Dear Sonja and others,

  First I want to apologize for not responding in such a long time.  It is wonderful to hear that some kiddo's have improved. 

  Sonja, I am with you on your struggle.  Let me tell you a little about Gavin's progress or lack of and what we are now doing.  I started the amino acid formula along with an elinamtion diet for me.  We did see improvements but not huge.  We got to a point were our GI doc said she had treated the reflux so aggressively (prevacid, zantac, carafate and ALMOST reglan) that she really felt we were dealing with allergies.  Ok, you guys knew that.  Well I finally decided to stop bf'ing and good thing.  Gav improved almost immediately, until we started solids and then we saw a huge regression again.  I have switched pediatrician's, and GI docs.  New ped is great... and new GI doc is awesome too.  She says she hears this all the time "a baby diagnosed with reflux, not responding to PPI's (prevacid) and sleep feeding."   Her first thought was the Eosinophilic Esaphogitus (sp) EE or other Eosinophilic disorders.  We see our GI at the Children's hosp in Denver, they are one or two hospitals that have pediatric Eosinophilic clinics - most other GI's are not as up to date on this disease.   It LOOKS just like REFLUx but does not respond to acid supressive therapy.  We are doing a scope next tuesday to rule in or hopbefully rule out EE and other eosinophilic conditions.  We also saw an allergist, he did skin prick testin for 17 foods and all were negative.   I feel like we're getting to the bottomw of this.. .our old GI new about EE but didn't really do more about it.     SOnja, just maybe research it.... just maybe Avin has a condition like this.. just maybe.   KEEP looking for other GI's.  One of the best is in Denver at the childrens hosp, others are in Cincinatti at their children's and the Children's hosp in phila also has great GI's ...

 I willl let you guys know how the scope goes and what they find in the biopsy.  Reflux babies have a white blood cell in the esophagus called eosinophils that SHOULD not be there.... babies with severe gerd who do not respond to therapy have many more of these Eosinophil's in the esophagus or other parts of the GI track.  Not much is knwn about the disease, it's fairly newly recognized.   I am no doctor at all.. just a struggling mommy adn I have found a GOOD GI doc who is almost certain my son has this EE - we will know for sure next week.  It is caused by allergens but they could be anything or even sensitiives to foods, and even just airborn allergens can cause it.  IT MAYBE WORTH it to travel to one of the two hospitals that have these Eosinophilc clinics.  And lots of times the triggering allergen isnt detected by normal allergy tests. 

 I don't know sonja, maybe Avin does not have this at all - but If you can get a pediatrican to refer a really good gi clinic you could get to the bottom of this.  Call them everyday and bug the hell out of them until you get the referal you want..

Some symptoms of EE:
"Symptoms vary from one individual to the next and may differ depending on age. Vomiting may occur more commonly in young children and difficulty swallowing in older individuals.

Common symptoms include:

* Reflux that does not respond to usual therapy (medicines which stop acid production in the stomach)
* Dysphagia (difficulty swallowing)
* Nausea and Vomiting
* Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite
* Abdominal or chest pain
* Feeding refusal/intolerance or poor appetite (*sleep feeding)
* Difficulty sleeping

Here is one link: http://www.apfed.org/

email me if you are interested in more info... if I am barking up the wrong tree... forget what I am saying, I won't mind.  I am just looking for answers myself.

Another disease i have heard of that kind-of presents like reflux is Mastocytosis.  But Usually not, but it is a possibility. 

YOU NEED A BETTER GI.  You seem a lot like me, not afraid to fire a doc when they aren't working.  

I'd love to talk more sometime, my email is easier... so here it is Margarit.snyder@colorado.edu

I wish everyone the best of luck and your little precious babies too.  

Best,

Maggie

Hi Sonja,

   Oh I am so happy to hear that prevacid is helping Avin and that he's gaining!!  This is wonderful news.

