Losing it!!!

[Anonymous]

Hello. I have an almost 4 mo old boy. He has always been an excellent eater until about a week ago. He has been on just about every formula and recently (sunday) we are now on Nutramigen. He is on Previcid for reflux as well. He isn’t sleeping AT ALL and now is refusing food. We (the dr. and I) thought maybe the soy (isomil) was causing him stomach discomfort which promted the switch to nutramigen. However, he is still fighting me to eat his bottle just about everytime. And if he does drink it he will usually stop at 4 oz. At one point this little guy was eating 7 oz. every 3 hours and we had to bring him down to 6 every 3 1/2 so he wasn’t over eating. I have now been referred to a GI at children’s hospital and I am anxious to see what they have to say. This is so stressfull!!! Not only do I have a 3 1/2 year old to take care of as well, my husband is in Iraq and has been since June. He hasn’t even met our newest little guy yet! Has anyone else had any similar issues with not wanting to eat suddenly??? HELP please! Thanks.

[Anonymous]

Hello and welcome.

I’ve had two reflux babies so I sure know how hard it is. And it was my second and third babies with reflux, so I know how hard it is to take care of your older child when you are so busy with your baby. And to have you dh away in Iraq. My goodness, you have your hands full. Hopefully we can all offer you some support and advice for these trying times.

To answer your question…yes I’ve had the experience of my babies suddenly not wanting to eat. My first refluxer was never treated properly and it progressed to the point that the only way I could feed her was to swaddle her tightly and then walk around the house with the bottle in her mouth. My back STILL hurts from that. She also never slept well and was basically miserable until she outgrew her reflux at around 9 months.

Fortunately with my second reflux baby I was so blessed to find this site and http://www.marci-kids.com and I made sure he was put on an adequate dose of a PPI medication. It took some work on my part….his doc prescribed Prevacid easily but at a way too low dose. Many doctors are not aware that our babies metablolize these meds 3-4 times faster than adults and so they usually need higher doses given at least twice and preferably 3 times per day. Once Myles was on an adequate dose things turned around. I cannot even describe how horrible things had become with him before Prevacid. Every feeding was an ordeal and a battle.

So, what I would suggest is that you look over the marci-kids info and if your son is not on an adequte dose (they have a dosing calculator) that you print and fax the info or take it to his doctor and see if you can persuade him to up his dose. If that doesn’t work then you may have to find another doctor. Many moms here have had to do that. I was fortunate that the marci-kids info did sway Myles’ doc, though it did take some perserverance on my part.

Good luck and glad you found us. I hope your little guy is feeling better soon.

[Anonymous]

is his prevacid dose adquate? have you seen marci-kids.com?
what form of prevacid are you using and how are you administering it? this can make a big difference.
and lastly, nutri. does have milk proteins in it which my son couldnt tolerate at all.

[Anonymous]

Hi! My heart goes out to you. I struggle every day with parenting my 3 year old and dealing with my little refluxer, but at least I have a husband who relieves me at night. You are in my prayers. I agree with the above postings. It could be that your little one has grown enough that he needs a higher dose of his prevacid. It could be too that his sudden refusal of food is because of the damage to his esophagus from the acid coming up. Maybe when he was eating so much before, he was doing it more to “kill the burn” than from hunger?? Have you tried Mylanta? Lots of moms use it before a feed to sooth the throat and to help the little ones get the food down. Mylanta Cherry Supreme seems to be the most popular. Good luck, and hang in there.

[Anonymous]

My son is getting his previcid in the form of a liquid. I have it filled at a “compounding” pharmacy where they actually make it into a liquid for us which only stays good for 2 weeks in the fridge. He is getting 2.5 mls once per day. I don’t think they show this dosing of previcid on that site. My older son also had reflux and milk protein issues. He ended up on previcid and nutramigen as well but it worked like a charm for him. Instant results. However his previcid was in a casule form and I had to break open the capsule and poor 1/2 the contents into some rice cereal and feed it to him that way. Which maybe is why it worked for him. Maybe it was a higher dose. I am not really sure. It is so nice to know I am not the only one. When you child refused his bottles did he act as though he was in pain? Hunter arches his back and screams and spits the formula out. So frustrating. What happened to my healthy happy good eater????? I am really hoping maybe the GI will figure out whether or not he has damage from the reflux and then go from there. I am also hoping they don’t take too long getting the poor guy in. Thank you for your message!

