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Margaret

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Posts posted by Margaret


  1. Hi Ashley,

     

    My son started having issues and positive blood work at age 18.  He'll be 29 years old next month and even though he's had his ups and downs, he's still very much alive and kicking.   :lol:   Because of the OCD and anxiety issues you suffer from (I'm not sure if this is new to you) but I want to let you know that Gareth went into a severe depression after diagnosis and the doctor told me that the same autoimmune issues that attack the rest of your body can also affect the brain chemistry.  Please, don't hesitate to discuss your concerns with a doctor/psychiatrist.  There may be medication to help ease the anxiety/OCD. 

     

    Continue to ask questions on the forum here and someone will usually chime in with their experiences.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  2. Hi Everyone,

     

    The good news is that the doctor is pleased with the healing of the two ulcers at the incision site and the port can be used this Wednesday for his monthly IV Ig.

     

    His comment was "his body had a reaction to the self-dissolving sutures".

     

    OK, what do we do when he has another surgery? "Oh, just let the surgeon know", he said.

     

    Minor bump in the road of life!!!

     

    Take care, Everyone.

    Margaret


  3. Hi Dimarzio,

     

    Gareth's port was installed below the collar bone, on the left side.  His incision was infected from below the thin scar tissue that covered the wound. Once they lanced the thin skin layer over it, it revealed the two, small, ulcer-like areas below. There are many causes for ulcers; I just didn't know that scleroderma ulcers had to do with capillary/blood issues.  He has had large cavernous ulcers before, usually on his legs, and they have taken forever to heal.  Maybe they can use that medical super glue and put his incision back together,  if it's not infected.   :lol:   Fortunately, he doesn't complain about being in pain.

     

    Take care, Everyone.

    Margaret


  4. Hi everyone.....I am finding this an interesting thread and quite noteworthy concerning Gareth.  

     

    As I told everyone, he had a Power Port installed the end of February.  The top stitches were taken out two weeks later, with self dissolving stitches underneath.  It appeared to be healing okay, on top, but after another week or two, we all noticed the scar was getting much wider, even though it appeared to be healed over.  When asked, Gareth would say *it's fine*  *no hurt*.  Last Monday, I had him in for a recheck and they didn't like what they saw. They lanced the thin top scar and there were two pockets of unhealed tissue.  Needless to say, no one was happy.  I never thought about it being Sclero related....the lack of healing.  He's on Keflec for the week and will be back into the doctor's office this Monday.  His next IV Ig will be Wed, but I'm not sure they will be able to use the port with the unhealed tissue around it.  Even today, the two pockets appear the same as they did on Monday.......not good  :sad:    

     

    Once again, thank you, for the information everyone passes along.

     

    Take care, everyone,

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  5. Hi Everyone,

     

    Do bluish colored finger nails go along with Raynauld's?  Gareth's hands/fingers don't feel cold but I've noticed lately that the top 1/2 of his finger nails appear blue/purplish.  Just curious as this is a new phenomenon for him.   :dont-know:  I know from his blood work that his O2 levels are okay.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 28 years old, DS/ASD

     

     


  6. Hi Dimarzio,

     

    I can't really answer that because Gareth was always so sickly as a kid. He had chronic ear infections, mastoiditis, pneumonias, gastic ulcers, etc. It wasn't until he was 20 years old that we found out he had immune deficiencies - Ig G 2/4, which fight bacterial infections and a Mannose Binding Lectin deficiency, which is a missing component . That is why he gets the monthly IV Ig infusions.

     

    Gareth was 18 years old when he told me his *food tube* (esophagus) wasn't working. He told me his food was stuck. I mentioned it to his pediatric gastic doctor and he immediately ordered a barium swallowing test, which showed the food sitting at the top of his esophagus - no motility. He was the one who ordered the blood work for scleroderma because, in his words, it was the only disease that he knew of that would cause dismotility of the esophagus. Blood work was positive - ANA, anti-RNA Polymerse 1/111. He actually got a lot worse that winter as his vocal cords hardened and his rib cage (chostrochondritis) and major depression. We did see the specialist in Pittsburgh who said it was UCTD because he had no Raynauld's, capillary problems, or skin issues. Three months after starting on Plaquenil, he told me his food tube was working again.

     

    It's been 10 years now and, for the most part, he's doing okay, as long as he gets his monthly infusion. He just had a port installed because it's getting harder and harder for the gals to get the IV in. He has developed Sjorgens and obvious vein problems - his hands/feet blanch out white, like Raynauld's. He developed hypothyroidism that had to be addressed. He's got 5 pins holding his right hip in place and a metal ladder in his neck due to degenerative arthritis from C 3/4 to C 7/8.