 I will certainly create a Thread on EE - for sure, once Gav's tests are done.  My finance and I are also starting a non profit organization... still completely in it's infancy to advocate EE and other EOS diseases that all too often go misdiagnosed as acid reflux.  We will be creating a website -- probably www.kidswitheos.org (but i will keep everyone but to date on that when it happens and the domain is ours)

 I DO NOT intend to correct you about anything but from my extensive research on EE and Eos disorders I wanted to just say something about the hematocrit testing (testing stool for blood).   The hematocrit testing test for blood in the lower GI track.  Gavin has had 10 done, all negative.  The test is just that, shows the presence of blood, which can mean a virus, bacteria, or IgE immediate Allergie, such as a milk protein allergy, sometimes when eosinophils are present in the colon there may be blood in stool, but no garuentees.  It in no way tests for EE.  EE does not cause the lower GI track to bleed in anyway, other oes disorders may or may not have blood in stool. Jus b/c it's negative does not mean an Eos disorder is not there.  The only way to test for and diagnosis EE, or rule it out is by doing an invasive, sedated Upper GI endoscopy where multiple biospies of the GI track.  

So, just keep it in the back of your head still if Avin does regress when solids are started more regularly or even as a toddler, (vomiting after eating, the poops, gaggin, refusing food after a trigger food is eaten).  EE and other EGID's (EOS disorders) usually go undiagnosed until 1.5-3 years of age.  But, as doctors are becoming more knowledgable about it, they are getting better at diagnosing it in infants.

I will let everyone know how the tests go for Gavin.  We are praying for a low number of Eosinophils....and NO EE !!!   My thoughts and prayers are with everyone.

x's and o's

maggie

Hey Sonja,

 I just re-read your previous post and your GI-doc's dictation... the idea about a sippy cup.  Have you guys started to try?  We just started doing this with Gavin, not too long ago and he really gets excited about the sippy cup!  It's wonderful to see him happy about it.  We are just using water still and are slowly slipping his formula in there - I have high hopes this will work for us too.

 :)  best of luck for you guys.

maggie

Hi Sonja,

   As for causes of EE, I've been told and researched some things.  Basically the exact cause it still unknown.  Researchers theorize several things.  One that there is a genetic predisposition along with environmental toxins that are weakening the immune system and there is also the Hygeine theory.   ( a kid born into a home that is too clean .. actually weakens the immune system??? ) - but they are just theories.

   As far as what I am told EE is caused by a weakened immune system, and it in turn causes reflux of a different origin than just normal infant reflux.  Allergies do not *cause* EE (like, if you have allergies you MUST have ee - its not like that) but rather IgE allergies and Delayed/intolerances can trigger EE, also Asthma has a link to EE and EE can also be triggered by airborn allergens, and not food in some people.   People can also have multiple food allergies, but yet only, say one or a few of those foods are the triggers to EE.  It's really very complex and I hope I am not being confusing! lol

  When a certain allergen (food, cell mediated, or airborn allergen) enters the body, the body attacks that allergen by releasing toxins (Eosinophils) that are very painful, they cause the reflux. 

There are 4 main types of Eosinophilic disorders - EE (Eosinophilic Esaphogitus) - in the esaphagus, Eosinophilic Gastritis (EG): high numbers of eosinophils in the stomach.
Eosinophilic Gastroenteritis (EGE): affects the stomach and small intestine.
Eosinophilic Colitis (EC): describes the occurrence of high numbers of eosinophils in the large intestine, Or there can be High nubers of eosinophils throughout the entire GI track.

 As far as treament, short term.  After a positive biospy for EE or another one of the EGID's, the patient, no matter the age, is put on a stict amino acid based formula, neocate or elecare, with no food for 2-3 months to allow the GI track to heal.  They are also put on aggressive doses of PPI's and other acid supressive therapies (this is usually long term treament too)   My doc said that if the Esophagus is damaged from the eosinophils already, they want anything coming up from any reflux (normal amounts of not) to be completely acid free.  After the 2-3 month healing period the Biospies/endoscopy is repeated, if the number of eosinophils have decrease to normal,  food trials may begin.  If the Eosinophils have not reduced to acceptable range, Steroids are used for a period of time to supress the Eosinophils further. 

