CRISIS CRISIS CRISIS

[Anonymous]

HELLO EVERYONE,

THIS IS THE FIRST TIME I HAVE EVER POSTED A MESSAGE ON ANY SITE LIKE THIS, I JUST REALLY NEEDED TO TALK TO OTHER MOMS WHO KNOW WHAT I AM GOING THROUGH. I HAVE READ THROUGH SOME OF YOUR LETTERS TO EACH OTHER AND IT SOUNDS LIKE YOUR BABIES ARE IN A MORE SERIOUS CONDITION THAN MINE AS SHE WAS NOT BORN AS EARLY AS YOURS. SHE WAS 6 AND A HALF WEEKS PREMMIE AND HAS HAD REFLUX SINCE SHE WAS BORN. SHE HAS JUST TURNED 1 YEAR OLD AND I AM WONDERING WHEN THIS IS GOING TO END. AS SHE WAS PREMMIE THE DOCS WERENT TOO WORRIED ABOUT THE REFLUX TO START OFF WITH AND THEY TOLD ME THAT IT WOULD BE GONE BY 6 MONTHS, THEN 9 MONTHS AND THEN THEY SAID IT SHOULD DEFINITELY BE GONE BY THE TIME SHE TURNED 1. SHE IS CURRENTLY ON LOSEC 10MG AND MAXOLON AND THEY DONT SEEM TO BE DOING WHAT THEY ARE SUPPOSED TO BE DOING.

SHE TURNED 1 TWO WEEKS AGO AND I TOOK HER TO A PAEDIATRIC GASTROENTOROLOGIST WHO SAYS THAT SHE SHOULDNT BE STILL HAVING THE REFLUX AND WANTS TO GIVE HER AN ENDOSCOPY TO FIND OUT WHY SHE IS STILL REFLUXING AT THIS AGE. I AM ABSOLUTELY TERRIFIED AND HAVE NO ONE TO REALLY TALK TO ABOUT MY FEARS AS NO ONE ELSE IN MY FAMILY OR ANYONE ELSE I KNOW HAS EVER HAD A REFLUX BABY OR KNOWS ANYTHING ABOUT THEM. IS THIS PROCEDURE DANGEROUS FOR BABIES?? I HAVE HAD 2 ENDOSCOPIES MYSELF DUE TO STOMACH ULCERS AND THEY WERENT THAT BAD FOR ME BUT I JUST DONT WANT ANYTHING TO GO WRONG WITH MY BABY GIRL. I AM SO SO SO SCARED ABOUT THIS WHOLE PROCEDURE AND NOW THE DOCS ARE SAYING THAT THEY WANT TO DO BIOPSIES WHEN INSIDE TO SEE IF SHE IS LACTOSE INTOLERANT OR MAYBE HAS CELIAC DISEASE. PLEASE REPLY TO ME AS I REALLY NEED SOMEONE TO TALK TO ABOUT THESE ISSUES.

HELP HELP HELP

…. NAOMI

[Anonymous]

hi—-an endo with biopsies is safe, and a short procedure. my youngest daughter had one at 8 months old. i have 3 children with celiac disease. two of them had endo’s with biopsies this last year. one in october, the other in dec. i was able to stay in and watch the last endo.

[Anonymous]

My daughter had one done at 8 weeks old with no problems. It was important to access the damage and finally get some answers. Mine also is mspi so i had to fix her diet as well because it does make the reflux worse when they can’t tolerate some foods. I am being tested right now for celiac disease. I guess they do a blood test first, then if they need to, a biopsy of the small intestines. They are going to scope me and do the biopsy at the same time.

You have made it through a tough year and can get through this procedure! Seems like she is on a very low dose of ppi though? check the dosage chart at marci-kids.com My dd is 8 months and on 30 mgs of prevacid-which is very aggresive, but no pain anymore. Good luck with the procedure! I know you both will get through it! Post back on the results!

Also, Christine… if you are still posting I would love some more info on celiac since you seem to be the expert on this board! Email me!

[Anonymous]

Sorry, I don’t know much about the tests, except what I’ve read here, that most babies do just fine and it’s worth it to get some answers.

I agree that the PPI dose is probably too low. My 18 pounder is getting 10mg 3x’s per day and it has made all the difference in the world for him.

Here’s the link to check on PPI dosing. I had to show this to my doctor in order for her to raise my son’s dose to the appropriate amount. Most doctors are not aware that infants and toddlers need higher doses of these drugs than adults (!) becuase they have such fast metabolism that they eliminate the drug from their systmes 3 times faster than adults. http://www.marci-kids.com/

Reflux can be a long road, and I sure understand how you are feeling. It’s so hard to see your baby suffer and the work involved in caring for a reflux baby is so much harder than other baby care. I’ve had two, and some days I wonder how much more I can take. My son is better on meds (Thank God) but there are still challenges.

