Clare had her GI follow-up last week. This was the first time she had seen the GI since before her eating strike almost four months earlier. After the appointment, Shawn and I were in agreement that it was time to either stop seeing a GI all together or find a new one.
On a personal level, Clare's GI is a super nice guy. Very friendly, warm, and great with the kids. I am not saying he is incompetent medically, but we have not been happy with Clare's care lately. We are very unhappy with how the GI office as a whole handled Clare's eating strike. No one ever suggested we bring her in for an actual appointment - in fact, they told us it was a pediatric issue and we needed to be seen by her pediatrician. (Which we did and even after pediatrics could find no sign of what was causing the strike, the GI office STILL did not recommend a visit to them.) Clare was initially referred for a GI consult about 18 months ago due to poor weight gain, failure to thrive, and feeding issues - so how is a prolonged eating strike not their problem? Sounds like it falls perfectly in the GI category to me. We never once spoke to the GI during the six-week eating strike (not for lack of trying on our end). We were treated callously by the nursing staff and had to fight tooth and nail to have blood work done that the GI had ordered in the first place (we just wanted it done earlier than he had intended). I was ready to consider that water under the bridge, though, since Clare's pediatrician had diagnosed reflux and Clare's eating improved dramatically.
At her follow-up, the GI glossed over the eating strike. Didn't even really seem concerned about it. We informed him Clare was now on an appetite stimulant and Prevacid. Then he tells us he doesn't think Clare even has reflux. What??!!?? He had absolutely no evidence to back this up, just something he thought. And he kept saying that reflux was just heartburn. Maybe it is, I don't know. But I have had wicked pregnancy heartburn these last few months and it is killer. If Clare does have "just heartburn," the poor thing! No wonder she was done with eating. So he instructed us to cut her Prevacid dose in half with the goal of weaning her completely off it. His reasoning was that Prevacid interferes with calcium absorption and could cause bone necrosis, so she shouldn't be on it. Now this really irked me because he obviously has no idea about the calcium issues children with WS can have. I would venture a guess that at least half of all children with WS suffer from hypercalcemia (too much calcium in their system) and are on low- or no-calcium diets. Clare has always been on the borderline of hypercalcemia, so we have never had to watch her calcium intake. I sincerely doubt that her antacid interfering with some of her calcium absorption is going to be a problem, since individuals with WS (for some reason) absorb calcium too well. Then when I got home and asked around on my WS e-mail list about Prevacid, I was pointed in the direction of articles describing a small study done in England on patients over 50 who were on Prevacid who suffered hip fractures. Clare totally fits right into that category! Furthermore, doctors disagree whether Prevacid was even the cause of increasing the risk of hip fractures in older individuals. And, if it is the cause, the solution may simply be to consume more calcium. (Thanks a million, Amy, for all your help! I am now armed and ready!)
Shawn and I were very displeased that the one treatment plan the GI wants to institute is to take Clare off her Prevacid. The one change in Clare's environment that ended her six-week eating strike. We had seen her pediatrician the week before, and he had said don't touch a thing since Clare's eating had improved. (And she weighed 18 lbs, 15 oz at the GI's office, so her weight gain is chugging along!) Shawn and I hashed it out over and over, and we both feel it is time to move on. The only medication the GI has prescribed for Clare is her Miralax for her bowel movements. And I had to ask for that medication! After watching Clare scream in pain one too many times to pass a bowel movement, I called the GI and demanded a prescription. I even knew the name of the drug because my friend Michelle's son has similar issues. We also just found out that Miralax is now sold over-the-counter, so we don't even need the prescription anymore. I know Clare has GI issues - her severe constipation and reflux are the two big medical issues we are dealing with right now, since her heart is currently stable. However, we have a handle on the constipation, can purchase the medication ourselves, and our pediatrician has been handling the reflux stuff. So why do we need a GI involved anymore? The only thing he has ever done is give us samples of Pediasure to try and recipes to fortify Clare's food. And that has been helpful, but our pediatrician (or pretty much anyone) can do the same thing. I don't mean to knock the GI over and over, but Shawn and I refuse to mess around with the one thing we feel is helping Clare eat (her Prevacid). And if we don't value the doctor's advice, why are we wasting time and money bringing Clare to see him? She has her two-year visit with the pediatrician next week, so we're going to run everything by him. If the pediatrician feels Clare does need a GI involved in her care, then we're going shopping. (Ironically, the other GI in our clinic is the wife of our current GI, so that wouldn't work too well!) We'll head down to Boston, if we have to.