OP here.

PP who wrote about epilepsy, I really hope this is not the case. That is one of her three more common conditions that I like to think of as in a box, humming along with minimal maintenance. Nothing else she has is in any way related to epilepsy--indeed everything she has seems unrelated and to be entirely separate disorders. Our goal would be to get her two uncommon disorders to the point where the epilepsy and her other two more common disorders are now. Probably deluding ourselves that over the long run we could get everything to be where epilepsy is now and stay there, but for this stage we need the delusion.....

Anonymous wrote:

Anonymous wrote:Unfortunately this is a common pattern with a rare/complex medical condition -- it sprouts subconditions and sub-categories of conditions. A diagnosis isn't static and neither is a medical condition.

OP here. For years all we wanted was a diagnosis. And then we got one, we realized that this was not nirvana. Another long period of trying this and that to get a treatment that restored something like a normal life. And you are right: now we are on stage 3. I don't see the main diagnoses changing--they are pretty much all lifelong chronic disorders--but you are right about the sprouting. Didn't anticipate that--our happy little bubble burst this week with this new realization.

As to advocacy--very important and DD has become much better at it the more she sees me do it. She even once disputed what a doctor was telling her by pointing out test results that didn't support his view. A proud moment. I am still with her for the two more complex disorders and definitely for the long haul schlepping. She hasn't got a license yet owing to epilepsy, one of the more common disorders she has.

Epilepsy is an illness that has remissions and periods of sprouting new facets. It's frustrating that way. There may be periods of her life where she virtually forgets about it and periods of her life where it is a foremost concern. It intersects with many other diagnoses. I know since being diagnosed with epilepsy at a young age I have had to also be followed for Dupuytren's Contracture in my hand; for depression and for other ailments that are adjuncts to epilepsy.

Anonymous wrote:Unfortunately this is a common pattern with a rare/complex medical condition -- it sprouts subconditions and sub-categories of conditions. A diagnosis isn't static and neither is a medical condition.

OP here. For years all we wanted was a diagnosis. And then we got one, we realized that this was not nirvana. Another long period of trying this and that to get a treatment that restored something like a normal life. And you are right: now we are on stage 3. I don't see the main diagnoses changing--they are pretty much all lifelong chronic disorders--but you are right about the sprouting. Didn't anticipate that--our happy little bubble burst this week with this new realization.

As to advocacy--very important and DD has become much better at it the more she sees me do it. She even once disputed what a doctor was telling her by pointing out test results that didn't support his view. A proud moment. I am still with her for the two more complex disorders and definitely for the long haul schlepping. She hasn't got a license yet owing to epilepsy, one of the more common disorders she has.

Unfortunately this is a common pattern with a rare/complex medical condition -- it sprouts subconditions and sub-categories of conditions. A diagnosis isn't static and neither is a medical condition.

I can relate, though minimally. My younger child had two diagnoses this year, each taking up 3-4 months of mystery and doctor whack-a-mole, and we are just wrapping up the second one. Neither have been threateningly serious, though surgery was/is required, and one of them may pop up and present issues later.

It has been an exhausting year. I have managed to somewhat keep my life together, but I feel like some days all I talk about is medical stuff - god help my friends for having to listen to me. I also feel very self-conscious and wonder if people think that I am nuts and my child isn't actually having issues. It's embarrassing, in a way that is hard to explain and in a way that I don't mean negatively toward my child. I can empathize with what you're going through, though I understand your version is more serious and I am so sorry for that.

It sucks. It changes things. But she's lucky to have you in her corner, even if the corner is a hard place to be sometimes.

OP here. Thank you for the kind remarks, but I am sure many mothers on this forum would have done the same.

The experience has re-enforced my belief that every child needs and deserves to have someone always in his corner. Initially DD didn't much appreciate the effort but she has told me so many times since how glad she was I persisted through the conventional medicine route. I definitely have a much better understanding now of why people give up on that and go unconventional, but in her case it definitely would have been the wrong route to take.

Your suggestions are helping me to slow down a bit and not feel so driven to fit as much as possible into school vacation. I know from experience that the best course often is to make haste slowly--just need to be reminded. One test will require going to JHU four days in a row. Fatiguing just to think of the drive!

