Reflux / Scoping / Medications ADVICE

[Anonymous]

We are first time parents and needless to say feeling helpless. We knew our child had special needs from day one, but being new parents we listened to several worthless pediatricians. We are on our 5th and have learned a lifetime already. Our child has severe reflux. We have tried about 5 medications and every formula on the market. We have been on Neocate for 3 weeks and everything seems exactly the same. He is impossible to feed become straight as a board or standing on our lap pumping his legs wildly. He is on the lower end of the scale with his feeding and ounces. We are on our 3rd GI specialists, the first two told us that 16 hours of straight crying is normal. We have been in the ER 5 times and tried every combo of medications, bottles, water, nipples, ……. you name it.

We are taking him for a lower GI scope on Thursday, does anyone have any information or experience in this area? He has started to eat less and the weight is starting to fall. The pain is unreal, he sweats, screams, pumps, you name it, for hours, until he finally passes out. We he also has floppy airways, which forced us to thicken his feed tremendously. We saw a feeding specialist who helped us stop the aspirating.

He is 3 months old and has spent the majority of his time writhing in pain or passed out. We feel completely helpless and frustrated, with no answers and/or fixes. The medications just make it so he can function a little.

I have been reading the logs and fear that things are going to get worse not better. I also have seen that doctors, the vast majority, have no idea how to address infant issues and want to pat them on the head sending them on their way.

Any advice on the lower GI scope? Any advice on what to steer from? Any medications that you have found worked with success?

Thanks and it is sad as a parent to read these postings, but helpful to see other people understand hard emotionally serious days.

[Anonymous]

Hi and Welcome. It could take up to 4wks for the Neocate to start truly helping, so hang in there. HIs gut needs time to heal and that is what the neocate is doing. I can’t speak on that formula personally but there are many here who have used/use it with great success. What meds has he been on? I ask this b/c if you aren’t giving them right (which most of the docs don’t tell you the right way) they won’t work properly. Many babies on this site are on either prevacid or Zegerid. We love prevacid and it worked wonders for my lo but he needed a pretty high dose that I actually had to have my ped write for vs our ped gi (Both DH and I are in the medical field so our ped usually knows we know what we are talking about). Check out marci-kids.com they have the most up to date information about infant/children’s reflux meds around. They are a great resource. I am sure others will chime in as well. Welcome aboard. Yes it may get worse before it gets better but it will get better.

[Anonymous]

Thanks for welcoming us, not that it is a good thing in here, it is sad to see so much innocence going through so many bad things.

We have been through so many medications, none of them are good, but he Prevacid is the best of them all. We fired one Ped because she gave us the wrong dosage and instructions on Prevacid, out she went. We have done research on how to administer the medications properly, which helped, but he is suffering badly. The last 4 days were exhausting emotionally and physically. They days he is bad nothing works, except us, to try and get some ounces in his body so he keeps his weight. I cannot believe how loud and hard he can scream and cry. We happened to be out this weekend and he went bananas, people were in shock at how long and hard he could cry.

We have tried Pepcid, Zantic, and about 3 others, but I do not remember the names, but they did not work. We have to thicken our feeds 10cc’s per oz, because we met with a feeding specialist (after 2 barium tests, xray, upper GI) and he was aspirating. He honks like a goose and at times extremely loud.

We have tried Oatmeal and Rice to thicken anyone have any information on other items to use that might be better or experience? We can only use these disposable nipples (cross cuts that we twist to tear open more) because the formula is like oatmeal.

We could not even consider having anyone else feed him, because I would have to give them a class. It is extremely complicated and he is particular. I would try feeding him standing on my head if it would work and I am sure that has gone through our minds.

We have a lower GI scope on Thursday with a pediatric GI specialist. We have heard he is the best in the city (Pittsburgh). They say he is put under light sedation and it takes 5-7 minutes. I have no idea how this could give them the answer we need to give him the right treatment, but I am sure it helps being able to see inside rather than guessing outside.

Thanks to everyone for any help on the above questions.