     

    Despite his life of illness, he has always remained a fun loving kid. Despite the Down Syndrome and Autism, he is a very intelligent kid. I am very blessed to have him as my son; he's taught me what is important in life.

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  7. Hi Diana,

     

    Welcome to the group but sorry to hear you have autoimmune issues at such a young age.  My own son, Gareth,  was diagnosed at age 18, initially as sine scleroderma but changed to UCTD,  and has been on Plaquenil and IV Ig infusions for immune deficiencies.  He went into a major depression when first diagnosed and the psychiatrist said that the same autoimmune issues that attack your body can also affect your brain chemistry.  He has been on a low dose of anti-depression meds since and they do help.   Continue to ask questions and this group is great at giving out useful information.  

     

    Take care, everyone,

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  8. Hi Delilah.

     

    It's interesting about your hands. Gareth's hands and feet blanch totally white from the wrists and ankles down, usually during bath time.

    His rheumatologist doesn't seem concerned at all and says it's not considered Raynauld's but his primary care physician says it is from the connective tissue disease.

    It does bother Gareth, I think he feels the tingling sensation when the blood starts flowing again.

     

    Take care, Everyone.

    Margaret


  9. Hi Shelley, thanks for the head's up for fibrin clots.  

     

    I do know that I won't have to worry about flushing it since he has to go in every 4 weeks for the IV Ig infusion.  The nurses have already told me they will be keeping it flushed and cleaned monthly.  The stitches will come out in two weeks and the following Wed, he will have his monthly treatment, so it will be interesting to see how he does with it.  

     

    Take care, Everyone.

    Margaret


  10. Hi Everyone,

     

    It's been awhile but I wanted to let you know that they finally decided it was time to give Gareth a port, surgically installed today with no problems.    :yes:     

     

    His veins are getting harder and harder for the IV team to get the needles in each month for his IV Ig infusion. 

    They are going further and further up his arm, along with 2-3 attempts/rooting around.  Needless to say, he's 

    not been too happy the last couple of times when getting his infusion.   :wink:   Hopefully, this will help each month.

     

    Weight loss has stabilized at 35 lbs; no reason as to the cause.  Heart checkup two weeks ago was normal.   Yearly eye exam, because of Plaquenil, was normal.  Thyroid blood work is all normal.

     

    What a spring! 65-70 degrees all last week and 30 and snow showers yesterday.  The willow bush is in full bud and hydrangea bushes are starting to bud out, too!!  

     

    Take care, Everyone.

    Margaret


  11. Hi Ann,

     

    Welcome to the forums.  I just want to say that I have had positive ANA's in the past, along with minor old lady symptoms -  reflux and osteoarthritis. The first was homogeneous, with nuclear dots, found in  PBC (primary biliary cirrhosis).  All followup blood work for liver function was normal.  The second was positive, speckled pattern.  Both times, the doctors were looking for positive RA blood work (my dad had RA) and that was negative.

     

    But, my son was diagnosed 10 years ago, at age 18, with + ANA, + anti-RNA polymerase 1/111, esophageal dismotility, and major internal issues.  He has also developed Raynaud's and Sjogrens over the past 10 years.   It seems that I got off easy, like it skipped a generation.

     

    Keep posting and asking questions.  There's a great group of people here who have so much experience and knowledge.

     

    Take care, everyone.

    Margaret


  12. Morning everyone,

     

    I finally got Gareth's biopsy report yesterday.from his Dec 28 endoscopy. He does not have Celiac disease   :happy-dance-line: and stomach shows only minor irritation changes due to anti-inflammatory meds.  That's really good news for him and his doctor said not to go on the FODMAP diet.   :yes:   Still no medical reason for the weight loss, but he does seem to have slowed down a bit after dropping 30 #'s.  We will continue to monitor and he's his usually happy, go lucky self, so I know he's not in pain.

     

    Take care, everyone.

    Margaret


  13. Hi Everyone.... I want to wish all my cyber friends and their families, who are celebrating this month, a warm and wonderful holiday.  Please, share your home and blessings with others who aren't so fortunate. 

     

    Take care, everyone.        :hug-group:

    Margaret


  14. Hi Shelley,

     

    I just received a call last night from the office nurse.  He doesn't have a bowel overgrowth, he has a carbohydrate mal-absorption problem.  She didn't explain it much, and said she'd send a "menu" through the mail.   :dont-know: 

     

    I went on line and found this article about how the timing of the breath test explains the two.  This is going to be a major problem for Gareth as it involves deleting all his favorite foods; breads, pizza, pastas, etc., anything that is considered "complex carbohydrates".  He's been lactose intolerant for years and can pop a pill for that; you can't pop a pill for this one.   :wink:   The doctor still wants to do an upper endoscopy, but he hasn't scheduled it yet.

