Pain an "anomaly" with HEDS??

My daughter is 6 and has trouble walking from her HEDS- related ankle pain. Often days she won't walk and begs not to have to go to school. The rheumatologist and orthopedist told me today that pain is not usually associated with HEDS and they are shocked to see her in such pain. They didn't say they disbelieved her, they more made it sound like a total medical anomaly. Especially in someone so young, they seemed incredulous. I know they're wrong about not associating HEDS with pain, but does anyone else have experience with such a small child in such pain? What helped?

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My daughter's ankles collapse, her feet hurt, have since she could talk and tell me so. She pretty much can last 3 hours whether it is really fun stuff or school, and that is it. I've home-schooled her from kindergarten to now, 10th grade. She tried school for 2nd-3rd grade, but was crawling under her desk and crying with pain/exhaustion. She refuses to take painkillers. Dr. Tinkle's book on HEDS talks about chronic pain in every chapter. I'm so sorry your little girl is in pain; it is not at all unusual though it makes us mothers feel so helpless. You have all my sympathy. Has the school gotten her a PT to do safe muscle-building? Ice packs help my girl, some like heating pads. Rest is best.

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Hi mommy2seanp; Your experience sounds so much like ours, I am so sorry for these wee munchkins of ours. I also find a very specific diet helps me lots with my symptoms, but my daughter has that Rebel Gene that (in my family at least!!) seems to go with the more severe EDS. She did give up milk when she was about your son's age, and I was able to help her control her food so she ate whole foods, lots of veg/fruit, etc.. Now, she is a teen and wants to socialize, not be different. She can only manage one fun thing a week anyway, and guess what?? It is pizza and sugary stuff for all, of course. Once she hit puberty she craved milk, cheese, chocolate. Honestly, I had to explain it thoroughly and then let her decide. Maybe she needs conjugated linoleic acids for her bones or skin or growing? I was the same at her age, took my mom's hard earned lunch money and ate candy bars and soda for lunch at school.

We spent many nights and days with her in my arms, rocking and singing and reading books. For both you and DedeKay, I do find life is much easier now, hope you will also find it so for your children. If I could go back to preschool days with my girl, I'd be way more assertive with the schools and insist on accommodations. Can the nurse let her nap in the health office? Can she do half days at school and work with you at home on the paperwork? If the diet works, I'd say try to find a group for your child where all the kids have diet restrictions, maybe they will stick together through the teen years.

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My legs and back started hurting when I was four. They haven't stopped since. I hope your daughter gets some help with her pain.

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I too remember the "growing pains" that everyone said were normal. Now I know they may be common but mine were very likely more severe than most.

The other thing that both my daughter and I have is that a joint will go partly out and be very painful. One time I hobbled into Target because my knee was out. I limped through the store intentionally walking on the inside of my foot then the outside because normally this puts it back. By the time I was done shopping it was back in and felt fine. If anyone saw me they would've thought I was faking.

My daughter has the same issue with her ankle. For her a good pair of stability running shoes has really helped. We now buy her expensive shoes while trying at the same time to appeal to her tweenness. She understands she can't always wear what the other kids are wearing but we do try to be a little more fashionable.

Stephanie

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First off: those doctors are simply WRONG. I'd chalk it up to being ill-informed or misinformed rather than being jerks; regardless, it has a devastating effect on your poor daughter. EDNF has some great literature on EDS in children, as well as access to a whole lot of research papers that you can print out and share with your care providers. Is your little girl in physical or occupational therapy? I suspect that these are the folks who can really help her with detailed recommendations to you and to the docs.

My ankles sprained more than a dozen times each between 7th and 12th grades. This was the first diagnosis I had of joint instability, but it was years later that EDS was suspected. The orthopedic doctors with the Navy recommended Reeboks to be worn at all times, never wearing heels over 1/2", and eventually wearing orthotic inserts in my shoes. There are other brands now that have similar support, but I always check out the arch support in shoes now before buying. (These days, I only wear Easy Spirit shoes, which cost more than picking up a pair at Wal-Mart or Payless, but cost a whole lot less in terms of pain.)

Make sure she's getting plenty of calcium and Vitamin C. I know they recommend 2g/day of Vitamin C for adult EDSers, but I'm not sure what's recommended in our children. You may want to ask her primary doctor to check her Vitamin D levels. Among the chronic pain community, a whole lot of us cannot convert sunlight into Vitamin D, and the amounts we get in our diet just aren't enough for our bodies. When Vitamin D is low, we get (more) pain and fatigue and brain fog.

