Kris
welcome. it seems like your little one has gone through so much. I am sorry about the surgery and the trach. He is so young and has gone through so much and now… the evil reflux.
It sounds like reflux. First of all, don’t let doctors fool you and tell you because he had a clear Upper GI then there is nothing wrong with him, or even a swallow study. The upper GI will show whether milk is going the right way and wether there are any hernias (sometimes only) and whether food is clearing the stomach (only for a few minutes, which in itself is not relevant as some babies have slow motility and the slower emptying happens later in the meals). If they want to prove reflux they have to do a ph probe and an endo possibly. The ph probe is like an NG tube with a sensor at the end that will show the duration and incidence of reflux episodes. The endo (a tube down the esophagus and into begining of duodenum) can tell you whether there is erosion of esophagus, ulcers, EOS cells (inflammed white blood cells from food reactions for examples), any type of thursh, bacteria etc. If Aaron is not improving soo and not gaining weight, please demand these asap, before it is too late.
Matthew was a lot like Aaron. Nobody paid much attention for a few months, nobody explained to us what tests could be done etc. For maybe 2 months we sleep fed him; also he would stop at a magical 2 ounces all of the time, limiting his intake. He never really threw up until later and we still have no idea if it is behavioral or not. We did nothing until it was too late. When we tried to stop sleep feeding, he lost weight and we had to have an NG tube. He now eats very little by mouth and maybe 75% by tube? Depending on the week and we have an appointment for a gtube on the 26th.
What would i do differently?
1. research the amount of prilosec you can give. There is a website called marci-kids.com. check out the dosage there and fight with your doctors. the amount you are giving seems little (what is the concentration?)
2. start asking about the tests we discussed. See if they are willing to do them. If he is throwing up, ask for an emptying scan. This will tell you if his body is digesting food too slow
3. try to feed while awake. even small quantities. Make sure he has a good time and yuo do not force it into him. If he feels better and starts liking to feed, he may turn around on his own. Try, try please. It is important and i wish i had known.
4. what is he taking? have you considered that his reflux may be aggravated by the formula? Discuss with your ped please. Oh i see he is taking alimentum. Does he have any reactions that you can see? Is it worth a trial of neocate?? Please discuss with teh GI
5. if you cannot feed him awake, and he is not gaining… well you know about the NG tube… we wish we had it earlier. We waited until we had a full aversion adn it is going to take at least a year to get matthew off his tube now. If you can get him to gain weight, then it is fine and some people have done well with sleep feeding etc but given my own experience, the tube is a good way to get over the bump
I am sorry for the long post. I feel terrible for you and i am praying that the trach comes out soon. PUSH your doctors, go with a list of things, ask why and why not, how…
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His symptoms, only sleep feeding and taking only small amounts, are so classic of reflux. Hopefully that will improve once the Prilosec starts working.
