We're winning!

...against the staph infection that is! :-) Less than 24 hrs after starting the treatment plan it was looking much better and is now almost gone. Yeah! The cultures came back as a strain of staph that is normally resistant to augmentin, but combined with the topical cream it seems to be doing the trick. No MRSA for us, thank GOD!! Just in case you don't know what a newly brewing staff infection looks like:

Pretty nasty stuff, and that was just beginning. If your kid gets a rash like this don't wait to see the Dr.!

OK, it's late... as always... more updates coming soon.

What now??

Wow, so much has happened since my last post. I hardly know where to begin... I think I'll work backward from today.
Today Emma woke with an angry looking rash all over her bottom. I'm talking about a rash that makes you grab the phone and take the first available appointment at the pedi... something isn't right... kinda rash. I snapped a pic of it right away because 1) I've discovered a need for documentation of bizarre health phenomenon since people always tend to assume overreaction from parents, and occasionally bizarre things disappear by the time you get to the Dr. 2) I have a new fabulous camera and I'm taking pics of everything anyhow and 3) our old pedi is just an email away when I need him, (have I mentioned that I love him?)
So I take the first appt, a mere seven hours after my call, and sit looking through hundreds of rash pictures online, (a passtime I would not recommend to anyone, unless you enjoy being grossed out and feeling itchy all over for no medical reason), trying to figure out what we have. None of the pictures really fit.
I decide to email the pic to our "Dr. Steve" and see if his trained eye can identify it with ease. A couple of hours later I get his response, " Impetigo from Staph aureus. Glad you are getting an appt. Watch for deeper boils that my need to be incised". OK, that's not what I wanted to hear, but it is what I was afraid of.
We finally get in to see the new pedi's NP at 4 pm. The rash has already spread down her butt cheek and on to her thigh, and it is ugly! It had almost reached her infusion site on her upper butt cheek as well so I pulled it and moved it to a safer location on the opposite thigh. I know that staph in a site is bad news. She says we have two possibilities, 1) it's normal staph and it will respond quickly to antibiotics (and it's only spreading like wildfire because Emma has "issues"), or 2) it's MRSA, the oral and topical antibiotics aren't going to help and she's going to need IV antibiotics by tomorrow. Freaking fabulous!!

So now we wait on a culture that will take 48 hrs to determine what's growing in there. We have to have a follow up appt tomorrow by 2 pm if all is well, or by 10 am if things look worse. She wants to have plenty of time to work on hospital admission stuff since it's Friday... just in case.

She wanted to put her on Bactrum, a sulfa antibiotic that can treat some MRSA, but Bactrum has been a serious hypo inducer for Em in the past and no one knows why, (I'm talking 200 point drops in 15 minutes, passing out at big brothers school orientation kinda hypos), so we decided to try Augmentin first. After all, this may be easy to kill...
So I put her to bed tonight after her heat soak, antibacterial scrubbing, antibiotic cream, oral meds, etc and go down stairs to chill for a bit. Her bg is 180, she had a good snack before bed and all is well, so why is her pump screaming when I come back up the stairs 2 hours later? Because she's 45!!! WTH? ????????? I grab some glucose gel which she sucks down with minimal protest and wonder why on earth she's low. Nothing is unusual except the antibiotic, why is this happening? I sit on her bed and look around her room and notice that another med syringe is sitting on her bedside table. It's her kidney med and she didn't take it in the chaos of the evening.

Somehow the irony of the whole thing just hit me. I'm terrified to giver her the best antibiotics to kill the crap that's growing on her skin because of the lows, but the lows happen anyway, only I'm not expecting them so they go on much longer than they should.... And the most dangerous threat of these kinds of infections are that they can damage your kidneys and cause glomerulonephritis, which she already has, and now the chaos of actually treating the infection has stopped us from treating this "potential complication" that she already has. What can I do but cry, have another glass of wine and update my blog... there's much more to update, but I have to get some sleep. TTFN~

Another MD in the headlights...

We met Emma's potential new pedi today. He has a huge practice in a beautiful office in Stone Oak, (N. San Antonio). He has 20 years experience in pediatrics and was highly recommended as one of the best in the area.
It took his assistant a full 35 minutes to input Emma's basic medical history and list of specialists into the computer before he walked through the exam room door with that look on his face... He was apparently viewing the patient info from his own computer and decided he might as well jump in. (I'm sure the fact that we were 15 minutes into his lunch hour had something to do with that.)
"Wow, how many specialties do we have here?..."He was very nice and very matter of fact about his lack of experience with diabetes in young children, (he asked if her cgms controlled her insulin/bg... don't I wish), his lack of knowledge about current JIA treatments and the meds she's been taking, and the fact that he's never had a patient with Lupus nephritis or any similar AI problem. ("I remember reading about this in medical school" was what he actually said) He was about 60% stunned and 40% intrigued by her history, but mostly he was amazed that "she looks so good" in spite of it, the same thing we've heard from every doctor since her D dx's. I personally think she's just a beautiful kid and it confuses people since "sick" and pretty don't normally go together... but whatever. ;-) Her growth is good and she is doing well overall, so my efforts in her care over the years have paid off and he was impressed.
I think he's a good pedi and he'd be OK for routine things, but he really has no idea what to do with her and I'm certain that he'll defer to her specialists for anything beyond antibiotics. Maybe a pedi with a closer practice (this was 40 minutes away) will be fine since none of them seem to have any actual experience anyhow.
He said we were better off keeping all of her specialists together in Dallas because San Antonio doesn't have anything comparable. Children's Medical Center has every specialty we need and they all share the same computer system, which means superior continuity of care. So, we will continue to travel to Dallas every 4-8 weeks for the time being. Bummer!

