Author Topic: Feeling Crushed  (Read 7611 times)

0 Members and 1 Guest are viewing this topic.

Offline kim&savannah

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 80
  • Gender: Female
  • Posts: 3702
  • Location: Charlotte, NC
Feeling Crushed
« on: September 22, 2011, 17:15:29 pm »
Little backstory for anyone who hasn't read any of my other posts.  Henry is MSPI and I've been off dairy and soy for over 2 months now, but he continued to have mucous in his stools even after the reflux symptoms went away.  For the last 4 weeks, I've been following a really strict ED--basically the RPAH, but minus all the common allergens as well, so no eggs or gluten (or nuts, shellfish, etc. . .).  The mucous is still pretty bad and his weigh gain has slowed down a lot the last 5 or 6 weeks, so his ped. referred us to a GI specialist.

We had that appt. this a.m. and I was totally dissappointed.  His regular ped. had been so supportive of all the sacrifices I'd made and wanting to get to the bottom of what is causing the problem before we blindly start supplementing or whatever.  But this dr. came in with a nutritionist (I was thinking Yay!  SOmeone to talk about all the food stuff with ::)) and a canister of formula.  He ordered blood work and a stool sample to rule out some various malabsorption issues and check for other things, but then started talking about how we need to get his weight up and its just so hard to know with BFing--they really need him to take bottles.  I told him I'd really like to wait until we get the results from the tests they are running before I start to supplement with some nasty tasting formula, which he agreed to because in his mind, I need some time to get Henry used to taking a bottle (which he takes just fine, even though I don't do it very often).  But in my thinking, if Henry does have a problem absorbing the nutrients from my milk, won't he have a problem absorbing the formula nutrients as well?  Shouldn't we solve the problem of WHY he's sick rather than just stuffing more calories into him, which is all their goal seems to be right now?

I have just gone through so much this last month trying to solve this problem so I can keep BFing and its killing me to think I'm going to have to fight the drs the whole way.  I DO want to do what is best for Henry, but I'm just not feeling like this is it.  And now I am worried that I have somehow compromised my milk by the severity of my diet the last month (more likely quality than quantity because H is having TONS of wet and poopy diapers--something is going in him to make all that come out.)  The dr. didn't think there was any point continuing with what I've been doing at this point, which I agree--4 weeks in and there really hasn't been any improvement.  So I came home and at 2 fried eggs with guacamole on them (lots of healthy fats!!!).

I do plan to see a lactation consultant who I assume will be more supportive of what I'm trying to do, and I think I'm going to try to cut out carbs and sugars since I really think we have a leaky gut issue at this point, and I can eat a lot more healthful foods with good fats, protein and vitamins on that diet.  I'm also going to get fenugreek to try to boost my supply.  

Oh, and they were not too happy that I'm not doing Vit. D supplements.  I told the nutritionist that the ones I'd bought had so much junk (colors and flavors) in them, that I got turned off of the whole idea.  She admitted she's never read the label, but "that's what most of our patients use and the babies are all fine." ::)  It's not like I think he's going to instantly drop dead when I give him food coloring, but seriously, WHY should I have to?!!!  I'm going to the health food store today and hope they'll have something "cleaner".

Thanks for listening to my rant.  I was just so hoping to find a helpful ally in all of this because I'm not an expert and its been a lot to take in the last month, but I don't feel like this dr. is going to be that for me.  They don't even want to see us for another month, although I assume if the labs come back with anything, they will do more than just let me know over the phone.  I hope.

Editted to add:  Another thing I almost forgot--the dr. also compared Henry's weight right now (3%) to the % he was at when he was born (50%).  Even my regular ped. pointed out that they don't really care about the initial weight because babies are born at all diff. sizes and that has nothing to do with where they will settle in on the charts.  I was quick to remind him that he was 20% at 2 months and that is where all my babies have been, so its really only what has happened in the last 2 months that is of concern.  It was just like he was trying to make it sound like Henry had had some massive weight loss, worse than what has really happened.
« Last Edit: September 22, 2011, 17:19:17 pm by kim&savannah »
~Kim

Savannah,  6/04
Abraham,   11/06
Henry, 5/8/11

Offline deb

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 593
  • Gender: Female
  • Posts: 21312
  • Resident Nac Mac Feegle
  • Location:
    • My Very Own Crunchy & Progressive Parenting Blog
Re: Feeling Crushed
« Reply #1 on: September 22, 2011, 17:42:01 pm »
Oh, yuck, so sorry you're getting so little real help from the doctors who are supposed to be helping! I'm not entirely sure about the digestion between mother's milk and formula, but with the HA formulas the idea is that nutrients are already broken down so they're easier to absorb.

