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7 year old daughter has Raynaud's and positive ANA


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#1 LCT2007

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Posted 22 March 2015 - 04:18 PM

Hi, I'm new here. I have a seven year old daughter. Last year, she began noticing that her fingers and toes would turn white and lose circulation. She was doing competitive gymnastics at the time and we thought it had something to do with that. We quit gymnastics last spring and the circulation issues stopped. Then this winter, she started having trouble with the circulation again. And two weeks ago, all of her fingers and toes went white, except her thumbs. I rushed her into the pediatrician and he suggested Raynaud's Phenomenon. He also ran a lot of blood work.

We got the ANA back last Thursday and it was positive. The speckled pattern titer was 1:640 and Homogenous 1:160. She also tested positive for the SLC-70, her result was 8.0. Her C3C and C4C were slightly low. Other than these tests and the Raynaud's, she's a hyper normal child. We have an appointment with a Pediatric Rheumatologist on Wednesday and I am trying not to worry but it is proving to be so difficult. Does Raynaud's and positive Scl-70 usually mean Scleroderma? Everything I'm reading is also scaring me as to the type of scleroderma that particular test points to. Any advice would be greatly appreciated!

#2 Shelley Ensz

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Posted 22 March 2015 - 08:08 PM

Hi LCT2007,

 

Welcome to Sclero Forums.  I'm very sorry you have concerns about your daughter's health. I understand your concerns.  It's probably impossible to actually "not worry" since right now, you know just enough to cause a lot of worry but nothing to thwart or refocus it. Your job, as I see it, is to do everything possible to calm yourself until you get some facts from the rheumatologist on Wednesday. 

 

I would *strongly* recommend reading a few of our comforting replies and then entirely unplugging from the internet and all health-related thoughts until then.  If you have any hobbies, throw yourself into them right now, or clean the house from stem to stern. In other words, find a positive outlet for the nervous energy, if you possibly can, because maintaining YOUR positive attitude is key to helping your daughter not over-react or experience more stress about this.

 

One very comforting thing I can tell you, and many others will chime in on this, is that Raynaud's is very common in the general population, and particularly in young, thin girls. It's possible your daughter might be having something that is causing the attacks or worsening them, such as stress or cold or pop or tea or even some candies (any sort of caffeine.)

 

Antibodies are a catch-22. Sometimes they mean a lot and sometimes they mean next to nothing. The symptoms, and especially the clustering of symptoms, means far more. She might have antibodies just because some general autoimmunity runs in your family, in which case its entirely normal for other family members to have some antibodies and even some symptoms of autoimmune diseases without ever getting the whole disease.  Also, lab errors are very common! Likely her doctor will want to repeat the tests with another lab, either now or later on.

 

That said, the results so far are important enough for you to be sure to keep her medical appointments. But try to think, it is *all* good, that it will be *very happy* to either find out it is a lot of fuss about next-to-nothing, and that if it is the harbinger of something-or-other, that you have caught it *very* early on so your daughter will have truly outstanding care and thus an awful lot less to worry about.

 

Also, all sorts of antibodies can occur with "just" Raynaud's. Likely it will be a very long time, perhaps even years, before you know for sure if your daughter has, or doesn't have, any larger underlying illness.  Therefore now is the perfect time to develop an attitude!  The attitude is that you are a very flexible parent, and a wonderful cheerleader for your daughter. Your positive attitude can show her how to deal with *anything* in life with joy and happiness and confidence.

 

You can do this. I know you can. We're on your team. We understand the challenge it is to just keep your chin up a few more days until you know more facts. You can adjust to any fact. We all know that. It is the uncertainty that drives most of us right up the tree, if we let it. We totally get that, and some of us have terrific hobbies and very clean homes to show for it, too.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Margaret

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Posted 23 March 2015 - 01:20 AM

Good morning LCT2007.....Your daughter was born the year after my then, 18 y.o, son,  was dx'd with sine scleroderma.  He had all the positive blood work and his major symptoms were internally, mainly his esophagus.  I had never heard of scleroderma and,  like you,   I hit the internet and thought he would be dead within a few years.  WRONG !  I did get him to a scleroderma expert and he was placed on Plaquenil, to jump start his immune system. 

