Jump to content
Sclero Forums

Margaret

Members
  • Content count

    1,023
  • Joined

  • Last visited

Posts posted by Margaret


  1. Hi Sam ....... Is it back pain from muscle spasms? You can get a TENS unit that send stimuli through the muscles to stop the spasms. If you go to a PT/chirop they should be able to get you one through insurance. My son also goes to sleep each night laying on a heating pad because of back pain. I did not know it could be related to the scleroderma. I just assumed it was weak muscles.

    Take care, Everyone.

    Margaret


  2. Janey, Miocean and Gidget......thanks for the responses. I have heard privately, too, and it looks like any one of the four would be an excellent choice. TJ would be the closest. After e-mailing back and forth with Dr Lehman (NYC) we are in a 'wait and see' mode....again....till after the blood work in Feb. The plus side for my son is that both the CT scan (done this past Mon) and X-ray showed no pul. infiltrates or fibrosis. Gastro doctor still can't figure out the bulge in the esophagus, though.

    Take care, Everyone.

    Margaret


  3. Hi, Everyone.....I just had my son to his primary care physician to discuss the past 3 months. He sees no reason to wait till Feb's blood work comes back and then another 2 weeks to see the ped rheumatologist again. He suggested getting him in to a sclero spec now. We live in SE Pa. The ped rheumatologist doctor suggested Dr Medsger in Pittsburgh. One of the other moms said they go to a juv. sclero spec in NYC.....any name/hospital with that info? What about Thomas Jefferson in Philly....it's under the spec list here. Does anyone know/go to the doctor there? His primary care physician said to consider John Hopkins but that is not listed as a spec. center. Philly is only an hour, JH's is 1 1/2 hrs, NYC and Pittsburgh would be closer to 4 hrs each. Driving would not be an issue....just want some info on the centers/doctors......patience is a necessity with my son!!!

    Take care, Everyone.

    Margaret


  4. Elehos and Kathy ,

     

    Thank you for telling me how you feel...whether it is painful, etc. Knowing that fatigue plays a part will help me in keeping an eye on it. I told his 1:1 aide about your responces. She's been with my son for 3 1/2 years and is like a second Mom to him at school.

     

    Take care, Everyone.

    Margaret


  5. Thanks Shelley. I am amazed how any one of you can pull up a website for someone asking for info!!! This is the most organized forum I have been to. We have an appt with his primary care physician on Thurs. to go over 'stuff' from the past 3 months.

    Take care, Everyone.

    Margaret


  6. Hi, Everyone....Does anyone else lose their voice...on and off throught the day...and have to whisper to be heard? Does anyone wake up and have absolutely no voice....not even a whisper? This is another problem my son has had for a couple of months and I haven't found any info on it. If I ask him 'does it hurt' he will shake his head 'no'. At times during school, his aide will have to struggle to hear him or he writes down on paper what he said. He will be going through the day and then, all of a sudden, he will say "it's back"...meaning his voice. Is there a Scleroderma reason for this and is it painful?

    Take care, Everyone.

    Margaret


  7. Hi, Everyone....would it be possible to get some options on what they use for pain meds for esophageal dismotility? My son 'shuts down' every two or three days because he 'hurts'. I give him 600 mg Motrin all day and Tylenal at night. Today was a 'bad' day. I feel so useless for him.....he went to bed laying on the heating pad because he has hurt all afternoon. We ate lunch out. All he had was a chicken sandwich and FF. I gave him Chicken Noodle soup and applesausce for supper but he went to bed at 7:30 because he hurt so bad. I feel like such a smuck for a Mom....there is nothing I can do for him. I called his ped gastro doctor 4 times last week and never got a return phone call. Perhaps if I had some suggestions for med, I could call his primary care physician and get them faster.

    Take care, Everyone.

    Margaret


  8. Hi Jennifer...I am new to this forum but do want to wish you well with your upcoming marriage. Your fiance must be a great guy to propose knowing your illness and complications that can arise. Congratulations and best wishes to both of you. Take care, Everyone.

    Margaret


  9. Hi, Everyone.....weight loss is why I took my son to his primary care physician the end of Sept. He had dropped below 150#. In July he was up to 158#. Four years ago, after he had his hip surgery, he reached close to 170#. doctor says he looks good (he's only 5'4") but agreed that significant weight loss without trying isn't good. That is what got the ball rolling on finding the Scleroderma.....not that anyone thought of that the end of Sept!!! He's down to 146# as of last Monday.

    Take care, Everyone.

