Parent of Male Teen - Needs Info

Discussion in 'Fibromyalgia Main Forum' started by DWhitT7, Nov 8, 2005.

  1. DWhitT7

    DWhitT7 New Member

    My 16 year old son was diagnosed with Fibromyalgia in 2003. Since October 2004 we have been seeing Dr. Enlander following his protocol of Imunoprop, Catapult, Weekly shots and now Xyrem for sleep. My question is, since I do not have Firbo, how do we judge the effectiveness of the treatment. Since starting, his immune system has strengthened, he has not had a cold or other illness in a year. But he is still not in school, doing only part time home schooling. He has a real problem with memory, focus and brain fog. Still has daily pain. And as a parent and non-sufferer - I am not sure how to really tell if what we are doing is really working. Any thoughts would be truly appreciated.
  2. alaska3355

    alaska3355 New Member

    My son is 18 and has CFIDS....his started about the time your son's fibro did. He is also pretty healthy, although if any type of a virus goes around, he gets it. His concentration still is not what it should be. He is not on any meds- just supplements. But I'd like him to be able to function when he starts college in Jan. I'm sorry I don't have any specific help, but your chances are good that someone here will have some suggestions. This is a very helpful place....
    Take care! Terri
  3. Lynda44

    Lynda44 New Member

    I am so sorry your young son has to suffer with this !!!
    I'm sure it is very hard on you to see him in pain.

    I think that he is the best judge as to whether the treatment is helping him. Has he said whether he feels any better or not since starting it ?

    With most of us, its trial and error until we find something that helps.

    If he doesnt feel that this is helping him, dont give up hope, keep trying different things and hopefully he will find something that works for him.
  4. orachel

    orachel New Member

    ...Your teenager suffer with this. I applaud your desire to do anything you can to help him in his struggle.

    I'm a 30 year old woman who was diagnosed about 4 mos ago...been almost unable to move for 5 mos. It is EXTREMELY hard to measure improvement of FM symptoms, as they vary so much from day to day. I've also had major issues with brain fog...I was an english major in college, and there are some days I can barely read or write, invert numbers...big mess. Can no longer drive to to neurological symptoms...it can be very severe.

    I have a few suggestions for you. 1st as far as "measuring" symptoms, make sure your son is keeping a med diary to write down every single pill etc supplement he takes, and when. This is vital. He should also be keeping some sort of a pain diary. It's hard from the patient perspective because so many of us ALWAYS hurt badly. Most docs use the pain scale from 1-10...1 no pain (I wish! LOL) and 10 being a trip to the ER due to excruciating pain. There's a very simple and easy pain diary you can print weekly and have your son complete (basically just circling a number and tiny notes about where pain and severity of. I also rate my fogginess on a scale similar to this. 1 is my old clever self, 10 is don't remember my own name. Not able to read or write well is around 7. Pfizer website has a great pain diary to print weekly. This is good for you and your son to look back over time and spot "trends".

    2nd...I noticed a slight improvement in my symptoms as soon as I started on some basic supplementation....I got some basic supplements that all my research (i'm the queen of research into this condition and its treatments when I can read!) told me that most FM patients were deficient in...

    Magnesium Malate (magnesium and malic acid compound)
    Fish oil
    Great B vitamin compound
    C and other immunity boosters
    Flax seed

    This wasn't a huge difference, and I mightn't have noticed if I didn't write everything down and go back later to look for trends in lower levels of fogginess. This is a "babysteps" to progress kind of an illness.

    3rd...has your son had a sleep study? Just about all of us who have had them have had MAJOR sleep problems that are often correctable...any MANY of which contribute hugely to the fog and pain. I just had mine (had to BEG my doctor to refer me to a sleep doc....my doc just didn't think it was necessary. If I waited until my doctors felt tests were necessary I'd still be waiting at retirement age! You have to be your son's advocate and INSIST on these things. Docs are very very conservative with ordering tests!) and it turns out that one of the reasons I feel so utterly wretched and my brain doesn't work properly so much of the time is that I'm literally WAKING UP 40x every single hour that I sleep! Also have apnea which stops me breathing 8-25x per hour, depending on the sleep cycle I'm in. This is inhibiting in a HUGE way my REM sleep, which controls memory and cognitive abilities, as well as regulates mood. Hmmmm....Makes sense that a bright young woman can't tell right from left these days if I can't stay sleeping more than a minute and a half at a time, and I'm getting no rem sleep, huh? I'm also getting virtually 0 DEEP sleep, which is when our bodies repair tissue damage. This would explain much of my pain.

    So, I begged for this test because my doc was sure my sleep was just fine regardless of what I told him (and i had no idea it was this bad), and sure enough there is a huge problem which may be fixable. I'm getting a CPAP machine to assist me with breathing at night, and may have to have a somewhat mild surgery to remove tonsils and other excess tissues from my throat.

