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Margaret

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Posts posted by Margaret


  1. Hi Everyone,

     

    After what seems like an eternity, we have finally gotten all results from X-rays, MRI, and neurosurgeon on Gareth's neck issues.  The MRI showed severe neural stenosis/compression of spinal nerve from C3 to C7.  Myelomalacia is also present from C4 - C6.  The severity of the arthritic degeneration has the doctor confused.  He showed none of these changes on his neck X-ray 3 years ago -- none of it!!  I have Googled to see if this is an autoimmune issue connected with his UCTD but couldn't find anything.  Any thoughts or words of wisdom?

    The doctor said his severity is the reason for the chronic neck, shoulder, and leg pain/weakness.    :crying:

    The good news is that the doctor remembered Gareth was going on vacation and said he would schedule surgery after we get back.  Surgery will be in late October, with no brace afterwards, but 8-12 weeks of recovery at home.  I said to my hubby *why can't he just break a leg or arm, like a normal person his age?!?!?*   :lol: :lol:

     

    Thanks to all for your help and advice,

    Margaret

    Mom to Gareth,  27 years old, DS/ASD


  2. Hi Shelley.....too funny!!!  Today, he had his teeth cleaned and promptly reported that *Chicken wrap good now*.....meaning he wanted to go to Mc D's and get their large chicken/ranch wrap sandwich.  His favorites restaurants are Applebee's and Garfield's.  Any restaurant will do, though, as long as it's a *real* restaurant....not McD's, Wendy's, BKing, etc!!!  Nothing wrong with his taste buds!!!   :lol: :lol:

     

    Take care, Everyone.

    Margaret


  3. Good morning, everyone.

     

    On Monday, Gareth met with the neurosurgeon, who reviewed his neck X-rays from 3 years ago and said he has degenerative arthritis in his C5-C6.  There were no changes 3 years ago, so the disk degeneration and partial bone fusion has happened since then.

     

    He said that due to Gareth's lack of communication abilities, that it has definitely progressed farther than most people would accept, pain wise. He's got an MRI scheduled for this coming Monday to see if the spinal cord is impinged upon.  If the cord is involved, then surgery is the next step.  If not, it's pain medications, physical therapy, etc.  I will keep all of you posted.

     

    Thanks so much for the useful information. It's so much appreciated.

     

    Take care, Everyone.

     

    Margaret


  4. Hi Logan,

     

    Welcome to the forums. I just want to add that there are other meds that can help with scleroderma symptoms. My son was put on Plaquenil, an anti-malaria drug, that *jump starts your immune system*. It would seem like that is the last thing you would want with scleroderma, but it works on lessening symptoms. Gareth also had internal involvement and his esophagus was hardened for two-thirds of the way down. The plaquenil loosened up the hardness and slowed his progression; sorry, it's the best way I can explain it. He can't take the suppressant medications because he already has Mannose-binding lectin (MBL) and IGg deficiencies, requiring IVIg infusions monthly. He's been taking plaquenil for seven years now.

    Take care, Everyone.

    Margaret
    Mom to Gareth, 27 years old, DS/ASD


  5. Hi Everyone,

     

    You all are a fantastic group of loving and supportive people.  I sincerely thank you all for that! 

     

    Miocean, Gareth has 5 pins in his right hip, too.  He had his hip put back together at age 15.  Like your sister-in-law, the doctor said that if it was a *normal* person, they would have been wheelchair bound, in severe pain. He had no socket left to hold the head of the femur in place.  As a toddler/young kid, he would sit on the couch and pop his femur in and out, while watching TV.  Use to drive me nuts listening to it!!  His only complaint was that his knee hurt....to the point that he couldn't walk far.  Doctor told us the nerve that goes on the outside of the femur was affected/inflamed from the bad hip; it runs to the knee, thus causing people to think it's a bum knee.

     

    Quiltfairy, thank you for the photo.  You've given me more questions!  It looks like they went in from your throat, not the back of the neck?  What sort of pain were you in from the neck vertebrae or does all your pain *run together* ?  Was there noticeable relief from the surgery?  My primary care physician said they will probably go with stronger pain meds, and then,  physical therapy, before jumping into surgery.  You said they fused your C5-C6.  Gareth's is already starting to fuse together because it's bone on bone.  I'm wondering what would the difference be between your fusion and his body fusing them?  Maybe there will be relief for him if nothing is done, allowing his body to heal?  Lots of questions, but will have to wait till we see the neurosurgeon on August 24th.  You can email me privately if you want to explain more.

     

    Once again, thanks.  I'm so glad that I now know he's justifiable when he's ticcing/moaning/twitching.  It's not all the time he's in pain, but when he starts, I have him lie down on a heating pad and it seems to offer relief. He takes Etodolac morning and evenings for pain, and Extra strength Tylenol around lunch time. 

     

    Take care, Everyone.     :thank-you: :thank-you:

    Margaret


  6. Hi Everyone,

     

    As you all know, Gareth doesn't relate pain too well and it's always a guessing game as to what is wrong. For almost a year now, he's had a severe ticing/facial distortion/arm in the air behavior. He will tell me *hurts*....legs, neck, arms, etc. I finally went to the primary care physician and asked for a neck X-ray to rule out Atlantoaxial instability, which is something that can occur in kids with Down Syndrome.