If you're feeling strongly that leaky gut is the issue - which it could very well be! - then come over to Healthy Living and join us on the Paleo Thread - no dairy or grains, and still plenty of good stuff to eat.

Oh, for the vitamin D supplement, if you yourself are taking a high-quality one, I think he'd be getting some without all the extra junk in it. :)

Offline ~*~Louisa~*~

  • Mummy in need of a month of sleep... PLEASE!!!
  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 23
  • Gender: Female
  • Posts: 1169
  • Location: Devon, UK
    • Cupcakes and storm clouds my blog
Re: Feeling Crushed
« Reply #2 on: September 22, 2011, 19:02:36 pm »
Unsupportive peads are horrible.. OMG! mine was horrible she stopped thiving at 2 months and at 5 monthsish we finally put her on neocate fully

i had things like you might as well since soon breastmilk wont be nutitional because she will be 6 months (this is at 2 months) pushing on 2 week trials of nutramigen (which i cheated and did half breast half nutrimigen alternitivly to satisfy them and me)




DD1 Angel/Spirited - Glue ear
DD2 Angel - MPI, Excema, Late talker
DD3 Angel - Milk,Soy, nut,egg intollerence, Saliciyte sensitivity, Reflux

Offline *jazzberry*

  • The Lounge
  • Forum Moderator
  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 119
  • Gender: Female
  • Posts: 10705
  • Location:
Re: Feeling Crushed
« Reply #3 on: September 22, 2011, 19:09:10 pm »
No advice Kim but (((((((HUGS)))))) - you are making so much effort - I really feel for you x

Offline EloysH

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 102
  • Gender: Female
  • Posts: 5299
  • Eloise & 2 boys, from reflux to gut healing :)
  • Location: Sydney, Australia
Re: Feeling Crushed
« Reply #4 on: September 22, 2011, 22:22:28 pm »
Kim I am so sorry that this is happening.

I think you are absolutely right here:
Quote (selected)
if Henry does have a problem absorbing the nutrients from my milk, won't he have a problem absorbing the formula nutrients as well?  Shouldn't we solve the problem of WHY he's sick rather than just stuffing more calories into him, which is all their goal seems to be right now?


 Breast milk is more calorie and fat dense than formula.  Its just that the breastmilk may contain the irritants due to your diet too.  But it also contains all the other goodies as we know that his gut really really needs to heal.  He needs all your good bacterias so he can heal a leaky gut - if that's what he has.

In your case, you are now in such a specialised area - gut nutrition there really aren't many doctors that are sympathetic to the cause as the diet side and gut side is not taught in medicene. Here I had to seek out a RPAH diet versed paediatrician and there are only a few in my city. To find my pother paediatrician that specialises in matters of the gut i had to go to MINDD organisation and find Dr's listed there, luckily mine is on the advisory board.

Are you in the states?  I can give you the links to the relevant organisations:

http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5457441/k.5E5F/Welcome_to_PhysicianLink__18005323688_/apps/kb/cs/contactsearch.asp

http://www.worldhealth.net/pages/directory/

HTH xx
« Last Edit: September 23, 2011, 01:41:28 am by EloysH »

Offline Erin M

  • The Sentinel
  • Global Moderator
  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 521
  • Gender: Female
  • Posts: 16463
  • Location: USA - the midwest...
Re: Feeling Crushed
« Reply #5 on: September 22, 2011, 23:37:18 pm »
I'm so sorry Kim, that's dreadful!

We use the Carson (or is it Carlson?) Vit D supplements, they've got no additives.  I got them at Whole Foods.  If you can't find them, let me know I will pick up a bottle and send it to you (Whole Foods is literally 2 minutes from my house).  What about probiotics?

