Author Topic: Update on Emily, and my ongoing saga with Booby Juice  (Read 2768 times)

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Offline my3girlsjde

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Update on Emily, and my ongoing saga with Booby Juice
« on: August 22, 2010, 14:34:48 pm »
After seeing multiple Lactation Consultants (LC), a Family Doctor, and a Paediatrician, it turns out that the LC's were right all along and Emma's weight loss, and failure to gain weight adequately has been caused by her allergy to cow's milk protein and sensitivity to soy. Also known as Milk/Soy Protein Intolerance or MSPI.

Emma was diagnosed late July as a 'Failure to Thrive' baby which with all of the increased risks of illness was pretty tough to hear. We started weighing her on a weekly basis, some weeks she would lose a couple of ounces, some she would gain a couple, and some she would stay the same. This is when the we decided to top her feedings off with a little Similac and we had the hospital 'incident'. The LC's said from the beginning that she was sensitive, but when we saw the paed he suggested that it was a feeding issue since I'd had so many challenges with breastfeeding and she was such a mellow baby that she wasn't giving proper feeding cues and wasn't eating enough. He basically wanted me to quit breastfeeding and to put her full time on the soy formula.

 Needless to say the LC's hit the roof. I personally was devastated thinking that I was starving my baby and all of my struggles to make the feeding work were all for nothing. To date I've had cracks and bleeding, thrush, plugged ducts leading to pre-mastitis, a forceful letdown that was too much for Emma to deal with, and an oversupply giving very painful engorgement. And we won't even mention the nursing strikes every time she had a bottle.  None of this could have been predicted, I was just one of the unfortunate few that has this many issues. I felt so robbed that I struggled so much, but even more so when I worked through all of those issues to have a paed suggest I wasn't feeding her properly. 

So we went with our gut and followed the advice of the LC's and  cut all dairy and most soy out of my diet. I tried topping her off with the soy formula for two weeks and her reactions kept getting worse and she kept getting grumpier. And this just isn't a grumpy baby lol.

We've been back to the family doc and we finally got a prescription for a hypoallergenic elemental formula called Alimentum. In all other provinces it costs $70/case of 24, but NB is the only province where medicare covers the complete cost of it. It's pretty gross stuff and hard to get babies to take it, but we've had some luck and she gets a 4oz bottle each day. She's going to need to have it now so she's used to it in case she doesn't outgrow the allergy by age 1. With the severity of her reaction to the Similac on the first day of using it, it's my LC's opinion that it may take longer and she's been right about an awful lot lately.

The best way for Emma to outgrow the allergy is to continue to breastfeed as long as possible. Then I would introduce the dairy by eating it myself and her getting it through my milk. The Alimentum formula is mostly to give me the odd break if I need it, and in case she keeps the allergy past the age where I want to breastfeed.

I was back to the LC on Wednesday and Emma had gained 1.3 oz in 5 days which was half of where she should be. Today I had her back and she gained 6oz in 3 days! That's more than what's expected for a formula fed baby.  So the dairy is officially out of my system and hers, and I'm officially over the moon. :D  I take her back next Friday for a 6 day stretch to see if the weight gain can stay up to 1-1.5oz per day. Fingers are crossed.

I have to say that I've been very humbled by this experience. When your child isn't growing, and at an increased risk for things like SIDS or Cystic Fibrosis, and you can't figure out why, it's pretty hard not to spend an enormous amount of time dwelling on it and googling it.

We're not sure what long term effects the weight loss may have on her in the long run and only time will tell. The big question is if and when she will outgrow the allergy. Solids will definitely need to wait until 6 mos and we'll need to be very careful when introducing new foods in her diet.

Now I'm relaxing a bit more and so very thankful for the support of a wonderful husband (who has seen me cry through more than one feed), amazing LC's, and so many friends who told me I could do it and not to give up. Lastly I'm thankful for having such a mellow and patient baby through all of this.

Wow, this ended up being quite a bit longer than I had intended. But I wanted to share how well our little girl has done, and ask you all to keep your fingers crossed that she continue to grow.

Thanks for reading, and all of your support especially when so many members of mine and dh's family kept wondering why I just wouldn't put her on the bottle and 'be done with it'. I credit so many friends I've made on the BW site for my sanity this past year.
 
