AT my wits end!!!!!

[Anonymous]

All of the sudden Jack is now refusing his bottles and most of the time his solids as well!!!!!!!!!!! Everytime I try to feed him I feel like crying because he just won’t eat!!!! AT this moment it’s 9:40 am and he’s only had 2 ozs since 11:30 last night and that was 2 ozs. He was doing better- he was taking 5 ozs every 3 hours and eating avacado’s, pears and sweet potatoes like a champ. This all started over the weekend and I’m at a loss, I even got a new compounded prescription because Ithought maybe the old one was bad. I called our ped and she see’s us tomorrow but all she said was “I’ll rack my brain” and “If he hasn’t lost any weight than that will by us some time”. TIME FOR WHAT!!!!!!!!!!!!! My son to starve!!!!!!!!!!!!!! I can’t get off this freakin island til the middle of March than I have to go through getting a referal and the ped GI’s at Yale(only place that takes in insur.) is already booking in to May!!!

Sorry this is so long but I’m really at the end of my rope and I feel totally hopelss. At the moment Jack is on 4ml of prevacid a day so a total of 12 mgs.

Cris

[Anonymous]

Cris, I’m so sorry that you are going through this. We are going through the same thing with Hailey. Is it possible that he needs his prevacid increased? How much does he weigh? Where are you guys located? I too have heard the “if she’s not losing weight then it’s fine” routine, and now we’re in such a mess that all I can say is don’t accept that for an answer. I’d guess that maybe his dose is too low. Also, does he take the prevacid all in one dose? I know it’s better to give more than one dose, but his is so low that if you’re splitting it then there might not be enough buffer per dose to protect the drug. Good luck. I hope things turn around soon.

[Anonymous]

The dr. prescribed him 2.5ml( compounded at 3mg/ml) I have him upped to 4.0ml in the morning. He has been on a roller coaster ride but NEVER like this- He flat out refuses to eat even solids which he used to love!! He is just so Blah- not smiling or laughing he just is kind of there. I feel HORRIBLE !!!

We are in Guam and I’ll be back in CT by the begining of April.

Cris

[Anonymous]

Cris, his dose seems quite low. How much does he weigh? Would the docs be willing to increase his dose at all? Also, I recently found out that adding either simple/sweet syrup or stevia powder will cause the med to become unstable in a few days (according to Dr. Phillips) even if the suspension is otherwise unflavoured. Maybe this has something to do with things. Hope he is doing better soon.

[Anonymous]

Cris,

We went to Yale and about a year ago got a letter that they were no longer taking patients and that was after they had already seen us. Most of the doctors left. Not sure if that has changed, but Dr. Sandra Escalera that was there and I think she takes the same insurance that she did when she was at the hospital. She is now in North Haven and we LOVE her. We only go when there is an issue which hasn’t been for a long while, but she is tops in my book! She is no nonsense and really wants to see the babies feel better. She is a mom herself so she really gets it.

Let me know if you would like her contact information. If I were you I would try to get an appt on the calendar now no matter who it’s with so you don’t have to wait until you return to make the appt. There is a long waiting list sometimes.

I am sorry you are going through this. Glad you are returning to CT but will warn you it is darn cold here now!

Let me know if I can help with contact info, etc…with any CT information.

Ann Marie

[Anonymous]

I read your other post about PPI and H2 blocker. Emma is on Zegerid and was on Zantac to full time. We took her off Zantac and only give it to her if I feel like she needs it. But she is also on the proper dosage of Zegerid so that helps alot. I am sorry that you are going through this. Have you been to http://www.marci-kids.com? This website has a lot of good info regarding acids meds. What I did was print the info regarding the proper dosage according to Dr Phillips who is a Pharm.D and is the maker of Zegerid and took it to Emma’s GI. You can also email him and Joel (Refluxsol) and maybe they can communicate with your doc b/c obviously he is not on the proper dosage. Can you go to the ER there? When you said he was Blah, not really there, that is what my daughter did when she became dehydrated. How does his soft spot feel on his head?

