20 replies to this topic

[Sacha]

Hi Guys,

My daughter Katie, who is 8, has over the last year become so veiny that she looks like a road map. But they had started to disappear when her skin colour started to come back. Well this was until tonight when they now look like they are bulging in her chest and neck. They are so blue that you can follow them from her neck, down her chest and to her thighs.

Does this sound familiar to anyone? I'm also not sure if this could be due to the new patches she is wearing to help with her Raynaud's?

Should I be worried? I feel a bit strange phoning the doctor to say her veins have got more veiny!

If anyone else has experienced this complication I would love to hear.

Sacha.

[enjoytheride]

I have had that happen a couple of times. It did not seem to be connected with me to any medication. But it never lasted long enough for me to get to the doctors. And did not seem to cause any problem- just odd. And since I have been on medication, it hasn't happened again.
I would certainly give the doctor a call about this. Just to be safe.
It would have been good to get some explanation of this.

[miocean]

Sacha,
I don't know anything about your daughter's vein issue, but I do have experience with ignoring an issue or not feeling like I should bother the doctor with it. If you are concerned, call the doctor, or if your medical insurance company has a nurse call line, call them. Better safe than sorry.

miocean

[Joelf]

Hi Sacha

Sorry to hear that you're worried about your daughter.

I've never had this problem myself, so am unable to advise you through my own experience.

I would, however, agree with Enjoy and Miocean and suggest that you contact your daughter's doctor/rheumatologist and explain the position to him. He will then be able to determine if these symptoms need further investigation, or at the very least, be able to put your mind at rest.

Do post again and let us know the outcome.

[Sacha]

Thank you for your advice guys; I am going to chase her nurse at Great Ormond Street Hospital today and she has the district nurse coming in to give her methotrexate so will consult her opinion too. I just feel like I'm bothering them all the time.

They are aware of her skin being quite thin and translucent which it never used to be until she became unwell a year ago. Her normal skin tone used to be a little tanned, not milky white.

I wonder if her medications are not working as they should, she has started to look quite pale and peaky again.

Thank you for listening; this forum is my lifeline or should I say sane line at the moment.

Sacha.

[omaeva]

You might be thinking of Cutis Marmorata.

I get this very often especially if I'm feeling cool. It's mostly on my legs and arms, looks like I've got a faint, fishnet blue stocking on.

The proper term for when it happens when you are exposed to cold is Livedo Reticularis.

[Sacha]

Wow, I've never heard of that. I will have to look it up.

I did speak to her nurse today and she thinks that it is being made more prominent because of the patch she wears to dilate the blood vessels.

I am going to keep an eye on it. It doesn't bother her right now but if she was a teenager I'm sure it would.

Sacha.

[Jeannie McClelland]

Here's a link to livedo reticularis, courtesy of the Mayo Clinic. It's got a pretty good photo to go with the text.

Cutis marmorata translates to 'marbled skin' (my Latin teacher would be impressed I remember that much ) and I must say the livedo in my legs does indeed look like our marble cheese board! While I am showing off the remnants of my Latin, reticularis means 'netted'. Think reticulated python - that beastie's skin does look like a net pattern.

[Shelley Ensz]

Hi Sacha,

That's an excellent question you raise, about the veins. Please bear in mind that I have no medical training at all. In fact, I can be a medical hazard, having given our dining room table sufficient shots of heparin to keep it from having a blood clot for the next ten years. I seem to skip Point - Aim and go straight to Shoot with medical weapons (aka needles) in my hands.

I just wanted to emphasize that there's a big difference between prominent veins and livedo reticularis. I have very hidden veins but I also get livedo reticularis occasionally. On me it is a very dark purple/blue, intricate, lacy pattern all over the affected area. It does not follow the veins; it looks like a colored spider web. And this is even though they are often quite hard put to find a vein on me for a blood draw.

My husband has extremely prominent veins, and even the more so when he loses weight. They literally stick up, out of his arms. The phlebotomists are thrilled to see him as it makes for such easy blood draws! His veins subsided for awhile right after his lung transplant, due to some medications, and then fluffed back up again. In general, even though my husband and I are both at the outer edges of normal, I've never heard any medical professional concerned about either of us, due to big veins or the apparent lack of them.

It just might be that your daughter is finally getting normal circulation, for a change, thanks to the medication, and this might actually be something to be excited about, provided the doctor assures you that it does not indicate any problem. Please keep us posted on how she's doing and what more you find out about this, okay? And give her an extra hug, just from me!

[djspin]

Hi Sacha

I was wondering what happened with your daughter's veiny skin -- my daughter, Sarah, is 7 and is being treated with methotrexate and methyl prednisone pulsing for scleroderma -- when she was 3 she had a rash that wouldn't go away and then quickly developed bound down skin on right knee, loss of motion in right wrist and contractures in right hand -- the doctors thought it was eosinophilic fasciitis and she improved with the prednisone and methotrexate over several years and was weaned off all meds. In November 2011 she had a rapid flare up but it has involved fat loss in right shoulder and right leg, and spreading veininess -- she does not have the same hardening of skin, though. The veins are superficial but very visible - like a road map.