 Once food trials begin ... it goes like this.  You try one food ONLY (along with the amino acid formula) for anywhere from 1 week to 1 month depending on doctor and circumstance, if the food has been well tolerated, you go on to another food until you reach 5 foods.  If at any time you see an adverse reaction (vomit, diarrhea, seeminglyy odd food aversions, mucusy stool (esp in infants)) that food is stopped immediately and Never tried again.  If you it make through all five foods with no adverse reactions, then the endoscopy is repeated, with a biopsy ... if the biopsy is clean - then all five foods can be kept in the diet.  If the biopsy is not clean and shows an increase count of the eosinophils, then ALL five foods are taken out of the diet and never re-introduced.   Sadly, some of those  foods may not have been the trigger, but all must be eliminated. Doctors are currently doing research to try and find better ways to do food trials.

   Some allergy testing can be done, but many times testing indicates food that are not the triggers and it has proven to be more effective doing the food trials.  Some newer allergy tests are available that may be more reliable for EE/EGID triggers.

It is a rough diagnosis.  there are kiddos out there that can only 4 foods, 12 foods, some even 20.... sadly, some of these kids slowly begin to become allergic to the previously OK foods and they too must be eliminated.  There are kids out there that MAY NOT EAT ANY foods at all except for the hypoallergenic, amino acid formula, usually by a tube in the belly to allow the amount needed. But, those are extreme cases. 

Is a scary disease that is on the rise. It in no way is a good thing to be diagnosed with it, but the earlier the diagnose can be made, the less pain and agony the child has to go through. Even if a child shows no symptoms such as vomiting or diarrhea, there insides could be burning, like reflux.  Some children (toddler ages) will sometimes show no other symptoms then seeming odd aversions to a specific food - they must know it's a trigger.  It is hard.  A person does not have to have all of the symptoms, some just have a few, and can actually have just reflux or gagging, ect.  Each person varys greatly and symptoms also vary greatly depending on what part of the GI track is effected. It'sbeen thought that in older patients w EE air born allergens are the trigger.  It's soo ocomplex. Often times older kids have rashes or hives for no apparent reason, likeI said, it's so different from person to person.

Grants have been given to Denver and Cincinnati's Children's hospitals to do research on these diseases and newer treatments are poping up everyday!  Steroids can often be used to supressed the eosinophils and sometimes foods can be eaten.  But steroids can have negative long term efffects on the body and once stopped the symptoms return. 

My theory is that as our world becomes more and more toxic, our children's immune systems are suffering and become compromised, and treat food in general as an attack.   I coukld go on, and on............ about what all is "toxic" in our world and what is compromising our children's immune systems!

xox to all!!

maggie

Sonja,

  I will def keep everyone up-to-date with what's going on with Gav.  His scope is Tuesday, we'll knw what his insides look like, but biopsies will not return until the 17th.  Even if Gav doesn not have an EGID - which is what our family is DESPERATLY praying for, my family will still advocate for these disoders.  They are extremely scary and they are on the rise.  We live in the right location where the doctors are educated about it - so, now we just have to educate the public, moms, dads, grandmas, etc about early signs that mimic allergies and reflux !!

 I do not mind if you post my previous post on the feeding forum, except for the many, many typos and spelling errors!  ( I only ever have a few minutes to do this!  _SORRY :)))

Hugs to you all and I am so glad to hear of Avin's improvements, this is wonderful!

xoxo,

maggie

Thanks for the update Maggie. I remember you mentioning "bloody diapers" in one of your earlier posts. I am glad the doctors were able to get to the root cause. Gavin will feel 100% better now that you have a diagnosis for a completely curable condition. He will outgrow it. Good luck with everything!

Ihave my second one now, he is also 4 months old, very difficult feeding too. Each feeding he only gets 2 oz, but he tolerates well with two oz( exactly 80ml, a little more than 2 oz) but for his age that is a little less than normal, but I increase the freq sothat he will get enough. Freq of 1.5 hr to 2hr either during sleep or awake. Small feeding seems to work well for him. He gains weight fine with this strategy but a lot more work for care taker, cannot send to day care.

Does the med help your daughter? There is nothing wrong with sleep feeding as long as she does not have teeth yet. When she has teeth you have to watch out for rampant caries( speaking from a dentist perspective). For my older son the med does not work very well therefore with the second one, I try not to use it at all. Remember, it will eventually be easier at some point, some can last until one year old

Let me know if you have any further question.

