REALLY need some help, advice, wisdom....

Discussion in 'The Watercooler' started by LittleDudesMom, Nov 28, 2009.

  1. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    for my neice. I'm goign to try and give you the information as straight as possible. I'm just wonder if this group of great members can offer any suggestions or information that my sister in law can use.

    My neice, who is 10, has been having a 24/7 headache for 63 days.

    She first complained that the pain was in her forehead. Since she had a cold, her mom thought perhaps it was just a sinus headache. When it wouldn't go away, the doctor appts began.

    She has been given three perscription medications - an antibiotic for a sinus infection, a steriod to reduce any inflamation that could be present, and a migraine medication that my sister in law cannot remember the name of (this is bonehead's sister who lives in Chicago and was in town for the holiday) - no go. She has been on a course of the advil/tylenol thing - no go there either.

    She has been to three nuerologists, she has had an MRI and a catscan (to rule out tumors, etc.), she has had several accupunctur appts, she has been at a chiropractor and for several massage therapy appts (I think that was to make sure it wasn't stress/tension), a therapist, she has been to two ear/nose/threat specialist, a headache specialist, and now a pain management specialist. She has had some electroid things attached to her fingers, she had some kind of screening where they see images of her head to identify the pain and have seen the "red" which indicates positively the presence of pain.

    Her current peddoc has her on another course of antibotics because he says he sees some pressure and blockage in her sinuses.

    The pain, which began in the forehead, has moved to the base of her head in the back - not in the neck, but actually at the bottom back of her head. She has been able to identify the progression of her pain from the front to the back.

    She is an extremely smart little girl. She has always been incredibly social and animated. Now she is like a rag doll. She has huge purple cirles under eyes - remember, the pain has not gone away in 63 days. She is a different child.

    The headache specialist has now sent her to a pain management doctor with this information - she has New Daily Headaches and needs pain management because some people live with this all their lives.

    My sister in law refuses to believe that her daughter, one of her four children, will be like this forever. Money is not really an issue for she and her husband so they are willing to travel or whatever to help their daughter.

    She has kept a diary of her daughter's situation. She has gone back and dug and dug to see if she could find a cause. The only thing that she can identify that was different is that her daughter had a head cold and received the seasonal flu shot four days before the headache begun.

    Any ideas?

    Thanks so much,
  2. SRL

    SRL Active Member

    Has she been allergy tested? And since allergy tests aren't always reliable have they tried removing dairy from her diet--often that's the primary culprit and leaves characteristic purple shiners. Google allergic shiners.

    I might also visit another reputable chiro. I was having headaches and didn't see a chiro until I also had neck pain. I went through three months of gentle manipulations before all was well again.
  3. SRL

    SRL Active Member

    Also, I know this is going to sound simple, but is she sleeping on a good quality mattress with a good pillow? My husband's grandma had serious back pain for months and after the docs had done their thing someone finally thought to check the mattress and it was ancient.
  4. 1905

    1905 Well-Known Member

    She needs a better specialist! ASAP! Is there a large Children's Hospital near you? There is a reason for these headaches, another doctot who has seen this will be a better one than what she has now. This happened to a childhood neighbor of mine, his mother never forgves herself for not continuing to seek the answer, pain management is not the answer. And obviously the anibiotics aren't either or they would have worked by now. 63 days is way too long. She can just drive over to another state if money's not an issue and walk into the ER-Philly has a great Childrens Hospital.
  5. tiredmommy

    tiredmommy Site Moderator

    Could there be a fungal infection present? The circles make me think of an allergy as well, those circles are sometimes called "allergic shiners".
  6. SRL

    SRL Active Member

    I had a friend who had headaches for years until she addressed a yeast problem. I think the book that helped her was called The Yeast Connection.
  7. klmno

    klmno Active Member

    I'm thinking of some sort of infection, or reaction to a flu shot- did she get the H1N1 vaccine, too? What about having her checked by a team at MCV/VCU? Something is causiing it so I think her parents should push hard until the get the answer. Also, is it possible to have the MRI and CTscan results sent to another specialist at another place altogether and see if they agree with the "reading"? And what kind of dr specializes in blood disorders? I think I would want that specialist to check her, too, just as a rule-out.