 

I still don't understand scleroderma, but do know that there are so many autoimmune issues out there and medications do make it possible for a long life. My dad had Rheumatoid Arthritis and my mom has Gout, both autoimmune issues.  Do you have autoimmune diseases in your family history?  Gareth's diagnosis was changed to UCTD and he does have medical issues with his disease, but they are not life threatening......more of a thorn in his side, I would say. The over all fatigue seems to be his major issue.  That is an issue your daughter may struggle with throughout school and I would make sure the school system is very much aware of her disease, giving her access to lay down whenever it over whelms her.

 

Shelley gave a lot of useful information and advice.  Bring your questions and concerns to the forums and someone will help you.

 

Take care, everyone.

Margaret

Mom to Gareth,  26 years old, DS/ASD



#4 LCT2007

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Posted 23 March 2015 - 02:15 AM

Thank you so much for your reply! It meant so much to me. It's very hard, but you are right, I have to stay positive for her. She has no idea actually about any of this. She thinks we are just going in to check on her fingers turning white. My maternal grandmother has Polymyalgia Rheumatica. And a cousin of mine on my paternal side has Ehlers Danlos. So we do have a history of autoimmune diseases. I will keep you posted as to how her appointment goes on Wednesday.

#5 miocean

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Posted 23 March 2015 - 04:11 AM

Hello LCT2007,

 

Of course you are worried, that is normal. However, everything Shelley wrote is spot on. You can scare yourself into having a disease by reading about it on the internet. I hope you will get back to us with the information you receive from the rheumatologist.

 

Since it does sound like your daughter has Raynaud's do some things for that before thinking the worse case scenario. The best thing for Raynaud's is keeping the core warm. For me that means dressing in layers, always having gloves on hand, even fingerless ones for inside, drinking warm beverages and exercising. Warm baths and keeping the house temperature warm help as well. I think I finally have convinced my husband that I need the house set at 72 degrees in the winter although sometimes I still find he will put it at 71 and I can tell the one degree difference! Summer can be even more difficult with inside temperatures due to air conditioning. 

 

I hope you get answers this week from the doctor.

 

miocean

 

 


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#6 Joelf

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Posted 23 March 2015 - 09:15 AM

Hi LCT2007,

 

Welcome to these forums!

 

I'm very sorry to hear that your daughter is having  problems with Raynaud's and I do understand how worrying her symptoms and blood tests are to you.

 

The good thing is that you've found our forums and will now be able to get plenty of help and support from our members. Shelley, Margaret and Miocean have made some very valid points about dealing with the disease and as Shelley has advised, having Raynaud's and positive antibodies is by no means the be all and end all. Many of  our members have positive blood tests and have never developed the full blown disease and the reverse is also true.

 

I do hope that your appointment on Wednesday with the Pediatric Rheumatologist will help to allay some of your fears and give you some help and advice about the best treatment (if any) for your daughter. It may be necessary to perform some more tests on her, to enable him to get the complete picture.

 

Please do let us know how she gets on.

 

:emoticons-group-hug:

 

Kind regards,


Jo Frowde
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#7 Sweet

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Posted 23 March 2015 - 12:05 PM

Welcome to the forums!

 

I'm very sorry to hear that your daughter is having  problems with Raynaud's . As a mother I understand how worrisome this is for you.

You've come to the right place for accurate information, and companionship with those that truly get what you're going through.


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 Amanda Thorpe

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Posted 23 March 2015 - 02:19 PM

Hello Lct2007

 

Welcome to the forums although I realise you'd rather be anywhere else.

 

Although a large percentage of people with scleroderma have Raynaud's (Raynaud's Phenomenon or Secondary Raynaud's) only a small percentage of people with a primary diagnosis of Raynaud's ( Raynaud's Disease or Primary Raynaud's) also have scleroderma. Odds are in your daughter's favour that she won't have scleroderma.

 

As for antibodies, what a nuisance they can be! You have people with scleroderma and negative antibodies (like me) and people with positive antibodies and no scleroderma, what a palaver! That's why symptoms are the key and thus far your daughter only has Raynaud's as do thousands of other people who don't have scleroderma. 

