize the insurance company is denying the claim because your daughter is under age, but here are a few thoughts...
Is there any kind of patient advocate through your insurance company? We had a nurse case manager at one point. Would your doctor be willing to write a letter on behalf of your daughter advocating for this botox medicine to be covered? As a last resort... would you financially be able to pay for one round of botox to see if it helped?

At the risk of repeating things you already know, here are somethings we have been doing for Nicole that have seemed to help bring her pain level down. Earlier in the fall, she was a daily 6-8 out of 10. Excrutiating! But the last month, she has been more a 2-5 out of 10. She has been on her current preventives for the past three months...maybe they are finally kicking in. She tries to go to bed and get up about the same time everyday & drink lots of water. Nicole is seeing a pediatric neurologist and going to bio-feedback at an adolescent medicine clinic. A fellow mom of a chronic migraine patient suggested we get Nicole tested for food sensitivities through a program called LEAP. Nicole came back sensitive to several foods and chemicals...she is currently on a very restrictive diet and she is unable to use lotions, most cosmetics and most soaps because they contain sodium benzoate a chemical she reacted to. But, she is feeling better...not cured, but much better.

I hope you don't mind if I ask you a few questions...it is very rare to have contact with another mom of a child with CDM. Has your daughter been able to attend school? How has chronic migraine affected her friendships with peers and carrying on a normal life? How has your family and friends reacted to your daughter's illness? How have you carried on a "normal" life yourself? Obviously, questions I am struggling with... My daughter had been in so much pain she missed the last few weeks of 7th grade and the 1st semester of 8th. Now that she has recently started to feel better, we have enrolled her in an online school. She is hoping to start high school with her classmates next fall. Keeping our fingers crossed.

Please keep us posted on your daughter's progress. I wish her the best outcome.



Stephanie Bibbens

Hi Stephanie,

Over the last 4 years, we have tried everything we possibly could. She was gluten free and dairy free for 2 years, which helped initially but then not as much. We have tried Topomax, Naratriptan, Neurontin, Cymbalta, Diamox, LP, Accupuncture, Accupressure, OMT, Chiropractic-Neurology, pain clinic, and much more. We had a Ped Neuro manage her case when she was 14, but he tried a couple meds, she had bad reactions to them and had to come off them. He said she should accept the fact that she will have a headache the rest of her life and get used to it. I promptly fired him! I refuse to believe that she will never be free from this pain. Even having her pain level at a manageable number would be considered a success. I am calling the insurance tomorrow to see if there is any way around the denial. In the past, they have give PAs for other procedures because we can prove it medically necessary. This is different because the denial is due to FDA approval specific to 18 and over. She is 17 years 7 months. I figure it can't hurt to try. My thought is, after the insurance, I will contact her specialist and see if he can help in any way. I looked online last night to see if Botox (Allergan) offers any prescription assistance. They do have an assistance program, but I was booted out of the process because she isn't 18. My husband and I have decided that we will find a way to make it happen (God willing).

I don't mind answering your questions. I remember feeling so lost because I didn't have another parent to talk to who could relate. When Katie first got the concussion and headache she was in 8th grade. She already had people talking that she had potential to be a scholarship athlete. Her sport was basketball, and she played year round. She played soccer for one season to keep up her speed, and took a ball to the face twice. She missed a lot of school immediately after the injury. After the first month, she tried to attend school for 1/2 days. Some days she succeeded and some days she just couldn't. I don't remember how many days she missed, but it was considerable. Her teachers were fantastic about giving her time to get her make up work done. In high school, I met with her guidance counselor and all her teachers at the beginning of the year. She was elligible for a 504 plan due to medical necessity. We also had the nurse sit in on the meeting. She was a huge piece of Katie's school day. Basically, her plan allowed for her to miss more than the maximum number of school days and still be elligible to pass the course. It also allowed for her to take tests in a quiet, dark room whenever she needed. She would often go to the Nurse's office and just lay down with her eyes closed, in the dark with an ice pack. Sometimes this was all she needed to make it through the rest of the day. The plan also allowed her extra time to get her work in. She was allowed to take tests in small pieces over the course of one day or more. If her head was bad, she could tell the teacher and take the test another day. She has missed approx 45-50 days of school per year. This year she has already missed 35 days. I have to say her teachers have for the most part been very accomodating, having the 504 in place helps. I tell Katie that her teachers want to help her, all they need is the opportunity. She transferred schools this year as a Senior. She's now attending school where I work. For whatever reason, her pain level has been out of control for the past couple months. One thing you might keep in mind, if your daughter is enrolled in public school and can't attend due to medical necessity, the school is obligated (at least in Maine they are) to provide her with a tutor and any other accomodations she needs to get her education. No different than the accomodations they are required to make for special education or special needs students.

As far as friends go, some of them are very supportive, and others not so much. It's one of those things you can't see, so is it real? Some people thinks she's faking it, I tell her those are the people she doesn't need in her life. I try to remember the same when it comes to my friends.

I worry about college. How can she possibly succeed if she's still missing this much time? What kind of career/life can she have?? Those are the things that make me anxious. I certainly feel more pressure than ever to get this under control. She feels it too. She wants so badly to be normal. I remind her, normal is over rated

So sorry to hear about your daughter. My advice is not to give up. If you give up trying different things she will definitely be dealing with this for the rest of her life. And that is not acceptable. It's just a matter of finding the right solution for her.

After 3 years of trying every possible medication, acupuncture, chiropractic, cortisone injections, etc... I finally tried natural progesterone supplements which made a big difference. I went from 80% headache days down to about 30%., with fewer big ones. (see http://www.migraine-headaches-information.com/ for more info on this approach.). I really did not expect it to work because like your daughter, my headaches only started after a neck injury (although I was in my 40's). But I saw a big improvement almost immediately. The supplements cost about $80 for a month supply, so it may be worth trying for a month just to see.

More recently my doctor started me on Nadolol. I've only had 2 headaches in the past month, and those were following gallbladder surgery. So I'm feeling quite hopeful that this preventative may finally be the answer after 5 years of living with this. I don't know if it would work for her, because apparently everyone's body chemistry is different. But I do know you have to keep trying.

If she is just 5 months from 18, it may be worth trying these other things and then going back to the Botox then if they do not work. It will probably take that long to fight the insurance company anyway. I did try Botox, but it did not work for me. I paid for it myself ($700). Not sorry I tried it though, as I wouldnt know till I did.

Good luck!

Is your daughter still playing soccer or engaging in other relatively dangerous sport activities?

Altan

She doesn't play sports anymore. She really misses it, but had to stop last year because her head was soo bad. This past year is the worst it's ever been.

We finally got the approval from ins. She had her first round of Botox injections a few days ago. We realize it will take a couple rounds to see any dramatic improvement. Her pain level has been fluctuating alot since the treatment, both better and worse. We are pretty encouraged that it's having an effect on her pain level already, we are taking it as a good sign. Very optimistic on what the second treatment might do. We have to wait 12 weeks (per ins co) for the next round. Hopefully we are on the right path.