    I also wonder if a pinched nerve or disc slippage could cause this- but I would think the chiro would have found that.
  8. Fran

    Fran Former desparate mom

    LDM, so sorry for poor niece and family. I agree with SRL and TM about allergy testing or removing dairy just to see if it works.

    I would be very concerned too. She may be having atypical symptoms which makes it hard to pinpoint something. How is her blood pressure? I'm assuming they did blood work to rule out diabetes as well as infection. You would want to rule out vascular disease which includes aneurysm and stroke. Her MRI would clear her of brain tumors but within that tiny area of sinus/eye/brain could have something lurking. I would want to be sure there is nothing in the pituitary area or wrapped around the brain stem. Maybe a secondary infection due to sinuses.
    Has she had a spinal tap?
    I don't know if they even still do angiograms anymore but that was one of the diagnostic tools for diagnosing brain pain back in the day.
    I'm just guessing but chronic pain isn't something a parent is willing to take a face value for a normal 10 yr old child. I know I wouldn't.

    I would start to do searches for pediatric headache specialtiests or pediatric pain management or more pediatric neurologists.

    You know I would never pretend to be qualified to diagnose. I am just listing some of the things I would do to start to peel back layers to find what's going on with my kid. She needs to be relentless until she can come to understand what she can do to help this kid.

    Mom should ask each specialist to recommend others who might be able to shed more light on the problem. Networking helped me find what I needed to know and expanded the circle of people helping my child.

    A journal from mom is excellent as well as copies of all testing and consults.
  9. klmno

    klmno Active Member

    Uhmmmm....eye specialist?
  10. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    thanks guys. sister in law is definately relentless in her search to find out about these headaches. That's why all the different docs. I'll share this information with her so far. They have already left (early this morning) to head back to Chicago and I told sister in law I would keep her posted with any suggestions you all have. I'm going to look into the shiners thing now.

  11. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    I just read a few sites about the allergic shiners in kids but it didn't include any mention of headaches?
  12. SRL

    SRL Active Member

    Headaches and shiners are two possible allergy symptoms. A person may have one, the other, or both.
  13. Nomad

    Nomad Guest

    The only thing I can think of is to get multiple opinions, preferably from those who specialize (usually a neurologist) who have an interest in headaches/migraines.

    There are headache clinics, like the Diamond Headache Clinic that are well known for treating headaches.

    Perhaps she needs an MRI of areas of the brain, head and/or neck that are not being viewed currently.

    Her recent flu shot would be of concern to me.

    Even if it is a reaction to the flu shot, sometimes headaches get a "foothold" and it is very hard to break that cycle of pain. It might take a very strong IV of a narcotic to get it to break.

    Would agree that a journal of symptoms and medications tried is a great idea. And would encourage the family to keep pushing forward with specialists, even if it meant travelling to find one.

    Sometimes a multitude of things can contribute to headaches/migraines (just something to keep in the back of your mind).

    How sad that she is going through this painful ordeal. I hope the family can find the right medical expert and/or team that will provide answers.
    Lasted edited by : Nov 28, 2009
  14. mstang67chic

    mstang67chic Going Green

    I too was thinking allergies. They can come on at anytime in your life and appear quite suddenly. My 15 year old sister has has headaches for a while and had some of the testing your niece has had. The only thing the CAT/MRI (not sure which she had) showed was that there really IS a brain inside her head. LOL They did an allergy test and discovered that sis is allergic to, among other things, cat saliva and certain outdoor trees/pollens. They have 3 cats, one of which sleeps with sister and while they live in town, they aren't considered part of the city limits, have a 1 acre lot with a good number of trees on the allergy list. The docs have switched her medications to some sort of migraine medication and it's made a big difference. I'm not sure if she's on a daily allergy medication but I can find out if you need me to.