I really believe that a good physical therapist or occupational therapist will be on your side, and will be able to get you some real help in easing your daughter's pain. They know about the best braces, and they can recommend things like a wheelchair or walker (God forbid!) if that's what she really needs.

I hope you find her some relief soon!
Hedwyg

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I didn't have problems with pain until around puberty. By that time, I was tall and growing fast, so of course it was all chalked up to 'growing pains'.

I didn't develop the chemical sensitivities until decades later when my work led me to spend thousands of hours in water-damaged buildings contaminated with mold and other neurotoxic microbes. At that same time, all of the food sensitivities kicked in hardcore and massive candida overgrowth in the gut turned out to be the major culprit. That damages the lining of the intestines. I remember being sensitive to things like mold and household products like Pine-sol as a kid. I remember milk being nauseating. But nothing at all on the level we're talking here. We're talking about the difference between seriously wanting to get away from it, and feeling like you're going to die in seconds.

IOW - the reactions are what we notice, but they aren't themselves the cause. It's the underlying immune problems that set it all off. The collagen defect alone compromises most tissues. Everybody wants to talk about joints, but the important parts in this problem are the gut, the blood brain barrier, and the skin. Those tissues have the major job of standing between our insides and whatever lies outside. But none are quite 'wrapped' as tight as they ought to be. If you sew, that would be like expecting chiffon, but you ended up with cheesecloth instead. It will filter, but not nearly as well and something weaved tighter. You could still make a dress with it, and from a sufficient distance, it might even look ok. But up close, you would see that it would both stretch and fray like nobody's business.

If the blood brain barrier is compromised, we become more susceptible to toxins through that path. If the gut is compromised, we become more susceptible to not only toxins, but infiltration of partially digested foods. If you add something like candida which actually 'roots' itself in the intestinal wall, so much the worse. And since much of our immune system is developed and controlled from the intestines, it generates kind of a perfect storm. Things that would otherwise be harmless become problems. It took me several decades to fall into that hole, and a surely didn't 'grow out of it'. It may not explain all of us - but think about the EDS adults we know. This idea explains a whole lot of that. Not the structural problems, not each specific case. What I see and hear are a whole array of wild symptoms and conditions that are common to those with chronic toxic exposures.

Candida is 'supposed' to be there, but not dominant. Food is supposed to be there, but not supposed to hit tissue or blood until fully digested and broken down. Air is supposed to be in the nasal cavity, but the blood brain barrier is supposed to be able to resist even the tiniest molecules. That one is even more critical, because the only thing on the other side of it is the brain - so now we're talking neurotoxins, which can certainly set off some unbelievable pain and crazy symptoms with or without specific structural injuries.

So my thinking now is that our children with EDS probably need more protection against all kinds of toxins than other kids. Not quite Boy in the Bubble level, but with particular attention to cleaner air, water, and food. If they've already been hit, it's critical to limit further exposures. IOW, as if they were already chemically-sensitive and immune-compromised. You choose the non-toxic and unscented natural and hypoallergenic products. You double-filter the tap water, keep humidity below 50% and make sure the air inside is filtered. Think twice about use of prophylactic antibiotics - those are also poisons. The hope is to kill an invader, but it's hardly worth it if the result actually damages the human instead. It's all kind of a lifestyle.

You might even ask the child to help - they know what feels good to them and what doesn't, they just don't always know to speak up when they're very young. One whiff, and I know if I'm going to react badly. And if they're ok, the worst that will happen is that we might avoid (or at least delay) this situation altogether. These are things we all did for them as infants before their immune systems were fully functional, so it's really just a continuation of that kind of protection in order to avoid blowing out a fragile immune system. If they are in school or have sibs who are, they won't lack for exposure to all the usual childhood diseases. That's a different type of immune response. This is more about avoiding the toxins and keeping that immune system on track and growing stronger instead of weaker. So I don't think it's possible to make a mistake by being very, very conservative in this direction. If I had it all to do over again, I'd definitely go with this as a choice rather than risking it becoming a necessity. One is perhaps a pain, but the other is sheer hell.

