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Everything posted by Margaret

  1. Faces

    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
  2. Hallucinations

    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
  3. 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
  4. Pft Results

    Sherrill....thanks. I put it under my 'favorites.' Margaret
  5. Hallucinations

    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
  6. Hallucinations

    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
  7. 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
  8. Hallucinations

    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
  9. 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
  10. Gareth Update

    Janey , Sine Sclero is what the local rheumatologist diagnosed him with in Dec after the blood work and espoh. dismotility. I guess since doctor said that diagnosis is 1/10,000 people, he's going to be sure. I think he mentioned that he has seen 2 in his years. Take care, Everyone. Margaret
  11. Tender Spots

    <<That's completely off-topic of your question, but you know how it is, sometimes I start typing and my fingers just don't know when to shut up. Warm Hugs, Shelley Ensz>> Oh. but Shelley....those fingers hold sooooooooo much useful information!!! Take care, Everyone. Margaret
  12. Dry Mouth

    Hi.....Gareth doesn't have dry lips as bad as the area around his mouth which is red and chapped this winter.....something that has never happened before. I have been smearing Neosporin on it after he goes to sleep since he won't tolerate lotions, smells, etc. while awake. Also, I notice two white spots under his lower lip skin.....calcifications??? Is that the way they come through? Take care, Everyone. Margaret
  13. Raynauds Question

    Hi Barbs , We were at a funeral last month for my dear husband's aunt (90+years old) when he struck up a conversation with his cousin. Her husband has Raynauds and I spoke with him after the service. It was very interesting watching him during the service as he was one of the poll bearers and when he came in from the cold, he was holding and rubbing his hands. He showed me later how they had turned colors and hurt so bad. He was very helpful in giving info for Gareth. Take care, Everyone. Margaret
  14. Basal Cell Skin Cancer

    Hi Ani , I think you are spelling it wrong. It's Basel cell carcinoma. It's the most commonest from of skin cancer. Margaret
  15. Typical Age Of Dx?

    Hi Kelly , My son, Gareth, is 18y/o and was diagnosed last fall with sine Scleroderma after his swallowing study showed Esophageal dismotility. He's DS/autistic and was grabbing at his throat. He had also lost 10#'s since July without dieting. After the gastro doctor saw the esoph dism. he had blood drawn and Gareth had a positive ANA titer, high sed rate, and positive Anti-RNA Polymerase 1/111. Repeat blood work the end of Jan were also positive. He's had the dysphonia since Nov, fatigue, and major 'brain fogs' a lot of days. His Pul function test from Tues. shows restrictive pul disease. He's got an appt with Dr Medsger for March 7th. He has no Raynauds symptoms, skin or finger issues, or tet (spots). Take care, Everyone. Margaret
  16. Great News Today

    <<I hope Garce continues to have a safe recovery.>> OOPS!!!! Grace...so much for checking my spelling!!! M
  17. Great News Today

    Lisa , That is such good news. Isn't modern medicine wonderful?!?!? I hope Garce continues to have a safe recovery. Take care, Margaret
  18. Really Really Bad Day

    Hi Barefut , If it makes you fell any better, I also had a really bad day yesterday with a visit to Gareth's rheumatologist and reports from his PFT that he has restrictive lung disease. His rheumatologist. said Dr Medsger is 'big' on d-Penacilliam (sp) but from what I have read on that drug, it will either kill you or cure you. I wish I lived near you and I would reach out and give you a much needed hug of support. I went to the info on PFT tests and read up last night. His Pediatrian is the one who called me with the reports on his PFT and said he's glad Gareth has an appt with Dr Medgser. I can understand why you all have bouts of depression....I am getting so bummed myself and I don't even have Sclero. You are all in my thoughts. My heart goes out to all of you and your extended families. This disease is definitely one that affects every member of the family.....from those afflicted, to spouses and to young kids who don't quite understand why Mom can't do things with them. Take care, Everyone. Margaret
  19. Life Insurance With No Medical Exams

    Hi Jennifer , The Artisiens are an insurance group that will give policies to special needs/sick kids if you wanted a small policy for your daughter.....no medical history or exam is needed. They also have policies for adults and I do not know for sure, but I don't think exams are required. Take care, Everyone. Margaret
  20. Mind Games

    Hi Everyone....while we are on the issue of cognitive abilities or decreasing abilities, has anyone experienced unusual anxieties or fears along with their sclero. Gareth has come up with a few 'quirks' that can't really be explained......fear of the gym (he always loved PE), fear of going into/staying in church (he use to love church music), doesn' want the TV/sterio on. Just curious. It could very well be the autism.....it rears it's ugly head at times and shows some new, weird, extreme quirks. Take care, Everyone. Margaret
  21. Mind Games

    Hi Giorgigirl , I know that my son has shown a marked decrease in academics this past school year and when I asked his ped psychiatrist about it last Dec., he told me if he does have Scleroderma that it will only get worse. Even with Gareth's DS/Autism, he is a very high functioning kid academically, but those abilities are dropping very fast. He has told me 'I don't understand words.' The Sclero A-Z has some reports of decrease cognitive abilities. I don't think it affects eveyone, though. It's probably like all the other sclero stuff......everyone is unique in their disease. Take care, Everyone. Margaret
  22. Cobwebs On Face?

    Hi Everyone....a while back, when I first joined this site, someone mentioned the sensation of cobwebs on their face. Gareth has started to slap his face.....usually very suddenly and around his mouth. I ask him 'what was that for?' and he just gives me a 'lost look.' Is it an internal sensation or like something is on the skin outside? I wash his face with a warm washclothe but he keeps doing it. Take care, Everyone. Margaret
  23. Cobwebs On Face?

    Hi Kelly , Thanks for the response. My son was just diagnosed with sine Scleroderma last Nov after they found he had esophageal dismotility. He's 18 years old and has Down syndrome and autism. The autism limits his speach, emotions, pain, etc. I never know what is going on and how he feels. This site is a blessing for me because people tell me how they feel and I can relate that to Gareth. Take care, Everyone. Margaret
  24. Cobwebs On Face?

    Hi Sweet & Barefut , Thanks....I thought it was something to that affect, but I don't understand his slapping himself. I have been reading through so much in the medical section trying to figure out what is SS related. I came across some stuff on the Cognitive Impairments, too, that go along with SS and e-mailed them to one of his teachers who gave him detention the other day because he refused to read out loud in class. He told me 'I don't understand.' Like I said before, you guys are my voice to understanding this disease........you have no idea how much I apprectiate it. Take care, Everyone. Margaret
  25. Diffuse Systemic

    Hi Oddone , Your questions are very much like mine. Gareth is male, 18 years old, dx'd with sine Scleroderma in Dec. Having the positive Anti RNA Polymerase test is VERY depressing for me because of what I read. BUT......with the medical knowledge of today and keeping up to date on blood work, kidney function, etc, I am optimistic about his future. Since he hasn't got the skin problems, his symptoms started with the diagnosis of esophageal dismotility....already one strike against him. Take care, Everyone. Margaret