Lymphedema in a teen with Crohn's. Anyone else experience that?

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CarolinAlaska

Holding It Together
Joined
Jan 24, 2013
Messages
2,574
Jae has had a left swollen leg for 3-4 weeks now, since starting a new job in which she is on her feet all day. Workup shows normal veins, arteries and heart. Peds cardiologist calls it lymphedema. Inflammation or infection can cause it. She doesn't seem to have infection...
 
Did they check flow back up the leg?

DS has issues with temperature control as well as constriction of blood vessels ( livedio recticularis ) Rheumo said it was related to part of his autonomic dysfunction.

No leg swelling though

Any rashes with it at all ???
 
Did they check flow back up the leg?

DS has issues with temperature control as well as constriction of blood vessels ( livedio recticularis ) Rheumo said it was related to part of his autonomic dysfunction.

No leg swelling though

Any rashes with it at all ???

They checked an ultrasound of entire leg from groin to toes for venous flow. She has good pulses. I think they are going to do some kind of nuclear medicine study to check lymphatic flow. We're waiting to hear from a vascular surgeon and a lymphedema clinic. No rashes, but capillary refill is about 20 seconds. They also did an EKG.

It is interesting to Google lymphedema and Crohn's...
 
The following is from a recent paper "New developments in clinical aspects
of lymphatic disease" by Peter S. Mortimer and Stanley G. Rockson, The Journal of Clinical Investigation, Volume 124 Number 3 March 2014

"The range of diseases associated with lymphatic dysfunction
causing disturbed immunity is likely to be extensive. An example is
inflammatory bowel disease, particularly Crohn’s disease (CD). CD
is a chronic relapsing inflammatory disease of the gastrointestinal
tract. Abnormalities in lymphatic drainage have been noted in the
original descriptions of CD but essentially ignored since the original
publication (34). There is increasing evidence that affected patients
share a common phenotype, namely impaired immune responses to
bacterial infection. Genetic and genomic studies point to immune
deficiency, rather than autoimmunity, as the functional lesion in
CD. It is postulated that the dysregulated macrophage response
to bacteria is central to the pathogenesis of CD (35). Given the
importance of the lymphatic system to innate immunity and macrophage
function, it is not difficult to hypothesize a role for lymphatic
dysfunction in CD. This hypothesis is clinically supported
by the development of genital lymphedema caused by granulomatous
inflammation infiltrating the skin (and dermal lymphatics) in
the anogenital region (anogenital granulomatosis) (36). Recurrent
attacks of inflammation resembling cellulitis occur, and up to one
third of patients affected are found to have gastrointestinal CD."
 
The references in my earlier posting on lymphatic involvement with CD are as follows:

34. von der Weid PY, Rehal S, Ferraz JG. Role of the lymphatic system in the pathogenesis of Crohn’s disease. Curr Opin Gastroenterol. 2011;27(4):335–341.

35. Smith AM, et al. Disordered macrophage cytokine secretion underlies impaired acute inflammation and bacterial clearance in Crohn’s disease. J Exp Med. 2009;206(9):1883–1897.

36. Van de Scheur MR, van der Waal RI, van der Waal I, Stoof TJ, van Deventer SJ. Ano-genital granulomatosis: the counterpart of oro-facial granulomatosis. J Eur Acad Dermatol Venereol. 2003;17(2):184–189.
 
I don't know if I can find any evidence to support this, but this morning I am very suspicious of her dicyclomine contributing to the lymphedema. I'm considering weaning her off to see if it helps. She started it in the past couple months...
 
No, I took her off work for a week to see if it would help, and her leg swelling went down in three days. Sadly, her boss won't let her come back to work. She found out today that he thinks that this job is too much for her with all her health issues :(

The above comment was me, not realizing that I was logged in as her, but it wouldn't let me delete the comment.
 
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