My 15 year-old daughter has pitting edema. I have posted about "fluid retention symdrome" and the "Waterfall Diet" at length, and wish the search function was working! My fingers are stiff today, but I'll try to write more...I'll use "dtr" for "daughter" to help my fingers! Forgive typos...Will say first off that my dtr has type 1 diabetes, which complicates everything, and positive autoimmune labs. We think her Lyme is treated but she's ahd a lot of abx and w/diabetes, that can cause some yeast issues...
My dtr's fluid has fluid retention all over, including breasts, upper arms, thighs, buttocks, andkles, fingers, and legs. She gained 30 lbs, in a few months, from fluid mainly. She also has had dramatic distension of her stomach at times, looking almost pregnant, which is probably fluid or may also be related to GI inflammation.
At first, doctors didn't believe us. It came and went, fluctuating and usually worse in the pm. Her ankles and fingers were the first to have swelling, which landed her at a rheumatologist, who was mystified.
The school nurse documented the fluctuating swelling for us. Also, the nurse documented swelling on top of her head, which accompanied worsening of her chronic headache.
A couple of months ago, the fluid got so bad that it was stretching her skin (presumably suddenly) so that she has purple stretch marks in all the areas that have fluid retention- basically everywhere. They are disfiguring. The swelling became quite painful. She was very depressed.
She was only peeing 1/4 cup in 24 hours, and had pos. test for kidney inflammation at times.
We have finally found some doctors who will work with her on this.The fact that the edema is always bad enough to "pit" got some attention. Strangley, doctors don't seem to examine and touch much w/her. If you press her arms for instance, it feels abnormally hard, like a ballooon filled and stretched with a lot of water.
My dtr had an endoscopy which showed gastritis and extensive GI tract yeast. She was treated with fluconazole. They diagnosed intestinal permability (leaky gut) which was allowing food and other molecules to mgrate directly into the blood stream thorugh the gut lining, causing food reactions (antibodies formed and caused systemic inflammation). This was one theory about the fluid retention.
She went on an elimination diet (see Waterfall Diet by Lazarides). This caused a lot of improvement, but may not be the whole picture. On the diet, she lost 15 pounds. Swelling started to improve, and GI symptoms too.
The she tried adding back milk, to see if it was okay, and things fell apart again. Her reaction to 3 glasses of milk in 8 hours was incredibly dramatic and has lasted 3 weeks.
At the same time, testing has revealed dramatic problems with her adrenal glands (which could contirubte to electrolyte problems, for instance). Her cortisol is very low, and the daily pattern of cortisol production is reversed form normal.
Aldosterone is also produced by the adrenal gland and controls fluid balance.
Her thyroid is almost low , and has been low in the past.
All of this is mediated by the pituitary gland, which is also connected to the hyypothalamus in the brain. (For her diabetes makes these things even more complex, as does autoimmunity, but these two things are not a necessary part of the picture w/adrenals).
Yesterday she had an ACTH stimulation test to see if it is the gland or the brain that is haywire.
It is possible that the food reactions and inflammation from that are affecting the glands, or yeast could be affecting the glands, or Lyme or Lyme meds could have affected something. She was also on Zoloft at one point, and had problems on it.
If you Google or do a Yahoo search on "fluid retention syndrome" you will find some good information. There is an English site that is very good, and a naturopathic site that is also very good. Sorry I don't have the links.
We'll keep folks posted on what we learn. For a 15 year-old, with the typical teenage obsessions w/physical appearance, this has been very difficult. Pillsbury Doughboy is a good image to descirbe this. Good Luck!
[This message has been edited by Lyddie (edited 10 August 2005).]