     

    I am curious if this is a new "diagnosis" or something he has lived with for years and we just never knew till he started losing the weight.  I will keep you posted.

     

    Take care, everyone.

    Margaret


  15. Hi Everyone,

     

    Gareth had a Hydrogen Breath test yesterday that spiked to 30,  2 1/2 hrs after starting. They wanted him to wait the full 5 hrs because they wanted a second spike.  He'd have nothing to do with that since he was so hungry and had burgers frozen in his mind !!   :lol:  The test indicates an overgrowth in bacteria in the small intestine.

     

    Treatment is by antibiotics and it would explain the abdominal discomfort and weight loss over the past 5-6 months.  From what I have read, though, most patients spike between 60-90 minutes after drinking the sugar water.  I am waiting to talk to the doctor to see if this would indicate slow motility in the small intestine, too, since it took so long to spike.  I wouldn't think sugar water would be slowed down?  :dont-know:   

     

    The endoscopy is the next step, hopefully, that will be okay.

     

    Take care, everyone.

    Margaret


  16. Morning Shelley,

     

    Thank you, for the smiles and giggles so early this morning.  :lol:  I can remember when I had to ask how to use the emoticoms  :dont-know:   This site has been my life saver the past 10 years.  Yes, 10 years ago I thought Gareth wouldn't be around too long.  I was scared, afraid, and totally confused.   He's had his ups and downs and everyone has been here, with me, to guide me and explain what he is going through. 

     

    Tomorrow morning, he has a Hydrogen breath test, to rule out bacterial overgrowth.  I guess it's one of the first tests to rule out mal-absorption due to slow motility.   :dont-know:  He's lost 30 pounds since June, without changing his diet.  He has a new gastric doctor since the old one moved on to another hospital.  I'll miss her -- she was so nice and really good!   :sad:

     

    On a brighter side, I have a friend that I have known for 3 years now,  who comes into the thrift store I volunteer at twice a week.  She has been suffering with scleroderma/UCTD for the past 25 years!  I never knew and we started yakking for 20 minutes!  :lol:  :lol:   She told me how she's suffering with esophageal issues now, a usual flare, she said.  I told her Gareth was having *issues*.

     

    Thank you, for starting this site and turning it into the best information/educational site.

     

    Have a good day, everyone.   :happy-dance-line:  :hug-group:

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  17. Morning....Shelley mentioned depression.  I forgot to say that when initially diagnosed, Gareth became severely depressed.  I was told that the same autoimmune issues that affect the rest of the body also affect the chemicals in your brain.  Please, tell your dad to talk to his doctor about this.  He won't be the first to suffer from depression with this disease and it may help him immensely in fighting it.  Stress is NOT good for the body, especially when fighting autoimmune issues.

     

    Take care, Everyone.

    Margaret


  18. Hi,

     

    I feel for you and your dad.  Ten years ago, my 18 years old son, was diagnosed with sine scleroderma, then switched to UCTD. I had never heard of the disease and started reading Doctor Google.  BIG MISTAKE!!  I was sure my son would die soon.  It's been ten years and he's still around enjoying life.  The doctor started him on Plaquenil after diagnosis and he does have internal issues, but they are taken care of as they come. I have no knowledge of the pulmonary hypertension as that hasn't affected him.  

     
    It's hard for your dad and it's hard for you.  So many of us understand but each person affected has different issues.  It's not like the measles where everyone gets a fever/rash or the flu where everyone has the same aches/pains/headaches, etc. 
     
    I can only recommend that he read the medical articles from here and avoid the scary Dr Google articles.  Chime in and ask questions, and someone will point you in the right direction.
     
    You're in my thoughts,
    Margaret
    Mom to Gareth, 28 years old, DS/ASD

  19. Hi Everyone,

     

    Gareth has lost 25+ pounds since June. At first, we thought it was due to more physical activity during the summer, but the weight keeps coming off. We made a quick 4 day trip to the Outer Banks a few weeks ago, to drop grandma off for the winter. We ate fast foods for lunch and restaurants for supper. I put on 5pounds and Gareth loses 3 pounds!!! :dont-know: Oh, and Gareth says "I fine" meaning he doesn't hurt as in stomach ulcer, esophageal dismotility, or abdominal discomfort.

     

    He saw his Immunologist yesterday and he is concerned and thought maybe he has a "mal-absorption issue" due to either his immune deficiencies or his UCTD. Does anyone have mal-absorption issues? His CBC, metabolic panel, chemistry, thyroid, cortisol/ACTH have all been normal. I have an email in to his gastric doctor; guess endoscopy and colonoscopy will be the next procedure, although I wish there was a simpler way to find out.

