don't know what to do - dr suggests quitting :(

[deckchariot]

I don't know whether to post this here, on the allergy board or on CRC, so mods feel free to move it...

dd2 was diagnosed with reflux at 3.5 weeks and with MPI (and likely MSPI) at 5 weeks.  We've been dairy free since then, and on meds for reflux.  It's better, but not totally controlled.  Our pediatrician has been great, but feels like she's exceeded her level of expertise with dd2, so sent us to a pediatric GI specialist who we saw today. 

Based upon her medical history and lack of responsiveness to meds, and the fact that dh and I both have penicillin allergies (he's found a link between parental drug allergies and bub protein allergies) and I'm allergic to sulfa drugs as well....he's convinced the reflux is due to the milk protein allergy.  And even though I'm dairy free, she is still getting milk protein - just in the form of human milk protein because she's ebf.  All mammals have a milk protein in their milk, most bubs that have a milk protein issue have the biggest problem with cow's milk (some do fine on goat's milk, and I suppose in theory you could try sheep's milk or yak milk if you've got it!).  Human milk is (obviously) intended for human consumption, so most bubs do fine with the human milk protein.  In dd2's case, she is even having trouble with that.  So GI dr says "if you want her to be asymptomatic, you have to stop bfing and switch to an amino acid based formula that doesn't contain that protein".  I cried 

He then went on to say that I'm not going to cause her long term damage or harm by continuing to bf (since the dairy/soy elimination has taken care of the blood in her stool), and she will likely outgrow the allergy by the time she's 12 to 15 months. 

So now I have to decide what to do - do I keep bfing and just manage her symptoms as best we can (which is where we are now)?  Do I quit entirely and go to formula?  Do I do a combo of both?  I LOVE LOVE LOVE bfing and I know that there are soooooooooooo many benefits to both me and dd2 to continue (beyond what it does to her GI-wise).  But at the same time, I hate her being in pain from it to.  Part of me cries because I feel like I'm poisoning my child (which I know isn't true, but feels like it) by bfing, but then part of me looks at her when she is all snuggled at the breast and I cannot imagine giving that up.

I bf and held her while she slept for 1.5 hrs this afternoon while dd1 was napping and just cried 

[Jenn+Ethan+Emily]

(((((hugs)))))

[deb]

Aww, so sorry you've got that decision on top of your already-full plate.

Can you try doing both for a while and see how you feel and how she reacts? If for whatever reason the elemental formula doesn't work out, you'll still need to have a supply of your own anyway.

Will he be able to give you a prescription for the formula?

Lots of factors to consider.....  

[MasynSpencerElliotte]

{{{hugs}}}  

[Shiv52]

{{{{hugs Michelle}}}}

My friend went through something similar and did give up BFing and almost instantly regretted it and in the end she just found it too hard to give it up.  She is now on a soy/dairy/gluten/oat free diet and her LO is 8 months and still EBF and doing VERY well.  She tried the formula for 3 weeks while maintaining her supply and didn't find it made a huge difference so going back to BFing was an easy decision for her. 

It so hard to know what to do for the best but I totally understand how you feel.  

He then went on to say that I'm not going to cause her long term damage or harm by continuing to bf (since the dairy/soy elimination has taken care of the blood in her stool), and she will likely outgrow the allergy by the time she's 12 to 15 months.

For me this would be the crux.  Given that the diet is helping and the doctor wasn't concerned with longterm issues, I guess you have to decide if her symptoms at the minute at manageable with the diet and meds.  If you feel you can manage them and she isn't too distressed then it may be worth sticking with BFing for all the other benefits it gives.  

[{{{hugs}}}

[Yazzie]

Big big hugs Michelle

Can you maybe give the formula a try to see if it makes a difference, and then decide?

[Mashi]

Lots of hugs Michelle. It is hard. I gave up BFing with DS's MSPI, although I did it before I knew what was wrong - I just could not continue BFing a baby who screamed ALL THE TIME and puked on me during feeds and for an hour afterwards only to want to feed again.  When we did find out that it was MSPI, I can say that I would have stopped anyway.  I know lots of women here go on extreme EDs but it is not for me...I was struggling with too many other things as it was to have been able to continue to BF on an ED and all of the strength and emotion required to do so.

I felt guilty, sad, upset...there were SO many emotions surrounding quitting BFing and it did take a long time to get over them. There are times now when I want another LO just so that I can successfully BF.  But the thing for me is that within a week of DS being on hypoallergenic formula he was a different child. He was NOT a screaming crying baby who could not sleep and who had poops that exploded out the back of his shirts and into his ears.  Within another week, it was like someone had snuck in and changed my child. And the emotion that went with that balanced it out for both DH and I.  We really felt we were able to move on and be a happy family without the MSPI ruling our life, you know?

I am not trying to push you into stopping, not at all, and I don't want anyone to think that. There are a lot of strong amazing mothers here who have pushed through very tough times to continue BFing, but choosing not to do that does not make you weak or any less of a good mother for taking a different route.  My son is healthy healthy healthy, he thrived on formula, he has had very few colds or illnesses (the only times he has had them were when we travelled and the exposure to new and different germs has gotten us all sick iyswim) and he did outgrow the mspi at about 14 months or so. 