I laughed about the Washington Post medical mystery articles. I spent so much time on line researching various possibilities during the pre-diagnosis phase that I usually know what the person in the article has within the first two paragraphs.

I could probably write an ebook about having a child with an undiagnosed illness. And once we knew what she has, I certainly wanted to start a Mothers Against Somatoform Diagnoses movement!

OP - Remember, too, unless your daughter has limited capacity in some manner, that she must become her own advocate and understand the various aspects of her medical conditions. If you are a single parent, it is probably very, very important to have not only a will, but a designated power of attorney, health care directive and health care proxy for yourself, who is not your daughter as she may be in the midst of health issues herself. AND to get your daughter to sign appropriate papers designating a trusted person you could could possibly count on to help through the maze of doctors if she is likely to always need some support.

The best thing you can do for any new doctor is to keep detailed records on hand of all of the conditions, tests done, doctors/medical centers treated at. At least you are near a number of top hospitals including NIH. As noted, give yourself some pampering now and on a regular basis to keep a balance in life.

OP, you're an inspirational mother, just like Mother Pollard, ""My feets is tired, but my soul is rested..."

She lived in Montgomery, Alabama during 1950s bus boycotts. Despite her advanced years, she refused to take the bus and was adamant that she would walk to see change happen.
http://www.biography.com/people/mother-pollard-21384881#synopsis

It sounds exhausting, but you hung in there when you could have quit a long time ago. You got answers, you got your kid treatment.

I agree with the PPs. Take a day or yourself. Indulge. You've really been a great support to your DD and I'm sure you have a lot of advice for those who are just starting on the journey. All the doctors you've seen! Wow! You and your DD should be featured in one of those profiles in the Health section of the Washington Post! I know you're really tired and would just like a break. I'm sure the worse is behind you. You're on the right path and while there may be some bumps and detours, you know far more than what you used to.

Hugs. Best wishes for you and your family.

I am not going to tell you she can handle it herself. Life has been unfair to her. She is lucky that she has you. Good luck! Be the strong mom that your daughter needs.

You're doing great! And I'm sure you learned a lot about medical advocacy in your first round that will make this round a little easier.

My best to your daughter.

Just for today, give yourself a day off (or two). Do something completely unrelated and give yourself permission not to deal with this. Come at it fresh after a short break. And find a friend, counselor, yoga group, anyone or anything that you can start to walk through this with. As you know so well, caregivers have their own strains, and you need support in that role, while you give support to your daughter.

So tired of dealing with DD's medical problems. Need some encouragement to go at it again.

We spent four and a half years trying to get a diagnosis for her problems and then within a month got a diagnosis of condition A and unrelated condition B, both uncommon and both considered non-minor health problems for which treatment can be tricky. I am almost embarrassed to admit that after diagnosis I counted up all the doctors we had seen to get to the point of diagnosis and it was over four dozen, the majority of whom more or less told me it was all in her head. She also has three other unrelated medical conditions, but they are common and treatment protocols are well developed.

It took another year to get A and B under control and there has been a year since then in which she can actually live a life and medical stuff is just the occasional check in. We did just that yesterday for condition B this week at JHU. Two bothersome symptoms she has been managing that we thought were part and parcel of condition B they told us were not and point instead to a possible complication of condition A. Treatment could require major surgery. And they suggested she possibly has another uncommon condition, inherited, that would require a genetic test to confirm and which needs treatment to avoid long-term complications if she has it.

She is now in her early twenties and has been a real trooper since diagnosis and treatment. Things have been going well. But now once again we are faced with lots more investigation and more things wrong. So dispiriting.

How many damn conditions can one young person have? I am in my fifties and don't have one thing wrong. So unfair!

The earlier ordeal of getting a diagnosis and treatment has left me spent and exhausted, but I know I just have to suck it up for a new round. I really want to crawl into a hole and pretend the doctors said none of these things and all this new stuff will all just go away. Part of me thinks now that doctors no longer think it's all in her head they are simply making her an even more interesting patient than she is.

Buck me up please! Need to get on the phone and start making appointments for all the tests and new specialist visits JHU recommended. (And please no comments she should be handling herself--she manages her three more common conditions entirely on her own and has more than enough on her plate dealing with the symptoms of the other two conditions and taking a heavy STEM course load.)