Posted By Posting
Mar 23, 2009
nikkid
New Here and Looking for Advice
Hi everyone I'm from the UK and so thankful that I came across this forum which I've been reading up on from time to time. I'm desperate for some of your advice and will try and keep my post as short as I can, but I'm at my wits end with my 12 week old son. He was diagnosed at 2 weeks with reflux, although doctors were insistent that it was "colic". He was put on zantac and domperidone which worked for about 4 days and then he was back to screaming all day, gulping, hiccuping, wheezing. On our return to the hospital he was changed to Pregestimil hypoallergenic formula and his zantac increased which again worked for about 2 days and back to square one. He was then put onto prevacid capsules on top of all the other medication but this did not help and he was switched to the fastabs (7.5mg once a day). However, we split this to twice a day after reading all your helpful advice about splitting ppis. After around 4 weeks, we noticed a huge improvement in him but he also developed chronic diahrrea (12 times a day) which the pediatrician thought could be the tabs and pulled him off and put him onto prilosec dissolvable tablets (3.7mg once a day). During all this, the pediatrician has put him onto Neocate, took him off Neocate and then back to Pregestimil and then back to Neocate! He also suggested that if there was no improvement to increase the Prilosec 0.5mg every 2 days until my son was settled. However, we are now at the maximum 10mg once a day, 1.2ml zantac 3 x daily, 1.3ml domperidone 4 x daily, Neocate LCP, thick and easy. On top of all this, he's now been prescribed imodium to try and control the diahrrea. My son is still screaming each day and has done since being put on the prilosec over a fortnight ago. The Neocate (which he's been on now for 5 days) has cut down on the frequency of his diahrrea (now pooping around 5 times a day) and the colour has gone back to green instead of yellow, but he is gulping, screaming, arching his back, hiccuping, wheezing. My son sleeps for a period of 5 hours at night, but naps for 20 - 30 mins during the day before waking crying. This got slightly better when on the prevacid but not a great deal. His breathing is awful, he permanently sounds chesty, as though something is caught in his throat and makes rasping noises especially after screaming. I have my son's cot propped right up and keep him upright after feedings etc. The pediatrician seems reluctant to do any testing, just seems to like using my son as a weekly guinea pig at the cost of my son's wellbeing and our family's quality of life. I have called several times over the last 10 weeks to ask for his advice and he very rarely returns my calls or tells me he will be out of the office, only for me to find out from his secretary that he's not actually away at all! On one conversation with his colleague, his colleague actually asked me what medication I would like my son to be put on as he would be happy to put him on whatever! I wanted your opinions as to whether the prilosec should be working by now? I thought that given the Prevacid seemed to control the reflux that once he was put on the Prilosec straight away, he wouldn't go completely back to square one. The pediatrician seems reluctant to go back to Prevacid even though it appears this was not the cause of his diahrrea. He seems to want to leave it up to us to make decisions and we are in no position to do so. Do you have any idea what could be causing his diahrrea which has been going on for 5 weeks now? I wondered whether it could be a reaction to the starch in the pregestimil and thick and easy. We removed both and my son just had Neocate for 2 days which seemed to make things a better colour and consistency but the pediatrician said that if it hadn't gone completely back to normal within 24 hours of stopping then it was unlikely to be a reaction to starch. I am so sorry to rant and ramble but I am so tired and my head is so foggy with having to make so many of the decisions over my son's medication myself that I can't even think straight. I would be so grateful for your thoughts.
Mar 23, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
wow, there is WAY too much going on with no chance to let anything work! I think you should stick with Neocate and Prevacid for a month and see how it's going at that point. My son is a pretty severe refluxer and has always been what I call "juicy"...always had a refluxy cough and raspy liquidy breathing...his lungs were always clear. It was just his baseline..he always had liquid going up and down therefor he always sounded like that. I would probably ask to have Pulmicort and a nebulizer added to his regimin...It can really help them keep those airways nice and open and when (god forbid) your son gets a cold or any respiratory illness you'll really appreciate having it in the home. Nebulizers can be purchased pretty cheaply, but insurance should cover it. In any event...formula alone shouldn't be changed around in 24 hour periods...it's hard on their bellies. As for the diarreah, I'm not sure what to tell you...perhaps a lactose intolerance? Neocate still has a lactose base. We had to switch to Elecare which is corn based...there is also Nutramagin AA and others...I'm sure someone will tell me if I'm wrong about Neocate. My son was on Pregestimil in the NICU, but I have no idea what was in it! Good luck, I'm glad you've found us, but sorry you had to!
Mar 23, 2009
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
Photobucket
I agree with Zack's mom, I would stick to what he is on now for a month. It def takes time for things to work and to keep switching it is def making it worse.

I was confused about what meds is he on right now?

And what are his doses?

