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Everything posted by Margaret

  1. IVIg Infusions

    Hi Everyone, I did it....I stuck my kid!!! Gareth never even flinched -- he just looked at me like I was nuts!!! :rolleyes: Like last week, it took 1 1/2 hrs and he did just fine. The nurse will come next week, and then, we're on our own. He saw the Immunologist today, too, and he said it will take almost 6 weeks for the body to build up immunity. He will have blood work done at that time to see if his levels of IgG have risen. I'll keep you all posted. :thank-you-2: Margaret
  2. Plaquenil pros and cons

    Hi Vanessa , My son was put on Plaquenil 9 months after being diagnosised with sine scleroderma. At the time, he had esophageal dysmotility (2/3rds of his esophagus), positive ANA, + Anti-RNA Polymerase 1/111, severe fatigue, and tightening of the chest cavity (chondro?). Anyway, it took them quite a bit of time to decide to try Plaquenil because he didn't 'fit' the scleroderma pattern. He was only 18 years old and male. It was 3 months later that he told me his 'food tube' was working again. He's been on it for 5 1/2 years now with no significant side affects or flares since. His biggest issue, like many of you, is the overwhelming fatigue/tiredness. I did ask his rheumatologist about taking him off it and she said 'NO'. His diagnosis now is considered UCTD. Take care, Everyone. Margaret
  3. IVIg Infusions

    Hi Everyone, Well, today Dad and Mom learned how to do subQ Ig infusions. :emoticons-clap: The nurse walked us through the prepping and put in the first needle. Dad did the second one with no problem. Me.......well......I just looked at that needle (1/2" long) and said "I can't do this." :unsure: They are very fine needles, go straight in all the way, and Gareth said they didn't hurt going in......but.....I just couldn't stick him. Not today, anyways.....maybe next week !!! It took about 1 1/2 hrs for the 50 cc's of fluid to go in the 3 needles and there was no major drop in BP this time. As of this evening, he's had no headache or other side affects. Janey......the nurse told me today that many insurance companies won't pay for weekly infusions because they are *more expensive*. I find that hard to believe since the individual is expected to do them on their own (after a 4 wk learning session) and in their home environment. I suppose the monthly IV's are done in a clinic or hospital setting with a nurse....right? :emoticon-dont-know: Also......Gareth saw his old Rheumatologist, from 2 years ago, on Thurs. He made a fine entrance.....when they called him to go back to the examining room, he stood up, walked two feet, and promptly crashed down. :excl: His BP dropped too fast and they came rushing with the wheelchair. doctor said he does not have Raynauld's if it is his hands and feet turning completely white, then red. That is from the vaso vaso constriction and OH. So.....I get to take that off his list of medical issues. :VeryHappy: She said R's is red, white, and blue....you need all three colors in the fingers and/or toes. You guys are great....thanks for being here!!! Take care, Everyone. Margaret
  4. IVIg Infusions

    Hi Everyone, Well, Gareth had the first infusion yesterday and no severe side affects or headache. It took about 2 1/2 hrs and the only *issue* that came up was his blood pressure dropping occassionally to @ 78/48. The nurse would *back off* a bit on the fluid speed and everything would return to normal. I guess this happened 2 times. On Monday, he will start the subQ infusions with 3 needles and a pump. She assurred me that this is something Gareth & I can learn to do weekly. My understanding is that it is like an insulin pump? I will keep you posted. Take care, Everyone. Margaret
  5. My thoughts are also with Birdman's wife and family. I forgot.....is she also struggling with Scleroderma? Margaret
  6. Yearly Test Updates

    Hi Miocean , I was so happy reading your post that I had to X out of AOL and go to Mozilla just so I can put up smiley faces and dance!!! For some reason, AOL doesn't allow them to come through. Congratulations, Lady!!! :emoticons-yes: You have been such an inspiration to me over the past years. :happy-day: :happy-dance: :emoticon-hug: :happy-dance: :happy-day: Take care, Everyone. Margaret
  7. Splitting up

    Hi Lynn , I, too, will keep you in my thoughts. Right now, you don't need the stress. Take good care of yourself and join us when you're settled in. Margaret
  8. IVIg Infusions

    Hey Ladies , I want you to know that you all brought a BIG smile to Gareth's face today when I showed him the smiley faces and dancing beavers!!! Thanks for the support and kind words.....I wouldn't know what I'd do without all your support. Take care, Everyone. Margaret
  9. IVIg Infusions

    Hi Everyone, Gareth will be starting the IvG infusions on January 16. I was so surprised when they called the week before holiday and said they would be out December 19th......less than two weeks after the doctor ordered them!!! I expected some long, drawn out fight with the insurance companies!!! We had to wait, though, since we went on vacation the week of December 25 for the whole week. The first dosage, GammaGuard is through an IV, for 2-3 hours. The following weeks, it's sub Q, with Hizentra, and should take 60 minutes. A nurse will come to the house and deal with it.....thankfully. I will keep all of you posted on how it works out. He's been having so many abdominal issues, lately, and has an upper barium scheduled for January 18. All he can tell me is that his belly hurts....not as bad as the gallbladder pain of last summer, though. Take care and best wishes to everyone this coming year of 2012. Margaret Mom to Gareth, 23 years old, DS/ASD
  10. Rapid skin thickening