[Anonymous]

I know how scary that it when your son refuses to eat and can’t afford not to. It is really hard not to totally panic. Is it possible that your son is teething? That can aggravate reflux and cause a baby to refuse to eat. My son was prescribed Periactin to help his appetite and it helped a lot. You might want to ask about it. It’s an antihistamine, but one of the side efects is increased appetite. Used on anorexia nervosa. Emmy2006-2-28 22:34:20

[Anonymous]

I saw his ped today and since he was drooling and smiling she was like o he looks good!!! But than she asked if I had a bottle and she watched how he eats and she agreed something must be done…….YES ok I have been saying this since he was 3 months old!!!!! She is contacting someone at Trippler and she wants to see if she can get him seen at Walter Reed since Yale has such a long waiting list but she WILL NOT up his meds. She WILL but him on reglan but I refuse. SO I guess I’m stuck with a miserable baby til I can get home:( I hope this new prevacid helps.

Cris

[Anonymous]

I always upped my son’s meds without my docs permission. I’m not telling you to do that, but just wanted to let you know that another mom had to do what she needed to do so that her son was comfortable, even if it meant not following the docs recommendations. At 5 months old, I was pretty much giving my son 10mg twice a day (he weighed about 17lbs)- I figured the higher dose was helping not hurting. You could see the diffrence in him right away. Also, my son had the Prevacid powder packets that you mixed up 15 mg twice a day, so I had that wiggle room to be able to add more if I think he needed it, since when you mix the powder you have to throw out the unused portion immediately because it becomes non-usable within an hour or so.

Lansoprazole (Prevacid): 1-1.5 mg/kg/d (you take your son’s weight in pounds and devide by 2.2 to get kilograms. So if your son is 15 lbs, that’s 6.8 kilograms which would give you a dose of 6.8 to 10.2 mg per day)

Here’s the link where I got the dosing from, it is from the Pediatric GI team from the University of Florida on page 16, maybe if you show that pediatrician that, she’ll be more willing to up the dose (depending on how much your son weighs)http://www.peds.ufl.edu/prp/prp_fellows/gastro/gerd-ee-hp.pdf

The above power point also mentions that you NEED to split the dose and give the meds TWICE a day because their little metabolisms are so high that the medicine is out of their system by the time they go to bed and are unprotected from the acid all night long. My son’s reflux was obiviously worse in the evening-so I discovered it on my own when he was just 1 month old, so I asked the ped if I could split the dose and it helped a TON!

lansima2006-3-1 10:53:49

[Anonymous]

thank you all for the input. It’s so nice to know I am not alone in this!

Cris

[hellbennt]

PPI dosing chart: https://www.infantreflux.org/forum/forum_posts.asp?TID=2668&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;PN=1&TPN=1

Publications on PPI dosing: https://www.infantreflux.org/forum/forum_posts.asp?TID=2669&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;TPN=1

How to ASK for PPIs to be Compounded (condensed version): https://www.infantreflux.org/forum/forum_posts.asp?TID=4505

[Anonymous]

My baby was born 9/05 and was on 7.5 mg Prevacid for a while. He was refusing to eat and life was unbearable. I dreaded every feeding and thought he’d starve to death. I shared the information from MARCI-kids.com about babies needing higher doses of Prevacid, given more frequently than once a day, with my doctor. My doctor said o.k and he is now on 10 mg 3x’s daily. (that is what Dr. Phillips at MARCI-kids) reccommends for his age/weight (17- 18 lbs). He is doing so much better!! Your baby probably needs a higher dose and more frequent than once per day. I hope you can talk to your doctor and get your babies meds increased. Have you checked out the information at MARCI-kids.com??? I hope things improve, and I sure know what you are going through.

[Anonymous]

Hey, hope he is doing better, just wanted to add that my son, 3 mos old, only eats 2 oz before bed at 9 then wakes up at 8 and only eats 2 more..he’s always happy and never dehydrated. he eats about 10 oz a day, his dr says he’s fine as long as he’s gaining weight, makes me nuts, but I’ve finally realized that she may have a point.

[Anonymous]

My dr got the would from a peds GI doc, at Walter REED, to up his prevacid caps to 7.5 twice a day. We tried it and Jack had a horrible night so I dropped him back to 7.5mg in the am and he is doing good. Yesterday he took 25 ozs!!!!!!!! I’m really thinking the compounded solution was the problem since 7.5 of the caps is working and atleast I now know I have room to up his dose if I need too.

Thank you all for your support!!

Cris

[Author]

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