*GI appt*

Last week Delilah was having a very hard time with taking her Previcid. She was vomiting after every dose, her fussiness was through the roof, and she had a bunch of mucus in her stools just to give you a few examples :) I am convinced that the small amount of lactose in the solutabs was the problem so I called her new GI to see what he thought. He told me to stop her Zantac (which was helping) and cut her dose of Previcid in 1/2. I was beyond frustrated with his "help" so I took her off the Previcid anyway and have just been dealing with the increased reflux and aspiration.

Well, I took Delilah into see the ped GI today (which whom I was not to happy about seeing after his advise last week). To say the least I went in prepared to fight and brought in a bunch of info I gathered from www.marci-kids.com, which is a great reflux resource. I really felt she needed a different PPI (proton pump inhibitor or for short an acid reducer) and had researched a drug called Zegerid which is not FDA approved for kids under 12 but has been studied and shown to really help. I made a VERY detailed list of everything that has happened and when (all symptoms, tests, etc). He really wanted to hear what i had to say, which I was not expecting. We talked about her history and pH probe findings. He said that the pH probe isn't that reliable because a kid without any reflux symptoms could reflux just as much and have a positive pH probe, as Delilah did. At this point I was frustrated because she has had all these tests and each dr we go see says that so and so test is not reliable in her diagnosis or treatment. Why the hell did we have all the tests done then and spend $4000 (which is our deductible amount) if none of the drs think any of the tests are "reliable"?! I kept an open mind and the appointment continued.

I explained to Dr Pohl that we have had NO luck with all her other drs and we are just frustrated with wanting answers. He was concerned about her cyaniotic apnea episodes and that they are continuing. He mentioned that he wanted to do a swallow study with a speech therapist since she hasn't had one, to see if there are any abnormalities and if she is aspirating constantly. If she is then he wants to talk about "other means" of feeding for the time being (ie feeding tube or g-tube) but he didn't say that she would necessarily need a nissen/fundo. If the swallow study is normal and she is not aspirating with every feed then he wants to scope her stomach and have pulmonolgy do a scope of her lungs and biopsy at the same time to determine the amount of damage to her lungs and esophagus. At least she wont have to be put under twice. We see a different pulmonologist next Thursday because her current one is useless. We scheduled the swallow study for 9/10.

Dr Pohl was very assuring that he wanted to do whatever needed to figure out whats going on and what will be best for her. He prescribed Zegerid (yay!) without any fight! He only put her on 20mg once a day though (I believe she will need it at least twice a day and/or 40mg) but said if i don't think its doing the job he will bump up her dose at any time i see fit. Overall I was very impressed and happy with him! Finally we have a dr who cares! Its about time! He was genuine and didn't bs me. He also mentioned he was involved in research on PPI's in children and to google his name. I did and sure enough hes pretty well known in Texas for his research on pediatric GI and meds. He did take her off of the zantac but we are continuing the QVAR (the inhaled steroid) until we see pulm next week. So all in all maybe finally after 7mo we will figure something out!