     

    Gareth's has always been negative, but his neck pain was getting progressively worse and I refused to accept the *knot in the muscle* line from the doctors any longer.

     

    Turns out, he has no disk left between the C5 - C6 area of his spine and he has *bone on bone* beginning to fuse. Doctor said any *normal* person would be in excruciating pain a lot of the time, depending on how they moved their neck.

     

    So now we're getting referrals for a neurosurgeon and I feel angry at myself for not pushing harder to find an answer for his pain. He's got so many specialists and they look at me like I have Munchausen syndrome!

     

    Thanks for listening. I'm not even sure if this is connective tissue related or something completely new.

     

    Take care, Everyone,

     

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  7. Hi Quiltfairy.....lovely poem.  It does bring to my mind, though, what is the pain?  What IS Gareth dealing with on a daily basis?  I tell his rheumatologist that Gareth is always saying * I hurt * but can't tell me where, how bad, etc.  Is it a dull, constant, aching pain?  Is it an occasional sharp jabs of pain?  He takes Etodolac twice a day, along with Tylenol (2 x 1000 mg) whenever he's really bad.   I ask the rheumatologist about another pain regiment and he says to stay the course.  I measure his pain level by the amount of *ticcing, twitching, facial contortions, etc).  He's been on Plaquenil (200 mg/day) since diagnosed.

     

    Once again, thanks for the insight.

    Take care, Everyone.

     

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  8. Morning Quiltfairy......Happy Birthday..... :flowers: :flowers:   I turned the big 60 this year, too.  Where in the world did ALL those years go?!?!?  :dont-know:   I can't possibly be THAT old!!!

     

    Take care, Everyone.

    Margaret


  9.  

    ...a speeding car screeches to a sudden and abrupt halt at the side of a road. The door opens, without warning, I am ruthlessly shoved out and land in a sprawling heap. Wheels spin, such is the hurry of its departure and the car is gone. I wait and I wait and I wait until I realise that no one is coming back for me. Still, my gaze searches every passing car hoping for that spark of mutual recognition. Surely the car will return for me, the occupants perturbed by my absence. Nope, long gone, all gone, they’ve moved on...…Read more!!

     

    << Or, should I actually partake of the occasion, I fade halfway through, by the time I arrive at said destination, get into the joint, sit, order and stare down the first plateful, I have flopped, fizzled out, faded away, succumbed to the familiar, tired and wanting to go home. >>

     

     

    WOW.....Amanda....this is soooooooooooo Gareth!! He wants so much to do things and go places, but then backs out and says *so tired*. I never realized the extent of the *tired*. Thanks for opening my eyes on this.

     

    Take care, Everyone.

    Margaret

     


  10. Hi Ron....when my son was 18, he developed almost total esophageal dismotility.  Being an 18 years old male, his gastric doctor was surprised and ran blood work.  His ANA was high and + for *speckled patten, diffuse cytoplasmn*, his anti-RNA Polymerase 1/111 was also +..  With his dismotility, major fatigue issues, and hardening of the diaphram , his gastric doctor and primary care physician told me he had a rare disease called scleroderma.  Several months later, he saw a specialist who said no to scleroderma because he did not have skin issues or Raynaud's but yes to UCTD....undifferentiated connective tissue disease.  UCTD is still a disease and, over the past 9 years,  he has slowly progressed on to Raynaud's and SICCA. He was put on Plaquenil 6 months after initial diagnosis.  Like others have said, the blood work is a guideline.  You can have + blood work and still not have scleroderma, but some other disease similar in symptoms.  Initial internet Googling made me think he would die a quick, gruesome death!  Thankfully, I found this site and he is still around with his humor and smile.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  11. Hi Grey Pilgrim,

     

    I usually chime in for my son. He's 27 years old now and was diagnosed at age 18.  Initially, it was pretty bad.  His symptoms were all internal, no skin issues.  His main problem now, besides fatigue and chronic leg pain, is his esophageal dysmotility.  The gastroenterologist said his esophagus now looks like a silly, curly straw, so contorted from the hardening.  He has to *wash down* his food with liquids during meals. He was put on Plaquenil shortly after diagnosis and hasn't had any major flares.  His disease seems to be moving very slowly, even though he has also been diagnosed with Rayauds and Sicca since going on the Plaquenil.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  12. Hi Shelley,

    Gareth had sinus surgery four years ago, and again, last July. Both were necessary after chronic, unresolved infections in sinuses and left ear/mastoid and he was not on IV Ig infusions at the time.

     

    Over the past month, he's been on Doxycycline for ten days, then a steroid plus Flonase, then ten days of Levaquin. The Levaquin cleared up the sinuses enough for the ENT to see he has *major scar tissue partially blocking the left sinus*. He said this is what led to the infection because his nose couldn't clear the initial cold/infection. He's taking a *wait and see* approach since this is the first sinus infection since last summer. He's keeping him on the Flonase to see if it prevents another severe infection. He still gets his his monthly IV Ig infusions....which is a good thing. I'm just surprised he couldn't fight this sinus infection without going on Levaquin.