And what is up with the immediate formula push?  Is he on commission or something?  I'm very frustrated on your behalf.

And the birth percentile - James wasn't even on the chart when he was born and now is at about the 75th.  I don't think it means much of anything.
« Last Edit: September 22, 2011, 23:39:21 pm by Erin M »

Offline deckchariot

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 361
  • Gender: Female
  • Posts: 8248
  • Location: Virginia, USA
Re: Feeling Crushed
« Reply #6 on: September 23, 2011, 01:25:45 am »
oh Kim {{{{{{{hugs}}}}}}} I'm sorry the specialist wasn't more helpful.  We had the same issue when we saw a GI specialist.  You are doing so great for Henry!  When we were struggling with Katie in the early months, my ped reminded me that she was still getting lots of great stuff from my breastmilk even as we were trying to figure out what was still bothering her.  I hope the lactation consultant is more helpful!!
Michelle




Offline kim&savannah

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 80
  • Gender: Female
  • Posts: 3702
  • Location: Charlotte, NC
Re: Feeling Crushed
« Reply #7 on: September 23, 2011, 02:10:47 am »
Thank you so much, everyone.  Seriously, it is so nice to have somewhere I can go for actual support and encouragement.

Erin--Thank you so much for offering to help.  I did make it to Earthfare today and found Vit. D that has nothing added to it, so we'll start that tomorrow (I just forgot this afternoon.)

Deb--thanks--gotta start looking at the links.

Eloys--thanks for those.  there are a couple drs. within a few miles of us.  I need to see if our insurance covers them and then I can look into that as a possibility here.  A local friend also has recommended her very holisticly minded ped. to me who has been amazing during their allergy struggles.

Louisa--how bad was your LO's weight gain?  What did you try before moving to Neocate?  How did you figure out all her sensitivities?

Totally enjoyed my salmon tonight, and took some Fenugreek--I'm ready to go with this.

~Kim

Savannah,  6/04
Abraham,   11/06
Henry, 5/8/11

Offline Jenn+Ethan+Emily

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 107
  • Gender: Female
  • Posts: 6377
  • So Big!
  • Location: Alberta, Canada
Re: Feeling Crushed
« Reply #8 on: September 23, 2011, 02:20:35 am »
((((((((((hugs))))))))))



Offline kim&savannah

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 80
  • Gender: Female
  • Posts: 3702
  • Location: Charlotte, NC
Re: Feeling Crushed
« Reply #9 on: September 29, 2011, 19:32:32 pm »
I am feeling really discouraged right now.  LC was great, and really had a lot of positive things to say and is still doing more research to give me a good plan of attack.  Intake is good, but the analysis of my milk showed that it is a lot lower calorie than she'd expect to see at this age  :'(  I've always thought that I probably don't make super fatty milk, but none of my kids have ever stalled like this for weight gain, so this is the first time it seems drastic enough to  worry about.  And now I'm left with all this mama guilt--did the ED hurt my milk?  Or did I hurt it by single side feeding?  Or stretching feeds out ala BW recommendations?  Or because he seemed like such a speedy eater, did I not let him eat long enough to establish good fatty milk?  I'm so lost!  And now I just need to know how to fix it, assuming that it can be fixed at this point. 

It's all so dissappointing.  This is my third baby--it was supposed to be easy this time around, but this is turning out way harder than it has been with any of my kids. 
~Kim

Savannah,  6/04
Abraham,   11/06
Henry, 5/8/11

Offline deb

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 593
  • Gender: Female
  • Posts: 21312
  • Resident Nac Mac Feegle
  • Location:
    • My Very Own Crunchy & Progressive Parenting Blog
Re: Feeling Crushed
« Reply #10 on: September 29, 2011, 19:53:06 pm »
I would actually think that SS feeding would be increasing the fat of the milk he is getting; more hindmilk that way, I believe. (It's been a while since I was really conversant on this stuff, so if I'm talking out my backside, someone please let me know, but in my memory it seems that SS was helpful for getting more satisfying milk into them.)