Dear Vy,

My son Andrew went on strike between 4 month to 8 month, meaning all his feeding pending on his sleep, I was worried because as they grow older, they sleep less, meaning less intake. One day, I still remember it vividly, it was Thanksgiving, I had guests coming over, therefore his feeding schedule was interupted, I offered the bottle, but he refused, so he went on for not having anything about 6 to 8 hrs, then I offered his bottle again this time, surprisingly,he went on and took it well. Then the next time we tried again, he took the bottle with distraction of watching baby boost program on TV. Subsequently, he still continued to take bottle awake but with distraction of toy or TV or live entertainment from his Dad.

Then when we weaned him off the bottle, that is another problem, he refused to give up the bottle. We gave him the sippy cup, but he never finished the cup. So my friend and I who have sons of the same problem,  we came up with using the medicine syrine to pump to them and make sure the cup is empty after the first few sips that he tried. Kids with GERD always need more attention and picky eater. When they start solid, they have to tried out the smooth texture first, anything with texture that they don't like they can make themselves throw up on purpose. I did not start solid for Andrew until he is 8 months, apparently, he does not like solid food either. When he passed 1 year old, they still do not enjoy table food as any other kids. They might try the food, but if they gag and throw up,they might not want that food again.

How much does Emma weight right now? Remember the less she throws up the more likely for her to take the bottle awake later. You just have to keep trying with these babies. They need more TLC . Even is she taking 2oz awake, it is still a progress. Yes my son went to GI specialist, speech therapist, but they cannot do anything for him, it just a waste of time. The GI specialist told us there is nothing wrong with his medical condition, he just had attitude, let him be hungry enough he will eat. Speech therapy told us to let him have a bottle of water instead of milk to let him relearn sucking habit.  They scheduled for us to return, but I didn't think there is anything they can do, so we did not return. My son was on breastmilk, if your daughter is on formula, you can try different formula to see if they like the taste better. My friend's son response to Similac  for sensitive  better than all, some with special enzymes as  the one you used or Enfamil Gentlase might be a little difficult to taste. ( Asian Kids also are more high maintenance than any other races)  I hope these info will help.

Hi Vy,

I read your email from the beginning you have mentioned that Emma's problem starting at two month, meaning at birth to two month she was eating okay. ( by the way, did you ever do breastmilk feeding for her). The peak for reflux starting at 6 weeks, most kids have some sorts of reflux at this peak, it is more for premie baby. As I mentioned in one of my old post, Andrew was 3 weeks early. Andrew did not have endoscopy because,it was determined that it was behavioral problem, not medical one, because he intook just fine prior to 6 week of birth, so there should not be any anatomical defect that causing the aversion. The reason Andrew has aversion, because  he threw up so often to the point that he subconsiously did not intake anymore to prevent the throwing up problem. As the matter of fact with just sleep feeding alone at 4 month Andrew was 16lbs putting him in 75  to 80%.  I know it is very frustrating doing sleep feeding, but I refused to let my child to retard growth due to aversion, I will do whatever it takes to  fight it. I used to cry if I tried so hard on sleep feeding then suddenly he coughed and threw it back out. I tried Breastmilk, all different kind of formula because at the beginning the doctor thought that the reason he got aversion to feeding because certain thing in my diet causing disagreement with the baby so they gave me the whole long list of foods not to eat, but when I look at that list, it does not make sense,  because it pretty much rules out all food. After all the trials, the final winner is breastmilk to Andrew.

When Emma is awake did you ever tried to entertain her with toys while feeding, She might pay attention to something else by distraction she will suck at the same time.

You can continue sleep feeding for now until she is about 8 month if she grows out it is great. Otherwise, as I told you earlier, I adviced  some mom with the same problem either spoon them the formula while awake or use medicine dropper or syrine so it is faster and cleaner.( Remember, syrine technique is also a learning curve for the kid, don't discourage if you are not successful the first time. It requires some practice on both sides)

After one year old for Andrew I still keep him on formula called Enfagrow made by Enfamil for children up to 36 month. Andrew is just turning to 3 y.o. not too long ago. Andrew is such a picky eater. He  is in preschool  now, but he still does not enjoy school food, some days he does not touch a single bite. We have to pack food for him to go to school, when he came back his food is empty, we were surprised because he never finishes his food at home without someone spoon fed him. It turns out he gave his food away.