    Jo, I'm glad to hear that you're recuperating well! With only a faint line, you can still wear the bikini :lol: :lol:

    Thanks :thank-you:


  13. Hi Everyone....does anyone know how/if scleroderma/UCTD affects scar tissue?  If a person has surgery, does it affect the way the scar heals and does it make the scar tissue grow (as from a small scar into a big scar) ?  

     

    Thanks,

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  14. Miocean,

     

    Oh my!  I will keep you in my thoughts for a quick recovery.  I had to reread your post because, after the first time, I *thought* it was 10 DAYS of violent vomiting and diarrhea, making me wonder, where did you go on vacation?!?!?   :lol: :lol:  

     

    Do take care and try to get some needed rest, especially since hospitals are sooooooooo quiet!!

     

    Take care Everyone,

     

    Margaret

    Mom to Gareth,  27 years old, DS/ASD


  15. Hi Esme....unfortunately, I can't really answer that too well. Gareth has Down syndrome and autism, so his communications skills are very limited to rote questions and answers. He will say *legs hurt* and rub his thighs. He will ask me *pain pills* but not be able to tell me where he hurts. He stops and sits down if he's tired from walking, like in stores, malls, airports, etc. He already has 5 pins holding his right hip together, done at age 15, so that could be an issue, too. We do have a wheelchair for him and he will tell us if he wants to walk or ride. Being diagnosis'd with connective tissue disease at age 18, didn't help matters!!! Doctors have told me the pain is from the connective tissue disease but no one can tell me *why*. He also receives monthly IV Ig infusions, because of immune deficiencies, and I have been told they can affect the body, too, even though they aren't suppose to *hurt*.

     

    The people at this site help me to understand what my son is going through and what he is feeling. I'd be lost without them.

     

    Take care, Everyone.

    Margaret


  16. Hi Esme....eight years ago, after having been diagnosed with esophageal dismotility, they ran blood work on my son, then 18 years old.  His blood work all came back positive for scleroderma, including the anti-RNA  Polymerase 1/111.  Like you, I googled until I frightened myself with his early death!!  Needless to say, his diagnosis is UCTD (Undifferentiated Connective Tissue Disease) and he has been on Plaquenil since then.  Like you, he has extreme aches/fatigue in his legs, but no skin issues. 

     

    This is the only site you need for up to date, truthful information.  Everyone is so helpful and shared experiences enlighten many us.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 26 years old, DS/ASD


  17. <<<  As I once said before I don't know what I would have done without sclero.org , you sure have been there for me through some very rocky roads. ( It truly has been like having a guiding light through the darkest tunnel). :emoticon-hug: :emoticon-hug: :emoticon-hug: >>

     

     

    Same here !! 

     

    Take care, Everyone.   Think Spring  :flowers: :flowers: :flowers:

    Margaret


  18. Hi Andee.....hello and welcome.....second time around!!!   :)  I hate that when I lose a good long letter!!!  :angry:

     

    My son, at age 18,  had positive blood work, along with major fatigue,  internal hardening of the larynx, esophagus, and diaphragm. He had no Raynauld's or skin issues. The gastro doctor and pediatric rheumatologist said sine scleroderma, but the expert Sclero doctor said *Undifferentiated Connective tissue disease*.  He was put on Plaquenil and symptoms subsided considerably. That is not to say that UDCT is anything less of a disease than scleroderma, but experts have their guidelines to follow.  Either way, modern medicine has come a long way in treating the symptoms of each disease.    :emoticons-yes:

     

    Keep us up to date on your findings/questions and come here for the most up to date/accurate information. 

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 26 years old, DS/ASD


  19. Morning.....I am not sure if it is considered holistic or natural, but have you added Vitamin D to her diet?  Many times, when autoimmune diseases are first diagnosed, the individual's vitamin D levels are extremely low, and this can easily be rectified by OTC vitamins.  Did your daughter have her's tested?  If not, I would ask her doctor to recommend a simple blood test to rule out a Vit. D deficiency.  My son was on a very high dosage of Vit. D for years just to get it back into the *low* range.  Now he takes 1000 iu's daily.

     

    The gluten free diet is a very hard and expensive one to follow.  There are also blood tests to rule out a sensitivity to gluten and the possibility of celiac disease.  It's very common in the autism world to blame behaviors on gluten, but eliminating that from my son's diet never amounted to any changes, behaviorally or physically.  A blood test to rule out sensitivity to gluten must be done BEFORE the diet is started, in case you want to have that blood test also.  That is one blood test of Gareth's that was always normal!!

     

    Hugs to you.....I've been walking your path and it's very hard to watch our children hurting.  :emoticons-group-hug:

     

    On the bright side.....Two inches of snow two days ago and bright sunshine and 66 degrees today......yeah..........spring time!!

     

    Take care, Everyone.   

    Margaret

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