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About madisonsmom

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  1. VERY long day today! Upper GI with small bowel follow through, IV infusion, ARNP (Advanced Registered Nurse Practitioner) looked at Madi, then Rheumatologist looked at Madi, and to end the day she had a dentist appointment. At least we accomplished a lot :) Rheumatologist said that she wants the CT of lungs to be repeated in 6 months rather than waiting 1 year. Madi will be finished with her Solumedrol infusions by then as well... to see if that helps at all. She said that the results were not "typical" for what they normally see...but that she doesn't want to dismiss it either. She also wants to complete the full 6 doses of steroids rather than stopping at 3 or 4 as mentioned as a possibility before. The reason for the full 6 doses is because of the changes on her legs as well as to cover the lung issue just in case it is related to scleroderma. She also said that the 2 cm bulla is too big to be dismissed, although not huge. Pulmonology had already planned on doing a full PFT at next appointment anyway - but that is what Rheumatology wanted Pulmonology to do next, as well as doing the next CT in 6 months. SO...I DO feel better knowing that this is not "typical" with what they normally see in the lungs with Systemic Sclerosis! And...I am relieved that they will repeat the CT in 6 months vs 1 year. And hopefully in the end, the lung issue will turn out to be related to a past infection or something else not so severe. As for her legs, hoping the steroids and methotrexate will stop it from progressing too far. Still loving the new doctor and feel like they are treating her with an appropriate amount of aggression without over doing it too soon. Thanks for all the hugs and thoughts!
  2. The pulmonologist said that it "could" be related to her sclero, or it could be from previous lung infections. She said they will do a full lung function test at next appointment, and repeat CT scan in 1 year...as well as watch her closely. We had played phone tag for a week so she finally left me a message on my phone, so I still haven't been able to actually "talk" to her. I would LOVE for it to be scar tissue from past infections, but she hasn't really had any lung infections that we know of :(. I really trust this doctor and know that she will do what is best. I feel better that she didn't want to do a lung biopsy or anything. I feel like if it were really bad they would have done further testing. We go to rheumatologist in 2 days, so I am anxious to hear what she says. Also, Madi's legs are getting visibly worse - shiny, tight below knees and places of indentions on upper legs with red lacy pattern...rheumatologist pointed out the lacy/splotchy areas were "new" sclero. On a good note - no limitations in joint movement so far, and her attitude is still good :) . For a disease where I feel there is little control over, I feel pretty much at peace with everything at this point. (But I am allowed to change my mind tomorrow - )
  3. Sorry I haven't been on here in a while :( A quick update on Madison, then a question. We changed rheumatologists, and Madi and I both LOVE her new doctor!! =) She was given the official diagnosis of juvenile systemic sclerosis with the possibility of MCTD as well. She was started on a steroid IV infusion monthly and increased her MTX to 25mg (1cc) every week. I just got the results of her CT scan of her lungs today, but I won't talk to the doctor until tomorrow. The CT scan showed "2 cm bulla within the right lung base" and "linear markings within the right middle lobe" I will talk to her pulmonologist tomorrow, but from what I can find through my own research - these results can indicate fibrosis of the lungs from several different causes...so I am guessing that her lungs ARE being affected by the scleroderma. Glad to have found it early, but anxious to see what the outcome looks like!! Nervous!! Shauna
  4. I am feeling better tonight after talking to Madi's pulmonologist. I have used this pediatric pulmonologist office for the past 7 years with other kids. We did medical foster care for 15 years. We no longer do foster care, but I now have 2 kids of my own that see this doctor on a regular basis. I was anxious all weekend to hear from her, I knew she was out of the office until today. She assured me that from a "lung" viewpoint that the symptoms Madi has now are strictly asthma, but that we will need to keep a closer eye on her now for many reasons including mainly the diagnosis of scleroderma and what can go with it. She also gave me what I think I really needed from the rheumatologist last Friday...some sort of idea of what to expect, a plan, something to go on. She said that I need to take Madison to see all of the specialists for organs that can be involved once a year for an evaluation for any changes. (So far Madi has seen pulmonology, GI, and cardiology. The only other one I know of that I will need to schedule is nephrology. Any info as to specialists is greatly appreciated!! ) She did order a CT scan of her lungs today, but I will have to get that coordinated with the hospital. She has already had a full lung function test, so it will not need to be repeated until 6 months from now. We already had an appointment