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Everything posted by Margaret

  1. Hi, Everyone , I had Gareth in to see his ped gastro doctor today. Since we know his heart is OK, he and I have concluded (through all your help, of course) that Gareth is suffering from esophageal spasms after he eats a full meal. Monday evening was a really bad time and Gareth was very aggitated about his 'heart' thumping and esophagus hurting. Just sitting or standing would cause him to get upset. His doctor is going to have him try Isordil for the spasms. He said it is used for heart patients and has been shown to help muscle spasms in the esophagus. Is anyone on this med for spasms and if so, what side affects have you had besides a head ache? The pharmacy just called....they don't even have the med and will have it in by tomorrow!!! Take care, Everyone.....and, thanks!!! Margaret
  2. Vocal Cord Damage From Reflux?

    Hi Barefut , You can add Gareth to the list. In fact, we had this same discussion on the forum when I asked about it a couple of months ago. At that time, I didn't know why some days he had a voice and other days he didn't. His reflux is under control, too, so I know that isn't the problem. The ENT guys said the next time the gastro doctor puts him under, he will go in and check his vocal chords. Gareth gets so upset in church because he can't sing anymore....that is heartbreaking to me. He tries to sing and, then, the voice goes completely and he 'shuts' down on me. I tell him to whisper his song but he wants so much to sing out loud like everyone else....like he use to do. Take care, Everyone. Margaret
  3. Magazine Story Mentions Scleroderma

    Hi Everyone, Years ago, when the autism generation was starting, many poeple with Down Syndrome (DS) kids had a hard time getting their kids diagnosed with autism because many doctors didn't think DS kids could have both. There are many of us parents who, through years on a specific ds-autism site, have been able to educate doctors, school districts, and other parents about dual diagnosis. I, too, try to educate as many people as possible about scleroderma and UCTD now. I like the comparison to cancer, Jackie.....you are right, though, people don't question you on your diagnosis of cancer but everyone tells me how 'healthy' Gareth looks. Because of this site, Gareth's teachers and aide and all the families on the ds-autism know about sclero. Like this forum, we have a very compassionate group of families that are pro-active in spreading information. Take care, Everyone. Margaret
  4. <<When Gareth had his sleep study, I'm pretty sure they were monitoring his O2 levels so they probably would have said something. I know they monitored mine.>> Janey , I know they did because his O2 levels dropped to the low 80% when sleeping. He has been using the machine for over 3 years.....way before this sclero issue started. I will ask next week. Maybe they will do another study to be sure. Take care, Margaret
  5. <<Without O2 I was constantly in and out of apnea, but the O2 (and sleeping on my left side) completely stopped it. I guess they had to make a comparison. >> Hi Everyone, I am curious here. If Gareth already uses a C-Pap machine, does that mean his O2 levels are OK at night? No one has mentioned him seeing a Pul doctor yet even though the PFT showed mild restrictive lung disease. He's got to see the rheumatologist next week.....guess I should ask him. I know the C-Pap machine keeps the airway open and prevents apnea, but does it do anything for the O2 levels? Take care, Everyone. Margaret
  6. Sleep Apnea Results

    Hi Sheryl , Instead of going into the hospital for the sleep study, my husband had a machine at our house and hooked it up for a couple of days. Maybe that would be a cheaper alternative. Having sleep apnea is not 'hogwash.' Take care, Everyone. Margaret
  7. Plaquenil

    Hi Everyone, It's good reading these reports because Gareth's rheumatologist wants to start him on Plaquenil when we see him again on 4/26. Take care, Everyone. Margaret
  8. Depigmentation In Scleroderma

    Hi Irene , The older I get, the more white spots I find on my arms & legs and I don't have any autoimmune disease. They always look like I splashed bleach on myself. They aren't raised.....just tiny white spots of varying sizes scattered about. Take care, Everyone. Margaret
  9. Sleep Apnea Results

    Hi, Everyone ~~~~ Gareth has been using a C-Pap machine for over 3 years with little difficulty. He goes back and forth between the nasal plugs and the full mask. Unfortunately, it has done nothing for his fatigue the past 6 months. Take care, Everyone. Margaret
  10. Hi Sherrill , I have a TENS unit for my back spasms. Too bad it didn't say where to place the electrodes........I could try it on Gareth. Will have to ask his Gastro doctor in 2 weeks. Take care, Everyone. Margaret
  11. Fatigue

    Morning Everyone, Once again, I want to thank everyone for your honesty in expressing how you feel. I copied and e-mailed (minus names) many of the responces about fatigue to Gareth's aide, teachers, and rheumatologist. I told his rheumatologist this has been Gareth for 6 months now and I never had a clue that the fatigue could be so debilitating. His rheumatologist agreed and said t could be a major problem with sclero. Gee.....why didn't he ever say so!!! I also expressed my frustration with him that no one is taking charge of Gareth's situation.....everyone is waiting for Dr M to get back with blood results and that has been a month now. Haven't heard back from that e-mail!!! Anyways, I guess many of you have gone years without a definitive diagnosis, so I should not whine too loudly about the lack of one for Gareth the past 6 months. Once again................thank you for helping me understand what gareth is going through. I hope everyone has a fairly good day, Margaret
  12. Fatigue

    Hi Jennifer , Gareth sat around all day in his recliner and did absolutely NOTHING!!! No TV, no reading, no music, no church......nothing. He had a nap from 3-4:30 and went to bed at 7:15. Is that the kind of fatigue you are talking about? I just read where Sweet said she was put on Plaquenil for fatigue. Maybe I should ask G's doctor about that. I asked him all day if he hurt or if he was sick and he would say 'no.' Take care, Everyone. Margaret
  13. How Sick Do You Have To Be?

    Hi Celia , Gareth has been complaing that his collar bone hurts (where is joins the sternum) for months and no one can connect it to anything. Is that what you are feeling....sore bones or the tissue around the sternum? Just curious. Margaret
  14. Raynauds

    Hi Celia , Gareth does not have Raynaud's symptoms......yet. He's got esophageal and lung issues and positive blood work for scleroderma. Take care, Everyone. Margaret
  15. 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
  16. 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
  17. 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
  18. The Incredible Shrinking Mouth

    Barefut , You're such a 'case'!!! How's the kiddo? Margaret
  19. 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
  20. <<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
  21. 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
  22. 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
  23. Barefut , How is your son today? You've been on my mind all day. Margaret
  24. 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
  25. 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