Concern Over My Grandson

[EmptyNestMom]

All,

This is as much a "I have to share with someone" as a request for information. I have a new Grandson, Jack, born about 5 weeks ago. He has been having problems. My DIL was breastfeeding but he would take 45 minutes and then be screaming...would eat a bottle after. So they went to a lactation specialist to see what could be done. This went on and he still had problems and began to just scream and not want to eat but need to eat. So they went to the doctor...he was diagnosed with milk allergy and acid reflux. They have him on a special formula and no breast feeding. At first they had him on Zantac but after a week he was still just screaming and flailing his fists when the bottle was presented and the doctor changed his prescription to Prilosec. If he hasn't improved and isn't eating well without bouts of screaming fits by next week they will take him back in and the doctor will put him on a special formula which is a prescription and very, very expensive.

I haven't even met the little guy yet! Anyone experience anything like this? I am so worried...and his parents even more so! :(

[BucknellAlum]

I am curious how they diagnosed the allergy? I was under the impression that breastmilk was okay for a milk allergy, as long as the mother stayed away from dairy.

My son was fine on breastmilk, but could not tolerate any of the regular formulas. It was okay a bit because I was home fulltime, but it was a little frustrating to know that I was his only source of food. He later could tolerate Alimentum, which was 3x as expensive as regular formula. We didn't really ever use it, he transitioned to while milk in the cup. I suppose he didn't have a true milk allergy (no one told me he did, just an intolerance for formula) however.

THe little I read just now while Googling seems to indicate that breastfeeding can be done if the mom avoids dairy. Did he also have any rashes? That seems to indicate allergy too.

[MinEaston]

My nephew, who is just about 4 months, is very similar. He had terrible trouble latching on at the beginning, so they'd give him a bottle of expressed breastmilk after every attempt. Early on they also tied his more fussy moments to dairy that my SIL consumed, so she cut it out entirely. Shortly thereafter she went to exclusive bottle feeding of expressed breastmilk. She pumps regularly and has been able to keep up with him. She will switch him to formula when he's around 6 months old.

My nephew's pediatrician (and my brother, who is an internist) did work together to tweak the medicine. I believe my nephew is on Prevacid, and they've changed his dosage a couple of times as his digestive system has matured. The first 6 or 7 weeks were really tough on them (fussiness, screaming, arching his back), but all along he was gaining weight well so they knew he was OK.

My guess is that they cut out breastfeeding to rule out anything that the mother might be eating, but if they think it's milk, then she should be able to express milk for the baby if she cuts it out of her diet entirely (she needs to become extremely label conscious - it's amazing where milk or milk derivatives can be found!).

It's OK to be worried all around! I believe it will get better, as your grandson gets older and his tummy matures, too. Around 8 weeks I remember my SIL telling me, "wow, now I know why I had him!" And my nephew is an absolute happy delightful child.

Hang in there!

PS - I'm sure my SIL would be open to emailing you or your son/DIL with her experience. PM me if you want to pursue that.

[aggie94]

This is probably not what you want to hear, but I would be VERY wary of any pediatrician who directed me to stop breastfeeding without first attempting an elimination diet (which can take time to see any significant changes). At a minimum, your DIL should be pumping and feeding expressed breastmilk (that is, if she *wants* to breastfeed). If the baby will take a bottle of formula, he'll take a bottle of breastmilk. It is highly unlikely your grandson is "allergic" to breastmilk, but it's very likely that he's having an intolerance or sensitivity to something in her breastmilk. The most common is cow's milk protein, which can be found in almost everything (including non-dairy creamer and McDonald's french fries, as an example - I know this b/c I am dealing with a 6-week old that has the same issues). The fact that a doctor would tell your DIL to stop breastfeeding without first determining the underlying roots of the issue are would be enough to send me to another doctor.

If the baby is gaining weight and continuing to have several wet diapers a day, there is no reason to be concerned. If not, then I can see switching to a bottle temporarily, but again, there's no reason to switch to formula if your DIL can pump breastmilk. But it sounds as though the baby is refusing a bottle, so if I were your DIL, I'd consider putting him back to the breast or trying different bottles/nipples, as babies can be very particular, and contacting an IBCLC-certified lactation consultant (if the first one was not that helpful, find another).

While I trust and respect my pediatrician, I do not think most peds are very educated on breastfeeding and related topics, and too many are quick to suggest formula when they should be doing more to support and encourage exclusive breastfeeding. There are very very few people who CANNOT breastfeed. I have gotten tons of great assistance and resources from my lactation consultant, including a number of articles and other information on dairy allergies in infants. If you would like me to forward them to you, feel free to PM me with your email.

