Posted By Posting
Nov 28, 2010
runwithyou
New Here - Have no idea where to go from here!
I am going to start from the beginning because that seems like the best place to start! My baby is almost 6 months old (on December 5th) and has been having issues since the moment she was born. She never latched on (due to an uneccessary c-section/prolonged seperation) and I pumped milk for her for the first 6 weeks. From the moment she was born she screamed and hasn't really stopped. She is extremely fussy and cries/screams all of the time and always has. She vomits constantly (often as she is eating, after she eats and hours after - sometimes it is curlded). She NEVER sleeps and when she does she wakes up constantly. She has wet burps, constantly gets the hiccups. She gags and chokes all of the time. Other symptoms: coughing, wheezing, noisy breathing, comfort eating (up to 70oz a day sometimes!), neck/back arching, weird grunting sounds... At two weeks old, she was put on zantac. It seemed to take away some of the symtoms for awhile. She took it every eight hours. The thing it mainly helped was the constant crying, everything else stayed the same. The crying didn't disappear totally but it got more tolerable? Does that make sense? She has always been extremely gassy, had eczema and mucus in her poops. She vomited WAY more when I ate milk while pumping so I decided to try and find a formula that worked for her. I didn't want to pump long term and the stress of having her scream all day made me stop. ANYWAYS. We went through every single formula before settling on nutramigen. Milk based ones made her vomit, cry, have green/mucus poos, and made her skin worse. Soy made her constipated, gassy and she could never burp on it. The nutramigen seemed to help her alot and her skin cleared up quite a bit. It is still slightly rashy but better. On the nutramigen she has had PURE liqued poops with mucus in them. She poops fifteen - twenty times per day. She will eat up to 60 - 70oz some days. She still projectile vomits and spits up alot but a LOT less than on milk formula. She has been on nutramigen for about 4ish months now. Last Thursday, I saw a ped. and he said to try starting her on a milk based formula again. An allergy has never been confirmed and he believes the whole allergy thing is bogus (ugh!). So on Thursday night at 4:40pm, I have her one ounce of a milk based formula mixed with 5 ounces nutramigen. She downed the bottle. By 6:10pm, we were in an ambulance on the way to the hospital after she had a severe reaction to the formula (violent vomiting, shortness of breath, hives, gasping for air, swelling, SUPER SUPER pale and lethargic). She continued to vomit until she was vomiting green stomach bile. They gave her a bunch of meds and the reaction calmed down. They also prescribed 15mg of previcid solutabs which she started on Friday. Along with her 1.5ml doses of Zantac twice a day. She is close to 18lbs. Since Thursday, she has eating about 20oz per day and will not take more than 2 - 4oz at a time. She is SO fussy, upset and uncomfortable. She is coughing up a storm and swallowing constantly. The arching has reached an all time high. The nutramigen poops are back though everytime she eats. I don't know where to go from here? I think neocate may help her but my doctor thinks I should just wait until she out grows it. He wants me to start solids and put rice cereal in her bottle (which I tried and she just gagged). Would a neocate trial be a good idea? Any advice?
Nov 28, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Wow!! So sorry for everthing you are going through. I would definately try Neocate a try. It certainly sounds like she has severe MSPI. I cant imagine why your doctor would say to let her out grow this especially after the reaction she just had to milk. Scarry!! I would find a new ped and get with and pediatric GI asap. What kind of prevacid is she on. Solutabs or compound? Solutabs have trace amounts of milk in them and given the reaction to the milk in her formula I would not chance it.

Hopefully MSPI moms will chime in soon on the formula part.

Nov 28, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
PS. Let us know state you are in. Maybe we can help direct you to a good GI.
Nov 29, 2010
dcd
I am not a doctor, I'm the mom of an MSPI baby. My advice is to switch your daughter to Neocate or Elecare immediately. Order it overnight shipping if you have to! Next, find a new pedi that knows what he's talking about - in my opinion the advice of your current doctor is insane. It seems clear your daughter has severe milk allergy and probably reflux. Get the new pedi to give you a referral to a pedi GI and pedi allergist. Sounds like your daughter had an anaphalactic reaction to milk. If she's on the prevacid solutabs either see if your pharmacy can make a liquid compound for you or do it yourself with Buffer Babies or Caracream: www.Marci-kids.com, www.refluxsolutions.com. My daughter reacts to even trace amounts of milk. We buy the prevacid capsules otc, break them open, and use Buffer Babies to make a compound with the beads. Also I would keep her on Neocate only for at least a month before adding any solids into her diet. Kids w/one allergy are more likely to have additional allergies, so you'll want to add foods slowly one at a time so if she has a reaction you know the culprit.

My daughter has severe milk allergy. I know all about the constant vomiting, disturbed sleep, coughing and congestion. We saw minimal improvement on nutramigen and more on alimentum ready-to-feed but she never got better until neocate. Within one feeding of neocate she stopped arching/fussing with her bottles and the vomit slowed. She started SLEEPING. By the third day she had completely STOPPED vomiting. Please try neocate now, and if it helps (I really think it will) keep her on it and don't even think about trialing milk again until she's a year old. Also, be vigilant in checking labels- so many foods and meds contain milk or trace amounts of milk. And don't forget, get some new doctors on board asap!!

