I am hoping someone can please help me. I have been taking my son to a pediatric gastroenterologist for 9 months or more now because he was refusing to eat and had periods of recurring vomiting (not cyclic vomiting) and very low weight. He was diagnosed with Noonan Syndrome (via genetic testing) and the Gastro put him on 30mg Prevacid for GERD. Nevertheless, the vomiting and not-eating continues. He will go for months with no vomiting, and after a while he starts to eat a little more normally. Then he goes through a period where he will vomit 1-2 times per day for about 10-14 days straight. Sometimes he vomits because he gags on food... foods that should not cause a person to gag. I have seen him gag on mashed potatoes, yogurt, oatmeal, lots of things. Other times, he vomits after he is completely finished eating. Other times, he vomits because he's crying or excited or laughing. This all goes on for a couple of weeks, then he goes again for months without problems. During the non-vomiting phase the gagging stops, for the most part. He may gag on a large piece of food that hasn't been chewed well enough, but it won't cause vomiting. He can laugh, play, cry without vomiting, etc. He gradually starts eating again after a month or so.
It doesn't seem to cause him any discomfort, surprisingly. He throws up and then goes right about his business. We don't usually have any warning or sign that he's feeling nauseous. He doesn't get upset about it or seem to be in any pain. His weight has increased since being on the Prevacid. He went from not even registering on the growth percentile charts to being at approximately the 13th percentile, so that's great. But I am concerned about the unexplained vomiting. I worry he will damage his esophagus or that the vomiting could be a sign of something else that the doctors just aren't catching. And it concerns me that he seems to NOT want to eat because he might gag or throw up. He KNOWS that it happens. He sometimes tells me, "I choke" even when he's not really gagging. So, there are already psychological effects from this recurring vomiting.
I don't know what else I can do at this point. No one seems to have any suggestions as to why this is happening or what we can do to find out what the cause might be. I think they all just want to blame it on the Noonan Syndrome and hope that he outgrows it as he gets older, but Noonan Syndrome itself doesn't cause vomiting. I want to know what is causing it and what we can do to minimize or stop it from happening.
Does anyone have any suggestions or ideas for me? I am desperate and frustrated and I hate to see my child in this state. Please help.
"Children with Noonan Syndrome may experience feeding problems from birth.
Difficulties can include:
• Projectile vomiting during or after feeding. This appears to have no definable
cause and normally resolves with time."
This seems to be a rare disorder, I believe you can find more info on some Noonan syndrome support site:
More links here:
It is not projectile vomiting, and he had no feeding problems for the first 15 months of his life. I've read all the info on Noonan Syndrome, believe me. I understand that feeding problems are common with Noonan Syndrome, but again I don't think the syndrome itself causes the vomiting. ie. babies who have problems nursing have these problems because of high arched palates or weak muscle tone, as stated as an example in the particular article you sited (which I have read before). The palate or muscle tone is what causes that problem.
As I've understood you, he was diagnosed for Noonan syndrome by genetic testing. So he has this syndrome, and vomiting may be a part of it. There may be several variations of this syndrome.
One of possibilities is hiatus hernia - loose entrance of the stomach doesn't prevent regurgitation of acid and food into esophagus. This may be diagnosed by pH measurements and manometry of esophagus, and possibly by contrast x-ray. I don't know what is apropriate for his age. All what I'm writting here is from my understanding of bowel physiology, but I have no experience with Noonan syndrome.
You don't need to worry if vomiting is connected with Noonan syndrome or not. You just need to find out which particular mechanism causes vomiting - and this may be then treated. But that article says, that vomiting eventually goes away with time. They are allergies and other diseases which go away with time. I believe other parents of kids with this disorder may give you more reliable info.
Yes, I want to know "which particular mechanism causes vomiting" as you put it. That's the thing; the Doctors are not making any suggestions as to what might cause it. They simply attribute it to Noonan Syndrome in general. That is why I posted here... in hopes of discovering possible causes... ie. the hiatal hernia you mentioned. I read a bit about early this morning and made a note of it to ask his doctor about it.