    Margaret


  10. Hi Michael,

     

    I wanted to chime in and say that my son (18 years old, with Downs Syndrome/Autistic) has 5 pins holding his Rt hip together. They were put in almost 4 years ago. It's an interesting question even though he has always had 'health issues' because the rheumatologist doctor said last week that since his esophagus has stopped working, he has probably had the sS for a few years. He's been on GERD meds since he was 10 but that is common in kids with Downs Syndrome due to the lack of muscle tone. He has had 8 surgeries for pilonidal cysts, three of them with him being sent home with 'marsupial wounds' that needed to heal from the inside out.

     

    I guess finding the cause of Scleroderma is kind of like people trying to find the cause of autism. It use to be 1/1000 kids had autism, now it's 1/166. We have a whole generation of autistic kids. Maybe in a few years, from reading this site and the other Moms that have chimed in, we will have to add a generation of scleroderma kids, too. THAT is a SCARY thought.

     

    As for my son, we are STILL waiting for dates for the CT scan and MRA of the heart. I am getting so frustrated with the medical field/insurance company. They are so slow in getting anything done!!! Is this the norm for specialists, such as gastros and rheumatologists?

    Take care, Everyone.

    Margaret


  11. <<Have they tried any meds at all?>>

     

    Janey...no, they haven't discussed meds at all. He's been on Nexium and Zantac since he was 10 because of GERD. His ped rheumatologist doctor is waiting till Feb's blood tests come back before going into treatment options. He is just as confused as I am. He doesn't know of any kids with sS. His knowledge is based on "a few kids with skin issues." I think that is why he recommended the doctor in Pittburgh. Once again....thanks for all the info. This site is such a learning center!!!

    Take care, Everyone.

    Margaret


  12. <<I know I had swallowing problems and problems moving food into the stomach in the beginning but once I started on MTX, the swallowing problem went away>>

     

    Janey.....in reading this script from Pauline, you said meds helped with the swallowing. What is MTX? My son's rheumatologist. said the esophageal dismotility was probably permanent. Pauline....my son had his swallowing study done in Oct....that was the start of his road to Scleroderma. His esophagus deosn't work from the neck down.....he has to 'wash' everything down with milk/water.

     

    Once again....thanks for the discriptions from everyone else (jelly beans!!!)....it helps me to understand what my son is going through.

     

    Take care, Everyone.

    Margaret


  13. Hi Dawn.....my son is 18 and recently diagnosed with sine Scleroderma in Nov. I had him to the Ped rheumatologist on Thurs. and he said he's probably had it for years since his esophagus has stopped moving foods. Does your daughter have the skin problems or internal? I am new at all these terms, so forgive me if it sounds too harsh. I wish I could be of some help, but just wanted to let you know that you are not alone. My son is a dual diagnosed kid....Down syndrome and Autism. Unfortunately, his speech is so limited that pain is reflected in behaviors most of the time.

     

    Is there anyone on this forum who has sS and has esophageal dismotility? How long did you have the disease before your esophagus stopped working? That may help me in deciding about when this all started.

     

    Take care, Everyone.

    Margaret


  14. Hi Laurie.....I am also new to this forum as my son has had postive blood work for scleroderma the beginning of Nov. I had my son in to his Pediatric rheumatologist on Thurs and he suggested I take him to a Sclero specialist in Pittsburg....must be the same guy. It would only be a 4 hr drive for us since we are in eastern Pa. He's not sure what to do with him.....being 18 with probable sine Scleroderma. Right now, we are in a wait and see mode.....he wants all the blood work redone the first week in Feb. If it's all the same, then he's going to treat him as having sS and recommends us going to Pittsburg because he has never had a teenager with sS. He also said that his esophageal dismotility is probably permanent.

     

    On the plus side, the ped. gastro doctor did not see signs of 'watermelon' stomach when he did the endoscopy 2 weeks ago. We are still waiting on approval for CT scans of the chest and abdomen and an MRA of the heart. Gotta love the insurances nowadays!!! The MRA of the heart is going to be a bit tricky they said with the pins in his rt hip.

     

    I have been reading all the posts and learning so much from this site. I thank you all for posting your ups and downs and especially how much you feel pain wise. I know my son is 'hurting' tonight because we went out to dinner and he ate too much. He's grabbing /hitting his chest....he's got to be uncomfortable. Take care, Everyone.

