We finally had our Gi appointment today and I have mixed feelings. Thankfully he was a nice guy, though the clinic itself left some to be desired. (After waiting over an hour to even see the nurse, when I commented to the nurse about it, she said “I wouldn’t complain, you better get used to waiting 2-3 hrs when you come.”)
The doc told us that it seems like Hailey has really has reflux and feeding issues from the getgo that just spiraled out of control, and have created a viscious cycle. He said that he’s not sure at this point how much of the feeding problems or behavioural problems are due to reflux and how much are learned behaviours. He suggested an infant psychologist to show some practical points how to help Hailey eat (great!!???). He also said that she really shouldn’t be in pain anymore, though it’s possible, and her Sandifer’s might even be a learned behaviour every time she refluxes even though it’s not hurting her. I’m not too sure about that one.
The good news is that he does want to scope. The bad news is that our appointment is not for another 3 months (I can’t stand this anymore). After that he’ll see us again and we’ll discuss options. If the scope is negative then we’ll discuss doing a probe. He won’t do one now, b/c he doesn’t see how it’s going to change the course of her treatment at all other than to grade the acidity/severity of the reflux. Even then he wants to do a probe ON the prevacid to see if it’s giving her relief. I don’t quite know what to say anymore. If the tests are negative, then he’ll book us to see a feeding psycholgist… so by my calculations she should have all the testing done and someone might actually help us by the time she’s 18 months or so. He also said that if she had a hiatal hernia (which was a concern of mine) then it would have shown up on the upper gi she had done at 8 weeks. He also said that if she’s MSPI he doesn’t even really know what we’d do about it because there’s no way that a kid with a feeding aversion as bad as Hailey’s will drink and elemental formula.
The only upside is that I told the doctor that “she’s been on 30 mg of prevacid for the past 2 weeks without improvement”. This is true, but I upped it to that dose myself, but I didn’t tell him that so he gave us a script for the 30mg dose. Otherwise he wouldn’t have upped her dose.
He also sent us for another metabolic workup and a blood series which we had done today. Poor Hailey was so dehydrated after not having eaten anything for 12 hours that it took 10 minutes to find a vein in her hand, and then literally 15 minutes to extract the blood while they continuously pumped her arm and squeezed the site to get it out drop by drop. When I told them that i’d rather come back after I fed her because I thought that it was cruel what they were doing to my child, they asked me if I wanted to leave the room. There’s no way I was leaving her there.
He also said that he doesn’t think that Hailey’s going to magically outgrow her reflux. He said that she’ll probably have it until she’s around 2 years old or so- assuming it’s not from MSPI or something else- and that the feeding problems, even when they get corrected which will not be for over a year- will always persist throughout her childhood. He said that he doesn’t think that the feeding problems are due to the reflux anymore, even though they may have started that way- that they’re now a learned problem and the best we’ll likely ever have is an extremely fussy eater on our hands. Great….
Well he was super nice, I couldn’t have asked for more in that regard, but I’m just so discouraged by having to wait so long to get things done- 3 months to get the appointment, 3 months for the test, another few months I’m sure to see him again to discuss the test, another few months to schedule the probe… etc etc. It just seems like everyone else gets their answers so much more quickly. I don’t know what else I can do anymore.
Sorry for the ramble. Thanks if you made it this far.
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