My 14 year old son

Hello,
I'm new here. I just discovered Dr. Sarno 2 weeks ago. My 14 year old son has been suffering from acute penis pain since October 2013 (although milder forms of it off and on since he was 8). He says it's his urethra. It is at times spasming, at times burning, stabbing, ripping...you name it. He has had so many medical tests through his pediatric urologist. He has seen physiotherapists, chiropractors, had X-rays of his back, ultrasounds, urethrograms. Tried a ton of various medications, most of which made him extremely sick. His pain is often a level 10 or more - off the charts, making him panic and scream in pain.

So, I am positive he has TMS. His physiotherapist lent him a biofeedback machine and it is evident that his pelvic muscles are extremely tight. He is trying to relax them. He is currently taking .5 mg of Klonipin in divided doses throughout the day, and this seems to really help - due to its anti-anxiety property or relaxing his muscles, I don't know.

Since his symptoms fluctuate according to his stress level, and he has suffered from anxiety for years due to being emotionally abused by his grade 3 teacher while also being bullied (the 2 were in cahoots, shockingly, and were sued by another parent - they victimized 4 kids in my son's class), I know this is all stress related and muscle tension.

How do I convince him of this? He has given up hope that he'll ever be free of the pain. 2 weeks ago I stopped asking how his pain was all the time, I stopped keeping his pain diary, and I started telling him that there was nothing seriously wrong with him, he has muscle tension causing pain (not minimizing his pain, though), and that he will get better through dealing with his emotions. This does seem to be working - for the first time in months he's been out of bed (he is not currently going to school because of this pain), he's been happier, he's been building Lego and hanging out with us in the family room - all huge progress. He's still not able to leave the house much, though. He also refuses to talk to his friends.

So, he kind of believes me and kind of doesn't. He's heard so many theories and tried so many medications that he doesn't really believe in any treatment or diagnosis. I want to read Dr. Sarno's books with him but I know he won't want me to and won't listen.

How should I continue to coach him/approach this/get him to 100% buy into TMS? Can I do all of the research and reading and try to convince him, or will he have to do that? He's simply not that interested but I can see my new attitude already working on him, however much he thinks I'm wrong - he has definitely been improving.

Thanks for reading this far, any help is appreciated.

 

Thank you for your reply, Forest. I would definitely do what you suggest except that, being in Canada, there are huge waiting lists for doctors and no choices. My son has a family doctor so we are not allowed to find another doctor unless we unenroll him from this one first and then go on a waiting list through the province. Who knows who we will get and how many months or years that will take, there are very few doctors who take new patients in my city. It is so very discouraging to have no control over your child's health, to be unable to get tests unless the family doctor agrees (and GPs are penalized for every referral they make to a specialist so they are reluctant to do so). I am considering taking him to the States for care or maybe trying a doctor via Skype, I think I saw on the list that some doctors do that, right?

He also has a paediatric urologist, but neither she nor his GP will refer him to a pain clinic. I will have to keep fighting for that referral.

He has a referral to an anxiety clinic at our local children's hospital, one of the biggest in the country, but the earliest he will be seen is 12 months from now. I have him seeing a private psychologist (they are not provincially funded so we can actually choose one to go to - $190 per session), but I am afraid to bring up Sarno or TMS with her in case she tries to debunk him in front of my son and all of my work on him is ruined. I may try talking to her privately first, she is fairly open minded and quite concerned about my son.

My son is so resistant to new ideas about how to deal with his pain because he has had his hopes up and dashed so many times in the past year already. Some of his tests/treatments have been really painful and traumatic as well.

I like the idea of reading success stories to him, I think I will start with that. I have ordered 2 of Sarno's books as well as Claire Weeks, so I think I may just start reading them out loud and seeing if he becomes interested. I haven't found any videos that I think he will actually find compelling yet but I'll keep looking. I refuse to give up, I know this will help him immensely, I just have to chip away at his disillusionment, fears, and feeling of hopelessness little by little.

 

I think 14 year old boys often like Howard Stern. Maybe he would like the video of Stern interviewing Dr. Sarno? I haven't actually watched this yet, but thought it might be an idea for you.

http://www.tmswiki.org/ppd/Dr._Sarno_on_the_Howard_Stern_Show

 

Howard Stern may pique his interest - thanks for the link, Ellen!

