Still throwing up

It's been a while since I've posted. My son is an ex 23 weeker born 3/30/10. He has been diagnosed with CP. He is fed threw a GJ tube because he has extreme food aversion due to his first pediatrician failing to diagnose his reflux on time. To make a long story short we've tried different things and procedures to see why he is throwing up. We've done scopes, blood tests for allergies, tried different formulas, etc. We started with the g-tube but he threw up all of his feeds so he hardly gained weight. So we decided to try the GJ tube and see if the reflux was causing him to have chronic congestion and throwing up. Well he is still throwing up mucus and stomach acid. We just had blood tests done to see if he has allergies. They came back negative. I don't know what to do. He throws up mainly during the night and in the morning. He is taking Prevacid for his reflux and an allergy medicine to hopefully help with the congestion. Which he's ok during the day with the congestion it's mainly at night! He sleeps on a wedge so he's elevated. I've tried taking the wedge and having him sleep flat but that seemed to make it worse. Does anyone have any ideas??

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Will keep you barba in prayers! Have faith that it will all be cleared so you know what step to take. I had a 26weeker and she was diagnosed with bile pretty late. She is no more. She used to vommit green staff n doc took time to take the next step. Which caused her intestines not to be vilable

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First, have the doctors considered the possibility that your son's food aversion is a result of his CP rather than, or in addition to, his reflux? Difficulties with coordination and motor skills associated with CP commonly cause difficulties with chewing and swallowing, leading to a food aversion. Above all, if not already doing so, I would suggest working with a speech therapist, occupational therapist, and physical therapist in regards to feeding. The earlier feeding issues are addressed and oral feeding re-introduced, the better. Have the doctors tested to make sure that your son is not experiencing GERD because of the combination of reflux and CP? If this were the case, it could cause respiratory issues and further food aversion because of acid damage to the esophagus. Does your pediatrician, and all of your other doctors for that matter, have experience with preemies and CP? If not, I would find one that do.

That being said, my son's (24 weeker) reflux stopped for the most part when he was he was finally able to take the majority of his food by mouth during the day. He developed a severe food aversion because of reflux and (mostly) because of the increased labor associated with "suck, swallow, breath" as result of having a trach. He refused to take a bottle anymore from about 6 months adjusted and had to be fed completely by tube until recently. Again, your pediatrician should have you working with a speech therapist and a GI or going to a feeding clinic to re-introduce him to eating by mouth and monitor his nutrition. Once successful with some oral feeding, you can begin to reduce the amount of fluids he must take by tube, which will reduce reflux. Reflux eases when baby eats orally, triggering the digestion process as he chews, and giving him more control and a more natural feeding speed. It has been a slow process for us and still ongoing, but we are getting him there and it is making a huge difference with his reflux.

Also, from what I have been told by my son's doctors, blood tests to determine a milk allergy are very inaccurate. Most babies that are truly allergic to milk protein are also allergic to soy, so, if you have not already done so, trying a formula with no milk or soy such as Noecate is the only way to determine if there is an allergy.

My only other advice would be to adjust the speed and/or times that your son is being fed by tube. When, what volume, and what rate is he being fed? If he does better during the day, try increasing the volume of his day feeds and reducing the volume of his night and early morning feeds. Just so he gets his required daily fluid intake total, you can break it up however it works best for him. When my son does not take his required fluids during the day (by straw training cup with the help of his speech therapist), he does better reflux-wise when he is bolus fed (broken up into 2 or 3 segments with 10 -15 breaks between) rather by pump. This more closely mimics the feeling of eating by mouth than a consistent speed over an extended period.

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First off re: kj8, my understanding, is that a GJ a quite different from a G-tube in that it empties straight into the intestine so no formula goes into the stomach. Thus, 1) you can't do large bolus feeds because the intestine is smaller and 2) people don't experience fullness like they would if they were eating typically. So, we'll assume the tube is in the right place because her son is not throwing up food.
Now, as to the throwing up of mucus or stomach acids... Is he throwing up related to reflux? Are there other ant-acids that could be trialed either along WITH the Prevacid or maybe just something different? What if the throwing up is related to secretions (oral/respiratory) pooling during the night when he is relaxed and not clearing his airway like during the day? Perhaps they pool and then gag him and that causes the vomit? Does his breathing (in the evening/night) ever sound rattling or coarse?
If all of this is related to, what sounds like, a motility disorder... it's also possible the oral/lung secretions he swallows are just sitting in his stomach and not passing. That could certainly build up over time and cause nausea. I would also start asking more questions about what they intend to do about the motility concern you already have... that his stomach was not emptying thus he needed the GJ tube.
I have been told there are a handful of Children's Hospitals in the US that do true motility testing of the gut. I have also been told it is less invasive when a child already has a Gtube. I believe it's called Manometry... I know Boston Children's Hospital does it as well as the Clevland Clinic (I believe).
http://www.childrenshospital.org/clinicalservices/Site2002/mainpageS2002P27 .html
There may be a hospital closer to you that does this testing but at this point it could be useful looking to the future. Especially if you think you child could possibly eat by mouth some day. I have heard (from our therapists) that sometimes they are using other meds that effect the nerves that innervate the GI tract to help with motility issues.
I guess my point is.. if your docs are not giving you answers... you need to keep pushing and searching and then make sure you have real experts in this issue. Best wishes. It's so frustrating and you must remember that sometimes doctors don't know what they don't know. Sometimes when you find the RIGHT doctor suddenly the approach can be very different.
Good luck!

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We have g tube here so it's a little different. We finally had to go the natural route to heal our reflux. Traditional testing for allergies does not always reveal accurate results. We have used NAET testing and the gaps diet. I blenderize real organic food to put in her tummy. This has made a world of difference.

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My girl has severe reflux and food aversion. She is 10.5 months (8 adjusted), a 29 weeker with severe IUGR born at 1 lb 10 oz. She had to get her ng tube back after a couple of weeks of screaming when she got a bottle and not gaining much weight. She actually aspirated twice around 5 months adjusted (1 month after coming home from the NICU). After having to do CPR for the second time, our cardiologist (she has a heart defect VSD that is fixing itself!) strongly suggested a g tube and nissen with fundoplaction (I think that's the word). They did surgery and detached her stomach from one place and wrapped it around her esophagus. This has fixed the vomiting. We were feeding 30 cc mixed with 1 tablespoon of rice cereal to thicken because her swallow isn't mature yet either to go along with the g tube feedings. She was doing great at it until a cold a few weeks ago. Trying to get back into it but I think she is bored with the bottle now. We see Occupational therapists once a month to help us along. The nissen changed our lives for the better. Good luck!

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