Hopefully much more good news to follow in the upcoming weeks.
Vicki - nursing student and proud mother to three refluxers in two years





Remembering my sleeping angels: 17 Jan 06, 30 Jul 09

Offline my3girlsjde

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #1 on: August 22, 2010, 14:40:53 pm »
Sorry - Similac is one of the most popular milk based formulas in Canada. Not sure if it's as widely used around the world.
Vicki - nursing student and proud mother to three refluxers in two years





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Offline pinkism

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #2 on: August 22, 2010, 15:03:03 pm »
Oh my goodness, sending you BIG ((((hugs)))) and huge congratulations for your sheer determination in continuing to breastfeed against all the odds. So pleased Emma has turned a corner and you finally have a chance to see her as she should be, a poorly baby is awful and it's so rewarding to see things working out for you all.
Here's a huge pat on the back:

****WELL DONE YOU!!!****

Debs x

Offline SylvieA

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #3 on: August 22, 2010, 15:49:31 pm »
Well done. You've really went beyond what most mothers would of done ;D Lucky girl to have a such determined momma. And Argh at your Paed, makes me wonder where they got their doctorate sometimes.
Miguel-November 2005
Zoe-August 2008

Offline EloysH

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #4 on: August 23, 2010, 07:09:55 am »
Wow what an inpsirational story and well done to being a determined mother!  ;D

I truly know how it feels when your baby isnt gaining and the awful pressure that builds to switch to formula full time from those around.

Can I ask a question, have her stools improved since she's dairy free?   Did you ever see blood in her stools? Or will her stools still take some time to become normal/mucus free?

Also, technically what is the reason given that she couldn't thrive with the dairy in her system?  Is it because she couldn't absorb the nutrients due to her intestines and bowel being irritated / damaged?

Offline my3girlsjde

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #5 on: August 23, 2010, 08:37:08 am »
I have no idea why she wasn't thriving with the dairy in her system. I'll have to asj my LC that one as they did say that was one of the markers for an allergy. While EBF her stools were just mucousy but no blood (very stinky too), but after the dairy based formula she had blood in her stool which was one of the other markers for a true allergy. The other markers were the reaction she had.
Her stools have finally returned to normal after removing ALL dairy including trace amounts that aren't listed on ingredient lists (such as the caramel colour in soda). They still smell a bit and I'm thinking it's the soy but she's gaining, and the stools are seedy and mustard colour so I'm not as concerned about the hidden soy as I am the hidden dairy.
Thanks so much for everyones support. This has been such a trying time for me, and it felt so often that PPD was lurking just outside my door. I truly could not have done this without the support of my friends and the wonderful people I've met on this site.
Tracy's legacy has certainly helped people long after she passed :)
Vicki - nursing student and proud mother to three refluxers in two years





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Offline Edesanja

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #6 on: August 24, 2010, 02:32:30 am »
So good to hear!
Your story sounds very much like mine with DD (except we never went to soy formula with her and she had a bottle of Neocate from 16 weeks).
You've done well Mama!
Jenny - mama to



Offline JennŠ

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #7 on: August 24, 2010, 02:46:10 am »
Carmel color has dairy?  Never knew that!  Glad babe is feeling better!!!
 When you're soaring through the air, I'll be your solid ground.  Take every chance you dare.  I'll still be there when you come back down.

Offline my3girlsjde

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #8 on: August 24, 2010, 06:37:54 am »
Jenn - I was even informed today that salt n vinegar chipa (crisps) have dairy in them too! Sadly so do my hot dogs lol.
Vicki - nursing student and proud mother to three refluxers in two years





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Offline JennŠ

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #9 on: August 25, 2010, 00:46:00 am »
Chips?  The world has officially gone weird now. 
 When you're soaring through the air, I'll be your solid ground.  Take every chance you dare.  I'll still be there when you come back down.

Offline mkaes

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #10 on: August 25, 2010, 00:59:16 am »
You can have plain regular chips, but most chips that are flavored have one of the milk proteins in them.

Offline my3girlsjde

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #11 on: August 25, 2010, 01:01:49 am »
So I've unfortunately learned. I noticed tonight when I bathed Emma that she had a few more rolls to clean :) Such a thing to get excited over lol - making sure you get the folds of their skin clean :o  Just so exciting to see her get a little 'chub on' .
Vicki - nursing student and proud mother to three refluxers in two years





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Offline mkaes

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #12 on: August 25, 2010, 01:10:38 am »
:) it sure is :)

Offline momtonb&ab

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Re: Update on Emily, and my ongoing saga with Booby Juice
« Reply #13 on: August 25, 2010, 01:51:38 am »
oh vicki, i am so sorry i had no idea things were so trying for you.

it sounds like you have come a long way these last few months!  so glad to hear things are looking up.  we will send vibes that the chubby little rolls keep right on coming and that you get the joy of keeping them all nice and clean :)

huge hugs to you.