It was very interesting last night - usually my son's pain peaks late in the evening - I've really been drilling into his head about how his pain isn't doing any lasting damage, not cancer, just lack of blood flow that's not harmful, etc. etc - and last night instead of urethral pain he had a headache and sore stomach. He told me that when something else hurts on him - like his head, shoulder (he had pains last week) - his penis doesn't hurt. I think this pretty much proves TMS and really put my mind at ease. I told him this as well and he fell right asleep without complaining any more.

 

Steph, How about getting some new Lego projects for him? When I read he likes Legos, I thought AHA! Instead of the "defensive" approach…why not go on the offensive..ie, having FUN? Now, I know those darn things are expensive (we've gotten them through Amazon) but they'd be less expensive than a therapist!

Hugs to you and your son.

 

My sympathies for your plight, have you tried Flomax for symptomatic relief? It worked great for me for urinary urgency, just a stab at it since you've tried most everything else.

Your experience with the Canadian socialized medical system is truly frightening! This is the model that we've been propagandized for years as being so great and Obama care is modeled after--truly frightening--the gov has control of your health cradle to grave and that includes your son's educational system and his incompetent teacher who created the psychological problem in the first place. I've always heard that Canadians who can afford it come, to the States if they have a serious medical problem--a year wait is really unacceptable. Here we can see our doc immediately if we tell them it's an emergency. God help us when this system is fully rolled out here, I hope I'm not alive and helpless at the hands of it--KEEP YOUR SARNOS HANDY and hope it's not anything truly structural or serious TMS.

Good luck with your son, I know a lady who's son about yours age has been dx'ed with lymes and I've mentioned TMS to her but it's tough when it's a kid.

 

Being from Canada, obviously from another province than stephb, we have not had problems getting into specialists for myself or my kids.

My sympathies go out to you stebhb, having a child in pain and trying to get them to listen to you is a tough job. My strategy has been to rub my kids back to calm them down. Long talks about feelings also helps, I am still doing this and my kids are in their 20's (living and home and going to university). Now with the TMS knowledge, you can point out the parts that don't make sense, like how the pain goes away when he gets a headache.

Good luck, Peggy

 

Thanks for the replies, everyone.

Peggy, thanks for back rubbing suggestions - when my son's urethra is spasming really badly I rub his legs and he says it really helps. I think nothing is as calming and soothing as a mother's touch. I do try to get him to talk to me about any anger he has, and he did admit he was angry at me for not knowing he was being abused in grade 3 - because he thinks I should just have known, especially when I volunteered in the classroom and the teacher was sweet as pie to me. I think him telling me that really helped him. He feels I failed to protect him.

The year long wait is for the anxiety clinic at CHEO - my son's doctor is one of the top paediatric ADHD/Anxiety doctors in Ottawa and she was outraged that the wait was that long - she said that usually when she does a referral they take her very seriously (meaning waiting 3 months, not 12), so she doesn't know why he has to wait so long. She is fighting for him to get in sooner but we have not heard any news in weeks. I did meet with the CHEO fundraising side of things just yesterday (interestingly enough - for my job, which is for a private charitable foundation that gives money to hospitals and charities), and the fundraiser also admitted to me that all of their anxiety workshops and youth groups had waiting lists 100's of kids long. And then she said it's because they don't get enough charitable donations - funny, I thought our taxes took care of that?

It took 3 months for him to see the paediatric urologist at CHEO, and that was with his referral marked "urgent". Time between appointments for followup is months. When he was 8 he was referred to the urologist at CHEO as well - we got a letter saying that the waiting list was so long that they didn't put him on it and to try again in a year if he still had symptoms. So, this is not the first time we've dealt with long waiting lists.

My mother needed an MRI for her back about 5 years ago and had to wait a year and a half to even get scheduled for an appointment. She gave up and had surgery in Fort Lauderdale instead - $42 000 later, after paying a lifetime of taxes for her healthcare. I could tell stories all day like this of people I know.

North Star - I just bought new Lego for my son today - he is relaxing and building it right now. I am just talking about Sarno's methods as much as I can in front of him hoping to "brainwash" him, LOL. It is truly working - today was a great day for him!