I keep hoping that someday I'm going to stumble upon a doctor that won't say "I've never seen/done/heard of/ managed this before". A doctor that has enough experience with complex auto-immune issues to know what to do at least half the time would be amazing, but I guess in Emma's case that's just too much too ask. As we left the office today he said "well this is going to be interesting!" ~Yep! That's my favorite thing to hear from my kid's doctor... At least she has me to manage everything, no wonder I feel so freakin' old! lol

How cute is this? My little sweetie in her school uniform. :-)

She was only there for a few weeks before we started making all the trips to see the neph, but they did an amazing job of caring for her... and accommodating me! ;-) Thank you nurse Lisa!!

More results, more questions.....

AAAAAHHHHHHHHHHHHH!!!!!!!!!


OK.... I just had to get that out of the way. I am at my wits end with all of this medical mystery crap. I'm angry and scared and totally confused by all the confusion and lack of concrete answers.
I thought that finally getting someone to SEE what I have known was happening to my baby girl would make me feel better. I actually did feel better for a minute, it was one of those "See, I'm NOT a hypersensitive, overreacting, crazy mother who always thinks her kid is sick!" moments that we all have after seeking an elusive dx's for our child. Of course that quickly faded into, "Oh my God.... I was right." :-( Then the anger started to build. The "what the hell is wrong with these stupid, arrogant doctors who refused to listen to me" type of anger~ combined with some seriously harsh feelings toward some family members who have constantly trivialized my concerns. I really wasn't sure if I wanted to climb a mountain and scream HOW DARE YOU!! to them all, or just take my little girl, crawl in a hole and cry. I guess what I'm getting at is that I don't feel better knowing I was right.

We finally have the biopsy results, here's the abbreviated version;
"The kidney biopsy shows an immune complex-mediated glomerular disease with focal-segmental sclerosis." "Immunoflorescence shows predominantly mesangial, granular staining for IgA(3-4+), IgG (3+), IgM (1+), C3 (2+)."
"There are at least 5 segmental sclerotic lesions identified."
"Numerous large electron-dense deposits are seen in mainly paramesangial location."

yada,yada,yada


What does all that mean? It means that Emma's immune system is attacking the filters in her kidneys, and filling them with not one immune complex.... but with many varieties of immune "crap". The sclerotic lesions are a sign of chronic irreversible damage and if this process continues her kidneys will eventually be destroyed.
The pathology said it looked like IgA nephropathy with FSGS (focal segmental glumerulosclerosis) OR Lupus Nephritis ~But~ the nephrologist says it's Not IgA... there are too many antibodies and anomalies... it has to be Lupus or some similar complex MCTD (mixed connective tissue disease). Because these complex immune diseases are treated by rheumatologists we have to get the final diagnosis from one of them and they will decide how to best treat her....... What?? The kidney Dr. can't treat my kid's kidney disease?? Fabulous!

We did get a Rx for ace inhibitors that will need to be compounded into a liquid form by our local pharmacist, (you should've see the look on his face when he was reading the Rx, poor new guy...). That will keep her blood pressure from rising and is supposed to help slow the protein loss in her urine. I really, really hope it helps because it has minimal side effects and should not impact her blood sugar. The next step is starting steroids and that is NOT going to be fun, but we will deal with it the best we can.

These "answers" open an entire world of new questions. The obvious questions are about her kidneys and the treatment she will need and when/ if this will eventually progress to renal failure. The nephrologist says there is no answer for that; some kids never get much worse once treatment is started, some start dialysis in a matter of weeks and need a transplant asap.
The other questions are about what else may be happening in her little body. Pediatric SLE and other mixed connective tissue diseases don't just go for the kidneys....


I'm pretty numb right now, and too busy moving to spend too much time thinking about what the future will hold. We close on our house this Friday and move into our new place 400 miles away on Monday. What a week! I'm reading endless medical journals at night searching for any studies that will help shed some light on her prognosis, so I'm totally exhausted, but I can't make myself stop. I'm also back to taking Effexor, which makes feel like an emotionless robot. I actually think being a numb, emotionless robot is about as good as it gets for the time being. ;-) I'll go back to dealing with that anger and sadness eventually, but for now they will just have to wait... right along with those elusive answers I want.

Back to Dallas........

We will leave for Dallas... again.... tomorrow. We will be meeting with Dr. Baum, Emma's nephrologist, to discuss the results of her biopsy. I already know that they found auto-immune kidney damage, but I don't have a definite answer on a diagnosis, a "stage", a prognosis or treatment options. I hope we have most of those answers after this visit.

Emma is actually doing well overall, and seems happier now than she has in months. She went through a very difficult phase when we stopped her celebrex a few months ago, she was miserable. She refused to leave my side, not even wanting to see her grandparents that she loves so dearly. It was hard on all of us, and almost killed her papa, but she's much better now and back to her happy little self.

I also saw a huge change in her personality after stopping her methotrexate about 8 weeks ago. She started singing the words to every song she heard on the radio, she's trying to read, she's fascinated with building toys and always wants to draw and color. This is not the same kid I had a few months ago, and I could not be happier with the change. :-)

Her MRI results appear to be normal, which is great news. It means that her foot swelling was almost certainly not from rheumatoid arthritis... if it had been there would be damage in the joints by now. (we will get a second opinion from the Scottish Rite docs just to be safe) Of course it also means that her kidney problems have likely been going on much longer than we realized. :-(

These are her puffy little feet last February.... OMG! I sent these pics to her rheumy and pedi since her feet were always like this at the end of the day. It had already been going on for months when I took these... that was 10 months ago....... so scary.