[BucknellAlum]

This is probably not what you want to hear, but I would be VERY wary of any pediatrician who directed me to stop breastfeeding without first attempting an elimination diet (which can take time to see any significant changes). At a minimum, your DIL should be pumping and feeding expressed breastmilk (that is, if she *wants* to breastfeed). If the baby will take a bottle of formula, he'll take a bottle of breastmilk. It is highly unlikely your grandson is "allergic" to breastmilk, but it's very likely that he's having an intolerance or sensitivity to something in her breastmilk. The most common is cow's milk protein, which can be found in almost everything (including non-dairy creamer and McDonald's french fries, as an example - I know this b/c I am dealing with a 6-week old that has the same issues). The fact that a doctor would tell your DIL to stop breastfeeding without first determining the underlying roots of the issue are would be enough to send me to another doctor.

If the baby is gaining weight and continuing to have several wet diapers a day, there is no reason to be concerned. If not, then I can see switching to a bottle temporarily, but again, there's no reason to switch to formula if your DIL can pump breastmilk. But it sounds as though the baby is refusing a bottle, so if I were your DIL, I'd consider putting him back to the breast or trying different bottles/nipples, as babies can be very particular, and contacting an IBCLC-certified lactation consultant (if the first one was not that helpful, find another).

While I trust and respect my pediatrician, I do not think most peds are very educated on breastfeeding and related topics, and too many are quick to suggest formula when they should be doing more to support and encourage exclusive breastfeeding. There are very very few people who CANNOT breastfeed. I have gotten tons of great assistance and resources from my lactation consultant, including a number of articles and other information on dairy allergies in infants. If you would like me to forward them to you, feel free to PM me with your email.

I agree with everything above!

I also wanted to mention that taking 45 minutes to breast feed is not unusually long, IMO. I remember feeding one side, changing the diaper and burping, then feeding the other side, and it easily could take 45 minutes. Second and third babies are a little more efficient (or I guess it's your breasts that are a little more efficient!) but a 45 minute feeding would not raise red flags for me.

[aggie94]

I also wanted to mention that taking 45 minutes to breast feed is not unusually long, IMO. I remember feeding one side, changing the diaper and burping, then feeding the other side, and it easily could take 45 minutes. Second and third babies are a little more efficient (or I guess it's your breasts that are a little more efficient!) but a 45 minute feeding would not raise red flags for me.

Agreed! Also, the lactation consultant should be weighing the baby before and after feeding, to determine how much he is taking in at a feeding. If he's truly not getting enough, that can be addressed, but if he is consuming an adequate amount of milk but still seems hungry shortly thereafter, he may just be getting too much foremilk and not enough hindmilk. Is your DIL feeding on both breasts at each feeding? If so, she should switch to "block feeding," which is feeding on just one breast per feeding (or some times for even longer periods than that). If baby is getting too much foremilk, which is full of lactose and digests very quickly, he will get hungry quickly (and he'll also likely be gassy, bloated, and have explosive watery stools). If she feeds on just one side, he'll get more of the hindmilk, which is much fattier and will keep him satisfied longer. A good lactation consultant should be able to recognize any of these issues if they are going on.

Good luck to her and your DS. Breastfeeding is one of the hardest things I have ever done.

[Kerri]

Um, don't all babies do this? Mine did. :rolleyes:

No, with my first it was horrible. The only time he wasn't screaming was when he was eating or sleeping, and he really didn't sleep much. He was diagnosised with severe acid reflux and we found that priolsec worked fairly well, but wasn't the cure. I agree with the comments that a milk allergy seems like too quick of a diagnosis, but if switching to formula helps your DIL, so be it. What I did with the blessing of my pediatrician is to nurse my son every 2 hours for 20 minutes on a side, took lots of walks with my mp3 player turned up so I couldn't hear the screaming, and bounced on a bouncy ball. Try to survive until months 3 or 4 when it gets better.

[tholbrook]

Same here - I wasn't sure I would survive all the wailing, until we got to the 7th week and things started to settle down. And it sures seems like my DD breastfed every hour or two, 24 hours a day, for several months - and yes, many times for 45 minutes at a time, or longer. I, too, would be wary of a doctor who advised me to stop breastfeeding without attempting to identify potential triggers in my diet that could be causing the problem.

[Beth]

I didn't read everything here, but I am with Eva on this -- try an elimination diet if at all possible. If he is not growing and gaining weight, that's one thing, but if he is getting enough to eat it may well be that it is something in her diet. We went through that and with DS1 and less so with DS2 because we had been there before. In my case, I could have no dairy at all (the nurses told me cheese and yogurt might be easier, but it was the worst for us) for the first 4 months and he outgrew it around 4-5 months. DS2 was also more sensitive to spicy foods and certain vegetables. We went through a lot of Mylecon -- not sure if that is the correct spelling but gas drops for baby's tummy. They didn't solve the problem but they helped some while we got things figured out.