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Wow!! This is a really clear and helpful way of explaining EDS. I kept telling people "we are like the canaries in mines" but your cheesecloth dress is much the better image! I was told over and over by well-meaning teachers/parents, and even my own mother long ago (I forgive you, dear mom!!) that "we just need to toughen you up and expose you to more germs and you will be fine." There is no way to toughen up cheesecloth or canaries. We can dutifully do our PT to stabilize our joints, and still our skin and guts will be extra-sensitive. Thanks, keep writing.

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My son, who is 11, has also experienced "unexplained" pain with little understanding from doctors. The pain is chronic and I have had many who haven't come out and said so but have implied it might be in his head. I don't believe children deprive themselves of fun activities on purpose. If it was only with boring activities--you'd have to ask yourself if it was faking but when they are so tired that they can't participate in fun activities or in so much pain that they stop wanting to play, you know the doctors are absolutely wrong!

I've been lucky that he's a little fighter and so wants to go to school even when he feels badly. He's taken on the I want to beat the HEDS and not let it beat me type attitude but there have been days when his body just wouldn't let him do it and he's been forced to stay home.

I agree with the statements about Vitamin D. My eldest son who is 15 suddenly became exhausted and wasn't able to focus properly (unusual for a straight A student). Teachers and doctors told us he was a rebellious teen but I knew there was more to it. So I kept up the pursuit and when he finally got a referral to endocrinology, we discovered that he was vitamin D deficient and had a very high phosphate level because of it. They suspect that he has a milder version of HEDS than his brother because his flexiblity is way above normal but he hasn't experienced the chronic pain and dislocations. They thought the deficiency came from the HEDS since there was no other explanation.

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Everything I've ever read and experienced about HEDS said that pain is incredibly common and to be expected. The worst part is when you try to get diagnostics for the pain (i.e. x-rays and MRIs) it is difficult to find a reason for the pain. The explanation I've heard is there is a lot of soft tissue damage associated with HEDS that causes it. It's incredibly frustrating, but I'm surprised that your docs did not know this. I hope things get better and your daughter is able to find some relief.

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Unfortunately, they are incorrect in it being an "anomaly" but I would venture to guess they haven't seen a lot of patients with HEDS, especially young ones. Does she have inserts for her shoes? Sometimes this can help the foot (depends on what the issue is of course). Braces can be used, too (again, depending on the issue) -- but should not be used exclusively unless absolutely needed, because you want the muscles to get stronger, if at all possible. My son has had pattibobs since he was about 7 (he's 11 now), and his night-time waking went down dramatically for foot/leg pain. I also put two pieces of egg-shell foam on his mattress, and that also helped his night-time waking for pain. He still has a lot of pain, but we treat with motrin and/or an icepack, and some TLC (rocking in a rocking chair). As soon as he feels better he is usually his busy self again. We've had one emergency room visit for a shoulder that subluxed/dislocated in which he was at the top of his pain threshold. It's hard seeing our kiddos like this -- There's a great book out there that teaches relaxation breathing called A Boy and His Bear -- it's a children's book (not sure this will work, but here's the amazon address)
http://www.amazon.com/Boy-Bear-Childrens-Relaxation-Book/dp/1886941076 How about pool therapy (either swimming, or walking?) DS is not so keen about water, but we're trying to go that route. And the book from Dr. Tinkle mentioned above has a lot of good information, for parents, as well as to share with doctors (if they are receptive).
Tracy

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From EDNF's "Pain Management Medical Resource Guide" (available free to members, BTW, and really useful resources https://netforum.avectra.com/eweb/DynamicPage.aspx?Site=ednf&WebCode=Custom Page): "Chronic pain is a well-established and cardinal manifestation of EDS and it is common for pain to be out of proportion to physical and radiological findings."

What commonly happens with doctors is they're taught about 15 minutes and almost always only about vascular EDS because of its the mortality rate; and in pure VEDS, pain is not normally a major issue. But in Classical and Hypermobile particularly, pain is one of the major symptoms.

Even if EDS is twice as frequent as the old 1 in 5,000 figure and really is 1 in 2,500 we're talking a total of somewhat over 160,000 of us in the US, but there are over 660,000 doctors and surgeons, so the odds of finding a doctor who's had en EDS patient before and recognized them as having EDS are not great.

