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Everything posted by Margaret

  1. Margaret

    I'm New Here...

    Hi Hope , I just wanted to say 'hello' and welcome to the group. My situation is reversed from yours. I am the Mom and my son, who is an 18 years old senior, was diagnosed last fall with probable sine Scleroderma. I, too, was very depressed when reading all the reports on sclero but with all the new medical information and meds, etc., I am very optimistic about him having a fairly long life. Take care, Everyone. Margaret
  2. Margaret

    First Gastro. Appt.

    <<I guess my heart got a little jealous of my son's murmur and had to have one too. News to me as my gastro doctor told me offhandedly, assuming I already knew I guess. He just says to his intern, "Yea, probably the scleroderma going to work there" >> Morning Barefut , This is interesting because Gareth had his echo 2 weeks ago and the cardiologist found a heart murmur on Gareth that wasn't detected before. He said it wasn't related to Scleroderma. I know they found one in me 5 years ago.....guess it is fairly common. Good luck with the foloowup and keep us posted. Take care, Everyone. Margaret
  3. Margaret

    A Big Thank You On Behalf Of My Son!

    Hi Carolynv , I am so glad your son is getting help. I am a Mom with a son diagnosed last fall with sine Scleroderma.....only he is 18 years old. I have learned so much from these folks. Take care, Everyone. Margaret
  4. Margaret

    The Incredible Shrinking Mouth

    Barefut , You're such a 'case'!!! How's the kiddo? Margaret
  5. <<Has Gareth had any lung function tests or x-rays or a CT? >> Hi, Everyone.....thank you for your help in explaining what you are feeling. Janey....Gareth had a CT scan and X-ray done in Dec. Nothing showed up as far as fibrosis, etc. The Pul fuct test done in Feb showed the 'mild restrictive lung disease.' I don't know if RLD is the same as ILD. I am wondering if his lung issues have progressed since Dec. to the point where fbrosis would show up on an X-ray. He sees his rheumatologist the end of April. Guess that is something to ask about. <<It feels like I have a huge rubberband around me and I need to take a deep breath but I can't. >> Lisa and Jen....he has said before "Tight, Mom" when he gets home from playing basketball or tennis!!! Maybe that is what he's feeling....a tighning sensation and not being able to breath deeply. He ususally just sits in the recliner for the rest of the evening doing as little as possible. Thanks again, Everyone. I so appreciate it. Margaret
  6. Hi, Everyone....Once again, I need some help in figuring out what Gareth is feeling. His PFT showed mild restrictive lung disease. Today in gym class, his aide said he ran very little around the track and tired easily. I am getting the feeling that none of his doctors want to take control of him till we hear back from Dr Medsger.....that will be 3 weeks tomorrow. For those of you with RLD....is it painful when you run/exercise? His aide wanted to know if there should be restrictions for PE. Is it a tightning feeling, hurting feeling, breathless feeling.... I don't have a clue!!! Thank you and take care, Everyone. Margaret
  7. Margaret

    Still Stressing About My Son

    Hi Barefut , Been thinking of you and your son, too. Hope it turns out OK and the antibiotics kick in soon. Sounds like he may need them changed or something. Do take care of yourself so you can help your son. Believe me, I know the effects of many sleepless nights worrying over kids!!! Margaret
  8. Hi Barefut , This is interesting because Gareth doens't run a fever either. The only way I know he has strep is because he has a day of throwing up first, and, then, this horrible breath. Of course, he never says his throat hurts, so I take him in when I smell the horrible breath. I learned a long time ago that an upset stomach can be one of the first signs of strep. So glad your son is OK. Take care, Everyone. Margaret
  9. Barefut , How is your son today? You've been on my mind all day. Margaret
  10. Margaret

    Cardiac Ablation And Meds Decision

    Hi Janey , Just wanted to wish you well for Friday. I have no clue what ablation for the heart is about but it sounds like a 'rooto rooter (sp)' job for the heart!!! You'll be in my thoughts, Margaret
  11. Margaret

