Did you get any help at the doctor today?

Yes, we did find help at the doctor's. He was able to observe and document some of the swelling and purple marks, although the severity at that moment was much, much less than the night before. He also believes us. I also had the school nurse document her observations of my daughter's variations in size, my daughter's stoicism etc. but he said he didn't really need this...

PAB, I do believe this swelling is what has caused the horrendous daily headache, which started in January 2003. The doctor agrees. After all this time with doctors belittling my daughter's insisting that her "head feels swollen," what a relief! The spinal tap was negative and after that the fluid issue was dismissed.

However, fluid retention syndrome like this is "outside Western medicine." How were we supposed to know this? This child has a dramatic, observable, "objective" problem that in many ways (esp. w/her diabetes) is dangerous, and not a single one of these MD's we've seen has offered any help.

Not only that, but when she went in the hospital (we thought to get help), they set a trap and reported me to DSS for resisting an eating disorder diagnosis! My daughter told them she feels "bloated after eating", and she IS bloated- but they interpreted this as delusion/body image issues.

In retrospect, this is truly what happened. They threw in stuff about Lyme, time home from school due to pain, tight diabetes control (about which they seemed to know nothing), whatever they could throw in to make it look like we were sitting around the house cooking up medical problems. But the main thing was they did not believe in this swelling.

My daughter has gained 25-30 pounds since December, never eating more than 1000-1200 calories/day. Her new doctor says this is all fluid! Previously, people we have seen, including an eating disorder specialist, told me that she must be sneaking food. I tried to tell them that I would be able to see this in her blood sugars, or her insuin doses (recorded on the pump)but they continued to insist that I should not trust my daughter!

They didn't succeed in this attack because we have a thriving family with 3 kids who are involved in all kinds of stuff (including my daughter, despite her health issues), lots of support from school community and doctors and it was obviously a crock...Sorry if you have all heard this before, I'm still recovering!

Anyway, this new MD is an award-winning family practice doctor who happens to be of Chinese descent. He told me straight out yesterday that although her problem is obviously real, to him as well as to us, that help will have to be "alternative" and he will have to do some careful research not only on causes and treatment but on whom she should see. He is talking w/a cardiologist who is an expert on fluid problems...

I printed out all the stuff from the sites I found on this fluid retention syndrome/idiopathic edema syndrome and the new MD read it all, kept it and told me he thought it would be helpful if I gave it to every doctor we see! he said he had never heard of it before. I expected more rejection or hostility, but he was very eager for the information and just sat there reading and thinking for a long time.

His main comment is that the fluid retention is clearly a result of something gone awry in the autonomic nervous system. It can also be related to insulin receptors in the hypothalamus and limbic systems (I'm quoting, ) esp. in people with diabetes.

He is also thinking about Lyme (and Dr. J.). He understands the problem of GI issues, reactions to meds, and yeast and that the Lyme treatment was ended for these reasons, not because it was resolved.

We see the endocrinologist today- he's convinced and supportive too. He writes in his letters that this is all due to Lyme- amazing!! The problem is, that he has used this (It's Lyme, with a shrug) to avoid responsibility. Afterall, Lyme is not an endocrinologist's domain...

Next week we see the alternative MD in Cambridge, who is a family practice MD "in the system" but has access to all the alternative practitioners at the Merino Center there, a huge place with everything you can think of: acupuncture, Chinese medicine, massage, etc. etc. all covered by insurance.

The message of our experience is that we have been entirely too trusting. We've always had great relationships w/MD's. With "mainstream" problems, we've been asked to be on panels for diabetes and asthma education. I've never experienced this type of prejudice before, and it is eye-opening.

Also, we didn't know that whatever might be wrong needs to fit into a standard diagnosis, or we would meet with disbelief and worse. This is very relevant to Lyme! I am trying to forgive the medical extablishment its limits, I really am (which doesn't mean I'll be quiet, just that I will find peace adn relief from anger). We just need to avoid any more experiences like this. All of us. I really hope that writing this helps someone else be more careful.

The other message, which is positive, is that there are truly some great doctors out there, who really care and will help even when the illness is complex and mysterious. This new MD even had my daughter's chart at home- he said he was thinking about her case, and also he was writing a long letter to the Cambridge MD for next week. And he has a new baby, so he took the chart home!

We are going to be very choosy about who we see, but persistence seems to be paying off at last.

Oh- and this book is great....for anyone else dealing with this at any level of severity, apparently diuretics (even herbal)are not the answer, and can worsen the situation in the long run.

I will post anything we learn along the way for all of you who also suffer from this.

Here are those sites again:
www.cowdens.freeserve.co.uk/features.
html
(has great photos of the same woman in the am and the pm, when her size doubles)
www.digitalnaturopath.com/cond/
C5776201.html

and also there is a site on Linda Lazarides, the author of "The Waterfall Diet" with a ton of information

My daughter had another good appt. today today, this time with my her (diabetes) endocrinologist. But it has taken 15 months of hellish experiences to get even him (who knows us well) to really believe us.

To support our observations,we have had another, objective person observe and write notes about the variations in size. Perhaps you could have someone do this-? Purple stretch marks that come and go are proof of these rapid changes in body size. Keepiong a log of wt. changes was suggested too. Finally, if you get really swollen, maybe you could go to the MD or even emergency room so it is observed.

With females, it is apparent that noone will ever believe our information on food intake! I doubt this is true of guys...

At this point, even at her best,. my daughter's edema is "pitting." Both MD's checked for this by pushiing on her leg with their thumb..the white indentation stays for longer than it should. This also erased any doubt, and maybe you could try this...

Months ago, when it wasn't this severe, there was no really objective proof that this swelling was going on, but now it is very obvious, because it is so severe.

My daughter is comfortable with this endocrinologist and yelled at him (!) to get across the severity of what she is experiencing, and she cried a lot.

This is very, very hard to deal with and we'll let you know if we find anything out. Her primary care doctor is consulting w/a cardiologist who has handled another case in which the autonomic nervous system affected fluid balance. And we see the alternative/food allergy MD this week.

Have you tried eliminating possible foods that you might be sensitive to? That is only one possible contributor but we have noticed that both gluten and citrus fruits seem to aggravate things. Are you on antibiotics? Do you have yeast?

Thyroid issues are very relevant to fluid retention syndrome. My daughter had low thryoid tests for two years, but because they weren't officially low this year noone is making that connection for her.

In addition, any autoimmune activity (which you have in your thryoid, maybe elsewhere) might also be relevant. MY daughter has had pretty high autoimmune labs and ahs type 1 diabetes, another autoimmune problem.

Do you have a good LLMD? I can't believe he/she wsn't "impressed" by pitting edema. Does anyone else have an LLMD who has commented on swelling that "pits" (doesn't spring back quickly when pressed)? Rheumatologists interpret this differently, and Dr. J. once said my daughter had an "effusion" from Lyme- but maybe it was just fluid retention in its earlier stages.

The problem is now clear, but not solved. Noone thinks it's a good idea for her to stay on diuretics, and this medicine may actually make fluid retention worse in the long run.

But psychologically it is sure a great boost for her ... and proves to HER that all this weight is not fat, but liquid.

Has the Lasik helped her headache?