Dairy may be an issue -- it often is, but it is not necessarily an allergy -- he may just not be able to break down all the proteins yet and get stomach upset from it. The gas drop may help with some of that upset. His system is still working on the enzymes to process them and he will get there if that is his issue. Dairy allergies, from what I understand, are more likely to include vomiting and diarrhea.

ETA -- read more and agree that long nursing is not that unusual, especially if the baby has tummy upset -- some of that may be for comfort. We tried soy formula with DS (I continued to breast feed but he most often got a couple of ounces of formula at the end of the day -- he tanked up and then slept through the night. Since he didn't sleep during the day, it was well worth it). We later tried Carnation Good Start and he tolerated that by the time we tried it. It has the milk proteins broken down a bit for easier digestion and was less expensive, easier to mix and smelled better than the soy we tried. But I would encourage her to not give up on breast feeding and to be patient with the elimination diet. We found they while they were telling us it would take about 3 days to see if the elimination made a difference, for us it took about 5 days. I tried eliminating dairy 3 times, the second figuring that I might have gotten some butter or milk cooked in something I didn't know about, and stayed with it longer the third time because a light bulb went off when I was eating some cheese and DS was crying more than usual. That was it....

Wishing them lots of patience and best of luck getting through this time.

[Carrie W]

I think you've been given some great advice so far. And take comfort in the fact that your DD is doing all she can to love and care for her baby.

I'd also like to gently remind folks (and I'm sure this will stir up things far more than I'm intending, but...) that there are some of us who unfortunately are not able to exclusively breastfeed due to inadequate supply for physiological and anatomical reasons, in spite of frequent meetings with lactation consultants, and trying all sorts of interventions. :( And we're not trying to be evil, lazy moms by supplementing with formula after being able to only feed and pump a few milliliters.

Sorry, hormonal soap-box preaching is now over. :o

[krhm]

Hugs to you, EmpytNestMom...it is hard when you're far away (I assume, since you say you haven't met him yet) and he's so little. I'm sure you feel worried for both your grandson and your child who is going through it all!

My first DD also had similar issues. Eventually they just straightened out. And DD2 ended up on that prescription formula too. It is hard to deal with and not knowing what is causing the problem makes it worse.

That said, I assume the pediatrician has also ruled out other things and did some other tests (DD1 had to have an Xray while she was drinking a bottle). My SIL was diagnosed at 10 weeks with a hernia that had to be surgically repaired. They thought she had milk allergies up until they found the hernia.

[hollysmom]

Robin had a touchy tummy early on. I went down to oatmeal and soup as my diet for a long time, plus the ped. prescribed a muscle relaxant (don't remember what now - Levsin?) to give her.

Today - at 7 - she eats whatever she wants and handles Tex-Mex and salsa like an adult.


SSM

[BucknellAlum]

hollysmom, thanks for bumping this up. I have been wondering how EmptyNestMom's grandchild is doing, and if she's gotten a chance to meet him. Maybe she is visiting there now and can post an update soon!

[ssgold]

I just want to add another experience. My daughter spit up a lot, had frequent very green mucousy diapers and was very gassy from birth. I tried block feeding to deal with a foremilk/hindmilk imbalance. At 5 weeks she had blood in her stool. I eliminated milk and soy and eventually 7 of the top 8 allergens. Her spit up improved as soon as I stopped milk but the blood remained. We did a three week trial of Nutramigen while I stayed on the diet and pumped. I went back to breastfeeding for 3 weeks and the blood came back. My daughter ended up on Elecare, the expensive prescription formula. Luckily, it is covered under our insurance. Through the entire process my daughter always gained weight and was above the 75%.

Last month at a year old, we tried milk by adding an ounce to her bottle every day (under the guidance of an allergist and GI). By the 4th day, her diapers were mucousy and by the 6th day, there was blood. Obviously, she was and still is allergic to milk. Given that we were not sucessful with an elimination diet, we suspect that she was/is allergic or intolerant to something else too.

The process of being on a strict diet where you have to cook almost 100% of your food, pumping every 2 to 3 hours and taking care of a newborn was one of the hardest things I have done but it was the only way I would have done it. I was exhausted. I needed to know I tried everything before I stopped breastfeeding. It is a very personal choice and you have to know what your limit is. The good thing is I have happy, healthy daughter and I donated over 900 ounces of breastmilk to an adopted newborn baby!

I know that reflux is common in babies with allergies and many improve on medicine and formula or breatfeeding with an elimination diet. Good luck and I hope your grandson is doing better!