Toddler with GERD... 4 month cycles?

Joy,

 

Thank you for your response.  I explained this problem to the pediatrician, who referred us to a gastroenterologist.  The first one did an esophogram and said there was nothing wrong.    So, we went to a second Gastroenterologist who spent a long time trying to get to know my son and his patterns.  She put him on Prevacid.  When I mentioned this "cycle" the vomitting runs in, she didn't acknowledge it at all.  My son doesn't go back to see her again until Mid-March.

 

Yes, my son has Noonan Syndrome, but it is a very mild case.  Thank goodness he does not have any congential heart defects.  He is not particularly short (still on the growth curve, although in the bottom 25 percent).  He does not have other feeding problems.  And no speech problems or learning disabilities or developmental delays.

 

Nevertheless, his weight is low.  He maintained the 3rd percentile growth curve for weight until he was about 15 months old.  Then he started eating less and less until he was eating almost nothing.  He refused even foods like ice cream and pudding.  He dropped off the bottom of the growth chart for several months.  Last month, he jumped way up to the 10th percentile, which his doctor couldnt' believe.  But now, with the vomitting again, I'm afraid he'll lose any progress he might have made over the last few months.

 

Anyway, I've unloaded quite a bit on you in only my second post here.  For now my plan of action is to get him back on the Prevacid twice a day (instead of once a day) and see where we are in March.  Of course, if this is a "4 month cycle" he shouldn't have any vomitting problems again until April.  We'll see.

 

-Pam

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Dear Pam, I wanted to jump in here too. I agree with Joy that keeping track of the symptoms will help you and the doctor see the pattern to your son's symptoms. It is common for reflux symptoms to increase and decrease over time. Sometimes there is a known reason: new tooth or illness. Other times the source is unknown. I used to find that my daughter has a worsening of her symptoms after antibiotics. She benefitted from treatment with probiotics until her stomach felt better. I have heard of children having a worsening of their symptoms if the PPI was compounded and lost its strength toward the end of the bottle.

I remember calling my doctor in a panic once because my daughter's reflux seemed to be spiraling out of control. By the time I could get an appointment a week or so later, she was back to baseline. Doesn't that always happen?! The doctor did give me advice on temporarily increasing her dose during these periods and an over the counter medication to add as well.

Let me know if you need further assistance. I am here to listen! Jan

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Jan,

 

Thanks for the info.  I am keeping track of the symptoms, how often and when he vomits, foods he's eaten, etc.  I think I just need to push the issue a little harder with the Gastro.  She listens to me pretty well, so I think maybe I have not expressed this issue strongly enough.

 

I am glad to hear from someone else that the symptoms get better and worse, which sort of reinforces my findings that my son gets better and worse.  But I still feel like it is a very definite time frame, and I wonder if there is some chemical or something that takes 4 months to build up in his body and then causes the vomitting.  Or maybe that's just grasping at straws, I don't know.

 

I also worry that he's damaging his esophagus and his dental enamel (of course, he still has only baby teeth), because I have been noticing that he is sometimes swallowing back down small amounts that come up.  (Maybe this small amount of reflux is going all the time, not just during his bouts of vomitting?)  I try to give him water and brush his teeth a little.  Is there anything else I can do, or is it just silly to be overly concerned about this...?

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Dear Pam, Thank you for your message. You are doing a super job and asking excellent questions.

The cycle of his symptoms is certainly something to watch and discuss with the doctor. I am counting on you and the doctor to figure out the reason for the symptoms. I can only give you information on the ideas and theories out there...Other theories to discuss with the doctor: I have heard of a connection with GERD and seasonal allergies. Some children grow out of their dose of medication, especially with H2 blockers (pepcid, zantac).

I encourage you to locate a pediatric dentist to check his teeth. He may need to be on a regular check up schedule and receive fluoride treatments and sealants on the surfaces of his teeth. I am sorry to add more appointments to your schedule!