As mentioned above I know cost is a factor...we were fortunate that in England and Germany the formula was paid for through insurance but I know that is not always the case in the US.

Whatever route you choose Michelle, I hope you find peace in your heart with it and we are here to support you xxx

[~ Vik ~]

(((hugs))) Michelle You've gotten fantastic thoughts so far, and I feel that I have nothing to add that hasn't already been said. But couldn't read and not post xxxx

[Sarah - Enfys' Mum]

More hugs Michelle, I can't imagine how difficult a decision this must be.  You will make the right decision though. 

[firsttimemummy]

Topping up the hugs - I think that you need to do what YOU want and are comfortable with.  There is no right or wrong answer, and she will do fine, whatever you decide. Sooo many hugs, you are doing a fantastic job xxx

[deckchariot]

money is definitely a factor - the formula is ridiculously expensive and insurance will not pay for it   Some of you know our financial situation, and we do receive help with food (not food stamps, but WIC for those in the US who know) and they won't cover it either. 

The GI specialist actually didn't think it was worth it to do a full ED - I asked.  He said that it really appears to be the protein issue, and I've already eliminated as much of that from my diet as I can by going dairy/soy free (and so I'm not eating anything other mammal dairy either).   So I "guess" that's the good news....

And she has gotten better, but it's definitely not gone altogether.  And yes, I am considering doing some of both (bf and ff).  I thought about doing a 5 day formula trial, and pumping to maintain my supply, but right now the time needed to do that seems overwhelming to me, giving all that's going on in our life already

thanks for the hugs and for being a sounding board for me!  I'm definitely interested in hearing other mom's stories.  Thanks Shiv and Mashi  - no offense taken

[Love, laughter, & PJs]

Big hugs, Michelle.  What a tough spot!!!   I can't imagine.  And I can't believe insurance won't pay for the formula that's medically indicated!  Well, I can in this bogus country but you know what  Imean. 

Sounds like partial FF might be the way to go.  But whatever you decide, we're behind you.  Use us as a sounding board all you need to. 

[Edesanja]

Hugs Michelle. That totally sucks that the HAF is unaffordable . How unfair to have your options potentially limited.
I think I've written this on one of your other threads, but anyway...
DS had reflux and MPSI. I was also avoiding eggs. He's always had tummy troubles too. I AGONISED over stopping breastfeeding. I felt SO awful at stopping at 7 months. In the end I do think it was the best decision because it was just doing me in emotionally and mentally trying to analyse everything I ate and his symptoms and got to be even more impossible once he was on solids. My mind was constantly whirring and I couldn't stop it. I had drawn a line in the sand at being gluten free- I just didn't think I could do that without starving or it impacting my family more. At 7 months, that was the point we were at - things weren't getting better and gluten was the only thing I had left to try.

With the benefit of hindsight I can see that yes, Neocate made things a bit better for us, but no it didn't solve all our problems. If I'd continued to do gluten free, what next when that didn't 'fix' him either? Having started solids complicated things a bit more - at least you'll have that variable out of the way. DD had been a food refusing FTT MPI refluxer but with her eliminating dairy was the holy grail. Once I did that I had a totally different girl, reflux was manageable (still medicated) and I guess I was looking for a similar key to 'unlock' J, but there wasn't one.

Pumping is so hard when you've got another lo and your littlest one is such hard work as it is though I like the idea of knowing without giving up your options. It's such an effort though, and then there is the risk that your supply will drop

[RachelC]

Just want to {{hug}} you!

[hrk]

Michelle, how interesting about the penicillin allergy info.  My brother is allergic to penicillin (I don't know if I have ever had penicillin), but my grandma/mother/brother/me are all allergic to sulfa.  I suspect H was mspi, since none of the soy/regular/lactose free formulas made him any better. 

Heath was on a hypoallergenic formula; I couldn't keep my head above water with the feedings/sleep dep/etc.  I would have needed a lot more support than I had.  (The lactation nurse never visited me in the hospital, and she didn't really provide a solution that helped with the bfing issues I was having.)  Personally with what we have been through and looking back, I don't regret the decision to go to formula.  I regret that he was uncomfortable/gassy/refluxy/up all night/fussy/cranky/etc.  It would have been wonderful to have H bfing AND him happy/healthy.  I felt I had to do something to get him feeling better, and bfing wasn't the cozy/happy/bonding time that I had hoped it would be.  It was actually distressing with the feeding issues, reflux, nwings.

It is a decision that is yours to make.  If you go to formula, definitely keep pumping to see if the amino acid based formula actually reduces the symptoms.  Have they ruled out anatomy issues?  Are you seeing the reflux or is it silent?  There are some things like eosinophilic esophagisitis that can mimic reflux.  But going elemental should also help, if that would be a factor.

A couple of other thoughts...have you already tried different meds?  We did three ppis, and we had three different rates of effectiveness in controlling the reflux.  Could the size of the dose be a factor?  H was on only 15 mg up to 9 mo (and he was about 28 lbs; way underdosed; and obviously the reason he was up all night).  You likely have been through all that if you have been over to crc. 

XXXXXXXXXXX,
Jean