Posted By Posting
Oct 04, 2010
tinytanner
New Here
Hi. I just wanted to connect with others who are going through this horrible rollercoaster. I am welcome to ideas, reccomendations, or anything those of you with experiance in this may have. I am really worried and it's so hard to see any light at the end of this tunnel. I am not worried about my sleepless nights but only about the pain and suffering of my little angel. My little Mason was born 5/21/2010 at 39 weeks via c-section at 9lbs 2oz and 21.25 inches long. He was a puggy little man and perfect. Today Mason is 4.5 months old 15lbs 5oz and 25.5 inches long. He hasn't had a period of weight loss yet but I forsee one soon if something doesn't change. At 2 months old we headed to the dr with was what we thought to be a bug or something. Mason had developed a light rash on his body and had loose stools for a week. We were told it could be a bug which causes babies not to tollerate Lactose temporaraly or Milk Protien Intollerance (MPI). We switched to soy for a week and all went normal right away. We switched back to reg formula after a week per the dr. He said if tha rash comes back its MPI and to go back to soy. Well, he didn't tollerate the regular formula so we stayed with the soy but he still wouldn't eat so back to the dr. We were told he has GERD to stick with the soy and start Zantac. Well immediatly after his first dose we had our happy little man back. We had a med increase once in the last two months which helped however after the recent formula recall we switched Mason to the other top brand soy and started to mix with Nutramigen. (don't want our little man on soy too long due to the estrogen thing) Well he stopped eating all together. Maybe 2oz every 9hrs or so. We say a Pedi GI last week and were told to go 100% Nutramigen for a week and no med changes. Well he will now eat but not much. He takes a botle every 4-6 hrs but will only take 3oz before refusing more. I can hear his little tummy growl and groan after just one little suck. However, I am able to feed him while he sleeps. He will take 8-10oz a night as long as I get the bottle in him while he is still sleeping. He sleeps inclined in our bed everynight to keep the food down while sleep feeding. We have thickened feeds, started rice cereal by spoon, increased his Zantac to 1.2ml 3x a day, started Nutramigen and still no improvement over last week. I was told at the Pedi GI that he dosen't fit the normal symptoms of GERD. Since when is there a normal little box everyone fits in! I am frusterated and don't know what to do next. I feel like I need to be way more pushy with the Pedi GI. She hasn't even requested any tests at all. Any thoughts or reccomendations would be helpful.
Oct 05, 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
If he will take soy formula and he does well on it, I would stick with it instead of trying to force the Nutramigen on him. I would not worry about the estrogen thing. Millions of baby boys were brought on soy. He will be on it for just a blip of his lifetime. Nestle Good Start Soy seems to be very agreeable to little ones. If you cant bear the throught of soy formula you can try the lactose free milk based one. Similac orange can, Natures One has an organic lactose free brand and Enfamil has a low lactose called Gentlease. Given he had a rash though, it is pretty safe to say it is a mild protien allergy not a lactose issue.

I dont have a lot of faith in Zantac for our kids that dont fit the "mold". I would get Zegrid OTC and then order the caracream mix from refluxsolutions.com. You will open the capsules, add water and the caracream. That's it. It is significantly more effective than Zantac.

Careful with the rice cereal. Lots of kids on this board struggle with rice cereal for some reason. They tend to do better on oatmeal.

Oct 05, 2010
dcd
My opinion based on your post is that your son has a milk protein allergy - the rash, loose stools, and fussy feedings are classic symptoms - and the fact that he does well on the soy is further evidence.

If he can't tolerate the Nutramigen I would guess his allergy is moderate to severe. (The milk proteins in Nutramigen are hydrolized, or broken down, but are still in "chains" that can cause reactions in particularly sensitive babies.) In that case he will probably need to stay on the soy for a while or switch to Neocate or Elecare - prescription "elemental" formulas in which the milk proteins are completely broken down into amino acids, i.e. no protein "chains" to cause reactions. Here's an illustration from the Neocate website: http://www.neocate.com/aaa_neocate/13889-neocate-formula.html

If he can't tolerate the Nutramigen he will not tolerate the Gentlease or other "partially hydrolized" formulas available in stores - these are even less broken down than the Nutramigen and, if he has MPI, will cause his symptoms to get even worse.