Here, I found this page - http://kellymom.com/nutrition/milk/change-milkfat.html - while looking to see if I'm really talking sense after all these years. :D

I'd make sure you're eating animal fats to the degree possible on your ED. If you can get hold of coconut oil, it should be fine to have a spoonful daily or even twice a day - that's actually good healthy fat in there, and next to breast milk itself is the highest source of lauric acid anyone can consume outside a plain old supplement of it!

Offline Erin M

  • The Sentinel
  • Global Moderator
  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 521
  • Gender: Female
  • Posts: 16463
  • Location: USA - the midwest...
Re: Feeling Crushed
« Reply #11 on: September 29, 2011, 20:28:00 pm »
Kim, I have no idea for sure, but would think that if you upped the fats now, it would help - have you dropped some of the ED?  Maybe if you concentrate on those good fats, it will help. 

Offline EloysH

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 102
  • Gender: Female
  • Posts: 5299
  • Eloise & 2 boys, from reflux to gut healing :)
  • Location: Sydney, Australia
Re: Feeling Crushed
« Reply #12 on: September 30, 2011, 03:10:04 am »
hugs love.  So hard,  You are doing everything in your power to get this right.  It's not fair to be told that your milk is not calorie rich enough.  I have eben told time and time again that the fat content of the milk is not hugely coming from diet rather than the body itself and that eating more fats is inconsequential.  But it can't hurt right?  Have you tried gee?  Dairy free and very good source of essential fatty acids.

Offline kim&savannah

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 80
  • Gender: Female
  • Posts: 3702
  • Location: Charlotte, NC
Re: Feeling Crushed
« Reply #13 on: September 30, 2011, 11:56:13 am »
So, the LC called back after doing more research and reading and said that everything she was seeing actually said that milk averages a lower calorie count than she was thinking at this age, so I'm not so far off--still on the lower end of the range, but not off by 15 calories/oz which is what she first told me.  Kind of wish she'd known that at first so I didn't totally freak out!

Deb-Yes, SS feeding does seem like it should have helped, I just wonder if it didn't get the volume up.  I've been doing some reading and it seems that if you make lower calorie milk, the baby usually makes up for it in volume, but I wonder if both mine are a little on the low side.

Erin-I've added back in tons of foods, but took out all the carbs and sugars because I'm thinking now that he has leaky gut which means I need to get his gut flora in check by starving the yeast and upping the good bacteria.  So I am eating plenty of healthy fats now.

Eloise- From what I've been reading, and the LC said the same, that what you eat doesn't really affect your milk all that much, except possibly changing the TYPE of fats available in your milk.  But it pretty much is what it is.  And while I have lost a lot of weight the last 3 months, its not like I'm malnourished, or even skinny.  I've still got another 15-20 pounds I could lose, so there is still plenty of fat on me.

So the updated recommendations are to keep feeding him as often as possible, breast compressions at the end of feeds to squeeze out as much of the fatty milk that I can there at the end, and if I want to pump, then skim the fat off of that milk and feed it to him.  She also suggested that I consider adding back in some carbs--I was considering it, but after a couple days of less mucus, Henry had a pretty mucousy diaper last night, which I'm thinking was because I'd eaten a lot of fruit the couple days before, so I do really think that there is something to this GAPS diet and hate to just stop it right now when we might be getting somewhere.  And I'm not convinced that his body isn't having a hard time absorbing the nutrients because of the leaky gut.

Thanks for all the support.  this has really got me stressed, which I know doesn't help my milk supply either.

 I really hope he puts some weight on soon here.
~Kim

Savannah,  6/04
Abraham,   11/06
Henry, 5/8/11

Offline deb

  • Resident BW Chatterbox!
  • *****
  • Showing Appreciation 593
  • Gender: Female
  • Posts: 21312
  • Resident Nac Mac Feegle
  • Location:
    • My Very Own Crunchy & Progressive Parenting Blog
Re: Feeling Crushed
« Reply #14 on: September 30, 2011, 12:16:20 pm »
You can add in calories with good fats and starchy veg like squash, carrots, and sweet potatoes without getting into the grains, and there are gluten-free grains like millet that aren't pricey if you get them in the bulk aisle at Whole Foods. Millet and buckwheat (which isn't technically a grain) and quinoa (also not a true grain) got me almost all my carbs for a while when I was on the Body Ecology Diet.