[Anonymous]

Hello and welcome! I am so sorry for what you and your lo have already been through!

Beth covered most of the high points, but I wanted to add a couple things. I notice your little one is on Neocate. I assume this is for MSPI (milk soy protein intolerance). My ds is on Elecare. I have found that http://www.marci-kids.com is a great site for med info and doasge info. It really does take a high dose for our poor babes to get relief.

If I had it to do all over again, I would not thicken, a least not with a cereal. IMO, I *think* it made my sons reflux worse, b/c the cereals can be hard on such a young GI system. Maybe try thickening with something like Simply Thick or ThickIt. These are both thickeners used by hospitals and nursing homes for patients who need thickened beverages. Both can be purchased online or at the CVS and Walgreens pharmacies. Easier on the tummy.

If you do like the cereals, MAKE SURE you have been buying cereals that are soy free. Gerber cereals have soy in them. Beechnut and Earths Best do not (Beechnut mixes very well in formula).

My ds had a upper GI and lower (sigmoidoscopy) scopes about 2 months ago. The hardest part was the 4-hour fast beforehand. My ds actually slept through the night for once following his scopes.

Take care and good luck with the scope. Hopefully you get some answers!

[Anonymous]

I have been thinking about using a different thicken agent, but everything else is so chaotic, I could not imagine doing any more research, and do not have the time, so thanks. I think at this point it is the only thing keeping us away from feeding tubes, otherwise we would be there. He jumps around from the standing position when feeding and there are days, many days, he does not eat.

I think the other question I would like to get answers to, is how much Prevacid is too much and how many times can you administer?

[hellbennt]

I don’t think there is a too much prevacid- it goes by weight & for many 30mgs a day seems to really help-

I’ve read of 40mgs a day, too – this is with zegerid (made w/ prilosec) – but I think I’ve seen prevacid as high as 40mgs a day

you can divide the dose up into 2 or even 3 doses & they don’t have to be split ‘evenly’ so if the ‘worst’ time is night time, I’d give the highest dose at night…if you need to contact dr philips of marci-kids you can! he will even communicate w/ your dr. to help figure out/calculate the best dose!

[Anonymous]

Hi and Welcome

I am so sorry you are going through all of this. I always said that if Landen was my first child I may not have had another one right away. He had really severe reflux and still has pretty severe multiple food allergies & intolerances.

What Beth said about Neocate is true. We had done every type of formula and even Alimentum but Landen still had terrible reflux, bloody & mucousy poop and awful crying spells that lasted the majority of the day. It took a full month on Neocate for his system to rid of all of the milk/soy protein from prior formula and for him to heal. Don’t jump ship on it yet! Give it another week or two. What worked for us was to do Neocate only (even though his reflux appeared to be worse at first- it is b/c Neocate is thin) with no thickening with cereal (I would honestly try a tasteless clear thickening agent like Kristin mentioned) and a HIGH dose of prevacid split 3x per day. At one point in time we used a high dose of prevacid AND Pepcid complete for breakthrough acid. I am sure you know from researching not to give an H2 blocker like pepcid, tagamet or zantac unless it is 4 hrs apart from the prevacid. (or PPI you are using)

We also had the endoscopy done with Landen and it is not bad at all and it gave us answers. They are only under for a short time and they get a bird’s eye view of many things that *could* be going wrong. Our GI doc was insistant that Landen had EE based on his symptoms (luckily they did not find that- however he was on a Neocate only diet, so we may scope him again now that he eats food). With the scope, the hardest part for us was not feeding Landen after midnight and knowing he was hungry. I also was not prepared for how badly he would be thrashing and crying after he came out of anesthesia (very normal reaction) so i thought I’d mention it to you. By noon on the day of his endoscopy he was drinking like normal and back to his usual self like nothing ever happened.

HUGS to you. Many of us have been there and it REALLY WILL PASS!!!

[Anonymous]

why are they doing a lower GI scope instead of an EDG scope? sounds like they area working in the wrong direction—unless i missed something when reading your post.

[Author]

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