Friday, December 29, 2006

THOSE Parents

Yesterday Shawn and I were the parents from hell. To the doctors, at least! We were THOSE parents - pushy, nagging, persistent, wouldn't take "no" for an answer.

After we got home from Clare's appointment yesterday, Shawn and I just weren't satisfied with the non-answers we received. Clare's eating strike started about a week after we switched her to the high-calorie, high-calcium fortified milk and a daily multivitamin. All of a sudden, she is getting 40-60% more calcium a day plus Vitamin D, which we have always limited due to the fact that many children with WS are prone to hypercalcemia (a build-up of calcium in the system - for some reason, children with WS have difficulty processing calcium and Vitamin D aids in calcium absorption). Clare's calcium levels have always been on the border between the high end of normal and low end of abnormal. Yet every time her levels are tested, the numbers are a tad bit higher. Could this sudden explosion in calcium have pushed her over that "normal" edge? Hypercalcemia can lead to very serious consequences. One of my WS-mommy friends, Amy, spent three weeks in the hospital last year with her daughter (who is only a month older than Clare) due to hypercalcemia. Avery presented with symptoms similar to the flu or a cold, and it was not until she went into kidney failure that the doctors finally figured out Avery had severe hypercalcemia, not just a cold. When Amy read my post and called me about Clare, Shawn and I knew we needed to pursue this further. I looked up hypercalcemia online and Clare's symptoms fit - poor appetite, excessive thirst, frequent urination, lethargy, weakness, irritability, abdominal pain.

Checking for hypercalcemia and kidney failure is as simple as a blood test. In fact, Clare's GI was ordering a multitude of tests for Clare in a few weeks. We were just waiting for her appointment with the endocrinologist and for his tests, so Clare would only have to undergo one needle stick. Now, however, two needle sticks were the least of our concerns. We just wanted to have Clare tested ASAP. That proved not to be as easy it sounds, though. Shawn initially called Clare's GI in the morning to see about moving up the tests to that day. He asked that she specifically be tested for her calcium, creatinine, and iron levels as well as kidney function. After relaying this to the receptionist, you wait for the call-back from the nurse, who then goes over the exact same information. Then you wait for another call-back from the nurse after she relays the info to the doctor. Hours after Shawn talked to the nurse for the first time, we were still waiting for the call saying the blood work was ordered, and we could take Clare to the lab. It was now close to 4pm, and we were originally told the doctor was leaving at 4pm, so Shawn called the office. After much discussion with the nurse (who was becoming less and less pleasant with each phone call), she finally said that the GI would order the blood work, but he would not be back into the office until Tuesday to read the results. The nurse did not display an ounce of concern that, in the meantime, if Clare did indeed have severe hypercalcemia that she could go into renal failure by the time the doctor got back into the office. Shawn asked if another doctor could read the tests for us. The nurse said she would check with the GI and go ahead and order the blood work. Shawn then called Clare's endocrinologist to see if he could read the results of the blood work - he said either he or the other endo could definitely read the results. (And God bless the receptionist at the endo's office - she was the first person who expressed even some concern over the words "possible kidney failure.") So Shawn and Clare headed over to the lab to get her blood drawn.

While they were gone, the nurse from the GI's office called back and said that the GI would not order the blood work if another doctor was going to read the results. I told her that Clare's endo already agreed to read the results. She said that was not going to work and the blood work would not be ordered. When I told her that Shawn and Clare were already at the clinic to get her blood drawn, the nurse became extremely snippy and started laying into me how she never said the blood work was even ordered so why we would go to the clinic. At this point, I was just so fed up with her attitude that I hung up on her. I then called Clare's endo back to see if he could order the blood work. He was very polite and kind, but said without examining Clare, he could not order the blood work, especially since it was Clare's GI who initially was going to order the blood work and the pediatrician who last saw Clare. Since it had been three months since Clare had last seen her endo, I tried very hard to be understanding about his dilemma. He suggested we talk to Clare's pediatrician. Easier said than done, since Clare's pediatrician was out with a broken foot.

I was able to get in touch with Shawn at the clinic (where he had already learned that no blood work had been ordered). Thank goodness Shawn is a man who knows when to not take "no" for an answer! He went right over to the GI's office (which is next to the pediatrician's) and had all three secretaries working to get the blood work ordered from some doctor or another. Finally, the pediatrician who saw Clare a couple days ago said she would order the tests along with a urine culture. Shawn was able to get the lab to put a STAT on the tests, and we would have the results from Clare's blood work in 2 hours and the urine culture in 48 hours (takes a little longer to grow the culture). Poor Clare had to endure both the blood draw and a catheter to collect her urine. And poor Shawn had to be there with her.