    Margaret


  15. <<SCFE is slipped capital femural epiphesis (I think I spelled that right), and it's when the ball joint at the top of the femur pulls out of the hip socket,....a pin in the hip keeps it in place and allows the hip joint to continue to grow, but my son had it in both hips and ended up with a seriously damaged left hip joint......but how he walked around with hips like that for an entire year is a mystery to me>>

     

    Hi Elehos.....ouch!!! My son now has 5 pins holding what is left of his hip socket to his femur head. They did the Ganz procedure....cutting and shifting bone so they would not have to do a hip replacement since he's so young. Your son sounds like mine....how in the world did they walk around with it?!?!? His pediatrician said any 'normal adult' would have been in a wheel chair and on pain meds. Kids are so resilient, though. His surgery was when he was 15. Take care, Everyone.

    Margaret


  16. <<I would urge you to contact his doctor right away to report the development of these new symptoms, as they are quite unlikely to be related to scleroderma, and certainly they would not be part of a constellation of symptoms that would lead to a scleroderma diagnosis.>>

     

    Hi Shelley,

     

    I had him in to see his pscyh. last Tuesday. He had not been in since Aug., and I was telling him how he had gone downhill in his studies this fall and that he was being 'worked' up for scleroderma since his esophagus has stopped working. He told me that scleroderma does cause mental problems because of mini strokes due to hardened collogen building up in the brain capillaries. They can break off like bits of cholesterol due?? He also said that his cognitive abilities may get worse if he does have scleroderma.

     

    <<You mentioned that he walked around with almost no hip socket left, so I take it he had (has?) SCFE? If so, my son had bilateral SCFE, and it took his doctor a year to finally do the x-rays and set him up with surgery in 2005. With your son's slow walking, I wonder how his hips are doing, and if perhaps his other hip might be going as well.>>

     

    Hi Elehos,

    What is SCFE? His hip dysplasia was from low muscle tone due to the DS. His other hip is fine....found that out last month when the rheumatologist. doc ordered a full body scan to r/o rheumatologist. or some other autoimmune bone disease. Everything came back negative. They are really grasping at straws here. The gastro doctor, unfortunately, seems to pulling all the right ones, though.

     

    I like the term 'brain fog' .......my son always says "duh....brain cells" whenever he does something dumb or can't remember. He'll hit the side of his head when he says it like he's trying to wake them up!!! Thanks again for all the replies. I am learning so much and appreciate the help. I trully hope it's not scleroderma only because of all the messages I have been reading and the pain so many of you are in.

    Take care, Everyone.

    Margaret


  17. Hi Shelly.....DS is for down syndrome. My son is dual diagnosed....born with DS and at age 5 diagnosed with autism. They have found that Alzheimer is on the 21 chromosome and since DS kids have 3 of the 21 chromosomes, it explains why they have such a higher incident of it earlier in life than the normal population.

    Heidi....thanks for the link about cognitive impairment. I am learning soooooooo much form this site.

    Margaret


  18. Heidi and Michael.....thank you for responding. Do you have any info on 'zoning out'? My son is high functioning but will get 'that' look in his eyes like he isn't even hearing me or understanding what I am saying. They say in school his grades have fallen this Fall because he doesn't remember the stuff he learned in the past years. Regression is common in autism but this is a different look. Would that be a 'sign' for the rheumatologist? Another 'sign' is the fact that he has started to walk sooooooooooooooo slow!!! I mean, he has always been slow, but this is ridiculus!!! Evolution goes faster!!! He has an endoscopy scheduled for Tues. and a CT scan for Friday.....both ordered by the gastro doctor. He wants his chest scanned for 'fibrosis'. Another thing that is in the back of my mind is the fact the DS adults have such a higher incidence of Alzheimer because they are both are the 21 chromosome. This is all new to me.......please bare with me and my silly questions.

    Margaret


  19. Hi, Everyone....I am new and would like some info/suggestions for helping my son. He is 18 years old, DS/autistic and started grabbing at his throat in Sept. In Oct. we found that his esophagus has stopped working and lots of blood tests were done. Thursday, I found out from his Gastro doctor that 2/3 blood test for scleroderma came back positve.

    Anti-RNA Polymerase 1/111 positive

    ANA titer positive

    Scleroderma AB negative.

    I have been on line and found info for the first two blood tests but can find nothing on a blood test called Scleroderma AB. Does anyone have another name for it? Since he has no skin issues, I am assuming this will be sine Scleroderma. His gastro doctor says to wait and ask the rheumatologist doctor Dec. 28th. That is an eternity for me!!! I have been reading many of the other letters and find that many of you are in pain. Because of the autism, I never know how much pain my son is in. He walked around with almost no hip socket for years and his esophagus looked like raw meat when his GERD was finally detected. Pain is displayed in behaviors. Even when I ask him if he hurts and does he want Motrin, he will say 'I fine.' His speech is so limited.......I just want to know what to look for and help him the best I can.

    Margaret

×