The pattern of reflux you are describing (sensation of food coming up the esophagus and swallowing it back down) is often referred to as Silent Reflux. This pattern causes acid exposure on the delicate lining of the esophagus and may be very painful. The good news is that most children do not have the pattern of erosion to the esophagus that is common in adults with GERD. Combined with the frequent use of a PPI medication such as Prevacid or Prilosec, the esophagus is protected from damage. Again, you and the doctor will monitor the symptoms and decide if your son is at risk for esophagitis.

I hope you will let me know if you have further questions and concerns. I hope you will let me know what you find out from the doctor too. Welcome to our support community!

Take care, Jan

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Jan,

 

Thanks for the great info.  I hadn't thought of sealants on his teeth, or fluoride treatments!  I think in another year (he'll be almost 3 then) I will start taking him to the dentist.  I think he'd be too difficult in the dentist's chair right now.  He won't even let the pediatrician look in his mouth! 

 

I'm glad I found this place.  It's good to read about others' experiences and to get such helpful info from people.  Thank you again.

 

Pam

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Dear Pam,

My dentist recommends the first dental appointment soon after the first teeth erupt. I agree that taking him to the dentist would be about as much fun as going to the doctor! My pediatric dentist has a playroom in the waiting area, movies to watch, video games to play and prizes for every step of the way. We usually leave with a bag full of stickers and prizes.

There is much that can be done to protect his teeth now so I encourage you to see a dentist soon. If you live in a rural area, it might be hard to find a pediatric dentist. If you are in a suburb/city, there should be a pediatric dentist nearly.

Jan

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Hm, I guess I didn't realize there are "pediatric" dentists who really work to make the kids feel comfortable.  I'll have a look around my area to see if I can find one.  Thanks :)
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Your son's condition probably stems from food allergies, especially milk protein.  Young children who do not have their digestive track fully developed, have a hard time breaking protein, especially from milk.  Milk has over 20 types of protein and was made for a 1200lb animal to digest it not for small humans to break it down. 

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I forgot to mention, floride for children and even for adults is toxic and should be avoided.  You should do some research on this before you consider it for your child.

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He has already been tested for food allergies... you name it and they tested him for it, I think.  That was the FIRST thing the gastroenterologist did.
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Hi SilverSagess,

 

My toddler was tested for about 100 allergies but he came out negative on every one.  He was diagnoised with ulcerative colitis (a digestive disease) at the age of 2 and the doctors were clueless on what would cause this in such a young child.  Well, as soon as we took him off cow's milk (again tested negative) he started to heal.  We gave him no phama drugs just healed him through diet. 

 

Young children, especially toddlers have many false readings on allergies test.  Many allergies can be delayed reactions, this is usually the case with milk and soy allergies.  Nuts and egg allergies are usually immediate onsets, but milk allergies can show up 4-10 days later.  This is why allergy test are useless in young children and can even be dangerous.  The best thing to test for an allergy is  a elimination diet.  Take your child off Milk, eggs, wheat, nuts, and fish for 2 weeks and see if he makes improvements. 

 

Milk has over 20 different types of protein.  A lot of Young children are allergic to the casein protien.  Do not confuse yourself with lactose intolerance.  Lactose is milk sugar not a protein.  And intolerances are not as dangerous as allergies.  Allergies will trigger a chemical called histamine which can severly damage your child's digestive tract.  It will take up to 14 days for this protein to clear your child's system and can take up to 6 weeks. 

 

Hope this helps.  Let me know if you need to talk to me or my wife privately. 

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Interesting to hear that tests were negative but your child WAS really allergic to the cow's milk.  However, I still can't say this is the problem for my child.  Since I posted my original message, he has gone for over 6 weeks without vomiting.  If this really were a milk allergy, I would think I would be seeing signs of it all of the time, not just every 4 months or so.  Know what I mean?  I'm just not sure a food allergy makes sense in his case.