 

For you both it's a waiting game I'm afraid, please do post often.

 

Take care.


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#9 LCT2007

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Posted 25 March 2015 - 04:30 PM

Thank you all. Today was a very rough day. I was not a huge fan of the doctor we saw. We waited two hours to see him. Once he examined her, he said he felt she would develop scleroderma at some point based on the Raynaud's and her positive ANA. He said that the kind of scleroderma that is associated with the SCL-70 that she also tested positive for "tended to need lots of medication and have kidney issues" once the disease started. He never ran a single test other than a urine test. He is scheduling her to have another EKG, blood test, chest X-ray, blow test for her lungs, and continued urine tests. He said those tests would have to be repeated every 6 months. He said currently though, she appears completely healthy and it's just a waiting process from here.

Is it wrong for me to still have hope that when he retests her blood, it will change? I've read so many places that there can be false positives. Or that she will never develop scleroderma? He seemed to think the chances of either of these happening were very slim. But he also said so little is known about this disease because it's extremely rare. I guess I just felt as though he didn't offer us a lot of hope and that he's basing these predictions purely on Raynaud's and an ANA result. Does there not need to be more symptoms to predict this?

He mentioned that he thought we should attend the Scleroderma annual conference this year since its within driving distance for us. I also think we may try to find another pediatric rheumatologist to get a second opinion. My head is swimming right now with so many questions. My daughter however, has no idea still. We had her wait in the waiting room with my mother, once the doctor began talking with us. She thinks that she's the coolest little girl on earth because she has hands that freeze like Elsa's from Frozen. I appreciate all the kind words and advice. I will continue to update on her and good thoughts for her would be greatly appreciated.


Edited by Shelley Ensz, 30 March 2015 - 10:40 AM.


#10 Joelf

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Posted 25 March 2015 - 11:23 PM

Hi LCT2007,

Sorry to hear that your appointment with the doctor was not very productive.Although it sounds as if his bedside manner left a bit to be desired, unfortunately because of the very nature of Scleroderma it's very difficult to determine what course the disease will take. I can understand how frustrating it is, particularly when you're feeling anxious and worried and having to wait two hours to see him doesn't help (I can empathise as I once sat in a corridor for three hours at The Royal Free hospital waiting to see a consultant; by the time I did get to see him, I was rapidly losing the will to live!!;) )

However, more tests are being done on your daughter, which will help with the diagnosis and it is sometimes possible to have false positive blood results, so at this stage it really is a case of watch and wait, frustrating though it is.

I've included a link to our page on Juvenile Scleroderma which also includes a link to Juvenile Scleroderma experts as we do recommend that our members, if possible, consult a Scleroderma specialist.

Please do keep us updated on your daughter's progress.

Kind regards,

Jo Frowde
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#11 Amanda Thorpe

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Posted 26 March 2015 - 01:49 PM

Hello LCT2007

 

This is why it's so important to see a scleroderma expert, as in one on the list that Jo has given you the link for. 

 

It seems that the conclusion is that your daughter has scleroderma and it's just a matter of time but not everyone with Raynaud's develops scleroderma.  As it is there is no diagnostic, sure fire marker. You see positive ANA & SCL-70 does NOT  mean you have or will have scleroderma just as negative ANA & SCL-70 does not mean you do not have scleroderma. Based on his logic, I don't have scleroderma because my blood markers are ALL negative but I have one of the worst forms of the disease.

 

Also, scleroderma can affect the kidneys but cautious of predictions of what organs will be involved. At diagnosis I had NO internal organ involvement just massive skin involvement with negative blood work and I was told that it was highly unlikely I would develop internal organ involvement because I had negative ANA & SCL-70,  Imagine my surprise to find myself with myocardial fibrosis and serious heart failure two years later. I was not impressed.

 

My blood work was negative at diagnosis and has remained so for the 7 years I have had the disease but it's worth bearing in mind that blood markers can change from positive to negative and so forth.

