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Aug 29, 2011
diana
Noonan Syndrome/Severe Reflux
Wondering if there is another parent out there that has a child with noonan syndrome and has severe reflux? My daughter is almost 4 years old with severe reflux. Possibly the 2nd Nissen has let go. Only options my GI gives me is do another nissen or put a GJ back in. Another nissen is out of the question and I feel a GJ could possibly work for her again but she was still able to reflux even with that. I have raised questions regarding checking her acid levels, looking at doing different combination of meds, running motility tests to see how her system is absorbing the Elecare formula she is on, and basically checking her whole system from top to bottom to see if we are missing anything else. I am also having issues with her gaining weight and I am aware that Noonan children have low weights, but if she is refluxing up even a small portion of her feeding she will not be able to gain weight. Her current GI doesn't think this would help her I have a feeling that it may give us some answers. I have an appointment at the end of September with another GI to get a second opinion. I was told by her genetic dr. that kids with noonan's tend to have very severe reflux and eventually she will grow out of it and I need to wait and see. I've had enough of waiting and seeing if it will get better. Does anyone have any suggestions of certain tests I should ask for to get run. Different med combinations that we could try, etc. I have been doing alot of reading and finding out that children with chromosomal amoralities respond differently to procedures, meds and nutrition than normal children. Please help, her dr.'s make me feel that I do not have a valid reason for additional testing or getting a second opinion. My gut tells me they are wrong.
Aug 29, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Hugs to you! You have a heavy load to carry. Can I ask what reflux meds she is on? Is she on any motility meds?
Aug 30, 2011
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
I may be able to connect you with a few parents of children with noonan's and reflux if you are needing more support than you able to find here. Let me know....you can email me at cristina@mothersupportnetwork.com
Aug 30, 2011
diana
She is on Prevacid solutabs 15mg twice a day. Yes I will email you to get information on other parents who have a Noonan child. So hard to find other parents who are going through similar things.
Aug 30, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
So this could be a long shot but it is something to consider. I see that your daughter is on Elecare. I dont not know if that is due to her having MSPI or for another reason. If is it due to MSPI, it is possible that the solutabs are a bad fit for her. I have seen many MSPI kids that can not tolerate the solutabs due to the trace amounts of milk in them. Some docs will say there is not enought in there to make a difference, but I have read it too many times to dismiss it. Have you every thought about trying a different PPI such as Zegerid powder packs, which are dairy free? It just might help and it certainly cant hurt. Do they have her on any kind of digestive enzymes to help with the motility?
Aug 31, 2011
diana
I have thought about the Zegerid powder packs but have never tried them with her. She has been on Elecare since she was a week old and they found out she had reflux. I have mentioned to her GI about changing formulas or trying different meds but she seems to think that will not work. That's why we are getting a second opinion next month. She is also not receiving any kind of digestive enzymes either. So frustrating because when she has had her nissens done and reflux is not an issue for her she shows strong interest in wanting to taste food and do oral stimulation. I have also read some articles about increasing water intake with a child purely on formula feeds. Something like increasing water intake to at least 6-8 ounces a day also helps with reflux but more importantly helping to flush her system of toxins, helping with secretions and mucus. Which is another issue for her that when she gets upset especially before bedtime she is refluxing all night because her esophagus does not push that stuff down through what is left of the nissen. Also in some of my findings I am reading that introducing food (blenderized) through her G-Tube helps with reflux. Something I need to talk to the GI about. Her system has been on formula for almost 4 years now and I think she would need some allergy testing to make sure I wouldn't give her something that would hurt her. In the past with a thinker formula her reflux has been better but she couldn't handle how rich it was. I guess this is something to look at down the road. Thanks for the help so nice to have someone to bounce ideas off of. Most dr.'s I deal with are baffled by her and how severe her reflux is, also the fact she has never aspirated or had any type of infections. I do believe that I am right for getting a second opinion even though two of her dr.'s (current GI and Genetics) think it would be a waste of time. Even though her speech therapist and I are doing research and finding alot of other options for testing and different things that other parents are doing. I feel it is worth looking into. I can't seem to get her current GI to understand that reflux is effecting everything from her wanting to taste food, verbalize, and on the physical therapy side with her guarding herself so much to fight the reflux is effecting muscles that allow her to stand easier or reach above her head. At times it just feels like you are in a boat in the middle of the ocean and no one is coming for you.
Sep 01, 2011
bellymom
Isabella 10/04 Severe reflux, nissen fundo, g-tube, mito disease, epilepsy, DGE, asthma, aspiration, allergic to milk and soy
We were recently diagnosed with mitochondrial disease and we sure know what its like to "somethings not right" Go with your gut as a mom and run with it. We have a nissen and are still with mickey gtube. we went through the whole g to nj to j to gj and whatever other combos there may possibly be. an impedence probe may be a first step or egd and also an emptying scan. these kids sometimes just dont have the room for a small amount of reflux for it not to cause issues. you are right on that these kids respond differently than others. go for the 2nd opinion
Check with your
doctor first!