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My daughter had pain with standing from her first attempts at about 15 months. It looked like it hurt when she tried. Her ankles collapsed so much that she didn't like it and didn't try to walk until she was almost two: first steps at 23 months; finally walking at 27 months. She was also so loose in her hips that she never crawled. She's been fitted with ankle-foot orthotics since she first walked, and now is going on 13 years with no hope of ever being free of ankle support, though she can walk barefoot now, on very collapsed feet… She does PT and has modified PE expectations at her middle school. Her legs hurt quite often.

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the most difficult thing to tease out is "growing pains": i am a specialized pediatrician, and i have to admit that i never ever told any parent that their kid had "growing pains" because i could never find out what they were! so for me it is a cop-out "diagnosis", unless the youth is seriously calcium deficient = cause for "charlie horses", but not endless mysterious pain, debilitating pain.

as typed over and over before and after me: type 3 EDS (the numbering system is re-emerging as standard, instead of using HEDS and VEDS abbreviations) is PAINFUL, and the invalidation that comes with it (normal x-rays, normal looking person, etc..) makes it all the worse. your validating and taking your kid seriously, and then your finding a few "safe" people at school (including the PE teacher, since a kid with EDS should never spend all of his PE-years on the bench, and at least one of your kid's friends who can be a "safe person" to complain to), is key to helping them grow up knowing their limits and not having to whine to get attention, but pushing to be active in a safe way, and stay a part of their peer group.

bonne chance! and your daughter is very very lucky to have you as her mom!

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Hi nyfrog -- Just a question on your parenthetical statement about the numbering system coming back -- do you know who is making that decision, or where this reversal has been published? I'm just wondering because I just want to be sure I'm using the most current information when I tell family members, etc. information. I thought one reason they went away from the numbers , was to get rid of the "severity" type between I and II since it was confusing to doctors/caregivers (as well as patients), but I could be wrong.
Tracy

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Hi, I am new to the discussion. My 6 yr old has started to have a few bouts of pain in his knee and hip. Today is one of those days. We still don't have a definitive diagnosis yet (we see genetics in about 3 weeks), but the rheumatologist did tell me that she is highly suspicious that we have some form of EDS. If indeed my 6 yr old's pain is EDS related, can it be infrequent like it is right now? When he gets it, he can barely walk, but there's nothing wrong - no swelling, no redness, no injury that caused his pain. Those of you that have younger children in pain, did it start out as daily pain, or did it start infrequently and then build over time? Any other symptoms, such as swelling or anything? Thanks for any replies you can give.

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My daughter started having pain at 5 1/2, and it was occasional ankle pain a few days a week, not necessarily all day. It continued and continued and started to become more frequent, and the pediatrician kept saying it was post-viral joint pain that she got from having strep throat. Same thing as momof3inOH- no redness, swelling, or result of a fall or anything like that. She has pain now almost every day, but we are starting to figure out that good weather helps, and we've tried acupuncture twice, and it seems to be helping... When we went to genetics, since there's no test for HEDS, they didn't even do bloodwork, just said they agreed it was probably HEDS.

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Wow, i am so sorry you are going through this with your little guy. The pain from HEDS is real and outrageous. I wasn't diagnosed until I was 25. But when I was a kid I had constant pain and simple things like kite flying would leave my arm in a sling. But everyone shrugged it off as me being over sensitive.

At 13 the pain became unbearable, i dropped out of gymnastics, soccer, etc.....My legs, knees would give out constantly the drs would put me on crutches for the pain and say it was unexplained pain. My teachers in High School would mock me and laugh because I missed so much school they thought i was faking it. The surgeons told my parents to ignore my pain.

At 25 i finally was diagnosed on the persistence of an orthopedic surgeon that I had EDS. Ive had over 15 orthopedic surgeries. Knees, Hip, Wrist, Shoulder, and cortisone shots in every joint. The pain is daily, I wake up with it and go to bed with it,
Its hard to walk and move most days and without the vicodin and tramadol it would be impossible to even get out of bed.

PT does help but only manual pt, gentle stretching, massage, controlled range of motion excersises and a PT who understands we have good and bad days and pushing through the pain on bad days isn't going to help. BE VERY PICKY about a PT.....I also would recommend seeing one of the great geneticist out there. I'm not sure where you live but I recommend Dr Tinkle in Cincinatti, Ohio. He is phenomenal!! I see him once a year to help me manage the condition, my family dr. is great, and orthopedic surgeon is too. I've given up on pain medicine docs, my family dr prescribes the pain medicines.