    Miocean , I think the renal marker is the Anti-RNA Polymerase 1/111 blood test. Gareth is positive for that and his numbers keep getting higher although no one seems to have any knowledge of what that means. Having this positive blood work is specific to Scleroderma and puts one at a higher risk of renal failure. Take care, Everyone. Margaret
  11. Pulmonary Rehabilitation Dropout

    Hi Miocean , When I read this two weeks ago, I wanted to respond on two things....the statins and 12 minutes on the treadmill. My Mom only lasted two weeks on statins before she found her legs were too weak to walk much. That was her only new med so she was quick to make the connection. Second, Gareth doesn't have lung, kidney or heart issues and there is no way I could get 12 minutes out of him on the treadmill!!! I have always assumed it's the *fatigue* due to UCTD because he used to play sports so well. I'm glad to hear you're doing so well.....you're all an inspiration to me!!! Take care, Everyone. Margaret
  12. IVIg Infusions

    Hi Shelley , I was correct....I think!!! The 2 choices, as I understood them, was once a month via an IV line - taking 5-6 hrs OR once a week, through the abdomin, taking about 1 hour at a time. The weekly infusions are more steady in dosage as opposed to the once a month infusion where the levels peak very high, and then, dwindle down all month. I really don't know though.....I'm new to this, but I do believe we are talking about the same thing - IV Ig infusions. The doctor also said the weekly dosages cause less severe side affects.....if they are severe, then Gareth won't comply and go through with them. Take care, Everyone. Margaret
  13. IVIg Infusions

    Hi Everyone, We got the official word today that Gareth is a prime candidate for the IVIg infusions. His MBL deficiency, his inability to produce a response to the pneumo vaccine, and his IVIg 2 and 4 deficiencies. Both doctors recommend the weekly abdominal infusions, at home, with a nurse present. Needless to say, my jaw dropped when he told me the price per year! They will deal with the paperwork and contacting the insurance companies, thank goodness. My mind is confused. I'm scared that he 'sick enough' to justify them and cautiously hopeful that he will indeed be healthier. He's had a horrible year with two sinus surgeries in April and May, his gallbladder out in August, and mastoid surgery of his left ear last month. All were due to persistent, unresolved infections. I will keep my cyber family posted on when they start. I so much appreciate your input! Take care, Everyone. Margaret
  14. Low blood pressure

    Hi Everyone, I have a few questions about low blood pressure and UCTD/Raynauld's/Sjorgens's being the culprit. Gareth's had the diagnosis of Orthostatic hypotension since he was 15 years old and the doctors said he'd outgrow it. Well, two weeks ago he was hospitilized because of what appeared to be a major seizure. The cardiologist at the hospital found out his BP was the reason......110/70 laying down, and then, dropping to 70/48 when standing up. His pulse also makes a jump from laying to standing. He's been on a med now to raise and stabilize the BP for 2 weeks and no change. Since these illnesses cause changes in the blood vessels, is the medication really going to help or is this something that we will need to watch constantly? Has anyone had the diagnosis of Dysautonomia added to their records because of changes in veins/arteries do to Sclero/UCTD, etc? He had been falling a lot but we attributed it to an inner ear infection and his mastoid bone surgery in Oct. That is healed but the dizziness continues. I have read where others have low BP.....is it a constant feeling all day? Perhaps, that explains why he prefers to sit all day and do nothing!!! Thanks for all you help. Take care, Everyone. Margaret Mom to Gareth, 23 years old, DS/ASD
  15. Low blood pressure

    Hi Everyone, First, on this beautiful, sunny Thanksgiving Day, thank you all for the kind words and support. It's much appreciated and needed. I hope all are spending a relaxing day with family and friends. Shelley....the Cardiologist wants to do that Tilt table test on Gareth. He's scheduled to see him in Jan to decide. Gareth also doesn't sweat properly and his body temp can be anywhere from 96 to 99 at any given time during the day. It's definitely an autoimmune issue with him, I have many friends with children who have Down Syndrome and Autism, and Gareth is definitely a *one of a kind* !!! Miocean.....I will have to remember to tell Gareth to put his head back when he feels dizzy. The nurse and doctors did tell me to get him to kneel on the floor, though. Take care, Everyone, and don't eat too much!!! Margaret
  16. Low blood pressure

