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Margaret

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Posts posted by Margaret


  1. <<<  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


  2. 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


  3. 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


  4. 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


  5. 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


  6. 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


  7. 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


  8. 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


  9. 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


  10. 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


  11. 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


  12. 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


  13. 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


  14. Hi....welcome to the group.  I am sorry to hear that your sister has scleroderma, especially at such a young age.  My son was diagnosis'd with UCTD at age 18.  He has always had exercise induced asthma and was put on Singulair several years AFTER his diagnosis because his asthma had gotten worse.  Quite interesting thread here!    :emoticon-dont-know:  It has helped his asthma.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 26 years old, DS/ASD


  15. To all my wonderful scleroderma friends.....Happy New Year and best wishes to all in managing this disease with all it's pain, symptoms, and quirks. 

     

    Take care, Everyone.

    Margaret

    Mom to Gareth,  26 years old, DS/ASD

     

     


  16. Hi Judy....I sure hope you had a relaxing holiday today. Sorry to hear of the rocky start.

     

    Alice....my son has had gastric problems from the onset, at age 18.  It's his major problem with this disease. He's currently having swallowing issues and is scheduled (end of Jan) for his yearly endoscopy/stretching treatment. He's got bleeding from the *other end*,  so that will have to be checked out, also.  :(

     

    I hope all who celebrate had a wonderful holiday.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 26 years old, DS/ASD


  17. Hi Kathy,

     

    The expert said his ANA was *speckled pattern with diffuse cytoplasma*, consistent with scleroderma.  I haven't checked into that for years, so maybe those criteria have changed.  Very little is published about the + Anti-RNA Polymerase antibodies, too, except that he's more susceptible to renal involvement/failure.

     

    Have a good day, Everyone.

    Margaret


  18. Hi Sara

     

    Welcome to the forums. I've been on for about 8 years now because my son had esophageal dismotility, at the age of 18, and we were thrown into the world of scleroderma. His gastric doctor ran all the blood work for scleroderma and his came back with a + ANA, super high SED rate, and + Anti-RNA Polymerase 1/111. His only symptom was the esophageal dismotility and the gastric doctor said *sine scleroderma*. Well, it took forever to get into the scleroderma expert and I was panicking the whole time.....thinking he'd die very young because of some unknown, weird, off the wall disease!! They have come a long way in 8 years!! The expert said no to scleroderma, but yes to UCTD (Undifferenciated Connective Tissue disease). After 9 months of testing and figuring out what to do next, they put him on Plaquinel. It's an anti-malaria drug that is suppose to *jump start* the immune system. I never understood that explanation since scleroderma is the immune system attacking your own body!! Anyhow....it worked and within 2-3 months, his dismotility eased up and he was doing OK.

     

    Over the past years, he has developed mild Sjogren's and Raynaud's. His biggest complains but is chronic pain in his legs and fatigue. Oh....also....depression. His doctor told me that the same autoimmune issues that attack the rest of the body may also affect the brain chemistry. Please, do not hesitate in seeking help for depression/anxiety/sadness etc, especailly since you have a young child at home. The leaders of this forum are great and will walk you through anything. :emoticons-clap:l

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 26 years old, DS/ASD


  19. Hi Greypilgrim ,

     

    I have a 26 years old son who receives IVIg infusions, once a month, due to an immuno deficiency.  His body can fight viral infections but not bacterial infections.  Like Shelley said, he did have an anaphalactic shock reaction, last December, after receiving them for two years..    After  8 months of no infusions, serious medical issues due to infections, they came up with another concoction/brand.  He's had 4, so far, with no reaction.  The cost is upwards of $10,000 + per infusion!!  We are fortunate to have two medical insurance policies, that split the bill.  We could not afford that ourselves.

     

    My son was diagnosis'd with UCTD, at the age of 18, and I can say that I have seen no improvement in that aspect of his medical issues.  He still has the esophageal dismotility, Raynaud's, Sjogren's, hypothyroidism,and chronic pain/fatigue.   At age 18, his blood work was ANA+ for scleroderma and anti-RNA polymerase 1/111, but his only sclero issues were the esophageal dismotility....no skin issues.  Everyone is different in this disease......not sure if infusions would help others or not.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, DS/ASD


  20. Hi Miocean ,

     

    I feel so sad that you're in such pain.  You've always been so supportive to everyone and it's just not fair.  I wish we could wave magic wands and make our lives pain free.  Like Sweet, all I can offer is a huge cyber hug and keep you in my daily thoughts. :emoticon-hug:

     

    Also, since I haven't been on for a while, did I miss a post about your lung transplant....being denied?

     

    Take care, Everyone.....hugs to all     :emoticon-hug:

    Margaret


  21. Hi Judy, Shelley  & everyone else......yes, it has been awhile since I posted.  I do email Shelley occasionally and she tells me to write the group, but I never get around to it. 

     

    Gareth had a horrible first part of 2014....not Sclero related, though.  He went into anaphylactic shock last Dec, while getting his monthly IV Ig.  Last BP yelled by the nurse was 48/24.  Thank goodness he was in the Med/Surgical unit!!  Anyway, they didn't believe it was from the IV Ig, since it is a human/natural product, and they tried again in Jan.  Again, his BP started to nosedive.  They stopped the infusions and,  by April, he was on constant antibiotics from ear/sinus/lung infections. He's immune deficient in IgG 2/4  they fight bacterial infections.  Anyway, by July they are doing Mastoid surgery, 2nd time, and they find he's got a nickel size hole eaten from the Mastoid process into the brain all due to an infectious cyst.  I didn't know infection can eat through bone.

     

    In Aug, they sent him to an Infectious control doctor who tried another IV Ig/steroid/benadryll concoction.  He has tolerated that for two months.  Tomorrow will be his third time with this concoction.  Now that he's back on the infusions, he's healthy.  You've got to love modern medicine!!

     

    I do read the forums....just never reply.  You guys are all a great source of information.  Wouldn't know what to do without your insights.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 26 years old, DS/ASD

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