Occasional vomiting may be due to:
- hiatus hernia
BILIARY TRACT DISORDER:
- gallbladder inflammation or gallstones
- stones in biliary tract
- biliary dyskinesia or sphincter of Odi dysfunction
- all above may cause biliary reflux
- intususception - would probably go with pain and mucus in the stool...or
...other blockage from intestinal stenosis, adhesions.
- Ogilvie's syndrome
You've said it's not cyclic vomiting, well...
If the boy looks healthy, has no diarhea (diarrhea), pale or grey stools, I'd say the problem is within the stomach or biliary system. Most of possible causes are hard to detect with classical imaging (x-ray, CT), so contrast imaging and functional tests are needed (gastric emptying test, gallbladder function test - HIDA scan etc).
Thank you Boron! These are very helpful. The biliary disorders seem to make sense... and the gastroparesis. At least this gives me a few things to research and discuss with the doctor. Thank you again.
My son has the same symptoms as well, he's now 2 and a half and has been doing this since he was about 9 months. Doctor doesn't seem to concerned however I am now ready to schedule an appointment and discuss what I've researched. I was wondering if either of you have come up with anything, with or without your pediatricians. Thanks. Jessica
Until you find out what is causing this, you can give him Coke syrup.
It is labeled under "Anti-Nausea Liquid" at Longs pharmacy. I haven't found it anywhere else. Theirs is pure coke syrup.
Our local McDonalds also sells it to us. Just the syrup not the fizz!
A tablespoon stops vomiting and nausea. We have used it for three generations.
[also---if he drinks hot water, this relaxes the muscle that contracts while vomiting. So you can't vomit. when my child had the flu, he couldn't eat even afterwards. the doc said that muscle was on the fritz. So with each meal, he drank hot water, and voila! No more vomiting!
My grandson has the same problem he just turned 2 and it has been going on for months. It is not associated with any foods, it is very random, he can go for a couple of weeks with no problem and then will vomit at least twice a week for several weeks. No warning before and as if nothing happened afterI was told about a muscle unsure where it is located, that can cause this problem mainly in first born males, has anyone heard of anything like that.
On the off chance that anyone else gets around to reading this OLD post I made, I thought I would update everyone. My son's vomiting, although NOT a typical manifestation of his condition, turned out to be from a Chiari Malformation. I pushed his doctors to test for this, as some of the other symptoms of Chiari made sense to me. I talked to another mother of a Noonan child who said her daughter had a Chiari Malformation, as well. The doctor's did a neurological exam (testing reflexes, watching my son walk, flexing his feet, etc) and still weren't convince that Chiari was a possibility, but agreed to order an MRI. Sure enough. His cerebellar tonsils were herniated about 10mm (I think this was the measurement...?) The neurologist still didn't seem to think this would warrant surgery, but the neurosurgeon looked at it and recommended surgery. I had about 24 hours notice before the surgery (even though it was not an emergency surgery). Less than 24 hours actually. I was scary, but my son's condition has improved since then. He has not vomitted since the end of June 2008. WOOHOO.
I hope this might help someone else who is experiencing similar, unexplained problems. Also, I wanted to people to know that doctor's can "miss" a diagnosis just because the symptoms don't fit exactly. My son is proof of that. No one knows your child better than you do and no one will advocate for your child's health better than you!
