Tuesday, February 24, 2009

Returning to Square One

I feel so wrong for feeling let down. Why am I feeling sadness? I called the rheumatologist's office on Friday to find out the lab results from Anime's latest testing. I was absolutely stunned to hear the nurse tell me that the testing no showed signs of lupus and no signs of ANY auto-immune disease! I was so shocked that I barely remember what else I asked her other than if we needed to keep the appointment scheduled for September.

Don't get me wrong, people. . . I am THRILLED that she doesn't have lupus or any other autoimmune disease!

But we're back to being without any answers. We still have no idea what it is going on with her system. We're back to square one and that is NOT a place I want to be. I was let-down because I thought we were close to an answer, a diagnosis, and now we're not. Granted, it's something ruled out but where do we go from here?

The nurse said that we are still to call if she has fevers over a two-week period. We are still to follow the medicine schedule, although I still don't understand how a pain medicine is supposed to stem off her symptoms of fever and fatigue. We should still chart/journal her health and pain over the next several months and return in September.

After talking with my mom and mom-in-law (still not sure what to call her as she's not really my MIL any more, more like a "second" mom) I have decided to get a copy of these lab results and take them to our new general practitioner. I'm scheduling an appointment for a general (thorough) check-up for her with Dr. H (our new GP) and want to review her history with him to see what options he thinks we should explore. Her symptoms are so generalized to so many things that I guess we're going to have to work on differential diagnosis to find our answers. Researching via the web has shown ideas, some as simple as mononucleosis; others such as Lyme Disease or West Nile (both highly probable in our area), to others that are arguable in their classifications like Chronic Fatigue Syndrome. Maybe it's a B-12 deficiency or a serious step infection that simple won't go away. There are so many "ifs" out there that you could drive yourself insane trying to figure it out.

All I really know is that my child has "episodes" of fever & fatigue that we can see coming on based on how she acts and looks. She has constant pain in her legs. She is severely cold compared to others and she has pain in her chest along with some shortness of breath that the inhaler didn't relieve. This is not normal for a healthy fifteen year old and it has been happening since her first strep infection in September of 2007. And no-one has been able to tell us why or look at me like I'm not some hypochondriac mom (which anyone who knows me would tell you that I most definitely am not, I tend to fall along in the "suck it up, you're fine" camp).

So as not to miss any more school, I'm making the appointment for a No School day in April, which will also give us a little time to document her health ups & downs. Anime handles this so much better than I do. She's doesn't seem to worry while I torment myself with the thought of what if she turns out to be one of the patients that by the time they figure it all out, it's too late because whatever she has is wreaking havoc in her system right now (okay some paranoia creeping out here).

The main reason we're going to her GP is that her grandma (my MIL) works there (and has worked there for many years) and if there's one thing I've learned in life . . . nepotism works. There will be a bit more of a push to find answers because Grandma is there and you take care of family.

In the meantime, I'll do my best to keep my paranoia at bay.


Emily said...

I know I twittered this to you but I wanted to suggest looking at alternative therapies/testing.

Allergies can present themselves in some very strange ways - often in ways incredibly similar to auto-immune. (The bodies response to the allergen is often to attack the body in some sort of confused state).

The other thing that we swear by is Traditional Chinese Medicine. Eastern medicine treat the whole body as a single unit rather than just treating symptoms. I've seen some incredible things happen with TCM - for example my husband has horrific hay fever which triggers asthma. He sees the TCM, gets some herbs and drinks the tea in less than 3 weeks he is symptom free for the next 2 years! I know people who have treated anxiety, reduced liver function and insomnia quickly and painlessly using TCM.

I know these don't give you any answers but they might be a wat to get ariel some help until the Dr's figure it out.

Its Just Me - Daring to Dream said...

Wow, I know it cannot be easy waiting to find out the bottom line answer to her health. I hope that you find soon to remove the wait of not knowing, but I think the second opinion is good. Keep seeking an answer until you find out. You are on the right path to pursue truth.

Anonymous said...

Ohhh, how frustrating it must be. Hoping you soon find answers and are able to keep your paranoia "at bay".
(((hugs to you my friend)))

Farmer*swife said...

When I was chaperoning at a "Weekend of a Lifetime" retreat with high school kids, I had a boy in my group one year.

He was in highschool and began having symptoms that no one could figure out. Illness, constant fatigue, pain. He was diagnosed with Chronic Fatigue Syndrome.

It took him about a year to get through it and then get back to catching up in school. Though, he was able to do some make-up work and stuff during the semesters. So, he ended up about six months behind -- but his school and teachers worked with him.

I was shocked at a boy so young 14 or 15 I believe to have this syndrome. Keep pressing.

Good luck with that and keep us posted.

J... said...

It's okay to feel let down by a no diagnosis. We are brought up to think that we get sick, we go to the doctor, he tells us what's wrong and it gets fixed. I hate, hate, hate that it doesn't always happen that way. You know there is something wrong in your daughter's body...trust your gut and don't let them all push you around. Hugs to you, girl. I hope you find answers soon.

The Modern Gal said...

It's ok to be frustrated, and that seems to be what you're going through right now. Hang in there, and hopefully you will find out what the problem is soon.

The Quiet One said...

Just wanted to add my good luck to the pile. I hope you manage to get to the bottom of this and find out whats going on.

The Queen said...

Have they tested her for Ebstien Barr? Princess had that a really long time and was really sick I finally asked them to test for Mono as long as they were running more test.. Doc said, well, If I am gonna test for mono, I'll just test for EB at the same time..

and it was EB.. and that too is a nasty bitch....I swear she still suffers from the effects of that...

Brandi said...

dear god. What a difficult situation.

I had migraines when I was about your kids age and they took FOREVER to diagnose. I went through test after test after test looking for all sorts of things-tumors, etc. And ended up reading a magazine article on migraines that ultimately pointed us in the right direction.

You most certainly are NOT being a hypocondriac and I know I would freak the hell out watching my kid (if I had one) go through that.

thank you for stopping by my blog! So glad you did that so I could discover yours!

The Queen said...

have you read this?? it's over on Granny nanny...

just go read it..

I can't keep up with all of this.. but go read it..

On December 4, 2007, she experienced the first of many symptoms involving severe muscle fatigue. Gabi began developing conditions that were unexplainable: excessive fatigue; headaches; muscle weakness and pain; joint weakness and pain; a rash that resembled a sunburn; loss of concentration; and numbness and tingling in her hands and feet. During this time we were completely unaware that these things were side-effects of her recent Gardasil shot.