    To All Who Have

    <<did you have a positive ANA or SCL-70/Anti centromere when first diagnosed, and if or what organs have been affected over what period of time?. I hope that you don't feel that I am intruding on you all but am curious! Kind Regards Celia>> Hi Celia , I can only speak for my son. He was diagnosed last Oct with esophageal dismotility after a swallowing test. He also had a 15# wt loss at the time and a high sed rate. The blood work done in Nov. showed negative ACA and Sclero AB autobodies, but postive Anti-RNA Polymerase 1/111 and a positive ANA. Since then, he has also had a PFT done that showed some restrictive lung disease. There's some really good info in the medical section on the types of blood work and from what I have learned, not all sclero pts show positive test results but can still have the disease. Take care, Everyone. Margaret
  12. Margaret

    Happy St. Patricks Day!

    Louise , Enjoy the day!!! You deserve it. My dear husband and 20 years old son both play rugby. I can not stand to watch Ryan play, though. Last fall, he had a major collision and now is the proud owner of a $7500 face remake!!! Rugby is growing here in the States.....much to my dismay!!! Happy Paddy's Day to you.....from a 1/2 Irish American!!! Margaret
  13. Margaret


    Hi, Everyone , Could use a little help/advice. I have gone through the medical papers and nothing lists hallucinations as a symptom for sclero. Does anyone have any facts on this possibility or has anyone else suffered the same. Gareth's started as the slapping around his mouth. Now it'smacking the air for bugs (?) or smacking behind his head as if to hit someone standing there. I will take him in tomorrow to have his ears/eyes checked, but wish there was some info to go in with. Of course, when I ask him why he did that or does he see bugs, I get no answer. Thanks everyone.........take care, Margaret
  14. Margaret


    <<Tonight I was practicing Tae Kwon Do with my son. I can do some pretty awesome kicks for an old lady of 41 with scleroderma. I might just have to sign up for the class and start working towards a black belt. Love, Barefut >> Barefyt , Thanks for putting a smile on my face this morning!!! Take care, Everyone. Margaret
  15. Margaret


    Hi Pauline , Gareth is 18 years old....not a little guy....Just very few words due to the DS/Autism. We are assuming the hallucinations were from a severe left ear infection. His primary care physician found it Mon. am and put him on meds. Late Tues am, after a nap, I noticed all the blood and puss coming from that ear....he probably ruptured it again. He does not tell me when or where he hurts....everything comes out in behaviors. He's acting OK today. The other possibility for the hallucinations is the Prilosec. He was switched to that from the Nexium 3 days before the hallucinations started. One of the rare side effects of Prilosec are hallucinations. His gastro doctor said to drop it immediately when I talked to him on Mon. Maybe down the road, after the ear is OK, we will try it again. Take care, Everyone. Margaret
  16. Margaret

    Burning Pain In Fingertips

    Hi Irene , That is interesting to me. Gareth will show me the tip of his finger (pad side) and say 'sunburn'. I always look and never see anything. I have never seen his finders turn white, although he always has cold hands. Take care, Everyone. Margaret
  17. Margaret


    Barefut , Thanks for those face exercises. I will have to try them with Gareth since his mouth is has been bothering him so much. Pauline.....it's nice when people post how they feel....it really helps me with understanding Gareth's behaviors. Take care, Everyone. Margaret
  18. Margaret


    Hi Everyone, Well, today Gareth got up and was still swatting at 'things' so I kept him home. He napped from 8:30-11:00 and woke up with puss and fluid drainging from his ear. Blew out his ear drum....again....only the 8-9th time!!! Twice today, I heard him say "ear hurts." Now.......if I can get him to tell me that BEFORE he starts hallucinating and blows it out!!! Emmie.....he has a 1-1 aide at school and all his teachers have been trying to piece together why he has been acting like he has. They have been great this school year considering his academics have declined dramatically and he's gone from this happy, go lucky kid to a very reclusive kid. I had him in to his pediatric pscyhiatrist today because of the swatting and hallucinations. His doctor also brought in another doctor that works with autoimmune psychiatric problems. WHAT?? I told him that I was just informed that Scleroderma doesn't affect the brain/cognitive functions and he just looked at me and gave me the reasoning behind why ANY autoimmune disease affects the brain. Has to do with T cells, interferon, seratonin, etc. Sure made sense to me!!! Anyways, they want to wait till Gareth finishes his antibiotics and keep him off the Prilosec. I am to call him in a week or sooner if he appears to get worse. Gareth is already on meds (Luvox) for OCD....another autism 'problem.' He said we may have to change the Luvox to somethign else. Take care, Everyone, and once again, thanks so much for all the helpful hints. Margaret
  19. Margaret