My daughter did ok on soy, but in the end it was too constipating. We saw minimal improvement on Nutramigen, and a little more improvement on Alimentum (because it turned out she's allergic to both milk and corn, and Nutramigen contains corn while Alimentum doesn't) - but she is a new baby on Neocate. Her throwing up has stopped. The fussy feedings have stopped. She is sleeping through the night. Her rash is gone. Her cough and congestion are much improved.

Just so you know, the Neocate is extemely expensive. We are currently battling with our insurance company to get it covered.

If your baby has both MPI and reflux, I agree with Vigilantmom - you need to get on a PPI like Prevacid, Prilosec, or Zegerid (the refluxsolutions.com suspensions will allow you to administer the drugs without regard to mealtimes or an empty stomach, which is so much easier). It may be that your son has built up a tolerance to Zantac, which is very common.

But it also may be that what you think is reflux is all actually related to the MPI. We thought my daughter had reflux for months and months but after no improvement on even high-dose PPI medication (and a million other things we tried!) we decided to have her allergy tested. That's when we discovered all the food and environmental allergies (we were stunned as neither my husband nor myself have any allergies).

In switching to the Neocate and treating the environmental stuff with Zyrtec and nasal sprays, she's finally feeling better at 7.5 months.

Oct 05, 2010
dcd
I also wanted to add that not only was the soy too constipating for my daughter, her symptoms only improved a little - it still has corn in it so I'm sure she was reacting to that ingredient.
Oct 06, 2010
kenneyhl
My son Levi is 13 weeks old. We figured out he has reflux @ 2 weeks. We have tried 4 different formuls (Currently Neocate) and he is taking Pepcid, Prevacid, Mylanta, Grip Water
be carefull what kind of cereal you use... my son;s nutritionist told me not to use gerber (it has milk in it) but use beech nut, but beechnut has hidden soy in it (my son has GERD & MSPI). Im now using Healthy times baby cereal because it is Wheat, dairy and soy free.
Oct 06, 2010
tinytanner
Thanks for the words of widsom ladies. Apparently it's not just my preferance to get him off soy but the dr seems to think that he may now be showing an intollerence to soy protien in addition to the milk allergy. It took about a month and a half for a reaction to the milk based formulas and now he's been on the soy for two and half months. I can't beleive they just don't do an allergy test to know for sure. It may be something I need to ask for apparently. The Dr told us to switch to Nutramigen first before trying any other meds. I agree that Zantax can be less effective the longer it's used and since my son was at first overdosed for the first 14 days he was on it I am sure that he has built a tollerence for it even quicker then most. We have been on Nutramigen now since last Thursday evening and also stopped the oatmeal and went back to rice since he has been on rice for months without issues and the oatmeal was started about the time we switched soy brands due to the recall (may be issues with oats??). He isn't crying when he eats anymore unless he just doesn't want it. He still won't eat much maybe 17oz a day and that's with night feedings so actually his intake has decreased since the formula switch. We started last night sweetening the formula, per the dr's reccomendation, with corn syrup and they bottles are going better but not that much. We'll see how he does today at daycare. I am most worried about dehydration since I barley get 5 wet diapers out of him in a day. Anyone else had a dehydration issue due to all of this?? If no improvement today with sweetening then I think I will call the GI and TELL THEM I want an allergy test for milk, soy, oats, and other stuff after that we can see if we need a PPI and for sure what formula is needed. I don't know why they don't do these tests more routine when they suspect allergies. Is the allergy test invasive or just blookwork???
Oct 06, 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
Testing on young ones can be very inconclusive so they tend to do trial and error instead. If they do better with out milk but fine on soy then it is just a milk issue. If after a few weeks they start having problems again then it is milk and soy so they move up to Nutramigen. If that stops working them Alementum ready feed... Each time you wait 2 to 3 weeks which can seem like an eternity when your little one is suffering.

Give him time to get use to the Nutramigen. It does taste aweful but he will get use to the taste. <5> On the dehydration, that is a huge worry for a mom when your child is not drinking. I was told 2 wets a day was OK. It was never OK for me though. Ryan actually had to have IV fluids several times his first year because he would shut down from drinking 100%. When I would take him in, they would do blood work to see if he was clinically dehyrated, but after the 2nd time they could tell just be looking at his eyes. 17 oz, while it wont put weight on him, will keep him from being dehydrated.