    <<I have had orthostatic intolerance (which is a subcategory of dysautonomia) for many years>> Hi, Shelley , What's the difference between O intolerance and O hypotension? Dysautonomia is a new one for me and it's been brought up as a possibility for the increase in his BP incidences. I guess the other concern is that his pulse rises 20+ beats when his blood pressure drops. On good days, he's on the floor because *legs weak* or *dizzy, Mom*. On bad days, he tells me *night, all black*....meaning he passed out completely with no warning. On Tuesday, we go see the Immunologist to decide on these IVIg treatments. I'll keep you all posted on that outcome. Thanks so much for all your help....it's so much appreciated. Margaret
  17. IVIg Infusions

    Hi Shelley, No, I haven't made a decision yet and Gareth doesn't see this doctor till the end of November. I am concerned that he wanted another IgA run on Gareth; that has always been High but no one said anything about it. That COULD be an indication of possible kidney problems due to the build up of IgA proteins in the kidneys, per the web, of course. I'll keep you posted. Take care, Everyone. Margaret
  18. IVIg Infusions

    Hi Janey, How bad are the headaches? Migraine types or just dull, aching head? He wants to start Gareth on weekly infusions. Did you have a port put in initially or did they just put the IV in weekly? How long do they take? Thanks for all your information. It really helps when I have to make a decision for him and I have no clue what he will experience. Take care, Everyone. Margaret
  19. Hi Chopper, Yes, the rheumatologist did explain why it was the better of the two and I think I remember it has to do with blood pressure. It has to do with the fact that the veins/arteries in the wrist are larger, so when they shut down and reopen, the blood flow is a larger amount, forcing open all the veins/arteries throughout the fingers. If only one or two fingers shut down, then there's less blood pressure on *each* finger to get them to reopen...thus, leaving open the possibility of them staying closed down for a longer period of time and reducing the blood needed for healing ulcers, etc. Does that make sense? As Shelley says, I am not a doctor so, please, don't quote me on this!!! Take care, Everyone. Margaret
  20. Hi Lisa ....welcome back!!! I hope your knee heals quickly and Grace makes a full recovery. That must have been one scary operation for a Mom to go through. Take care, Everyone. Margaret
  21. Hi Chopper , Gareth's hands blanch out completely white from the wrists down. They slowly turn red, and then, back to normal color. His rheumatologist told me this was atypical Raynauld's but the better of the two, because it's supposably better than if the fingers alone blanch out. Either way, it hurts/tingles. Take care, Everyone. Margaret
  22. Exciting Sclero Team Transitions

    Congratulations to all of you!!! Your dedication to giving us the best information and advice is so greatly appreciated. :emoticon-congratulations: Take care, Everyone. Margaret
  23. Gareth update

    Hi Everyone, As usual, I need some advice and want to know if others have had similar problems. Gareth's been having intermittent, severe pains (RLL/RUQ) since the middle of June. He's down 15 pounds and running a low grade fever on and off. All blood work, CT Scan, X-rays, Gallbladder ultrasound, and Endoscopy have been *negative* for anything. The pulmonary doctor said it was Pleurisy, but he didn't see him and the primary care physician said it wasn't. The pain went away for about a week, but came back with a vengeance this past Sunday. They plan to do an exploratory laproscopy next week for Gallbladder Colic and also take out the gallbladder -- just in case that's the problem. My concern is, what if that isn't the problem? This week, I started him on the *Gallbladder diet* but it really doesn't seem to be helping him much. Has anyone had gallbladder issues related to scleroderma that did not show up on testing? Would Sclero cause problems and not be seen on testings? Thanks everyone, Margaret
  24. Gareth update

    Hi Everyone, It's been 3 weeks since Gareth's gallbladder was removed and the pain is gone. The stitches came out last week by the RN and we will finally talk to the surgeon the end of the month. I guess that's the way he does his post ops....one month later. In the meantime, I have the biopsy report that shows the serosa of the gallbladder had a spot that was hemorrhagic and showing non-specific chronic inflammation. The serosa is the outside of the gallbladder! Also, for 2 months I was told that all his blood work was normal but finally recieved all those copies. His sed rate was up to 20 (4-10 is normal) and his C-Reactive protein was 8 (normal is 0 - 1.0). Both indicate inflammation. I'm happy he's getting back to normal. Now we just have to get him in to the Immunologist and find out about these deficiencies. Thank you all for your thoughts and advice. It's so much appreciated! Take care, Everyone. Margaret
  25. Gareth update

    Hi Everyone, Gareth came out of surgery fine. The surgeon said his gallbladder was dilated and the bile duct very long and restricted which is not a good combination. His said the pathology report will let them know if it's Sclero related. Thank you all for keeping him in your thoughts today. You guys are the best!!! On a side note, Ter and I were sitting in the recovery waiting room when the ripple of the Virginia earthquake went through. We looked at each other and said, "Earthquake?!" The irony is that we left Brea, California because of the earthquakes! Who would have thought we'd feel one in the central Pennsylvania mountains! Take care, Everyone, Margaret