    Pft Results

    Sherrill....thanks. I put it under my 'favorites.' Margaret
  20. Margaret

    Pft Results

    Hi, Everyone....OK...I have been through the forum pages and medical sheets. I know someone posted about understanding PFT results a while back. I can't find that site. Gareth's is written up as "mild restrictive pulmonary physiology with reduced lung capacity. There is severely reduced forced vital capacity" Where is the site to help me understand all the numbers on the sheet? Thanks.......again!!! Margaret
  21. Margaret


    Hi, Everyone......Gareth does have any eye appt for Friday to r/o floaters. BUT....his bug swatting and lashing out at invisable objects was really bad tonight so I got out the PDR. Prilosec also causes hallucinations in rare cases!!! He switched over to it 7 days ago....the weird behaviors started Sat. I have to call his gastro doctor tomoroow. Take care, Everyone. Margaret
  22. Margaret


    Thank you everyone. Sherrill, that is intersting that Motrin would cause those side effects. I know............ every med has some side effect......######.....you just don't know. I did have Gareth in to his primary care physician today and he has a whopper of a left ear infection. Drives me nuts.....I asked him all weekend if his ears hurt ("No hurt" he said) and he had no fever. Also, I have an appt with his psych doctor tomorrow to check out the 'schizo' issues. Between the two of them, they will run the gamet of blood work. Elehos....his primary care physician wants him checked for floaters, too. Gotta find an eye doctor, now!!! He doesn't want him to go to an optomitrist, but a REAL eye doctor, he said. Thanks, Everyone. I sooooooooooo appreciate your help. Margaret
  23. Margaret

    Gareth Update

    Hi Everyone, Well, our long awaited visit to the Sclero specialist in Pittsburgh was Wed. and I am so disappointed. Basically, yes, Gareth has Esoph dismot., 18#weight loss, restrictive lung disease, and positve blood works. But.....he is not making any diagnosis because he doesn't have the Raynauds or skin involvement. He took 5-6 tubes of blood and wants to run his own tests and will get back to us. For this, we drove 5 hrs!!! No medications or nothing. He sooooooooooo downplayed the whole Scleroderma disease itself. Sclero doesn't cause pain.....hear that you guys!!! I thought to myself, he should read this site someday!!! Sclero doesn't affect the voice or the brain/cognitive functions. Esoph dismotility is a nuicence but not life threatening. Obviously, he hasn't had a hard boiled egg stuck in his throat all day!!! I don't know.....very bummed when we left there. So, now we will wait a little longer and see what his blood tests show. He did say that Gareth may be in pre-Sclero stages. His nurse was the nicest lady, though, and told me that sclero pts do have vocal issues.......go figure!!! Take care, Everyone. Margaret
  24. Margaret


    Pamela , I was thinking the same but the only thing he has been taking is Motrin and Tylenol....all within the recommended dosages, too. Neither one of them list hallucinations as side effects, though. His primary care physician is really good....I am sure he will run a gamet of blood tests tomorrow. I was really hoping someone could come up with an article or something....... Thanks and take care, Margaret
  25. Margaret

    Gareth Update

    Jennifer , That was another issue that he was surprised about....that Gareth has no joint pain/issues in his shoulders and hands. He had to be mistaken about the 'no pain' issue. Maybe he had other things on his mind. He checked G's arm/shoulder movements and kept asking him if it hurt!!! I don't know.....still waiting for his phone call. I know I heard him right, because I immediately thought of all of you and how much pain you guys are in. I am keeping Gareth home tomorrow because the kid is acting schizo. He's swatting at bugs that aren't there and lashing out at 'things' behind his back. I am going to take him in to his primary care physician to check his ears and eyes. Anyone who has any suggestions as to what it can be, please feel free to chime in!!! Of course, there is no way for him to tell me what's going on!!! Take care, Everyone. Margaret