Careful on the amount of corn syrup you use. That is what I used with Ryan when he was constipated. It made him poop. If his stools get loose on you, you will at least know the source. I am not saying to not use it, just be aware of the effects on the other end.

Oct 06, 2010
dcd
Just something to think about - my daughter does not have a soy allergy but is allergic to both milk and corn. The only formula in stores without corn is the Alimentum Ready-to-Feed, which comes in the liquid 32 oz jugs. My husband thought I was crazy to suspect the corn allergy - after all, what are the odds of this baby being allergic to both milk and corn, especially since we have no history of allergies ourselves? But she is.

Ultimately my daughter couldnt' even tolerate the Alimentum RTF because it wasn't broken down enough. If your son still seems to be in pain after a week or two on the Nutramigen or Alimentum, it may be time to start thinking about trying a prescription formula.

It sounds like you think he has both MPI and reflux though - he might be doing better on the Nutramigen but still having pain from the reflux. I think it would be worth it to get a sample of the Neocate from your doctor's office and see how he does on it. If he does better you know that's the answer. If he stays the same you know you are also probably dealing with reflux that needs to be medicated with a PPI.

You will have to get a referral from your son's regular doctor to see an allergist for the allergy testing. It is not invasive. It's unpleasant, but it's over quickly. They can do either a blood test or a scratch test, but the scratch test is way more accurate and is preferred. You cannot have any false positives with the scratch test, but false negatives are possible.

With my daughter, they tested for 74 food & environmental allergies. I held her as they scratched her back with a little plastic stick 74 times. It sounds agonizing, and it wasn't fun, but it was over in probably 30-45 seconds. She calmed down right away, and I really don't think it hurt her that bad - a regular shot is probably worse (just quicker).

You then wait like 10 minutes and they come back in to measure her reactions. If she is allergic to something, a welp will appear at the prick corresponding to that allergen. Kind of looks like a bug bite. They measure the severity of the allergy based on the size of the welp and the amount of redness surrounding the welp. The allergens she doesn't react to will just look like a tiny pin prick you can barely see.

If you think your son has allergies I think it is completely worth it to have him tested. You'll find out exactly what is causing his problems and just how sensitive he is, which will help you moving forward.

Oct 08, 2010
tinytanner
Vigilantmom - i understand what you are saying about the corn syrup. this am we had a blow out. i had to change my shirt and give him a bath! he had also eaten a whole jar of sweet potatos the night before so maybe just to many carbs and corn syrup made it bad. since i am worried about dehydration i think i'll stop the corn syrup and just try vanilla flavor (dr also suggested) so we don't loose too much fluid with runny stools. We only had four wet diapers this past Tuesday and daycare writes down he has several daily but I would think they should be running out of diapers soon and they said they have plenty so it makes me wonder?? Anyway, thats the only sign of dehydration I noticed. He still drools, is very active, and does have wet diapers. They are just fewer and a little more yellow then before. At what point did you take your little one in for fluids? I just don't want to let it get too bad if he's not drinking enough. His GI wants us to start Prevacid 7.5mg Solutab twice a day and stay on the Zantac for four or five more days also. They also said to try giving him some Pedialyte between bottles, just an oz at a time so he dosen't get full but gets extra fluids. Oh course they said if you think he's dehydrated you need to get him to his reg Pedi right away. (like they will do anything other then send me to the ER!)
Oct 09, 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
IF your daycare is like mine, they change them every 2 hours... unless they are poopy then they change them off schedule. So you should go through about 5 diapers a day there. I assume they mark the sheet wet, dry or poopy? They have nothing to gain by saying that she is wet if she is dry. If you really arent sure though, take in a grocery sack and ask them to save her diapers for a day or 2 for you. I assume they write her name on the bottom of them?

As far as when I knew to take Ryan in, it was clear for me. When he was bad, he would not take anything to drink. Nothing, zero. I would have to squirt it in with a syringe. The skin on his face would get real thin. I use to describe his forhead as it looked like his skin was saran wrap. There was nothing between his thin skin and his skull.. no fluids.. if that makes sense and his eye sockets looked funny too. No one else could really see it but me until the first couple of times to the ER, then they knew what I was saying and no longer made us do a blood drawn before they fueled him up with fluids. It was amazing, he would look like a complely diferent person after they filled him up.