 

It is really good that your daughter is being monitored and if you're going to seek a second opinion, which is a good idea, why not make it a juvenile scleroderma expert?

 

Going to meetings is always useful because you'll meet other people with the disease but being informed works both ways and I don't envy you the weight you're carrying for your daughter.

 

Please bear in mind that I give my opinion as a person with the disease not an expert of the disease and I have no idea whether your daughter has/won't have scleroderma. I am aware that Raynaud's can be a predictor for it as can a positive ANA & SCL-70 but I do believe (as a non medical layperson) that these two alone don't automatically mean scleroderma.

 

Keep posting and take care.


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#12 LCT2007

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Posted 27 March 2015 - 07:33 AM

Thank you for the responses. I have attempted to contact the few experts on the list who did take children. We don't have any near us. Some I've not heard back from and others said they couldn't see out of state patients. So we are still hoping someone will take her on. We are quickly realizing that not only is this disease rare, but in children it is even more so. 

 

Has anyone ever seen any help with dietary changes or holistic treatments? I know gluten can be a huge trigger in certain autoimmune diseases, but I didn't know if that would help in this case or not. I know it certainly cannot hurt to try. I guess at this point my husband and I are just trying to wrap our minds around the Whys and Hows and really understanding all of this. Its a lot to take in.



#13 Joelf

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Posted 27 March 2015 - 12:06 PM

Hi LCT2007,

I do hope that you will be able to find a Scleroderma specialist to help you.

I've included a link to our medical page on Diets and Systemic Scleroderma which also includes information on a Gluten Free diet. We also have a page about Celiac Disease and Gluten Sensitivity which I hope you'll find interesting and helpful and our page on Alternative Therapies has a section on Scleroderma Natural Treatments, particularly Raynaud's.

I understand how confused and worried you and your husband must be; unfortunately there is a lot of scary information out there about Scleroderma because it is such a rare disease. I'm hoping that our medical pages will be able to reassure you.

Kind regards,

Jo Frowde
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#14 Shelley Ensz

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Posted 30 March 2015 - 11:05 AM

Hi LCT2007,

 

Well, what an interesting and perplexing appointment that was. It is hard for me to get my head around all of it, and I really cannot imagine how it must be for you.

 

The doctor obviously had some tough news to deliver, and they must be very concerned for your daughter's health. I am glad that they are going to do all the baseline testing and keep a close eye on her, as she certainly is "at risk" of developing systemic juvenile scleroderma.

 

Please keep in mind that I am not a doctor and have no medical training at all!  However, in my view, being at risk or even at very high risk is not the same as having it right now or absolutely inevitably developing it. What it does mean is that this is serious enough to warrant you following through on all the recommended tests for her -- to do otherwise would be an egregious mistake under the circumstances. But at the same time, try to keep your head on your shoulders to the absolute max. Pull out all the stops to keep your attitude upbeat, but without going into denial or relentlessly pursuing unproven or disproven "cures" for scleroderma. 

 

We research breakthroughs on a daily basis so you will be the first to know of anything that is proven to be of benefit for your daughter, and I might warn there are *many* charlatans with bad info on the internet who do not have your daughter's best interests at heart. Please keep pursuing a listed juvenile scleroderma expert for your daughter. Yes, they are few and far between, and hard to reach, but worth it in the end.

 

Unfortunately, stress worsens scleroderma and its symptoms, and, particularly Raynaud's. Your cheerful and flexible attitude, taking things seriously but not *being* serious, will do wonders for helping your daughter make a successful emotional adjustment.  Let's face it, we can all adjust physically, somehow, to any illness or injury.  It's the emotions of it that are the hurdle for most of us, and even more so with the complication of needing to set an example for your daughter.

 

You can do it. We will be here for you. Reducing sources of inflammation, like gluten, might have a small impact, or it might not. Researchers are not entirely sure of the connection between gluten and scleroderma yet.  But, going off the rails with strict diet protocols could be *very* stressful for your daughter, and that could worsen her health even more!  So this is time to take a really deep breath, and then another one. This is not an emergency.  Its something important to follow through on, with tests and garnering information.  It's a very long term process that you are embarking on, to see whether or not she EVER develops connective tissue disease.  EVER is a very, very long time, and much of that time might be spent with her in pretty good health, considering.