     

    As always, thank you !!! :thank-you:

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  20. Hi Dimarzio,

     

    I can't really been more specific since I don't know much about it. Gareth's case is unique in that he started the IV Ig treatments (5 years ago) because of his immune deficiencies, not because of the UCTD, for which he's been on Plaquenil for 10 years. I have read that autoimmune diseases can cause immune deficiencies, but he has always been a very sickly kid and spent many a days in hospitals throughout his life, so I am assuming he had always had the ID and the UCTD came later, at age 18.

     

    I asked his Rheumatologist about his medication a year ago, when the surgeon had such a hard time repairing his neck vertebrae due to the fibrosis around his trachea, esophagus, and carotid artery. She was the one who said that they were using IV Ig infusions for Scleroderma. I have no way of knowing if the infusions have slowed/stop the progression of his disease since he has never had a full body scan to show the extend of initial damage; does that make sense? I do know that his esophagus has gotten worse over the years; it's now looks like a contorted, curly straw due to the hardening and he needs it stretched every 12-18 months.

     

    I wish I could be helpful.....sorry.

     

    Take care, Everyone.

    Margaret


  21. Hi Dimarzio

     

    IVIg Treatment in Systemic Sclerosis.

     

    Above is a website for a new study concerning IV Ig infusions and scleroderma.  Gareth has internal issues from UCTD, has been on Plaquenil for 10 years, and also has immune deficiencies that require the IV Ig infusions every 4 weeks.  When I discussed other treatment options for his UCTD ((following his neck surgery) his Rheumatologist said there was nothing available  for him, as he is already getting the IV Ig infusions.  She was the first to tell me about IV Ig for scleroderma.  It's not cheap, but you can try discussing it with your doctor.

     

    Take care, everyone.

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  22. Morning Shelley, I don't have any pertinent information or suggestions.  I can share with you a situation I found myself in the past month.

     

    A month ago, I went a Podatrist for aching feet and newly forming bunions.  She asked about medical history and I told her dad had RA, mom has gout, son has UCTD and I was told years ago that I have osteoarthritis.  Well, she told me I was getting bunions because my feet are becoming flat due to the arthritis and she wanted to run blood work.  I told her my previous RA panel and ANA was negative 3 years ago.

     

    Well, the RA panel is still negative but the ANA is now positive; homogenous pattern with nuclear dots.   Being well versed in ANA, I look up and find that is usually seen in (PBC)primary biliary cirrhosis.  Wait a minute; I went in for my feet !!  Primary care physician sends me to gastro doctor (Gareth's doctor) and she assured me it's probably a false positive. I was okay with that, having learned from all of you guys. Anyways, on to additional blood work with complete liver profile, etc.  That did all come back within normal range, thank goodness for that.  BUT, ANA is still positive, this time with speckled pattern!  She has me set up for abdominal ultrasound in two weeks, just to be REALLY sure there is no liver issues.  But, suggested next stop be Rheumatologist IF I have other medical signs of autoimmune disease, which she knows I am well aware of.

     

    So, yes to the positive ANA two times, but no to RA or PBC.   And I still have the bunions growing and will have to wear orthotics to slow them down!

     

    Take care, Everyone.

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  23. Hi Everyone,

     

    Back again in need of some advice.  :wink:   The group home told me today that Gareth is increasingly going through

    underwear.  They say it's as if he doesn't feel a bowel movement coming anymore; that he doesn't feel the need to go to the bathroom.  It just starts coming and then, he says *Oh, oh* and runs off to the toilet, but too late.  This is not diarrhea, just regular stools coming and he doesn't seem to realize/feel the urge to get to the bathroom beforehand.  Is this the bowel incontinence that many of you talk about?   :dont-know: Is it a nerve thing, such as no feeling?

     

    Thanks!  Off to buy more underwear... :sad:

     

    Margaret

    Mom to Gareth, 28 years old, DS/ASD


  24. Morning, Gareth was first diagnosed with sine scleroderma by his gastric doctor.  He's the one who ordered all the blood work after he found the esophagus had hardened and stopped moving food.  On to a children's rheumatologist who didn't want to do anything.

     

    I finally asked the doctor if he could try Plaquenil, only because of all the information received from this group. Plaquenil jump starts the immune system, which is contradictory to what you would expect to work, but it did work for Gareth.

     

    Gareth has never had skin issues, yet!

     

    After reading the initial information on the web, I thought for sure he'd be dead in 3-5 years.  It will be 10 years this November and although he's had his share of ups and downs from the UCTD, he's doing well.

     

    Take care, everyone.

    Margaret

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