Please help with next steps - breastfeeding at major risk - Page 29

[DeChRi]

So if there was a thread pool on how many days it would take for me to come back and make this post, less than 2 days wins.

After Blissfull Wonderful Day, we've had horrible night, followed by, bad day, followed by really horrible night, and today is hovering around Please Make It Stop.

I'm so exhausted and irrational so here are my facts:
-i know she has some kind of allergy but I mentally cannot TED at this moment in time. I just can't.
-I can get 3oz @ a time down her, and thanks to my 2 wks of nursing, she has socked on weight. Anything over 2 oz comes up. Anything over 3oz makes her scream.
-night are now horrible
-the meds do jack squat
-I know I need a new GI but my husband is working 80hr weeks and my infant hates the care and the thought of driving 4hr to StLouis is so overwhelming I can't even make sense of it.
-The OT I found in another city close to here punted me back to the one in kansas city that I'm waiting for
-I see GI Jerko on Monday and he will say "looks like she is gaining, wow I did great" and send me out.

I am so incredibly defeated that I have no idea how to articulate the fact that no matter what we have done, my child has not a SINGLE time been comfortable enough to relax and just doze off while being rocked, etc, in 4 months.

I can't even brown a skillet of buffalo w/o crying today. Ellie is inconsolable with anyone but me so while I need a break, my mommy senses won't let me leave her.

I have absolutely no plan, no direction, no next step, and something is wrong w/ my baby that no one has figured out. And I have no fight left.

[WuWei]

Have you considered homeopathy, for either of you? Helps to treat mama or baby.

Pat

[eclipse]

I wish I had advice, but all I can offer is

[DeChRi]

Pat - All I've done is the various Hylands stuff for Elle and the same + Rescue Remedy for me, but I nixed it all when I was TED. Open to suggestions of any kind.

[jenfl]

You need to see a new GI. I know the thought of driving 4 hours is overwhelming, but so is the thought of not having anyone in the medical community investigating or on your side.

Is there ANYONE else near you? Anyone the allergy doc can point you to?

[WuWei]

Originally Posted by DeChRi

Pat - All I've done is the various Hylands stuff for Elle and the same + Rescue Remedy for me, but I nixed it all when I was TED. Open to suggestions of any kind.

I trust Elisabeth. She is a very knowledable MDC mama and homeopath. She can help. http://taylorhomeopathy.com/


Pat

[jenfl]

Now that she's having difficulty on the Neocate, will the GI doc pay more attention?

I spoke with a nurse friend, and she suggested that you fill out a schedule for a week (or some number of days), hour-by-hour, with how much your LO is screaming. That might get some attention?

[mamafish9]

I second talking to Elisabeth for homeopathy - lots of experience with allergies, nursing issues, and phenomenal healer.

I was going to suggest trying the alimentum RTF, but it has milk proteins in it, so I'm not sure you'd learn anything from removing corn there but adding milk (since she's still on meds with corn, she wouldn't be truly corn free anyhow).

It sounds like something needs to give on the support front - if your husband can't reduce his work hours, can you maybe hire someone for a couple of months to help with the other kids, cook for you, take some of the pressure off? It's so hard to function or make decisions when you're feeling just DONE.

If she's back to really bad on the neocate, then I'd be trying the TED and adding foods, but I know that's a long, long road. If formula offered you a sustainable option, that would be wonderful - but it doesn't appear like it is. At least on your milk, she was growing.

So sorry, mama

[WuWei]

Another option is homemade infant formula from the Weston A. Price Foundation. There is a dairy-free version.

Another alternative is you do the formula so baby can get breast milk. Check: Formula for mom not baby! The mama finally got resolution when she was tested for allergies (Comprehensive food panel IgG ELISA blood test) and removed them from her diet and started a 4-Day Rotation Diet.

Breast milk has so many things that protect your babe's gut and help him digest. Here is Dr. Sears formula/breast milk comparison.
http://www.askdrsears.com/html/2/T021600.asp

Have you gone to see a naturopath?


Pat

[crunchy_mommy]

Yeah if you're not up for another round of TED I would consider homemade formula... starting with whatever you're going to use as the base and then adding ingredients to it every day or two as long as she's doing well...

I would also step out of your comfort zone as far as "highly recommended doctors" and try to find a GI & OT etc. that are nearby & just see what they have to offer. Sometimes the less renowned doctors aren't only just as good, but also less busy & would have a lot more time to work with you on this & think outside the box.