Thank God you found your answer due to your preserverance!! Although I am sorry for the answer you have found. I was just about to post and decided to anyway for all the other readers, your example here proves my point. When you have a child demonstrating criteria for Failure to Thrive, though docs probably did not tell you that is what it was, you must proceed to specializing Pediatric Hospitals and demand they are admitting with a multidisciplinary team approach for a diagnosis and do not leave until you get one. The doctor your son was seeing was irresponsible in not insisting that this this was over his head and referring you on to a another specialist!! A percentile of off the charts? He should have not left the BEST Peds Center Hospital nearest to you until an answer was found. Children and adults alike die from failure to thrive!! As far as I can tell from your first post he basically said, I don't know, nothing more I can do, now take him home, do the best you can and best wishes, thanks doc.! I would ask for copy of chart, by law they have to release there notes to you in a state by state law time frame, and look for things in his notes like Failure to Thrive. I would actually consult an attorney and have them request his file for review. As a nurse I am not an advocate of law suits, however when a doctor demonstrates incompetence and could have cost your son his life in the process, I feel you owe it to the other pts he sees to pursue this. My childrens Pediatrician is currently in prison for child molestatio and over 120 counts of drug charges. We put to much faith in these doctors and too often don't follow up early enough to stop their God complex from harming their other pts. God bless you and your son, prayers are with you.
I was reading your posts and felt your pain and concern. I am happy that your son is doing so much better!!!!! It is hard for us as parents to stand by and feel so helplesss when we cannot take away there pain or now exactly what is going on. You did the right thing about pushing the doctor for further testing. I applaud you!
Just because your ped doctor said he had one thing does not mean it ends there and we suck it up and let the treatments begin. I have been through this with my son when he was 15.....diagnosed and treated for Crohn's.....6 months later nothing changed, vomiting, no growing properly and feeling totally depressed. I decided to take him for a 2nd opinion....only to find out he didn't have Crohn's..he had GIST, which is a rare type form of cancer when found in children. he is know 27yrs old, and doing fine. I ask myself each day what I would have done if I had't gone to a different doctor. Needless to say, my son's doctor who misdiagnosed him is no longer in practice....go figure. It was hell to watch him suffer..
My liitle 3 and a half year old foster son came to me at 8mths old , failure to thrive and about a minute away from going into the hospital. He has alewyas gagged and vomited, refused to eat food. He is on pediasure still in a bottle, unable to transition to even sippy cup. He has been diagnosed as autistic over a year ago. He also has anxiety, ocd, probably fetal alcohol effects, developmental delays.He vomits daily , I struggle all day to keep weight on Him. He had every test possible. Its all behavioural. His mother gave him salso and nachos to make him thirsty so hed breast feed. The drs told her to put him on formula because his weight was so low. But she wouldnt. They think he has developed this gag mech becasue of the chips etc. And now its become a learned thing and he uses it to control everything. He gagged on the easter bunny cause he didnt want to sit on him! He doesnt transition well, and if we go anywhere(eg zoo) he is out of wack for days after. Currently hes starving himself by refusing to swallow the bottle and instead bites on the nipple. The only thing we can feed him is smart yogurt banana flavout and he gags on evry other spoonful. The develop. ped. thinks hes missing the connection to the brain to tell him hes hungry or thirsty, plus he has sensory integration disorder. This has been so stressful the last 3 years..... thanks for reading!
All of these post have helped me tremendously. My son has similar symptoms to everyones post. He is 18 months old and for the past 5 months has been gagging excessively in which leads to vomiting. After the 3rd time of this occurrence I immediately started going to the doctors. He has had Upper GI test, xrays and even his adenoids (adenoids) removed. His adenoids (adenoids) where blocking 80% of his nasal air way. The surgeon and my pediatrician where hoping this was the cause of these episodes. But the day after the surgery, the symptoms started right back up again. They have prescribed him Previcid ( Which has not changed a thing) and now is going to a Lower GI specialist. I'm hoping that I will find some sort of answer to what is causing these episodes.
What happens during the episodes:
It could be me cooking in the kitchen, opening and closing of a garbage or even just walking into a room. He will usually start to gag and then will continue to gag where he will then vomit. After a episode he will be upset for a few min and then will just start to play and run around like everything is normal. The weird part is, is that its not just smell, he will gag sometimes in the bath tub. That is what throws me and my husband off. Its not just one thing in particular. its a bunch of different things
Please help me if you have something just as similar. Thanks
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