Infantreflux.org | Questions for MSPI and Neocate Users

This topic has 11 replies, 1 voice, and was last updated 19 years, 1 month ago by Anonymous.

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July 17, 2007 at 7:24 am #39383

Anonymous
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Ok, here’s the deal. I’ve posted before so I will summarize my story again since I’m a newbie. My son was having what we thought, reflux issues from about 6 weeks on. (He’ll be 16 weeks on Fri) We tried Axid, Zantac and Prevacid (Meds) Nestle Good Start, Soy, Lactose Free, Gentle and Nutramigen (Formula). The only relief he had was Gentle for a bit, but then resumed what I call EXCESSIVE heavy spitter and projectile vomitting, all this time still spitting up clear liquid on a constant basis. He’s had cereal in his bottle since 10 weeks as well. He’s a nice 16.5 lb now.

When we went to the GI doc a week ago, he thought allergy and threw three cans of Neocate at me. I went to Nutramigen partly for price, but partly because it’s easier to get if in a pinch. Did ok for about a day and resumed vomitting, even worse to where he wasn’t peeing much on Sunday and took him into the ER. Checked out fine, said that he might have a bug on top of it. In any case, had to start giving him formula in low doses to make sure he was going to keep it down. Slept fine on Sunday (at least HE did). Monday gave him 2 oz x 2 of Nutramigen and excessive happy spitting again. (Oh, took him off all meds because we felt we needed to subtract everything and then see what’s wrong before we add back.

When he went down for a nap I went on and searched this WONDERFUL board to see if I was missing something and to read about the Neocate. Well, the more I read, the more I learned about MSPI which I finally figured out what it meant. Alot of people had the same story I did. Well, since I had the Neocate, I decided to try it. First off, he never had issue taking it, sucked it right down. Was ready to go buy some organic baby food to put in there and still might if he starts rejecting it. And, have had ABSOLUTELY NO excessive spit up, projectile vomitting, etc and he has took a wonderful turn last night as far as h is mood. Now I know it could be a honeymoon phase, but I’m keeping my fingers crossed.

He was so tired, though, due to the excessive crying for the past few days that he passed out at 630 pm, woke up once at midnight, but fell back to sleep and got up at 530. Gave him 4 oz at once now and so far it is staying down. Will give him another 2 in about an hour. Due to the other issue of the reflux, we usually give him 4 oz, 2 oz, 2 oz over a period of time. If he handles 4 oz at once good for awhile I’ll do 5 and maybe we won’t have to spread out his feedings which would be nice.

So, what I came here for . Questions

Am I reading this right, the proper way to prepare Neocate is to put the powder in first and then fill the water to the line that you need (i.e. 3 scoops, then fill til 3) shake, add more water if it’s not to the line after shaking. This is just weird because you normally put the powder in after the water with the other formulas.

Does MSPI go away or is this something he will always have and he’ll have to eat special foods?

I read somewhere that Neocate could be covered by insurance with a letter of necessity. In fact, I saw a woman on here who had Great WEst which is what I had and it was covered for her. Anyone have Unicare? We will be switching to that later due to my husbands job change.

Babies normally start cereal at 4 months. Now he’s had Oatmeal and Rice already in the bottle. Should I give him time to get used to this formula first and then maybe start the cereal a little later? I’ve taken it out of his bottles completely at this point.

If this does keep hs vomitting under control, we might be adding the Axid back in for the Acid, but we’re giving it a little time as long as he’s not uncomfortable. Anyone on Neocate and Axid or Zantac on the same time? How does that work for you?

If I have to start adding the baby food to the bottle, how much? I’m thinking of going to that organic website for the organic extract. How much of the extract goes into the bottle?

I think that’s all. Thanks SO much for all of your help. This board ROCKS !!

Maria

July 17, 2007 at 8:01 am #39385

hellbennt
Keymaster

hi & welcoem!

I can’t answer all of your questions, but you certainly will get them all answered!

If you go to the top of the page & click Infant Reflux Forums

from there scroll down and look for the MSPI Forum- there you’ll find a top post called ‘MSPI What I have Learned’-

this should help you quite a bit-scroll through this thread- it’s 2 pages but there will be links that catch your eye

there’s a link to ‘Misconceptions about Elemental Formulas- this actually explains quite well what elemental formulas are all about

sounds like neocate will work for your little one!

also, there’s a link called ‘Going to the Top!’ – I’m guessing this link is also in that thread, but if not, go back to the main page (top of the page & click Infant Reflux Forums) and scroll down to the Introduce Yourself Forum- there’s a top post called ‘Groupie Intro’- this has the link ‘Going to the Top!’ as well as a lot of other links that should prove useful

Next, yes there are babies who need neocate and medication as well…

as far as thickening neocate, yes I’ve heard of it, but if you don’t NEED to, well then personally I wouldn’t, but I’ve never thickened, I’ve ‘just’ been on this board 4(!) years now…

so glad you found us!

