Hi and thanks ladies,

I developed Thoracic Outlet Syndrome and RSD from complications of a tetanus booster reaction in 2003. I now have RSD body-wide, but my arms are most painful, with muscle wasting and nerve damage. During the endless round of Drs, tests and therapy, a couple of my PTs' observations sent me to a geneticist, who confirmed something I had sort of suspected. I have a hereditary connective tissue disorder, similar to Ehler's-Danlos or Marfans but unnamed as yet. My heart checked out just fine. But I have long arms and legs for my trunk size, and am double-jointed in most small and large joints, have adult-onset scoliosis and pre-menopause severe osteoporosis. Also a high palate with too many large teeth in a small jaw.

My maternal aunt, uncle and grandfather were positive for sx, and both my daughters are as well. Both were delayed in fine and gross motor at preschool screening, but only in areas where the hypermobility came into play. My oldest, 15, can do everything age-appropriate except for rope-climbing and pull-ups. My 11-yr-old still has trouble with fine-motor skills and has terrible hand-writing, but readable, and can't do pull-ups or rope-climbing either. Neither could ever master the monkey bars. And they frequently pop joints partially out of place, or bend ankles, but because the tendons and ligaments are SOOO elastic, there's never a sprain. I was just like them, but had NO CLUE why.

My mom still doesn't believe any of this! ANyway, the connective tissue disorder involves a collagen deficiency. I suspect, based on what I've learned from many sources, that I reacted to the thimerosal in the Td shot. I did ok with earlier tetanus shots, but in a reaction it is to the accumulation of mercury in your body, and the load of mercury in the shot is the tipping point. Also, for the earlier shots I was younger and had more muscle mass, which helped prevent the toxoid from getting through to the faulty soft tissue.

Now my girls both had several more rounds of immunizations than I did as a kid, many of which contained mercury. I believe Haley, the 11-yr-old, has some minor damage related to the mercury in those shots, the hypersensitivity to clothing being one sx, disorganization, mood swings, crying jags. She was born a week and 1/2 early, 71/2 lbs, seemed fine, but became jaundiced and we came to discover she was tongue-tied and couldn't nurse or suck from a bottle. What a nightmare it was to get her tongue clipped - the pediatrician accused us of child abuse for wanting it done, even though she was clearly losing, not gaining weight at 2 weeks! We finally located a sympathetic oral surgeon.

She has such a high palate we were fortunate she wasn't born with a cleft lip though. So there are certainly some things genetically and otherwise going on. However she functions very well in school and with most peers and is very bright. I am hesitant to put her and her sister through the genetic testing because if they are labelled with a hereditary connective tissue disorder it might make it very difficult for them to get insurance once they are on their own, or get full coverage.

Both girls are highly capable, talented, fully functioning kids. I just need help handling this younger one and her behavior cause she wears me out. I don't sleep well due to pain, and have little energy, am on several meds, my pain averages 5-6 daily and she wants to defy or debate every single thing I ask or tell her. Or we do something together on the weekend, have fun, and an hour after we get home I hear how I never do anything for her, never do or buy or allow her to do anything SHE likes, she doesn't like me and wishes she didn't live here and off she goes to her room in tears, mad, and NOT doing whatever it is I had asked in the first place which is something like starting her homework or setting the table.

Lately almost every night has ended with her mad and upset about something - and I'm reaching the end of my rope with her! Guess it's something to talk over with my counselor - she may have some ideas. There is a really good counselor for strong-willed kid's here, but costs lots of $$ which we don't have - squeaking by right now.

I'm in the damages phase of a settlement, but my lawyer says it could be quite a while yet - may even go back to trial - God, I pray not!

((((((((((((((( beth ))))))))))))))))

it's so difficult to parent and live with chronic pain. it sounds like you do so well!

i would certainly get her in with a therapist just for an assessment. you might be right on target with the ADD. she sounds much like i was as a child, and i live with ADD as well. the frustration coming from nowhere (as well as the sensitivity) is very familiar to me. also, i was showing outwardly only 1/10 what i felt inside and would think, "i'm being an angel right now compared to what i feel and YOU'RE upset???" I remember thinking that alot and being confused by the reactions around me when I thought I was being controlled and good.

therapy could help her to recognize her frustrations and work on them continually. i think it would be great for her age! for ANY child that age.

good luck and let us know!

KD

Snoopy, that must have been a nightmare! Thank goodness we haven't had any violence, although she and her sister bicker constantly. She lies convincingly right to your face though, even when the evidence is clear. And takes things to her room without asking, odd things you don't realize are missing til you see them in there. She also goes through the contents of all the cabinets and closets - she probably knows the location of everything in the house better than dh and I!

Good to know I'm not the only one that has a child that went through the whole sock/shoe/clothing bit (well, we still go through the clothing bit - she almost never wears jeans, too scratchy), at the same time I offer my sympathy! That reminds me I need to hide away her flip flops - it's getting quite chilly and she still wants to wear them to school.

I WILL talk to my therapist about an appropriate counselor, and possible low-cost testing available.

Thanks everyone, you've been so helpful and shared so much. Kimmie, it's great to get some insight on how SHE likely feels when these problems blow up! Like I said, we have been able to mostly get along til the last couple years when I've been less able to function, and she's gotten older. But the kind of misbehavior a preschooler/early elementary age child typically gets into are mostly a lot less scary than what a pre-teen/teenager looking for trouble will find - and I HAVE to get a handle on her now if I'm going to protect her from those kinds of things.

beth