[Anonymous]

first off, i just want to say that the dosing chart on marci-kids.com is for any form of prevacid.
also, babies metabolize PPI’s much faster than adults, so its more effective to give them meds 2 or 3 times per day.
what concentration is the liquid in? and are you gettting it made with at least 16.8% sodium bicarb? either way, 2.5 ML once a day sounds terribly low, so im not surprised that your child isnt getting relief.
i would really push the doctor to read the marci-kids.com information on PPI dosing in infants.

[Anonymous]

Maybe I am reading the Marci kids dosing wrong. I see mg. not ml. I am not sure what 2.5 ml what be in mg. I asked the Dr. about the dosing at one of our last visits and she said he is getting what a 2 year old would get. But that is me just taking her word for it. I am not sure what % sodium bicarb they are putting in. This is all very new to me and really until he stopped eating I wasn’t nearly as concerned as I am now. Did your daughter see a GI? Or did your ped get you on the right track?

[Anonymous]

what concentration does the bottle say? how many mg/ML?

a 2 year old would be getting a lower dose than an infant, because infants metabolize them faster than toddlers, adults, etc.
you can see the dosing on the chart actually gets lower as they get older.

my son wasnt getting the help he needed from any doc, so i contacted marci kids directly and Dr Phillips who created zegerid called our ped. and enlightened her. she had never prescribed a PPI in her life. i now adjust my sons meds myself, as he grows and as i see the reflux flair up.

[Anonymous]

The bottle says C-Lansoprazole 3MG/ML SUSP

Is that what you were asking? I would hope the GI will be more informed that my ped. So frustrating. I guess maybe I need to do my homework more before going in.

[Anonymous]

okay so thats like 7-8 mg a day? since its 2.5 ML once a day. wow, i dont see how that could help him at all.

when my son was 4 months he was on 27 mg of prevacid a day.

[Anonymous]

No kidding??? That would make sense then wouldn’t it?! My poor baby. I don’t imagine it would be good for me to increase the dose before getting the ok from the doc huh? I am tempted….. I can’t understand why she would think what she has prescribed to him could be nearly enough then. My other son who is almost 4 years old now took 1/2 of a 15mg capsule per day. So basically the same as Hunter. But it worked for him. However I think his main issue was milk allergy, not so much reflux. Whereas this little guy must really being hurting from the reflux. So sad because he really does seem hungry until he gets the bottle in his mouth. Then he pulls away and cries like he is in pain. I am so frustrated now knowing this. I am not sure what to do….

[Anonymous]

You wouldn’t be the first mum to increase the does without getting the Drs OK . I am sure other mums will give you their experience on that and how they relayed it to their Dr.

Alana’s family Dr was kind enough to prescribe zoton (prevacid) which you can’t normally get over here, but he wanted her on a max of 15mg- really only wanted her on 7.5mg. Which is much less than marci-kids reccomend. She had already been on 10mg of losec which didn’t do to much, so I knew it may not be enough. The packets come as 30mg and I can’t “reuse” them so sometimes a little extra might enter the syringe. I mean really, who is going to count little beads and how hard is it to guestimate 1/4 or 1/2 a packet. sometimes feel a little guilty but I try to ignore myself .

[Anonymous]

Also, has the feeding got worse since you started the nutramigen- could it be a taste thing. I am going through the same thing with Alana and her pepti-junior (same type of stuff) at the moment.

[Anonymous]

Not much to add as everyone has covered things so well but God Bless your husband for serving over in Iraq – you guys will certainly be in my prayers. He is doing a great thing. How long before he is able to come home?

Robin

[Anonymous]

Just wanted to let you know that I was so worried that my doctor would refuse to up my son’s prevacid dose, so I went in with the Marci-kids website info and even some postings from here and it was pretty easy to convince her.

I hope that things get better for you soon,

Johanna

[Author]

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