Thank you for any information that you may have to help us figure out what is going on. My doctors are wonderful but it is such a rare phenomenon that any information will help.

I hope that your daughter is doing well!

[Joelf]

Hi Djspin,

Welcome to these forums!

I'm sorry to hear that your daughter has been suffering with eosinophilic fasciitis (EF) and has had a recent flare up. It must be very worrying for you but it's refreshing to hear that you're receiving good support from your doctor.

I've found another thread on EF which I hope will give you some more information about this very rare disease.

Do keep posting and let us know how your daughter is faring.

Kind regards,

[Amanda Thorpe]

Hello Djspin

Welcome to the forums and I am sorry your daughter has scleroderma and started showing symptoms at such a young age! It's great you have good doctors treating your daughter, that's half the battle.

Take care and keep posting.

[Stormae]

Has your daughter ever had her phosopholipids tested? Mine showed up slightly over the average range and I can also get that mottled type of look. I've got extremely fair skin (no pigment) so it shows up easy (English/Scottish/Irish blood).

I don't know if I have it or not, but there is a condition called 'Hughes Syndrome' (aka Sticky Blood Syndrome) I still need to go back to doctors so I can't tell you much info about outcomes for it. It can cause blood clots, so I'd definately get her checked out (important when she becomes a women as this condition can cause people with it to have miscarriages)

[anotherday]

Hi, Sacha!

I have very visible veins too, especially in my legs, but they don't look like cutis marmorata. I have a white skin but not so much.
I have crest scleroderma and antiphospholipid syndrome, and I'm treating with methotrexate, sildenafil and phenprocoumon (anti coagulant).
I'm going to ask about this to my rhematologist, going to see her next week.

Hugs

Ro

[Joelf]

Hi Stormae

Welcome to these forums!

I have the positive antibody for antiphospholipid syndrome and in fact have suffered a DVT in my groin.

Now that you've found our forums, please do keep posting and let us get to know you.

Kind regards,

[Amanda Thorpe]

Hello Stormae

Welcome to the forums! I don't have any of the issues you do but wanted to welcome you to the forums, maybe you'll tell us more about yourself in due course?

Take care

[Amanda Thorpe]

Hello Jo

Okay I have got to ask, what happened that you got a DVT in your groin, of all places, 'fess up now!

Take care.

[Joelf]

Hi Amanda,

Well, I didn't want to bore everyone with the story, but you did ask me to tell it!! (You've been warned!!)

I've always had varicose veins and had an absolutely huge one on my leg which was so ugly. I happened to be speaking to an aquaintance who mentioned that she'd been to a private clinic where they inject foam into the vein and this apparently pushes the excess blood out of the vein which then goes down and looks normal. Her legs looked fantastic after this treatment so after a bit of deliberation and with visions of my ending up with legs like Betty Grable I had the procedure done (how dumb can you get? ) The doctor was quite confident that it would work, even though she did comment on the fact that the varicose vein in my left leg was big, but undeterred she injected the foam in both legs and then instructed me to walk quite lot over the next few days to help with the circulation and off I toddled feeling very pleased with myself......Ha!! Within two days my left thigh swelled, became very hot and red on the inside (I could have fried an egg on it!) and so I went back to the clinic whereby they performed an ultra sound on my leg and groin and found I'd developed a DVT!! I had to stop exercising in case I caused bits of the clot to break away and move around to somewhere more vital and also take heparin and warfarin for six months. To say I was absolutely livid was putting it mildly!!! It was no comfort that it was really due to my own vanity and of course at that stage I was unaware that I had the positive IgG antibody so had 'sticky blood'. The most bizarre thing was that when I confronted the doctor who'd performed the procedure and basically screamed abuse at her for about 5 solid minutes she advised me to have the procedure done again!.. saying that she felt sure I would be satisfied with the outcome??!!! Satisfied......I'd developed a blood clot, for goodness sake!!! I didn't know whether to laugh, cry, have hysterics or a combination of all three!!!

Suffice to say that was my first and only foray into the world of cosmetic surgery; I'm only thankful that it didn't turn out worse. In future I shall simply wear trousers and put up with my wrinkles and other signs of the passing years; the words 'mutton' and 'lamb' come to mind!!!

[night owl]

Hi

I have a vein road map mainly across my chest and I have been diagnosed with Livedo Reticularis. My journey with scleroderma started when I was in my early teens and I am now into my fifties. I can be light hearted and say my vein map its like a motorway system which has nothing on me but people’s comments who don’t understand can be very difficult even at my age.

How does your daughter cope with everything?

Night Owl

[Amanda Thorpe]

Jo you are hilarious, (incident was not obviously) if you were "across the pond" you coudda sued and bought yourself a new pair of legs! What absolute front for the woman to offer to do it again though!!

Take care.