 

I posted here in the hopes that maybe one other parent might have a child with a similar problem, so cyclic in nature... but so far it seems that his situation is, even for doctors, unexplainable.

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Hi Pam,

 

Are you sure it is not pharma medication that is making him vomit or temporally depressing his allergic symptoms from showing up full blown?  Pharma meds only treat the symptoms but never cure or find the root cause.  In either case, I hope your son improves.

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Dear Jack,

Please, if you could contact me I'd appreciate it.  My 2 year old daughter went in for a colonoscopy today for a possible polyp.  She has had blood in her stool with mucus for over a month but NO pain, NO other symptoms, NO fever, normal bloodwork.  The Ped GI felt it was a polyp.  I felt it was related to a milk allergy due to increased symptoms when she ingested it and the amount of blood.  Not lactose intolerant but casein intolerant was my feeling. I decide to cut back and noticed a little bit of difference. When I mentioned this, it went unnoticed, probably because the blood was still there.  She had been on soy formula as a baby and only drinks soy milk now.  But as of late her appetite picked up and she LOVES cheese and other dairy products.  After the ped GI said it was a polyp, I added some of her favorite foods back in and the blood increased.
Anyway, my poor baby was admitted to the hospital after the colonoscopy today because she was so inflamed that the procedure made her bleed a little more and he couldn't complete it. They need to observe her, and have her heal so that he can repeat both an endoscopy and colonoscopy over again to rule out ulcerative colitis (he took pics in her colon of ulcers) Right now they are running all the other tests too to rule out Crohn's and other things.

No one seems to have any info on someone having ulcerative colitis at 2 years old.  No one in my family has it although there are other issues (IBS, stomach ulcers, h. pylori, GERD) but not at age 2.

The docs are surprised and although reassuring that the steriod will reduce the inflammation and that if it is UC she can be on a lifelong dose of a sulpha med...no one seems to be EXPERIENCED in this with her young age and I still see this milk correlation.

I need someone to talk to if you or your wife would contact me. I am so sad and frightened.  I'm waiting for a biopsy result too and I'm afraid it will be something worse.  The docs shrug away when I ask if food exacerbates ulcerative colitis.  I don't want her to suffer all her life and to blow up on steroids.   I had originally expected to get the "100" alergies test (I had them as a child along with weekly allergy shots) but they didn't see it as a problem. 

Did your child seem normal in every other way?  No other symptoms too?  She's such a great little girl, I feel like I'm dying seeing her suffer through all this prep and tests and now the hospital???!! I miss her smiling face at home.  She was acting normal excecpt for the blood. 

m i sh a j bell @ comcast . net

thanks

Michele

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PS She did exhibit a milk protein allergy as a baby and well into 1 year old.  She vomited any milk in her bottle or milk based formula.  Never had bowel issues from it.

We thought she outgrew it because she didn't vomit after eating dairy after a period of time.

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Dear Michele,

I am so glad you found our community! You and your little one have gone on such a long journey together. I know almost nothing about Ulceritive Colitis but I know a bit about how the digestive system works. I also know that a mother's instincts are correct. So go with your gut and keep advocating for your daughter.

I do not know much about the specifics of treatment for UC but I imagine it is like most every other digestive disorder: a combination of medication and diet. So it is possible that the dairy products are an irritant to her digestive system or the root cause of the problem. I know you will figure this out. As a mom, I know that we have very powerful radar and we are very protective of the health and well being of our children. Be sure to do your own research on this and keep asking questions. I wonder if you could ask for a food allergy consultation while she is still in the hospital. I would ask the nurse on the floor how to arrange for another specialist to see her as an inpatient. It sounds like the gi doctor is being very careful and thorough. That means your child may not be presenting with typical symptoms or the diagnosis isn't clear.

I will email you privately right now. Please also use the private email on this site to contact me as well. And I know the community of patients and family members on this site want to know how the story ends too.

Best wishes,

Jan Gambino

 

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