    Just about every single person here who's had a sleep study has had MAJOR issues, and needed major treatment to correct their sleep problem...but when it is corrected it does make a difference. Some feel a mild improvement (but every little bit helps!) and for some its miraculous.

    Get him a sleep study, definitely.

    And also...i don't know how much research you or he does into this disorder, but if I can I'd like to direct you to a few books that may just change your son's life. Both authors are MDs and sufferers themselves. I went from feeling all alone in the crazy things going on in my body, and somehow these authors manage to COMPLETELY explain so much of what's going on, where my docs just look at me like I'm crazy.

    One author is Devin Starlanyl...she's just amazing. I'd recommend "surviving FM and myofascial pain syndrome" and then immediately after "the FM advocate". I urge you to read these with your son...or at least discuss them with you. I promise they'll answer a TON of unanswered questions.

    And second...Mark J Pelligrino, MD....he's a male fibromyalgia survivor, and an amazing physician. I know it must be difficult for your son to suffer what's so commonly mistaken for a "female" illness....this book will help tremendously. Its called "inside FM". Dr. Pelligrino is pretty much in permanant remission with his symptoms, and this is a HOW TO manual that is full of practical information and hope on conquering symptoms. He's written many other books, but this one is the first of his that I've read...my inlaws found it for me! What a help!

    Finally....Have you ever considered having your son treated at the FFC? Its an organization of clinics all over US which treats only FM and CFS...they go about it very uniquely, but many many of the people here who've gone into remission attribute their improvement to the FFC. There's truckloads of info on this site....It is pricey, and many insurances won't cover it (though some will reimburse up to 60%)...but a few visits (and these aren't the 20 minutes if you're lucky visits like with normal docs. You'll be there for 3-6 hours first time...take an incredibly comprehensive history, and do bloodwork most docs would never dream of, that actually FINDS some of the problems at the heart of your son's illness. Quite amazing!).

    I'm dying to go, but I've had to stop working period, and our household was designed for 2 incomes! LOL....but they do have a sort of "medical credit card" that allows you to make payments as low as 20 per month....I highly urge you to go. And I've got Aetna ppo....I actually have a chance of them paying for 60% of the cost of visits (and all of the expensive bloodwork does direct bill insurance, so you won't have to pay for that...they usually START with about 30 vials of blood to do intensive testing) and possibly more. I know there's ffc's all over....I can't think of ones in detroit, los angeles, cleveland, seattle...and they do have a phone consultation program after the 1st visit if you have to travel to get there...theres a free information night once a month for prospective patients...go! LOL

    I'm starting treatment there early next year if I have to pawn my wedding ring to do it....I just think their care (from all I've heard from their patients) is fantastic, and while they are md's, they do focus their care on herbals and supplements, IV therapies and immunoboosters, hormone replacement and treatment of dormant viruses. I don't know about you, but none of my docs at the 50+ visits I've been on in the last 5 months will even discuss herbal supplementation, yet most of the people who seem to achieve full remission seem to be using herbal supplements. Does make you think, doesn't it?

    Anyway...I've written you a book here! LOL But I do think its amazing that you're such an advocate working hard on your son's recovery and treatment plan. This isn't easy to deal with at any age (and you're hearing from a 30 year old newlywed who just had to buy a CANE yesterday just to walk around!LOL), but I cannot imagine the special challenges innate in being a young male patient with FM. Understanding of this is so rare, but at least your son has you to be a strong advocate on his behalf!
    Good for you!

    Rachel
    [This Message was Edited on 11/09/2005]
  5. victoria

    victoria New Member

    There isn't a week that goes by that I don't read about someone getting a definitive diagnosis of Lyme who has been previously diagnosed with Fibro and/or CFIDS...

    My now 18 yo son started with neuro difficulties that included difficulties with memory, retaining info, unrefreshed sleep of 10-12 to even 14 hours of sleep, but would awaken dazed and feeling as tho he hadn't slept at all... and also included anxiety and depression, starting majorly at age 15 when he began high school... at the end of 2 years he was one credit shy of even having completed one year of H.S. due to having had to drop courses and even had to withdraw for medical reasons 2 different semester. At this point, he reluctantly withdrew altogether and went to GED classes last school year.

    He was finally ready to take his exams last spring, altho in addition to the memory and mental confusion problems, he also began to experience many aches and pains, some of which migrated with no explanation, and many came and went with no explanation.

    He also had lost 10 lbs which he could not spare; we took him to our internist, who also told us his BP was too low as well as his pulse (in the 40s at times but usually in low 50s, and no, he's not an athlete).

    He was mirroring my own physical symptoms more and more - not something a 17 yo son would want to identify with, that's for sure!

    - he was in denial and tended to accuse himself of being lazy etc., even tho he had never been this way before. He said he needed to be angry at himself in order to get himself moving mentally/physically.