I know it is frustrating but it will eventually passes. My second son came from the same gene pool, but we have experience this time, so we won't be too worried. My second one Anthony,always takes small feedings. He sometimes skip his feeding  awake. My Mom refuses to surrender. She said okay if you don' t eat now, you will eat when you sleeping. With the small feeding his vomitting is much lower unless he is fighting.

You can try solid, but remember solid is not nutritionist as formula or breastmilk. Only treat solid food as supplemental. Too much food will not leave much room for formula.

Let me know what you think

Vy

How is Emma today? Any Change? When and what trigger the feeding aversion on Emma? You have said that she arches her back "in the sudden",  can you elaborate on it. Did she arch when you attempt to feed her or while on sucking the nipple? Did her ped see she arch her back and dx her with GERD? You said she rarely spit up, this happens before or after the medication was prescribed? Do you hold her vertical after feeding 30 minute before putting her down? Does she sleep on her back on the crib or does she prefer the swing? If she has sleep feeding, how much does she take at the time? How often does she nap? Does she sleep over night yet?

Emma probably has silence reflux like Anthony, my younger one. Andrew had reflux with bad vomiting. From the day I brought Anthony home from the hospital, I already noticed he is arching his back while feeding, therefore I break his feeding into small one like 2oz at the time, I burp him at one oz then continue feeding. He does not like feeding as any other kid his age. I have enfamil gentlase available at home besides breastmilk.   Now I tried to feed him 80 cc every 1.5 - 2 hr, sometimes he fights hard and refuse feeding. Then we wait for him to falls asleep to feed the missing meal. I currently pump and bottle feed him breastmilk, I never try to have him latch on, because I work full time and I return to work  5 wk postpartum. My Mom is helping me, she does have experience with Andrew sleep feeding, so we less stress out compare with what we are going through with Andrew. I even have to hired a Nanny to help my mom out with Andrew back then because it is way to hard to do solely sleep feeding.

I am not against concentrated formula, however, there are two thingsyou should consider. One is to supplement water to prevent constipation, and inadequate water for hydration. two concentrated formula change the taste, and baby knows it. What you can do  is when you offer her bottle awake, should mix the correct concentration, so she does not hate the taste of it. If she does not take it at all then you can add more powder for sleep feeding. When she is awake, offer her the bottle of water, to reintroduce her the fun of sucking.  She might programmed herself to dislike the taste of formula, but she might take water, that is what Andrew did. You can also offer water in the dropper or spoon.

Unlike Andrew, Anthony takes some feeding awake with much effort of distraction by toys or a live person's entertainment. I know what you mean when you said seeing other kids taking the bottle out in the public and wish our kids are the same.  Believe it that what I wish, but I learn to accept each child is individual, and not the same, we took one day at the time. Even with sleep feeding solelly or partially, with my Mom's help, both kids are doing very well with their growth chart, Andrew is btw 75-90 percentile, Anthony is 90 percentile on weight and length. My Mom told me don't be sad about the feeding habit most Asian kids are picky, the pickier they are the smarter they are later(at least that how it runs in my family, no kids are easy).  I am not sure if it is true,  Andrew is quite gifted(probably in his parent 's bias oppinion) He is 3 y.o.now but in the 4 y.o preschool program, he can read pretty well and do some math, his teacher is quite impressed.  Keep that comfort thought in your mind.

Your goal now is to get some awake feeding to  Emma. But like I said if you are not successful at this month, don't be discourage,  Andrew went on strike completely for four month straight. I am not sure if I mention, I only had Andrew stayed on med for about a month or two month at the most. My husband is a family practice physician himself therefore he did not want his kid to stay on med if not too symptomatic. Andrew 's pediatrician does not believe much on the med either, but the med is prescribed from GI doctor. By the way, how did you get Emma to take her medication?

You can email me directly if you want at trieuhanh@yahoo.com. Sometimes, I could not open your email due to broken link.

Hope you have a good day with Emma today.

Hanh