~laura

ps: https://www.infantreflux.org/forum/forum_posts.asp?TID=7728 this is also another gathered information link that may help

hellbennt2007-07-17 08:03:31

July 17, 2007 at 8:27 am #39386

Anonymous
Inactive

HELLO! I won’t be able to answer all of your questions either, but I’ll do the best I can. We had Sarah on Alimentum (which is Similac’s version of Nutramigen). It made all the difference for Sarah. She is now almost 15 months old and I am happy to say that she has outgrown her MSPI. I think she still has a sensitive tummy, but she is (so far) able to eat/drink anything she wants. So there IS light at the end of the MSPI tunnel.

Reflux can be a SYMPTOM of MSPI and once you have the MSPI under control, you don’t require any meds to treat the reflux. Sarah’s never worked that way so we required special formula and meds. Every baby is so different! Zantac and Axid are H2 blockers which *sometimes* aren’t as effective as a PPI medicine like zegerid or prevacid. It just depends on the severity of the reflux. A lot of moms on this board have their child both on special formula and reflux medicine so that is not uncommon at all. You just administer the meds. like you normally would.

I can understand your wanting to take things apart and try them ‘one at at time’. Remember though that ANY new formula switch can take up to 2 weeks to see the full effect so don’t give up on a formula before a good amount of time has passed. If things seem better but not perfect (or just not good at all on Neocate) then I would definitely add a med. into the mix and see if you can get full relief that way.

We never had to purchase Neocate but I hope you are able to get full or partial coverage from insurance. I know it’s expensive! I always got Sarah’s formula off of ebay. I know that can seem kind of scary to some people but it was SOOO much cheaper for us that way and the cans were always sealed. So that’s an option too if your insurance won’t help.

Well, I hope I answered some of your questions. Reflux and MSPI can cause quite a headache of guessing!! Hang in there and good luck!!

July 17, 2007 at 8:41 am #39387

Anonymous
Inactive

If you make neocate by the bottle than you add (lets say you make 8 ounces) 8 scoops of Neocate to 7 ounces of water *HTH* It is always less water but I don’t know why as we were confused at first too 🙂

I was told 90% of all babies outgrow the MSPI by 1 year old *Fingers Crossed* I have also started oatmeal in the bottles and she Loves it 🙂 But I think if you are considering food to spoon ffeed *JMHO* As to not confuse him later

Ask your ped to call a local medical supply company and they can help with a letter of nessecity from your ped. to get your insurance to cover the Neocate. Also WIC can help if you are eligible *HUGS* HTH

Katie has reflux too but I have found the meds only cause other nasty preblems for her so I have stopped and she is getting better already *SIGH* All the meds mad her cranky with constipation *tmi* Sorry*

July 17, 2007 at 10:33 am #39404

Anonymous
Inactive

HI Maria,

Here are my thoughts. I am at work and can’t read everyone’s response so excuse me if I repeat something. If he does have MSPI then he most likely can’t tolerate rice cereal as the protein in it mimics the protein in milk. Also You should avoid oatmeal/barely cereals until 6months as the introduction of gluten before 6months of age can increase the risk for celiac dz in the future (let me add that I am a dietitian). We just started solids last night (Cooper just turned 5months old) we are starting with veggies and leaving out all cereals for now… which isn’t a big deal since his formula is fortified with iron. Most babies do outgrow the MSPI but not usually until 9-12months old, I think I saw somewhere that 3% or something low like that will keep it for life… but don’t quote me on that. I hope this helps. Good luck.

July 17, 2007 at 11:49 am #39408

Anonymous
Inactive

ok, have had aturn around. He vomitted and is just completely upset. I’m hoping it was because I gave him too much too soon. Do /i stick it out? HELP !!!

July 17, 2007 at 11:56 am #39409

Anonymous
Inactive

Stick it out. The formula isn’t going to stop his spitting up, only time will do that. And I would readd his meds back ASAP as it appears that he is in pain. I would give the formula at least 2 wks to make a difference. I would put him back on meds probably a PPI (prevacid, zegrid) and give that 2weeks as well and use the axid/zantac as well spaced properly (someone will have to chime in on spacing the meds) until the PPI can kick in…. it does get better. We are all proof of that. hang in there.

July 17, 2007 at 2:15 pm #39423

Anonymous
Inactive

Some reflux babies (like my son) will throw up/spit up no matter what you do. The LES is immature and until it matures they will throw up no matter what you feed them. The most important thing is that their pain is controlled, and that they are eating and keeping enough down to gain and grow normally. My son’s pain was controlled with Prevacid but he continued to throw up and spit up until he outgrew his reflux at 9 months. However, despite how much he threw up he still gained weight normally. …..Just wanted to throw that out there so you don’t worry too much about the puking.