No one in my family or any of my friends had ever heard of reflux in babies either. I felt (still do sometimes) very, very alone in all of this until I found this wonderful site. I’m glad you found us, too.

Hang in there. I hope the testing goes well and gives you some answers and hopefully a higher PPI dose for your little girl.

[Anonymous]

Hi, glad you found us! I have a 15 month old that still has reflux episodes at night. He is on 30 mg of prevacid. His GI nurse told me too at his age and at the level of meds. he is on, he should not be refluxing as much as he is and the next step would be testing. I am trying to wait though because I am sure his episodes are food related. I am keeping a food dairy and trying to see if I see any pattern but I do know milk and soy are definite triggers. Have you tried to eliminate all dairy to see if that makes a difference?

Also, our GI told us they usual outgrow it around 25-27 lbs. if I remember correctly not a certain age.

[Anonymous]

Wow – I don’t know if I’ve heard that 25 to 27 pounds thing. We’re so close yet never going to get there is Owen doesn’t start eating more!! Only 10 oz to go to get to 25 pounds.

I’m just kidding (kind of) but that would be great if that’s true. I think I’m going to start feeding him as much as I can to get him to that weight!

[hellbennt]

hi & welcome!

you’ve surfed on in to an amazing resource and community!

here’s my welcome/intro that I post for all newcomers: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1

glad you found us!

~laura

[Anonymous]

Hi & Welcome

Where in Australia are you living? Sorry to hear you are having a rough time. I would definately have the procedures done so that you can get some information about what is going on. An increase in Losec would also probably help. We have just increased to 17.5mg and my son is 8.75kg. It might be a while before she grows out of the reflux but if she has allergies or celiac you need to know so you can put her on a restricted diet. Not sure why she would be on Maxolon – does she spit up a long time after eating? I didnt even know that Maxolon was approved for children. Most children with delayed gastric emptying are put on Motilium which is alot safer – I would be concerned about firstly if she really needs it and secondly if it is the safest drug – I dont mean to scare you but it might be something you can discuss with your doctor.

When are the procedures scheduled? Keep us updated on how things go.

[Anonymous]

Hi Naomi,

My son had an an endoscopy and ph probe study done at 10 months. It gave us answers to things we never would have known without hte test, for example that he has a hiatal hernia. I highly recommend going for the testing at this stage in the game with your lo.

Also, if you think things are food related, or if you suspect celiac, have you tried removing all gluten from her diet to see if that makes a difference? (If you are still bfeeding, then it would have to go out of your diet as well.) I have experimented a LOT with removing foods and found that my son does so much better without having dairy, soy and gluten. we just started the no gluten thing recently, so we haven’t yet tested for celiac or brought it up to our docs yet. Just a thought.

[Anonymous]

Hello to all the experienced users,

Can anyone please tell me how to send a private message to another user?? Am very new to the site and any help would be appreciated…

thanks

[Anonymous]

I’m not sure if you can send a private message. Some people exchange email addresses. Maybe you could post a message to the person you are interested in corresponding with and give them your email address. That’s the only way I know how to do it.

[hellbennt]

on the bottom of a post is a button ‘profile’

when you click on that button a screen pops up

scan down what comes up and look for ’email’

if a person has chosen in their profile to receive email messages, you’ll see the ’email’ button in their profile

you can use mine for example

when someone emails via this button, the sender does NOT see the actual email address of the person to whom they are emailing- a form pops up. Then, the receiver gets the email in her own email box and can decide to reply to the person (thus giving up her actual private email address)…hope this helps!

[Anonymous]

THANKS LAURA,

JUST WONDERED AS YOU SEEM TO BE THE EXPERT ON THIS SITE….. AND I WANTED TO CLARIFY WHAT YOU TOLD ME……IF I DECIDE TO CHANGE MY PROFILE AND ADD MY EMAIL ADDRESS, WILL IT THEN APPEAR AS IT DOES IN YOUR PROFILE WITH JUST A BUTTON SAYING EMAIL?? OR WILL MY ACTUAL EMAIL ADDRESS APPEAR FOR ALL TO SEE?? SORRY TO BE A BOTHER BUT AS YOU CAN SEE I AM JUST A NEWBIE AND KNOW NOTHING…..

bakakarasu2006-4-17 6:48:32

[hellbennt]

hi naomi! I believe it will just show up as a button, like mine- I guess you can try it out & see…

hey, when you type in all capitals it’s like you’re screaming, LOL (that’s Laugh Out Loud) – I don’t mind per se, but just telling you some ‘netiquette’

~laura

[Anonymous]

thanks laura for the much needed lesson in “netiquette”

only reason i decided to type in capitals was coz i couldnt be bothered capitalising the start of all the appropriate words etc….. and when i type like this it looks grammatically wrong and it annoys me…. sorry…..

but i do see your point and will try to refrain from using capitals again. i would like to apologise to all for shouting/screaming

bakakarasu2006-4-18 12:2:6

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