Tennis Tom - I could rant for hours about our healthcare - Cuba, North Korea, and Canada - the only 3 countries where you can't even buy private insurance to look after your family's health (I'm jealous of Europe) - we literally have no control at all. It is so frustrating, and scary. I can pay privately for a boob job - but not to remove a cancerous tumour. And the waste is ridiculous - a billion dollars wasted in Ontario alone on one failed, corrupted electronic medical records debacle - and no one bats an eye.

Oh, and the teacher that abused my son - did I mention that her salary is $100 000 per year? And her insurance company settled out of court with the parent, and she's still at the school teaching? Maybe I'm the one with anger issues to deal with....

I truly appreciate all of your suggestions, sorry about the rant

 

Tennis Tom, he is on Flomax, and we did find that helped, especially at first. Thank you for the suggestion.

 

Hi, Stephb.

One of our TMS members, Herbie, made a short video explaining TMS which you might find helpful:


http://tmswiki.org/forum/threads/what-to-know-to-heal-from-pain-pt-1.5482/

 

That's great, Walt, I will watch it and show my son.

I can think of so many people who can benefit from this information - my Mom, Mother-In-Law, Brother - just so many more. If my son continues to improve as he is, I will be passing Dr. Sarno's books to anyone who will listen.

Now I just have to help him deal with his anxiety and adhd - maybe both TMS as well somehow?

 

Hello Stephb, I just joined this group and am also located in Canada (Montreal). I am the program manager in Canada for the Biofeedback Federation of Europe (BFE) and interested in your son's situation. Did you try going back to the PT that suggested the use of a biofeedback machine? Was biofeedback any help for your son?

 

Hi Mark,

My son said that the biofeedback did help a little bit. When he was in pain his muscles were definitely clutched very tightly and the biofeedback helped him to relax them. Overall, however, I don't feel it provided much long lasting help. He used it twice at the physiotherapist's office and then we rented a unit for a month to use at home.

An interesting update is that my son was just diagnosed with Hashimoto's Thyroiditis last week. His thyroid was going hyper and hypo. His penis pain seemed to be worse during the hypo cycles. His pain is still much better than it was and he's still 70% better by his own estimation, but this may be the final piece of the puzzle.

The doctor did confirm that low thyroid can cause lower urinary tract symptoms without an actual infection.

He's not on medication yet but hopefully in a few weeks and then we can see if that resolves his pain completely.

This disease went missed by his doctors for years - so that's a little tip for those still suffering from pelvic pain - get your thyroid checked even if you have no other symptoms. And don't accept the current range for TSH and T4 - it should be much tighter. Do a little research before you take your doctor's word for anything.

 

Hi Steph B, very glad to read that your son's situation has improved. Good luck for a positive outcome and complete resolution to the pain.

 

stephb,
What a tough situation. For you and your son. I am glad you found this forum. I'm new here but its a wonderful place for support. It sounds like you have to walk a delicate line between helping and not pushing. You have made the connection between the trauma of emotional absuse your son experienced with his pain later, and while i am of course not a trained mental health professional, I assume it is hard for your son to deal with the trauma - again, its a tough one, because accepting TMS would mean in some way dealing with the trauma, and he may not be ready, cannot deal with it, does not know how. I dont know much about treating emotional abuse issues, only my own experience in therapy dealing with, in the grant scheme of things, not that severe childhood stuff, but it sounds like a therapist experienced with trauma where he feels comfortable but not pushed into it might be good. I would think he needs to know he is not alone in having been emotionally abused. That seems key. Don't forget that you too need support and need to attend to your own emotional needs. When it comes to accepting TMS just as an adult it is so hard (I still have my moments of doubt) I can only imagine the complexities of being a teenager make it even harder. You have found the right place here.

 

Hi stephb,
Your love and care for your boy really comes through in your posts. You seem to be very alert to what he may take in re "education" on Sarno, and when he resists. I think your attunement to him, using and expanding the few positive pieces that he has received may well get you through. There is progress, there are exceptions to the pain, he is listening... I have a friend with a teenager whom they suspect might have TMS pain, and let me tell you, you are way ahead already. Good luck in your journey.
Andy B.