Margaret

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Posts posted by Margaret


  1. 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


  2. 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:


  3. 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


  4. 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


  5. 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


  6. 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


  7. <<<  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


  8. 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


  9. 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


  10. 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


  11. 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


  12. 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


  13. 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


  14. 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


  15. 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


  16. Hi Kamlesh ,

     

    I am sorry to hear that your neuropathy has gotten so much worse. If you Google "Sjorgen's and neuropathy" lots of educational material will come up I know that when they said Gareth had the dry eyes/mouth, that I read a lot about Sjorgen's. One of the meds used for Sjorgen's is Plaquenil, but Gareth's been on it for years and he still developed dry eyes/mouth.

     

    It's interesting to read about the affects of Scleroderma on your internal organs. Gareth just had an endoscopy and the doctor said his esophagus looked like a "silly, curly straw" due to his connective tissue disease. I will have to keep tabs on his intestines, etc.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 26 years old, DS/ASD


  17. Hi Judy,

     

    Is it painful or just discomforting?  I don' t know and Gareth doesn't communicate well enough to tell me.  :(  He starts this contorted *ticking* action with neck, face, and shoulder when eating. But if I ask, *Are you hurting?* he will say no.  It sure looks like he's hurting, somewhere.  Maybe his contortions and stretching are forcing the esophagus to go straighter and food goes down.   Who knows?!?!?     :emoticon-dont-know:   He already washes his meals down with milk, juices and water. 

     

    Thanks for all the support. Gareth smiles and laughs at your emoticons!! 

     

    Take care, Everyone.

    Margaret


  18. Hi Everyone,

     

    Just got back from the hospital.  Gareth had his esophagus stretched --again -- second time now. The doctor said he would need it done every 12-14 months now.  She said that most people have a straight esophagus, but Gareth's looks like one of the silly curly, swirly straws!!   :lol:   It would explain why his food has problems going down. 

     

    The curving is coming from the connective tissue disease, which is tightening some areas of the esophagus and not others, thus the twisting.  He has gastritis, which is nothing new.  She is upping his Prilosec to twice a day, for 6 weeks, then back to once a day.  She said when he complains about his food being stuck high in his neck area, it is really stuck in the lower 1/2 - 1/3.  It's the way the nerves/body/brain reads it. 

     

    He wanted to eat as soon as he walked in the door, so he's not hurting too bad now.  :yes:

     

    Take care, Everyone,

     

    Margaret

    Mom to Gareth, DS/ASD


  19. Hi Kking87 ,

     

    <<I'm sure there are bad and good days but right now I just feel like I'm in a black hole :(>>

     

    This caught my eye....any autoimmune disease that attacks the body can also affect the brain chemistry. Depression is common in many autoimmune diseases....please, don't hesitate to ask for help if you need it. You're not alone in that category!!! :(

     

    You're close to my son's age....he'll be 27 in May. His autoimmune issues started at age 18, with + blood work for Scleroderma, severe fatigue, chostrochondritis, hardening of vocal cords, depression, and full esophageal dismotility. The Scleroderma expert said no to Scleroderma since he had no skin issues, no Raynauld's, or other issues related to Scleroderma. His diagnosis was UCTD. He was put on Plaquenil and he improved quite a bit. He still has esophageal dismotility on the lower 1/3 of his esophagus and it needs to be stretched every 12-18 months. He was put on Lexapro for the severe depression and that helped. He has developed mild Raynaud&#39;s' and SICCA over the years....nothing severe, though.

     

    This site has been a life saver for many of us. The medical information is up to date, informative, and correct.....unlike the depressing, my-son-is-going-to-die-soon, information that I read on the web before landing here!!! :emoticons-yes: Goodness....it's been over 8 years now and he's still around enjoying life!!!

     

    Take care and keep us all posted on your health,

    Margaret

    Mom to Gareth, 26 years old, DS/ASD