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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   Itchy skin w/lymphatic malformation? (http://birthmark.org/board/showthread.php?t=3981)

RoseBuddyMom 08-08-2010 02:50 AM

Itchy skin w/lymphatic malformation?
 
Hi, my 7 year old daugher has a mixed lymphatic & venous malformation with thrombii in her right upper thigh. She was dx when she was 1.5 yrs old. Thoughout the years she goes into these fits of extreme insatiable itchiness all over her body. I have tried everything to soothe her itchy skin: switched body wash to Aveeno & prescribed products; I had her undergo skin allergy testing @ least twice (I feel horrible for making her endure that); switched laundry detergent, tried every anti-irritating, allergy approved detergent on the market; I spent hundreds of $$ on lotions, solvents, creams, gels, etc; I spent hundreds more $$ on pediatric allergists and dosed her up with twice the recommended doage of Benadryl, Zyrtec, Singulair, Clairtin, Xyzal, Clainex and the like. All to no relief.

I was wondering if it all has to do with her lymphatic system getting haywired. I notice she has these itching fits and then several days later her leg wiill act up, get inflamed and painful. She is a very happy child - she even wakes up happy - except for the days when her leg is bothering her.

Has anyone else experienced sensitive skin or generalize itchyness? Are there any antibodies or inflamations in the blood that our docs should be checking for? Please advise

missy 08-08-2010 12:53 PM

I would look into the possibility of allergies again. Rather than skin testing, ask your physician about RAST or ELISA testing, which is not a skin prick test, but blood tests. If those are negative, find out if you can see an immunologist. I could well see how an immune reaction could correlate with those symptoms.

Also, keep a good journal of signs and symptoms and their aftermath. It's data that the doctor should consider.

Missy

nickbar 08-09-2010 11:26 PM

How is her coloring? Her skin color? This is the first post I've seen (or email/call) with such a symptom. I'll ask around.

DavidPJohnson 08-24-2010 07:01 PM

We have a seven year old granddaughter in Phoenix who has a mixed veinous and lymphatic malformation on the back of her upper left leg. It bleeds occasionally when it is bumped or sat on for extended periods (such as in school), but has not caused an itchy sensation except on rare occasions and no treatment was needed for an itchy problem. It has a hard very red crusty surface. We tried interventional radiology with no success as it is a microsytic lymphangioma. We are seeing a surgeon at Phoenix Children's tomorrow to plan on surgical excision in the future. I would be very interested in treatments that you might have tried and the plan for the future. Thanks

DavidPJohnson 08-25-2010 03:16 AM

My wife advises that when it was somewhat itchy, that ice helped a lot. But you have probably tried that.

RoseBuddyMom 08-25-2010 03:28 AM

Thank you all for your replies...
We have an appt for the pediatric allergist - we will revisit the allergies. So far pediatrician and vasc anomaly docs are convinced the itchines is allergy related. oookkkaayyyyy

@David I am sorry your granddaughter is going through the mixed malf too. :(
My daughter's itchiness is from head to toe - not confined to the malf site. Her malf also turn various colors and get hard and crusty. So far it has bled outward only once. We had the consult with the interv. radiologist and truthfully - we do not want to subject her to the treatment at this time. Her condition is 'mild' so we have time on our side right now.

If you don't mind me asking, was your granddaughter in much pain post procedure? How long was recovery time?

In 2005 & 2009 she had MRI of affected area and it was originally thought to be just confined to upper right thigh, but 2 weeks ago, she was sitting on the floor playing and complained of pain on lower buttock. Day 2 of complaint, I checked and boy those veinous were very pronounced.

We just had a 2nd opinion and they want to repeat MRI and discuss the sclerotheraphy again. We were recommended a book to read: 100 Q&A about Vascular ANomalies by Dr Francine Blei ( she was our 2nd opinion recommended by our current vasc anomaly speciatist).

So far the only real 'treatment" we have provided is Tylenol and/or MOtrin as needed and compression garment panyhose as tolerated by a young child.

I will keep your granddaughter in our prayers - please update me on her progress & treatment options as well. I am very interested,

Thank you.


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