    He also became mentally/physically lethargic about his music, which had been his passion, altho it seemed at times he would regain it and again begin playing and composing.

    To make a long story short hopefully, I am on an experimental protocol that has to do with the premise that many of us are infected with bacteria that can hide out in the body extracellularly as well as within cells, even the white blood cells, and can also form cysts to hide out from antibiotics (one well-known reason why bladder infections can persist for instance). The Lyme bacteria spirochete is one of these bacteria that is known to be able to do this, altho certainly not the only one.

    Our internist agreed something was obviously wrong, but had no idea really even to whom to refer us, much less what direction to take.

    I went to ilads.org and read up more on Lyme specifically, as our son had spent much of his life outdoors and myown positive reaction to the experimental protocol... decided the best thing to do was to take our son to best "Lyme-literate" MD we could find; closest for us in Georgia was a doctor near Charlotte, I was told not to bother with doctors here.

    Well, he came up with not only active Lyme but the way the certain DNA bands are read, it showed that he'd also had it for at least 2 years. Also met CDC requirements on tests and symptoms for positive diagnosis, except for the fact he never had the 'bulls-eye rash' (fewer than 50% do) or been in the northeast.

    He began treatment last May with 2 antibiotics (abbreviation:abx) (one works intracellularly and one in bloodstream) for 5 days of each week for 3 weeks, 3rd week he also added in Flagyl which dissolves the cysts that bacteria form to hide out in.

    He exhibited a classic "Jarisch-Herxheimer" (abbreviation: herx or herxing) reaction after only one day of abx, in which one gets an exacerbation of symptoms due to the toxins from the die off the bacteria; was knocked on his back as if he had the worst case of flu ever for the whole 3 weeks, had a bit worse reaction when Flagyl was added.

    The 4th week he took a 'holiday'; he felt great during that week!

    The next 2 months he took different antibiotics each time, also Flagyl each time. Each time he took the 1 week holiday, he felt good. However, the past few months he has not felt any real difference during the week holiday, and the herx reaction was also no longer very obvious.

    We just took him to the clinic yesterday and is now on a different protocol of antibiotics to let his immune system calm down...

    You might also look up the story on the internet about the Florida State University star quarterback who was found last spring disheveled walking down the street half-undressed mumbling and saying he was God...teammates had said that he had been sort of weird for several months prior to that but chalked it up to stress... there was much speculation that he was on drugs or had been slipped drugs without his knowing. He also never had a bulls-eye rash.

    He went thru extensive testing which ruled out recreational drugs, etc., but it turns out he had Lyme, his parents took him to a Lyme-literate MD (LLMD) for treatment.

    Even tho many Florida and other doctors wrote letters to papers protesting this diagnosis initially, after several months of IV abx treatment he is now able to return to school and attempt play again on a limited basis, has talked about how good he feels now.

    Unfortunately there is much controversy over reality of chronic Lyme, there are those who feel it is a 'fad' diagnosis and that if one doesn't get better after standard 4-6 weeks of treatment it somehow magically turns into an 'autoimmune' disorder.

    My son's doctors rotated different antibiotics because it is known there are over 100 varieties of Borrelia burgdorferii in the USA... it is impossible to diagnose which strain(s) are infecting a person with blood tests, so different ones need to be tried, as no one or two antibiotics works for all Lyme cases.

    I strongly urge you to have your son tested for Lyme and associated tick-born diseases by a good LLMD, as often there are other organisms transmitted along with the Lyme bacteria; so far no other disease has shown up for my son altho he is being retested for the most common again plus mycoplasma.

    The Fibro and Fatigue Centers are testing for these things, but I don't read that they are doing the type of treatments for Lyme when people come up positive that my son is receiving.

    So I again strongly urge you to go to ilads.org and other recommended sites and read what's there. The blood tests anyway are not foolproof, there are many false negatives (and some false positives); you need a good lyme literate MD (LLMD) who is a good diagnostician, that is what medicine is about really as blood tests are not as accurate as they are made out to be.

    Hope this helps, I know how difficult and disheartening it is to have to watch one's child deal with these problems for which there seems to be no easy answers. While my son is happy to have a definitive diagnosis, he is depressed still at times too - as in 'why me'.

    All the best,
    Victoria


    [This Message was Edited on 11/09/2005]
  6. redsox10

    redsox10 New Member

    DWHitT7, Sorry to hear about your son. I have a 16 year old who has been sick for 3 years. First diagnosed with CFS. Last Novemebr diagnosed with Lyme. Please research Lyme. You are not far from one of the best Lyme specialist in the country. My daughter is slowly improving. If you want to chat I can set up a time to do the live chat. Put lymenet.org in a search and go to the forums. Most doctors know nothing about Lyme Disease. Please look into this.

    My heart goes out to you and your son. Good luck and I am willing to chat with you.
    [This Message was Edited on 11/09/2005]