July 17, 2007 at 3:59 pm #39430

Anonymous
Inactive

Kaelyn was on three or four different formulas before we settled on Nutramigen. Each time she had a “honeymoon” phase when her spitting drastically decreased and she seemed much happier, then she would slide back into her same issues. Unfortunately, we weren’t given neocate as an option and I didn’t realize that I should push for it – she was later diagnosed with a milk allergy, so neocate would have helped her.

We tried Neocate with Alex, but we only gave it two weeks before switching back to Alimentum. I wish that we’d waited and given it a longer trial because she also has a milk allergy now.

For your other questions:

*lots of times, formulas and meds won’t help decrease the spitting, but they can turn your child into a “happy spitter” – it doesn’t solve your laundry issues, but it does give you a happy child – this happened with both of my girls

*one of my girls was on a special formula, zantac, and prevacid at the same time, so it’s definitely an option

*H2 blockers (like axid and zantac) are very weight sensitive and it stops working for lots of babies resulting in the need to switch to a PPI (like prevacid) – however, it can work for some babies

*If the cereal is helping significantly with the spitting, then I would keep using it. With Kaelyn, the benefit definitely outweighed the risks (and I say this even though she developed a wheat allergy). If it doesn’t help, then I wouldn’t do it and would wait until at least 6 months to try cereal.

July 18, 2007 at 9:47 pm #39497

Anonymous
Inactive

UPDATE: Well, I’ve had Grayson on the Neocate since Monday. 3 oz every 2 hours or so. Seems like when I try to give him 4, his tummy gets upset so we’ll try graduating him up in a couple of weeks. I also added the Axid back in .9 twice a day for now and will probably up that dose. Since Monday he has thrown up twice, once yesterday and once today, both times given a little more formula than normal. His burps are just regular baby spit ups. He does still spit up the clear liquid periodically, but it is decreased and only gets worse when it appears the meds are wearing off. I gave him Axid this morning at 530 and around 430 he started getting fussy. I picked him up from the sitters at 530 and she said at 5 he threw up and was fussy. I gave him Axid when we got home and then fed him 2 oz at 6pm. He was fine, no throw up and normal baby spit up. Gave him 3 oz around 8ish and laid him down for bed.

At present we are going to self diagnose as MSPI with GERD. We are going to stay the course of Neocate and Axid for now and see how we do and up the Axid as needed. I will not re-introduce cereal at this time. It might have been hurting him this whole time and will just introduce the normal veggie/fruit regimine at 6 months.

He’s been more smiley and only really upset right around the two vomitting episodes or when it appears his Axid is wearing off. Other than that, just normal fussiness when he’s hungry or tired.

What do you all think? Would like opnions

July 19, 2007 at 10:18 am #39521

Anonymous
Inactive

Sounds like he’s doing better. What I would do is gauge whether he’s getting enough formula by his weight checks at the doc, and by whether he’s wetting enough diapers and having regular bm’s. And I’d keep an eye on his comfort level. If he starts to become increasingly irritable, not sleeping well, fussing during feeds or refusing feeds, then I’d ask to try a PPI medication.

I think it’s wise to wait on the cereal.

It’s possible that he also has DGE (delayed gastric emptying) and that’s why he can only eat 3 ounces at a time. My son also had this. It’s common with reflux babies. My son could only tolerate 3-4 ounces for a very long time. Around 5 or 6 months he could finally take 5 ounces and he rarely took more than that until he outgrew his DGE at 13 months. At that point he began to eat much larger volumes at meal times. Sorry…don’t mean to worry you more with another possible diagnosis. I just thought I”d mention it because it helped me not worry so much about Myles once I understood why his stomach capacity was so small.

I think things continue to improve. Thanks for the update.

July 19, 2007 at 10:36 am #39529

Anonymous
Inactive

It’s hard to say if he has DGE and if anyone can shed some light, I would greatly appreciate it. 3 oz are good. Every now and then we can do 3 and then 2oz an hour later. Other times we do it, he vomits. He wants to eat again sometimes after an hour and again, sometimes we can do it and other times we can so we try to stretch it to 1 hour 45 2 hours so he doesn’t throw up again. Also, we are doing .9ml of Axid x2 and will probalby up it to 1.0 soon. He was on Prevacid, but he was throwing up purple which meant his stomach wasn’t absorbing it before it came back up and this was just the first two doses of a fresh bottle.

In any case, should I worry about this DGE or will he more than likely grow out if it as well.

Thanks all for your help and understanding. This board rocks !!
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