Nov 29, 2010
dcd
I wanted to add, if you are giving both Zantac & prevacid make sure you split the doses, ie one at night one in the morning. If you give them too closely they can cancel each other out. (read more about how h2 blockers & PPIs work at Marci-kids or elsewhere online.) the ppi is much more effective than the h2blocker- the body can develop a tolerance to h2blockers and they can stop working. You will probably find that zantac doesn't do much, once you get the prevacid dosing right you won't even need it. Make sure you read up on how to dose and administer PPIs like prevacid (many doctors say babies metabolize the meds faster and prescribe twice or even three times the recommended dose, there are moms on here whose kids never got relief until the higher dose. Also, remember that prevacid needs to be given on an empty stomach, 30 mins to 1hr before a meal or it won't work. Unless you're using a compounded version, then you can give it without regard to mealtimes. Either way I think you need to get off those solutabs. If you don't want to do the compound, you can buy the 15mg capsules in the store, break them open, and give her the beads with a spoonful of rice cereal. The OTC capsules are the same as the solutabs, you can confirm w/your dr.)

bur I really think your main problem is going to be the milk. Lots of kids have both reflux and mspi, and we used to think my daughter had terrible reflux until we switched to neocate and her symptoms went away. I still give her a very small dose of prevacid each day, just to be sure, but I don't really have reason to believe she needs it. We plan to take her off it pretty soon but for now are just enjoying the calm of a comfortable baby!

Nov 29, 2010
dcd
Another good site: www.refluxrebels.com. Check out the MSPI Basics tab, especially the secion on Feeding and Hidden Dairy & Soy.
Nov 29, 2010
dcd
In my second post I meant to clarify that the Prevacid capsules contain the same MEDICINE as the solutabs, minus the milk. Not that "they are the same." (Your doctor can confirm this.) You can give the Prevacid capsules or the compounded Prevacid to a baby with severe MSPI without any problems since neither forms have milk. But the solutabs do have milk, so a very sensitive baby will react to these.

I know I keep adding on, but if you haven't already, check out the Neocate website. It contains TONS of good information, especially under the Parents tab > What is Neocate?, Is it a Milk Allergy? etc.

Nov 29, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
I am wondering about a true dairy (and or other) allergy, given her reaction to the mixed formula. Did anyone discuss that with you at the ER? Also, I strongly encourage you to seek a new pediatrician, a referral to a pediatric GI specialist and a pediatric pulmonologist. It does not sound as though your baby's doctor is taking seriously the situation you are observing. You daughter has a right to quality care and it doesn't sound as though she is getting it. I agree with the others that a trial of neocate is probably well worth it, but again, she may have numerous things going on, and it can take years to figure this all out if you are not getting quality care from physicians, so again, if it is AT ALL possible, find a new pedi, AND get referrals to specialists in PEDIATRIC gastroenterology and pulmonology.

((HUGS)) to you, it sounds like you have had little support through the past 6 months, and that is a long time to watch you baby suffer and not know what to do about it. I've been there, as have many others here, and we are absolutely here for you...

Nov 30, 2010
runwithyou
Thank you so much the advice! I am in Canada so I have to ask my family doctor for a referral to a new ped... which I am going to do! And a referral to the other doctors mentioned! We have started giving her the prevacid compound. We can't do the capsules because she is terrible at swallowing anything. She has HUGE swallowing issue. I had NO idea that the tabs contained milk. Thank you so much. I am going to start her own neocate and hopefully we can get it covered through our insurance. I am seeing the family doctor on Thursday to ask for referrals and so on. So I will ask about the neocate then. I know some kids have trouble with the flavor? Can I flavor it with something to help her take it? It was hell getting her on the nutramigen...
Dec 01, 2010
dcd
Good for you! Definitely get her on the Neocate ASAP. You may have some trouble with the flavor, but please stick with it. She will get used to it, especially since she is so young. And she may actually surprise you. It was hell getting my daughter to take the Nutramigen/Alimentum. And when I tasted the Neocate in comparison to these, I thought there was no way she would ever drink it. But, we made the switch cold turkey and she only skipped one feeding before she got the message. She drank that first bottle and hasn't looked back since.

For my daughter, the cold turkey approach worked well. I know other moms that add it in gradually, mixing one ounce Neocate to every six ounces Nutramigen and gradually adding more Neocate over the period of a week or two.

Neocate does make flavoring packets you could try to add to the milk. If you call Neocate they can send you some samples of these. My daughter really hates anything added to her milk, so she just drinks it plain. I know other moms have tried adding Nestle chocolate powder, rice, applesauce, vanilla extract, etc. to flavor it. But I would stongly caution you against adding anything other than the Neocate packets given your daughter's serious reaction to the milk-based formula. There is no way of knowing whether she might have a similar reaction to something you try adding to the Neocate.

Just prepare yourself for a rough couple of days making the Neocate transition (and maybe you will get lucky and it won't be!) - but remember it's important to give it a fair trial. I REALLY think it will make a difference for you. Your daughter's trip to the ER seems to indicate she has a severe milk allergy and her continued symptoms on Nutramigen seem to indicate she is still reacting to the hydrolized formula and needs an amino acid based formula. I've been there and it really did make all the difference in the world for us. I have my fingers crossed for you!!

Dec 01, 2010
dcd
Also, I'm not sure how it works in Canada as opposed to here, but to get your insurance to cover the Neocate you may need to have a diagnosis of milk protein allergy or multiple food protein allergy. Given your daughter's seeming anaphalactic reaction to milk and trip to the ER (combined with her other ongoing symptoms), I definitely think your new pedi or pedi GI will make this diagnosis. But just my opinion if it were me, I would not wait for the diagnosis, insurance, etc. to work itself out - I would try to Neocate now to see if it gets your daughter any relief. If so, that's another point in making your case that she NEEDS the Neocate to be healthy - i.e. if you can argue she never improved on the other formulas but experienced a turnaround with the Neocate they are more likely to cover it. Good luck!
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