    Ask your sister to monitor your niece's diet and see if there seem to be any triggers that make the headaches worse or shift. Or even if they seem to be affected if she's outside, around animals, etc. Poor kid....things like that are bad enough as an adult...worse when you are a kid.
  15. totoro

    totoro Mom? What's a GFG?

    I was going to say the Diamond Headache Clinic as well.
    There is a Children's Hospital on the floor above... I can't remember which one???

    I saw Dr. Diamond who started the clinic and he is wonderful. He started and researched most of what is now being used for most migraines and cluster headaches.

    The Diamond Headache Clinic is one of the best in the country. They work with kids and are wonderful with all of their patients.
    I would at least look it up and put a call in, they are very thorough and do all of the blood work etc at the clinic.
    His son and some other family work with him as well.
    When I needed help ASAP they called me back also, I had a "Emergency" number to call.
    They helped me when I was at my worst with my migraines, I was going on 14 plus days straight...

    He walked in and hugged me and told me he would help me. :)
  16. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    What about migraines? There some kinds of headaches that are chronic and require pain management. Then, again, they can be intense for a while then go away.

    My son once had horrible migraines, but he doesn't get them anymore.
  17. gcvmom

    gcvmom Here we go again!

  18. Josie

    Josie Active Member

    My daughter, now 11, has had the 24/7 headache for 2 years now. We have done all of the above except the Diamond Headache Clinic.

    I recently took her to another headache doctor that prescribed Indomycin, an NSAID. He said some headaches that don't respond to anything else will respond to it, pretty quickly. It is too soon to know for my daughter. It took me 2 years to hear about this, though, so I am mentioning it so your sister in law will know about it.

    We have recently started treating my daughter for yeast and she does seem a little better. (She had reached a new low for 6 weeks beginning in Oct. when she felt so bad that she didn't even watch TV but just laid there in her bed. She is now out of her bed a little more and able to watch TV and be on her computer.)

    Your sister in law might want to look into Lyme Disease and learn about the whole controversy. The mainstream view is that it is easily detected and easily treated. The controversial opinion is that the tests are not accurate and have many false negatives and that it doesn't necessarily go away with a single antibiotic treatment. The mainstream belief would not recognize a chronic headache as Lyme, but the other doctors might, depending on the history and other symptoms as well as testing. I think it is important for her to read both sides and see what she thinks instead of just relying on the doctors she sees. She should read about what the "Lyme Literate" (ILADS) doctors believe as well as the ID doctors beliefs.

    If she is able to get rid of her daughter's headaches or get pain relief, will you please share with me what she does or where she gets the pain medications? I am willing to travel for pain relief for my daughter. So far, I am getting nowhere with it.

    Did she get any relief from the antibiotics? My daughter got better early on with the antibiotics that they gave her for "strep throat" (without testing her or her complaining about her throat) but got worse again without the antibiotics. Then, when they tested her, she was negative so she didn't get more antibiotics.
  19. TerryJ2

    TerryJ2 Well-Known Member

    The only thing that she can identify that was different is that her daughter had a head cold and received the seasonal flu shot four days before the headache begun.

    I vote for the flu shot side effects.
    It contains mercury, formadehyde, and an antibiotic in the e-mycin family. I hope she's not allergic to that.

    Best of luck! Poor thing!
  20. jal

    jal Member

    I work with-someone who had pain kind of like that and it moved into the base of her neck. For her it turned out that she has very vicious TMJ. She didn't present with it in her jawline. For her it is in the head, the back of the head and neck and it can be debilitating. Now she will be using a mouth guard. Is it possible the niece is grinding her teeth or clenching her jaw at night? I use a guard because I grind. Half the time I don't wear it and don't realize I'm doing it. husband tells me the next day. So niece may not even be aware it's happening.

    Poor thing. I hope she gets some relief soon!