It's got to be so frustrating thinking you've finally found a solution & then *POOF* she's back to square one & miserable again. She really does remind me so much of my DS. A lot of what you describe is exactly what we experienced for most of his first year or so. It was horrendous for both of us & no one seemed to understand that he wasn't just "a little colicky" or whatever.

[chlobo]

Major hugs. So sorry you are going through this.

So is she on the neocate still?

[mamafish9]

I'm not seeing any dairy free homemade formula on that page? (The liver version has whey & milk derived lactose in it). This babe has reacted to something in a 4 food TED (DeChri's first TED) - guessing that the number of ingredients in this homemade formula is going to make the chances of success small.

[WuWei]

Originally Posted by mamafish9

I'm not seeing any dairy free homemade formula on that page? (The liver version has whey & milk derived lactose in it). This babe has reacted to something in a 4 food TED (DeChri's first TED) - guessing that the number of ingredients in this homemade formula is going to make the chances of success small.

Interesting. I believe the liver-based formula used to be casein-free. I found a reference to that in the FAQ's even:

Cream in the Liver Formula

Q: Why is there no need for cream (or nutrients thereof) in the liver formula? Does the liver take care of what the other oils don’t?
A: This is supposed to be a casein-free formula. The coconut oil supplies the saturated fats. Coconut oil is essential in this formula.

I'd consider supplementing a four-month old with homemade liver-based formula without the whey, alongside breastmilk. Also, raw, cultured dairy casein is often more easily tolerated than pasteurized, too. Especially, if it is directly consumed, rather than via breastmilk with mom reacting to the dairy-casein.





Pat

[DeChRi]

Am replying from phone so can't comment on many things that I'll come back and comment on when kids crash.

One thing I wanted to say...I feel strongly there is both a food allergy and something else. Her behavior while nursing on chicken/turkey/olive oil/salt/glutenfree oats was similar to that while on Neocate. But is was Very far from ideal. So I really would like to figure out the "other thing", then go back to figuring out the food part. I think it's something that isn't food/gut healing related. Something is just Not Right.

[ktgrok]

I agree with the idea of seeing a local GI rather than the best. Someone that will tak the time to investigate.

[ktgrok]

I keep thinking about an episode of Mystery diagnoses where the patient had this: http://www.hopkins-gi.org/GDL_Diseas...7-8B0C67B47BFF

[ktgrok]

Can you take the train to St. Louis so she doesn't hve to be in a car seat?

[DeChRi]

I'm appx an hour west of Kansas City, KS. We have been referred by everyone for everything to Children's Mercy Hospital (GI, OT, etc). I'll be back on shortly with more info, but for those of you willing to take your time to help me when I am all over trying to figure this out, that may help. We have great Naturopath here. I am far left of mainstream but probably a bit right of most MDC. I am all for seeing him, but I still feel like there is a medical specialist issue here. I am totaly uncomfortable making my own formula and cannot even articulate why. I dont think I trust myself in that. My DH will do what I need him to. I just feel like I need a plan of where we are going and why, before asking him to take off work. His job is one that is very difficult for that to happen. That being said, he will do it.

[DeChRi]

Originally Posted by WuWei

I trust Elisabeth. She is a very knowledable MDC mama and homeopath. She can help. http://taylorhomeopathy.com/


Pat

I emailed her. thank you.

[DeChRi]

Originally Posted by jenfl

Now that she's having difficulty on the Neocate, will the GI doc pay more attention?

I spoke with a nurse friend, and she suggested that you fill out a schedule for a week (or some number of days), hour-by-hour, with how much your LO is screaming. That might get some attention?

I hope the GI doc will pay more attention. He seems to be a "symptom treater" vs a "diagnoser". His letter to BCBS for us to get our Neocate covered said she "was very irritable and mom tried an elimination diet and Alimentum but Neocate was the only feeding option that made baby less irritable". So obviously his position is pretty non-chalant.

When we were there last time I brought a cry log. That is what he refused to look through. We go back Monday. My hope is that now a month later, on Neocate and his stupid regime, and still miserable, that he will do something. My gut says he will say...wow, she is gaining weight, we fixed her.

I am trying to think of some approach to get on the same side, even if temporarily, to work with this guy.