We did get the results of Clare's blood work last night from the pediatrician (who turned out to be very nice and understanding on the phone about our pushiness - we should have just requested all these tests when we were in her office two days ago). Everything came back negative and all her levels were normal. To be on the safe side, the endocrinologist is going to review the results as well (since hypercalcemia would be in his ballpark). We're still waiting for the results from the urine culture, but I expect it to be negative as well. I am so relieved that it is not hypercalcemia or kidney failure. The worst case scenario is not a possibility anymore. We still have no explanation for Clare's eating strike and prolonged sleeping (which continues on Day 11), but at least we know what's NOT causing it.

To wrap this long post up, I have to admit I was very disappointed with the response we received from the GI's office. I can understand the endocrinologist because we dragged him into this, and he had no idea what was going on. I can (kind of) understand the pediatrician because she is not familiar with Clare or her history, plus she is taking care of her own patients while covering for Clare's pediatrician, so I am sure she was super busy during this holiday week. It is Clare's GI, and especially his nurse, that I was upset with. Not knowing how much communication actually went on between the GI and nurse, I cannot say how involved the GI was or not. Who knows when he got the initial message about pushing up the blood work. Who knows if our concerns were relayed to him. But I cannot believe how the nurse treated us. (And, yes, I DO remember your name, lady.) Like we were paranoid, obnoxious parents worried over nothing. Given Clare's long, complicated medical history, her ongoing treatments, her multiple systems involved, this is the first time we have EVER asked for something of the doctor's. And to have to spend the day jumping through hoops (and crying, on my part!) to get simple blood work ordered is ridiculous. I just thank God that we were wrong, and Clare does not have hypercalcemia. But it does make me question how reliable some of her doctors may be (and I leave her cardiologist out of this completely because she has always been someone we could trust and rely on) in a serious circumstance and when push comes to shove.

8 comments:

Auntie Becky said...

Wow what an aweful day! I'm sorry to hear all you went through, but Thankfully it all came out negative! I don't think you can ever be too pushy when you are concerned about your child. It's so nice that you are in touch with a wonderful group of WS mommies! You all are special people. Love ya guys.
Becky

Lisa R said...

I am begining to think that most doctors suck...AStleast you did not get fired by anyone :) I am glad Clare is not hypercalcimic...I hope you find out what is wrong...Sorry you had a rough day.

Kerry said...

UNBELIEVEABLE!!!! Your experience was completely avoidable. I am sick to death of the God-like attitude some of the medical field people have. I am so glad you stuck to your guns and got what you needed. I hope she just has a bug or something... when you get a virus or something you usually just want to sleep and not eat. Here's crossing my fingers....

Katherine said...

GOOD FOR YOU, Teresa & Shawn! You ABSOLUTELY did the right thing - putting your child first and I am flabberghated at the ridiculousness you had to endure to simply take care of your child. Unbelievable! Thankfully (and I've said this 100 times before) God knew EXACTLY who He was choosing to be Clare's parents and knew that when push comes to shove you will always push AND shove (politely or not) to care for her. Continue to be THOSE parents. I'm glad she's not hypercalcimic but I wish they could figure out some reason for her eating strike, etc. Thinking of you always!!!

Katherine said...

...bummer there's not an edit button... flabbergasted...! (Where did that "h" come from?? Can you tell I was upset while writing!!)

Aunt Joan said...

Teresa & Shawn - Always remember who is paying who, and NEVER resort to backing down when your gut feeling isn't what anyone else's is. (did all that make sense??) They are the "pros", but noone knows their child like the parent. I just hope that 'nurse' never has to feel as worried as you two have. I thank God Clare was not in real danger, but I also thank you for finding that out sooner rather than later. May the days ahead be smoother, and Clare has her appitite back soon. I wonder about the fortifide milk filling her up too much?? Love to all four (5) of you, Joan

Nancy said...

I feel guilty even mentioning the world "Williams" because I am always brushed off or feel like they think I am being paranoid. I truly think they don't know much about it.

I'm so sorry you went through this, and I am so happy her levels look good so far.

P.S. Daddies are good at comforting kids during needle sticks. I can hardly stand it and fight not to cry along with Erik.

Nicole said...

Dear Shawn and Teresa,

I am so sorry you had to go through that. You are both such wonderful parents and advocates for Clare. Good for you for being "those" parents.

FYI - I KNOW that Emerson is greatly affected by calcium in her system. I have been incredibly frustrated because her labs have never supported what I see in her behavior. Her blood calcium levels always come back high normal to just slightly elevated. Her GI doc tells me that when I see behavioral changes in her they must not be related to the increase in calcium in her diet because her labs look fine. The changes that I see in her occur about 5 days after I increase her calcium and they are increased fussiness, decreased appetite (pushing away her bottle), stomach cramping, hands tightly clenched across her stomach. I always follow my gut and cut back a bit on her regular formula, increase her Calcilo and she becomes happy again. Her labs are always good and her kidneys look great, but I believe something in her system cannot tolerate the extra calcium. Just thought I would share...