Mar 23, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Oh wow. They've given nothing ANY TIME to do what it should. Generally ANY change should be done one at a time, for at least a week, preferably 2 to see if it's working. The only time that shouldn't be done is if there are life threatening problems starting (allergies, etc)

I'd ask to stay on the Prevacid and Neocate for at least 2 weeks, like zack'smom and abbysmom say. Sometimes reflux kids do have intestinal issues - ours was constipation. The dosage pf the Prevacid seems a little low (at 3 months, my dd was on 11.25 mg once a day with an H2 blocker at the 12 hour mark)

I'd try to switch docs too - there's not much more frustrating and maddening than having one say you're off your rocker!

Mar 23, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Also, Make sure none of those meds are given within 2 hours on either side of your PPI - they have to be given completely empty (food too - at least an hour before the PPI and eait at least 15 min before feeding after the dose)
Mar 23, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Ok. Whoa. FWIW:

Go make friends with your pharmacist. They can be your best source of information.

Drugs like Zantac and Pepcid are H2 blockers. They block roughly 30% of acid in the stomach. Not all H2 blockers work for all people - side effects seem to be the deciding factor in if the drug works for you or not. Though some people experience no relief from either.

Drugs like Prevacid and Prilosec are PPIs. They actually stop the acid factories from producing the acid. They block roughly 70% of the acid. They tend to be the most effective but do take from 1 to 6 weeks to take effect.

Motillum/Motillium is not sold here in the US. It is used for a couple of things - relieves nauseaand vomitting and promotes gastric peristalsis. Basically it is used to help with symptoms of Delayed Gastric Emptying. Side effects can include itching of skin, dry mouth, pain/swelling of breast. Rarely seen side effects include cramping, constipation,diarrhea, irritability and change in appetite. I think it's strange your doc rx'd this without doing testing first.

On the subject of formula, many many reflux babies have allergies or intolerances. At this young age allergy testing is usually not worth it as results are not usually accurate. About 50% of infants who are sensitive to milk are also sensitive to soy. Many many are also sensitive to other foods as well. Milk proteins take about two weeks to clear the system. Changing formulas at such short intervals is at best pointless and at worst hard for your baby.

It sounds like you needs new pediatrician ASAP. Trust your mommy gut. Those instincts are there for a reason! I agree with all the others to slow things down-way down. Without an adequate trial period for each individual change there is no way to judge what works and what doesn't.

For my daughter Isobel, we tried Zantac with no success then Prevacid with much better results. Now she's on Prevacid and Pepcid and the acid is totally under control. Formula wise, we BF'd until 4 months then tried Alimentum which instantly cause blood in her stool in a week. We changed to Elecare and did that for a full month- turns out she's sensitive to corn. Now we are trialing isomil RTF which is much lower in corn. We're three weeks in and so far, so good.

Does your LO have diarrhea or just loose stool? Is there any mucous? If your LO is having diarrhea so often keep an eye on hydration. Ask your ped for a list of dehydration signs and how to counteract dehydration. Mucous can be a sign of allergy.

We also use Carafate which is something I'd ask your ped about. It is like super mylanta and coats the esophagus to help prevent acid damage. It has virtually no side effects but can rarely cause diarrhea (.5% of patients). While it is not a final solution, it may be enough to help you two through this nasty period.

I am so sorry that you are going through this. Trust yourself, read a lot, make friends with your pharmacist and make sure you get some help so you can recharge. Good luck!

Mar 23, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
I meant to also say that H2s and PPIs together block 75-80% of acid.
Mar 23, 2009
mallory'smom
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
Wow, you have been through a lot. Many of us have been through the same things but not usually so much all at once! I agree with all the advice given so far. #1 priority is get a new pediatrician. It sounds like you are on the slippery slope of dr.-thinks-mommy-is-crazy and then it is extremely difficult to get help for your LO. You need to find support from the medical community and don't stop looking until you find someone you are comfortable with. #2 priority is to try one medication and one formula at a time and give them time to work. It does sound like the prevacid dose was too low. My LO was on 15mg once/day at 2.5 months. We found it did not work for her and added zantac which turned out to be the winning combo. The zantac is extremely weight sensitive too so you need to be careful. By the way, do you have anyone helping you? This is the hardest time before you figure out what works for your baby and you will need help. Keep posting and hang in there.
Mar 24, 2009
nikkid
Hi all and thank you all for your responses. I think you are right and we have been given no time for anything to work. Whenever we're advised by the pediatrician to change something, we're told to try for 48 hours! He's advised that a formula change should take 48 hours to notice improvement and ppis 5 - 7 days! My son is currently on Prilosec 10mg once a day, domperidone 1.3ml 4 x a day and ranitidine 1.2ml 3 x a day. Have any of you ever heard of an intollerance to starch? This is what we were wondering could be the problem with the diarreha as this is what is in the Thick and Easy. We are due to see the pediatrician a week on Monday and I will be informing him that we will be sticking to the formula and meds for a while longer before changing so rapidly. I am also booking an appointment with my GP to get a referral to a specialist so at least we are confident we are being given the best advice possible.
Mar 25, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Some babies do have issues with carbs and there's a name for it that escapes me at the moment. Are you able to get a product called Simply Thick? It's xanthan gum product to thicken formula. The xanthan gun in this particular product is NOT corn based. HTH
Check with your
doctor first!