scheduled with GI for Thursday, so I will discuss all of this with that doctor then, and cardiology is right next door to GI, so I will go by there and see about making another follow up appointment at the 1 year mark. The pulmonologist also said that they have several teenagers that they treat at their clinic with scleroderma, and she mentioned the possibility of getting Madi together with them sometime. She did say that all of them are further along in the disease process, and I might think about that before introducing Madi to them... to make sure Madison is ready for it. She said that although she couldn't make any promises to me because it is a disease that has many unknowns...that based on what she has seen with her other patients, that Madi's does seem to be progressing slowly and she wouldn't expect any lung involvement for several years (if at all...but kind of sounded like she would expect it at some point). Thank you all so much for the information and for the kind and encouraging words! It really has helped SO much, knowing that I have a place to turn to where people have walked this road before me, and I can come to you all with questions or just to vent. Thanks! :emoticons-line-dance:
  5. Thanks everyone! I look forward to getting to know you all better. Miocean - you made Madi smile too... she jokingly waved at the computer and said "hi" She keeps looking over my shoulder at the computer to see what I am reading/writing, so that was a nice welcome surprise for her. Margaret - I'm sorry that our connection has to be an illness that our children have...but I am very glad to have another "mom" to talk to. Doctors wisdom is important, but they don't always understand a mom's intuition, observations, or the emotions that go along with it all. Thanks for the links to the specialists...I will check out the one in South Carolina as well as look around for others. We homeschool our kids, so maybe we can make a trip to South Carolina - never been there (except passing through). Thanks again!
  6. Thanks Judy. Yes, I am in the US... in Florida. I like the advice to find a doctor that specializes in scleroderma. I am going to begin that process immediately. I think that would help a lot! I also forgot to mention that she is on methotrexate, they increased her dose today. She also takes an NSAID for arthritis. She takes some meds for her asthma (lung function) and GI symptoms too. I am trying to stay on top of her symptoms, even if we don't know if they are related to scleroderma or not. I don't want to wait years for it to show up as systemic, etc. But it is all so frustrating to be such a guessing game. Especially when it is your child. I am so glad I found this site...I know it is going to be so helpful with information, as well as just being able to hear from people going through similar life events. :thank-you-2:
  7. Hi Everyone, After 1 1/2 years of Raynaud's as well as dark and light pigment changes on her back and legs, and being followed by rheumatology for 1 year with a diagnosis of juvenile idiopathic arthritis; my 12 (almost 13) year old daughter was diagnosed with juvenile scleroderma today. The diagnosis is not a shock to me. I had suspected it all along because of her symptoms, etc. Her doctor had said "possible scleroderma", but usually seemed as though it was not likely. Today he said "this was not the news I wanted to give you, but it has become clear that she does have scleroderma". If I had heard the news at any of the earlier appointments I think I would have been prepared, but today...I just wasn't. From all that I have read, and the best I can figure out, juvenile scleroderma does not normally have as severe of an outcome as adult onset. I asked her doctor about what "type" she has because her skin color changes are on her back and legs, and today the induration that he and the nurse practitioner noticed were on both lower legs from the knees down to the toes. Again, from what I have read...she would fit the category of "diffuse systemic". Her doctor did agree with the "diffuse" but said that kids don't normally have "systemic". I know from reading the forum guidelines that no one can give "medical advice" but I am really confused about the classifications. I also took her at the onset of her symptoms over a year ago to a pulmonologist, gastroenterologist, and cardiologist. She did (and still does) poor on her lung function tests, although the DLCO was ok. So right now she has the diagnosis of asthma. Her GI did a biopsy that showed inflamation of her stomach and small intestines and she was put on a med to help with that. Her echo at cardiology was normal. How do I know when to be concerned about lungs and GI possibly being part of scleroderma? Does the fact that her skin areas that are affected started on her trunk and is now on both lower legs mean anything when it comes to determining what "type" of scleroderma she has? Oh, and she was also diagnosed today with scoliosis. I didn't even think about it until after we left, but I am wondering if it could be related to the large area of scleroderma on her trunk...even though the skin is not very tight yet, could it be preventing her back from growing correctly during these fast growth spurts? Sorry so much - a lot on my mind tonight.
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