Wednesday, June 23, 2010

Peanut update

What a week it's been! Last Tuesday (June 15th) we finally had Sean's endo appointment. What a waste!! We saw Dr Kent Reifschneider. What an idiot! I left so frustrated and with no answers. Here's a break down of the appointment:

  • Asked why we were there. We had to tell him Sean’s history. It seemed he hadn’t looked over Sean’s chart at all. He didn’t know about any of the testing that had been done. (Ped even wrote a nice long letter to Dr R about Sean.)
  • Asked if we had seen a dietitian. We said we had but she said she couldn’t help us until Sean weaned.
  • He asked if there was a reason I let him nurse that long or if it was just my “belief“. I said that there are many benefits for a toddler so there was no reason to make him wean. He said “oh yes there is!”
  • Asked me about teeth and dismissed hormone problems b/c Sean got his first tooth at 9-10 months.
  • Asked about pooping and dismissed absorption problems b/c Sean poops fine. He didn’t ask how often or about appearance, just if I thought he was pooping fine.
  • The only family history taken was Richard’s and my height. He took them, found the average and told us that that is how tall Sean should be as an adult.
  • Asked about his drinking and eating habits but cut me off after I told him about breakfast. He says that Sean is small b/c he doesn’t get enough calories.
  • He said that if we don’t change Sean’s diet now, he’ll never meet the size he’s suppose to be. He told me many times that I needed to count his calories and it would prove that he is right. I felt he was talking down to us the whole time; like we are bad parents and it’s our fault Sean is small.
  • His suggestions were: cut out all water and only give him milk to drink…milk with coffee creamer is better. And don’t let him drink too much. The way we know how much to give him…the things to look for that would mean we’re giving him too little are signs of dehydration…he said that Sean only needs to pee twice a day and if he pees more than that, to cut back on what he’s drinking
  • I did not like the way he treated Sean. He wanted to see Sean run. He didn’t tell us this and never even told us why. Sean was sitting in my lap, crying b/c he’s shy and that’s typical at a doctor visit. Dr R was sitting in front of us in a chair with wheels. He had just finished checking Sean’s back, listening to his heart, breathing, etc. Without warning, he grabbed Sean, rolled across the room and let him go. Sean, of course came running back to me screaming and crying. He was terrified!
I did a calorie count for that day. Dr R claims he doubts Sean even gets 400 calories a day. He has 1070 that day...about a normal, maybe a little less than normal day. Dr. R said he should have 700-800 a day. AAP says 40 calories for every pound the child weighs, which would be 880 for Sean. USDA suggests 1000 calories a day for 2-3 year olds.

Wednesday I called the ped and got an appointment to talk to him the following day (Thurs). The ped (Dr Dean Cauley) is awesome! Thursday he spent 45 minutes talking to me about Dr R and what we can do now. Dr C completely agreed with me about Dr R and about his advise. He also told me that I wasn't the first to complain about him. We will be going back to the endo but not to Dr R. Sean's also going to see a GI to talk about food sensitivities. Dr C wrote a prescription for the bone age scan and Sean will also be tested for Cystic Fibrosis. There's hardly a chance that Sean has CF but it's an extremely simple test so we're doing it to rule it out.

Friday morning I got a call from Dr R. Dr C had called him and voiced my concerns! Man am I impressed. I was Dr C's last appointment the day before and Dr R called me pretty early. Dr C is on the ball! Dr R had lots of excuses, mainly that it was a long day. Not an excuse!!

Where we go from here: this week we will go for the bone appointment needed. July 13th is the CF test. July 30th is Sean's GI appointment (Dr Michael Konikoff). Oct. 7th is when Sean goes back to the endo (Dr Eric Gyuricsko)

Because I can't sit and do nothing, I'm doing calorie counts for Sean and adjusting his diet. Today is day 4 of the first set of calorie counts. I'm going to do about a week worth of calorie counts every few weeks. I'm doing a week at a time because you have to look at a toddler's diet a week at a time because it changed so much.

And just as a reference; Sean's updated growth chart:

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