 

Well, I'm running out of consoling words. But you get the idea, don't you?  We care, and we are here for you, and as you learn more, it will actually get better and easier to cope with. Promise.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 quiltfairy

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Posted 31 March 2015 - 02:30 PM

It must be very scary having a daughter so young diagnosed with scleroderma; I know when I found out my grandson had autism and he had the type whereby children often do not survive past the age of ten years old, so my thoughts are with him every day. I kind of have an understanding but he is only a grandson I don't :emoticons-group-hug: know what I would do if he were my son so my heart goes out to you and your daughter. :balloons: :flowers: Balloons for your daughter to cheer her and flowers for you for being a great mom.

#16 Margaret

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Posted 02 April 2015 - 01:28 AM

Morning.....I am not sure if it is considered holistic or natural, but have you added Vitamin D to her diet?  Many times, when autoimmune diseases are first diagnosed, the individual's vitamin D levels are extremely low, and this can easily be rectified by OTC vitamins.  Did your daughter have her's tested?  If not, I would ask her doc to recommend a simple blood test to rule out a Vit. D deficiency.  My son was on a very high dosage of Vit. D for years just to get it back into the *low* range.  Now he takes 1000 iu's daily.

 

The gluten free diet is a very hard and expensive one to follow.  There are also blood tests to rule out a sensitivity to gluten and the possibility of celiac disease.  It's very common in the autism world to blame behaviors on gluten, but eliminating that from my son's diet never amounted to any changes, behaviorally or physically.  A blood test to rule out sensitivity to gluten must be done BEFORE the diet is started, in case you want to have that blood test also.  That is one blood test of Gareth's that was always normal!!

 

Hugs to you.....I've been walking your path and it's very hard to watch our children hurting.  :emoticons-group-hug:

 

On the bright side.....Two inches of snow two days ago and bright sunshine and 66 degrees today......yeah..........spring time!!

 

Take care, Everyone.   

Margaret



#17 LCT2007

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Posted 02 April 2015 - 05:12 AM

Thanks again for all the encouraging words. I've had several days to digest all of this. Some moments, I feel positive and full of hope that this is nothing and that she may never develop this disease. And other moments, I'm scared out of my mind. I have been in contact with one of the experts listed on the site and he has agreed to review her medical records. So at this point, I will wait and hear back about that. Until then, other than these forums, I am staying off the internet regarding all of this for awhile. 

 

We have thought about Vit D. I will definitely ask for her to be tested for it. I am 99% positive that she was not tested in this past round of bloodwork. I know I am extremely low and I did not have a good reaction when they tried to put me on the bulk dose, so I've been trying to get mine up the old fashioned way. She loves being outside, too, so I would think she is getting a lot from the sun. We also will be asking the doctors about adding Vit E, fish oil, and Magnesium for her daily. For now, I am continuing to encourage her to be the free-spirited, active, outdoor loving little girl that she is.  



#18 Shelley Ensz

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Posted 02 April 2015 - 05:55 AM

Hi LCT2007,

 

Thank you for the update!  I'm really glad you are in touch with a juvenile scleroderma expert now.

 

It is good for everyone to be tested for Vitamin D and especially those with any symptoms of autoimmune diseases.  See our section on Causes of Scleroderma: Vitamin D Deficiency.  There are free mobile phone apps that track Vitamin D exposure.  The effect of sun exposure can vary due to time of day, time of year and geography.  The apps are so precise, they even consider how much of the body is exposed, and can literally sound a beep to let you know it is time to turn over (if you are sunbathing).

 

It was enlightening to me, as I wasn't getting even 1/20th of the exposure I thought I was; and this gives a measurable way to balance things out with supplements, as well.  You might not want to micromanage daily exposure, but using the programs to get a general idea, such as encouraging wearing less clothing (on warmer days) and playing outside (and not in the shade) during peek hours in your location -- and joining her to get yours too, if possible -- might be a really fun way to deal with D, and to make some lemonade, out of all the lemons.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.