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Margaret

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Posts posted by Margaret


  1. 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


  2.  

    ...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

     


  3. 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


  4. 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


  5. 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:


  6. 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


  7. 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


  8. 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


  9. 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


  10. <<<  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


  11. 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


  12. 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


  13. Good morning LCT2007.....Your daughter was born the year after my then, 18 y.o, son,  was diagnosis'd with sine scleroderma.  He had all the positive blood work and his major symptoms were internally, mainly his esophagus.  I had never heard of scleroderma and,  like you,   I hit the internet and thought he would be dead within a few years.  WRONG !!  I did get him to a scleroderma expert and he was placed on Plaquenil, to jump start his immune system. 

     

    I still don't understand scleroderma, but do know that there are so many autoimmune issues out there and medications do make it possible for a long life. My dad had Rheumatoid Arthritis and my mom has Gout, both autoimmune issues.  Do you have autoimmune diseases in your family history?  Gareth's diagnosis was changed to UCTD and he does have medical issues with his disease, but they are not life threatening......more of a thorn in his side, I would say. The over all fatigue seems to be his major issue.  That is an issue your daughter may struggle with throughout school and I would make sure the school system is very much aware of her disease, giving her access to lay down whenever it over whelms her.

     

    Shelley gave a lot of useful information and advice.  Bring your questions and concerns to the forums and someone will help you.

     

    Take care, everyone.

    Margaret

    Mom to Gareth,  26 years old, DS/ASD


  14. Judy.....yes,  it did start *Stopping Plaquenil*  because I thought if I stopped the Plaquenil, then Gareth's immune system wouldn't be so depleted, then he wouldn't have to have the monthly IV Ig infusions, that cause me/him to cringe because they can't get the IV needle in without digging for the veins.   You all are very complicated individuals,  medically, and I only need to ask to get some useful insight!!!

     

    Thanks everyone and take care,

    Margaret


  15. Morning everyone....thanks for all the responses and ideas.  It seems that Plaquenil does do more good than harm and I just can't see the *rose*.

     

    Judy....thank you for explaining your feelings in your legs....the tiredness and *can't walk another step*.  He's always saying they hurt and are tired.

     

    As for the blood draws, well.....we have tried all the suggestions.  I load him up with fluids before and they have the heated blanket ready to wrap his arms in.  I do agree with Shelley, that there are good drawers and not so good ones.  It seems to be a *pride* issue to many.....* I'm an IV nurse.....I do this all the time.*  What upsets me is that they dig and root around when they don't hit it immediately.  That is what gets Gareth so agitated and I have to hold him down.  There is one *whisperer* who can always get Gareth but she broke her hip, on the ice last Dec, and still isn't back.

     

    The infection control doctor, who came up with the new IVIg concoction, wanted to put a port in but his local doctor said *no*..  Thoughts on that idea will be appreciated, too.

     

    You guys are great........thank you, so much.  

     

    Margaret


  16. Hi Jo....I know I have had these feelings before about pulling him off the Plaquenil.  Seems like every time he has a bad episode of *whatevers* I start to think what I can do to make his life better.  He has chronic leg pain but X-rays are all normal. He's *so tired* yet seems to get a good nights rest.  Perhaps, these are just symptoms of the UCTD and the Plaquenil  is  lessening them.  The vein issue, I am not sure about....is that from the connective tissue disease, too?  I cringe when they have to dig in the upper part of his arm in order to do the monthly IV Ig.  Last month, they went from a 22 to a 24 size needle, just so they could stay in the hand.  I have asked his rheumatologist in the past and the answer was a definite *NO* but I would go and find a second opinion if I thought it really should be stopped.  I just don't know.

     

    As for hip surgery,  Gareth has 5 pins holding his right hip together.  He had to have surgery, at age 15,  because his hip socket was so eroded.  Others who have had hip replacement say it's the best thing that ever happened to them.  To be pain free is a great reward!!!

     

    Take care, Everyone.

    Margaret


  17. Hi Everyone,

     

    I am in a  worrying mode lately due to changing insurances, etc.  I am curious as to whether anyone has stopped taking their meds for their scleroderma, UCTD, etc?  Has anyone stopped taking their Plaquenil and, if so, what happened?  I know they advertise on TV that these meds can depress the immune system, which Gareth already has Ig G  deficiencies and an MBL deficiency.  It seems like a vicious circle that we have gotten in to with stopping the UCTD and beefing up his immune system with the IV Ig infusions.  I am beginning to wonder if his immune system would be stronger without the Plaquenil ?  He is such a hard stick to get the IV in,  and the past couple of times, it's been 2-3 sticks before hitting a good vein. He's not a happy camper when held down and they root around to get the needle in.  Just curious..............

     

    Have a good day,

    Margaret


  18. That's cute....a gene to dislike soft foods.  Try throwing in the autism gene for a SUPER finicky eater!!!  :(  For years, Gareth would only eat Cheerios, Spaghetti 'Os, ice cream and fruit salad (a concoction of fruit cocktail, orange jello, and cool whip).  Everything else was met with distaste, gagging, vomiting, etc. It's very common among autistic kids.  Fortunately, that phase has passed. :emoticons-clap:

     

    Take care, Everyone.

    Margaret

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