Margaret

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Posts posted by Margaret


  1. Hi Quiltfairy......I DO understand where you're coming from.  I want to know what is in store for Gareth.  I want to know the damage being done inside, if for no other reason than just to prepare for it.  Just to know that the next organ to go will be his kidneys or his lungs, or his digestive tract.  Just to be prepared!!!  I deal with every step but the *not knowing* is worse, especially since he can't tell me the source of his pain or discomfort.  He will see his rheumatologist in Dec and I will give her an update on the mess he had with his vertebra surgery.  Perhaps, she will have some ideas.

     

    You are all in my thoughts daily.....I can't imagine the pain each one of you go through, mentally and bodily.  Gareth is such a happy, go lucky guy, in nature...... it's so hard for me to watch each downhill slide and try to fix it.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  2. Hi Judy....I do know what a stoma is but I'm not sure for the reason.....meaning.....is this scleroderma caused?  Does the southern part of the body become harden like the esophagus?  I was under the impression that constipation was the issue with scleroderma.    Do the intestines stop working completely?  Just curious and wanting to learn more.

     

    Have a good day, Everyone.

    Margaret


  3. Hi Jon ..... I hope you are still reading the posts, even if you aren't responding.  When Gareth was diagnosis'd, at age 18, he *shut down* from depression and anxiety.  The doctor told me that the same processes affecting his esophagus/internal organs were affecting the chemicals in his brain.  He has been on depression meds since then....only 10 mg daily, but it did make a difference. Please, don't hesitate to bring this up to your primary care physician.  Depression/anxiety can be a side affect of any autoimmune disease.....it's nothing to be ashamed of.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  4. Morning Shelley,

     

    He is doing VERY well.  He only wears the neck brace when up and around during the day, per doctor's orders.  I keep asking if his legs or shoulders hurt and he says no.   :yes:    He is sleeping though the night -- ALL NIGHT -- no waking up and asking for pain meds !   Another   :yes:   !  

    I had to take him back in, on Monday, due to an allergic reaction to the tape used to cover the incision, Tegraderm.  It's the only one that he had not had a reaction to, in the past, but that changed.  That was totally gross; it was beet red, blistering, and pussing.  He also had signs of post op pneumonia, so the doctor put him on antibiotics as a precaution.  He felt well enough last night to go to his Halloween party.  He wasn't about to miss that one!!  :lol: :lol:

     

    Hope all is well with you.

     

    Take care, Everyone.

    Margaret


  5. Hi Everyone,

     

    He's home -- yeah!! :jump-for-joy: I had my arteries mixed up, though. It wasn't the aorta but the carotid artery that was tangled up with the trachea and esophagus. The doctor certainly did not want to nick that!! Anyways, about his insides. The gastro doctor said last February that his esophagus looked like a twisted, curly straw from the distortion caused by hardening. Now, I hear the extent of damage caused in the neck area by the hardening/fibrosis. Seriously, I am concerned about how much more damage he has on the inside. :dont-know: My sister said I should have a PET scan done and I'm seriously thinking about it!!

    Take care, Everyone.
    Margaret


  6. Hi,

     

    Just wanted to welcome you aboard.  My son was diagnosed with UCTD at age 18.  There are a couple of other parents on this site whose kids have been diagnosed  with scleroderma.  I hope they chime in.

     

    Take care, everyone.

    Margaret


  7. Hi Jon,

     

    My son, Gareth, now 27 years old, was diagnosed with UCTD at age 18.  He has the positive blood work for scleroderma,  no skin issues, just all internal damage.  Needless to say,  I just realized how *silent* of a disease it is with his vertebra surgery, two days ago. 

     

    This is a fantastic site with so much worthy information.  Continue to share your concerns and someone will chime in with useful information.  I am here because he also has Down Syndrome and Autism, making his communication skills very limited.

     

    Take care, everyone.

    Margaret


  8. Hi Everyone,

     

    The doctor came in for a chat today and checked up on Gareth.  He said it was like cutting through wood around his tissues.    :wink:  Not the soft, pliable connective tissue one usually has.  He said he had to take multiple X-rays during it to pin-point exactly where he was through and how much deeper he needed to go. He also said he had his team on some Medical internet site searching for scleroderma related issues in surgery.   :wink: Gareth may have the UCTD label, but he said his insides are harden like wood and that is scleroderma. I did ask him to mail a copy of his report to his new rheumatologist.  Gareth had a horrible night and morning, vomiting from the anesthesia.  Tonight he is much better and doctor said he could go home tomorrow, barring any complications tonight.

     

    Take care, everyone,  :thank-you: :thank-you:  for all the thoughts and well wishes for Gareth

    Margaret


  9. Hi Everyone,

     

    Well, the good news is that Gareth's surgery is finished and his neck vertebra are replaced with cadaver bone and metal plate. He has mobility in legs/arms and could answer the doctor that we had 6 cats after coming out of anesthesia.

     

    The bad news, like Kamlesh, is that his internal body is being taken over by the scleroderma/UCTD.  The surgery was suppose to be 2-3 hrs.  It lasted 7 hrs!!  The doctor got in and found that his esophagus, trachea, and aorta going up his neck was one balled mass of connective tissue.  He told us it took over 2 hours under a microscope, to snip away the adhesions just so he could work on the vertebra!!  He was not prepared for that and had never seen anything like it before.  I am very curious as to what the rest of his insides look like!!

     

    I'll stay the night, at the hospital, with him and he will probably be discharged tomorrow. He's only got a 1-2" incision at the crook of his neck.   He'll have to wear a neck brace during the day for a week or two, depending on pain. 

     

    Take care, Everyone.

    Margaret


  10. Hi....Gareth's ANA was positive, speckled pattern, diffuse cytoplasm, 1:80, per Dr Metzer's lab.  Scl-70 and ACA were negative.  Anti-RNA 1/111 has been positive 3 times.  With those results and esophageal dismotility + internal involvement, he does not have the *scleroderma* dx, but UCTD. 

     

    Hi Jo and Amanda....we got home last week. Loved England and Ireland!!!

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 27 years old, DS/ASD


  11. 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


  12. 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


  13. 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


  14. 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


  15. 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


  16. 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


  17. 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


  18. 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


  19.  

    ...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

     


  20. 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