Why they tell you to go to the ER is because most peds wont do IV fluids in the office. Has to be done in the ER. If you are getting a couple of wet diapers you are getting buy. The tough part though is that there is no reserves in them and they tend to get sick more when they are running low.

Dream feed if you have to. I know a lot of people say not to do it because you will create bad habits, but do what you have to do. You can fix the bad habits after you figure out what is causing the pain and issues and get that fixed so feeding is not scarey for her anymore. Then I will walk you through how to break the bad habits. Been there and done that but it was worth it. If I didnt do dream feeds while I was figuring out how to fix him, he would have ended up on a feeding tube.

Oct 09, 2010
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
I agree that it sounds like your son may have a milk allergy. Do you have allergies/asthma/eczema on either side of the family? It's not necessary, but does increase the risk. We had mild relief from the Nutramagin (soy, not so much), but the only thing that really helped was Neocate, in our case. We started him on the unflavored and he still drinks it. His allergies are extreme (milk and others, plus EE), but I highly recommend trying it, if your son seems distressed with the other formulas. El
Oct 11, 2010
tinytanner
vigilantmom - You will never know how much your wisdom means to me. Thank you for following up with me and sharing your ideas. Your right my daycare changes every so many hours unless poopy or just way to wet. They do mark what kind of diaper they changed and once or twice I have noticed Dry marked. I guess I may be over-reacting about the diaper thing. Your right they have nothing to gain by saying he's wetting if he's not. I guess I just don't get why he eats and pee's for them and not me. I'm scared that I only get 4-5 wet diapers when I used to get 8-10. It's so hard to know they are more comfortable with someone else feeding them. I haven't noticed any of those signs with Mason yet so I guess he's not overly dehydrated right now. I check his soft spot all the time and look at his eyes cause those were the only other signs I could find to look for. Not that bad yet I guess. I feel so bad about dream feeding all day. I feel like he won't learn to eat proper if I do but on the other hand he won't live if I don't so I guess bad eating habits are the least of what my worried need to be right now. Out of curiosity how long did it take - once you saw a specialist - to tune into the best treatment for ryan? was it months, weeks? it feels like they won't do anything major until we are at the last thread ya know. until he's lost weight, is dehydrated, and is completley miserable. it's just try this try that, wait and see, he will eat if he's really hungery. HE WON'T EAT THAT IS WHAT I'M TRYING TO TELL THEM! Ohhh........ deep breath.......I can do this. I have to do this. Oh this day is just plain hard.
Oct 11, 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
To be honest, I hit a wall myself. Countless doctor appointments, no answers, dream feeds, not feeling like anyone was having a normal life, the GI wanted to put him on a fedding tube and the topper was I was in the ER with him getting fluids for again when 2 of my friends died and I didnt get to either of them in time to say good bye. Safe to say I got pissed at the medical field. The University of Missouri, home of MARCI Kids is 6 hours from here. I called them and asked what it would take to be a patient down there. Dr. Philips from the Reflux Solutions lab asked me what was going on, I sent him my Excel sheet full of info. Given the info I gave him, he believed it was a medicine issue. He sent me a month supply of Caracream, told me to try that first and if that didnt work, he would get me in with their pediatric GI. A week late I saw a huge improvement, 6 weeks later he went from the 2nd percentile to the 50th. We never looked back. That plus Mirilax and no more Motrin and we have never had another feeding strike. It was 14 months of try and see games before that though. By the time we figured out what he needed he has some adversions to eating. I had to pull him around the neighborhood in his wagon while my daughter snuck bites of food in him. All the neighborhood girls got in on the "fun". None of the docs or specialist here figured him out, Philip and David at Marci kids did. It was a long 14 months and it took another 6 months for everyone to "get back to normal" after all of it. So.... All I can say is take matter in your own hands. Read, research, try different things, document document document and see if you can find causes and effects. Listen to your gutt, shut out nay sayers and dont give up. You will find the right combo for your son. Dont worry about him learning how to eat properly. This time is a blip in his life time. Do what you have to do to get his nutrients and fluids in him while you figure out what is causing his issues. You can work on the age appropriate feeding habits when he is feelng good. Kids are resiliant.
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