HOPE THIS HELPS :)

Prayers for you and your little guy,
AC

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i am not sure where anything is ever really published about EDS! but from working with leading geneticists in the USA and Canada, i know that THEY are using the numbering system. Medical insurance companies have "dumbed down" much of medical lingo even in nephrology, so it is not like there is an official decree anywhere, i just wanted to make sure that EDS 3's are validated, and not lumped in with benign hypermobility syndrome, which itself can be painful but generally not as systemic as EDS, and is the more and more common default diagnosis for anyone who can put their palms on the ground and complains of foot pain = ridiculous!

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The numbering system was done away with in a major worldwide conference in 1997 in Villefranche from which the new nosology was published [http://www.ednf.org/index.php?option=com_content&task=view&id=1507&Itemid=8 8889208]. All the classifications were rewritten, and how to diagnosis them; the older Berlin nosology types I and II were merged into Classical, 3 became Hypermobile, 4 Vascular, and the rare types named. Some were eliminated. It's not an equivalency; the classification as a whole was reworked, and the new system has never completely taken hold; anyone trained before 1997—a *lot* of medical professionals—probably aren't even aware of the new classifications. The new classes were set up because of newer information, including knowledge about which types of collagen were being affected in each type and a desire to remove confusion with Joint Hypermobility Syndrome. But there has been no worldwide decision to go back to the older, less accurate system. Depending on whom you talk to, there has been talk that a third nosology may need to be written in about 5-10 more years, because despite distinct collagen defects, EDS as expressed in the body would appear to be more of a spectrum rather than distinct types, a spectrum which may or probably includes Joint Hypermobility Syndrome as a mild form of EDS.

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I truly empathize....& especially after yesterday's visit to a new rheumie. I've had formal diagnosis of EDS-hypermobile type -- minimally or some other obscure HDCT - but most likely HEDS. Anyway yesterday I got into a rheumie whose office was multidisciplinary with yoga, a naturopath, someone who did prolotherapy etc.l I thought it sounded like a good fit and the guy had good ratings on the doc rating sites.

I walked in and he proceeded to tell me that my EDS is merely a red herring in my whole history - that there wasn't a reason in the world I couldn't function normally...that none of his patients ever had any form of loss of function or disability due to EDS - just a few loose joints and a couple with flat feet. End of story? No it got better - he ignored me and spoke over me to his nurse practitioner, he would rapid fire questions one after another without giving me time to think about the answers I could provide - and then had me holding back tears during his exam - which was cursory. Finally when I couldn't answer a question in lightening speed he got really loud and said in a very exasperated voice, "I don't have time for this" - tells his nurse to access my records from another facility so he and she could 'talk' - and he left the room. She then tells me that she has never had EDS affect her patients negatively in a rather 'smurky distant' voice. I was floored. Later thought then what the heck are they being seen at a rheumatologists office for? Then thought a lot of other not so nice things....

I was furious. I paid the lady up front one hundred and seventy dollars for this rather horrific treatment - why did I do that? So I went home and wrote a letter to the nurse - telling her I could find no excuse for such maltreatment by this so called professional - I asked her 'nurse to nurse' what she thought about this guy - and did he treat all his patients thusly? I gave her a copy of Dr. Tinkles book - and xeroxed the cover of his other book and Hakim's collection on Hypermobility, Chronic Pain and Fibromyalgia. Told her the reason I went in -- and that my first impression was really really bad and I would not be returning.

I know Dr. Tinkle has a chapter on dealing with doctors - but heck I never even had a chance to deal with this doctor - he just rather used me as his vent for probably all the complicated cases he's had in his career - I truly never saw it coming.

So agree with the others that share that something is missing in this doctors 'view' - I'm sure it's truly his experience - just as I'm sure it's my office yesterday's experience - that pain and disability are rare - I'm not saying that they are lying.... I would never do that - but ill-informed, closed-minded perhaps, unknowing and baffled about how to handle their true 'unknowing', maybe even frankly ignorant.... But don't doubt yourself and what you know to be true. YOU are the mom .... and as a peds nurse I learned very early on that almost without fail the MOM is right on the money in her perceptions, ideas, intuitions etc...

Hang in there - truly better days are ahead ... keep up the good work!

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