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Please help with next steps - breastfeeding at major risk - Page 30

post #581 of 625
Thread Starter 
Originally Posted by WuWei View Post
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.

Have you gone to see a naturopath?

Ive looked at the formula for mom link before. I'm not sure I can handle that. As far as breastmilk being better, this I know. I lose sleep over her not being an exclusively breastfed baby. I also lose sleep when she screams twice as much while nursing. I hope someday this is not the case. Until then, I will probably continue to lose sleep over the fact that she is not getting ideal nutrition.
post #582 of 625
Thread Starter 
Originally Posted by ktgrok View Post
Can you take the train to St. Louis so she doesn't hve to be in a car seat?
Not a bad idea actually.
post #583 of 625

I'm so sorry! I'd been hoping you were on track (at least somewhat) at this point. Although it certainly sounded like the DGE (or whatever is looking like it) was still going to need to be addressed somehow.

Have you checked via the "Finding your Tribe" board to see if anyone there can recommend an alternate GI in the area that you could make an appointment with - someone they've had luck with? Possibly check with your local LLL or AP group if you've any contacts with groups like that? Maybe someone there can recommend another local Ped GI who was helpful for them?

Otherwise, the train option might do it for you! It's worth a try.

In terms of homemade formula - I've never been in a position where *nothing* worked, since the Neocate did work for us and since we were able to find an ED which worked for us, too. I, too, would be very leery of homemade formulas. My sister's husband has a family story about a set of twins who couldn't nurse nor digest formula, who ended up surviving (and living to be old, old ladies) on the syrup from canned peaches (!) - but truly, there have to be such huge nutrition concerns when you go that route. Let's hope you can find a solution to what we suspect is something like DGE which you're dealing with -- I wonder whether resolving that might bring the allergy issues more clearly in line and set you on a path to manageability.

Is your dh going to be at the appointment Monday with you? Game plan it out first - make sure you both are able to ask questions during the appointment. Maybe this doctor will listen more to your dh than to you? Abhorrent as that would be .... If you didn't have the opportunity to say it to him last time, I'd be tempted, if he starts to brush you off again, to say something like, "Look, Dr. X - I have had two other children, one of whom had reflux as well. I have a college degree [I'm assuming], I am an intelligent woman, and my baby is not well. I have done everything I've been asked to and more, and she is not improving. She is not a "fussy" baby. She is a miserable, suffering baby who spends most of her time crying. I need you to help us figure this out, or to refer us to someone who can help us because this is not normal, and it is not livable, and we need your help."
post #584 of 625
the train is the only way we can take long trips with the baby. I can hold her and feed her and rock her in my seat and move from car to car for a change of scenery.....where as in the car seat she screams bloody murder.
post #585 of 625
Originally Posted by WuWei View Post
Interesting. I believe the liver-based formula used to be casein-free. I found a reference to that in the FAQ's even:

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.
Normally all good ideas, Pat - but in this case, we don't know it's the casein the babe is reacting to (could well be whey protein or dairy lactose in addition/instead of casein). And I don't think there's any evidence DeChri has any food issues, so I think in this case, it's not about babe reacting to mama's reactions. You know I'm a big fan of raw milk, but this isn't the babe I'd try it with .

Originally Posted by DeChRi View Post
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.
Yup, I think that's a totally fair reading of what's happened in the past few months. I'm probably to the "left" of most mamas in believing mainstream medicine isn't terribly successful many times in finding and fixing those kinds of issues, unfortunately. I totally hope I'm wrong, and you find some effective medical help really soon. I think that it probably makes sense to think through what you want to do if that doesn't happen, though.

One comment on your TED - GF oats can cause issues for babes that react to gluten (oats have some proteins that are quite similar to gluten) - so if you circle back around to a TED in any of this, you might try trading out the oats for another grain. Buckwheat would be my suggestion (not any relation to wheat).

Googling for resources, KU medical center has a feeding clinic (which includes an OT & Ped GI) - I also found it listed on a reflux mom's resource list, so that sounds like they might deal with infants as well. Thinking having them watch you nurse might be interesting, if they will treat babies. There is a contact number at the bottom of this page - at the very least, this person might have some ideas of a specialist that might see you soon.

post #586 of 625
Originally Posted by DeChRi View Post
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.
You are going to have to tell him that for awhile you tried a different elimination diet and nursing her, so THAT is where she gained the weight.

I'm guessing he's not going to have any more "good ideas".
post #587 of 625
Thread Starter 
Elanorh- that's great wording. I'm going to use that. Thank you.

DH is going w/ me and he holds his composure better than I do. Probably because he's slept recently.

Mamafish- I'd contact KUMed awhile ago re: ped GI docs and was punted over to Children's Mercy. However, I may loop back around. I am really amazed, as I was calling all around, that Everyone deferred to CMH. I called both big hospitals in Topeka and was directed to CMH. Talked to my aunt in Kansas City who works in the adult GI dept @ St.Lukes hosp...she asked around for alternatives there and those docs said CMH.

That being said, treating the symptoms is Not working. I would like (at least a partial) Diagnosis. If some of the meds really helped then fine. But they don't. And I'd like to know what is wrong.

After nights of hell, she was awake all day and so upset yesterday, she slept 8pm to 6am last night. Granted she's been a mess today, but that may have kept me from jumping.
I did find a link for a GI practice that I think one of the Drs may do infants. We are going to the Dr followup tomorrow. For the sake of feeling like I need to do something now, I'm going to attempt to talk w/ this Dr. He's thrown 5 meds @ her, we've gone a month, and she is still miserable. I hope we can at least have a rational conversation w/ him, even if it kindly expressing that we'd like to see someone else.
post #588 of 625
I just did a quick search and this site lists 10 ped GI's in your general area (I don't know the area so I'm not sure how far they are!) http://www.healthgrades.com/provider...s&specialty=15

I would at least go down that list (or another if you have a better one) and just see how soon they can get you in etc. Have your DH or a friend call half of them for you...
post #589 of 625
Thread Starter 
I actually called Dr #1 on that list and he punted to CMH. Every other Dr other than the Wichita based are CMH affiliated. Wichita is a trip but is doable.

So I've been getting video clips of Ellie today, hoping to be able show Dr what she looks likes when she feels bad, then hammer it home with "and she is like this 15-20hrs/day"..NOW is she "just irritable" ?!?

So I have all of these short 30sec-3min clips. Given that he wouldn't even look at the history last time, any suggestions on the best way to organize and present to him? If anyone here has the fortitude to hear a crying baby. I'd be interested to share them and get opinions from those that have btdt.
post #590 of 625
Originally Posted by mamafish9 View Post
One comment on your TED - GF oats can cause issues for babes that react to gluten (oats have some proteins that are quite similar to gluten) - so if you circle back around to a TED in any of this, you might try trading out the oats for another grain. Buckwheat would be my suggestion (not any relation to wheat)

Yes we are gluten free (also dairy free and egg free and avoid soy too) family and avoiding oats as well. It can take quite awhile for gluten to get out of your system and then the baby's system. Unfortunately I have been dealing with that right now for the last 6 week, her crying ALL DAY LONG, EVERY DAY. Only now is she calming down SOMEWHAT after stopping the source of gluten over a month ago.
post #591 of 625
Thread Starter 
On my TED before this last one, I ate quinoa vs GF oats. After being GF during the TED, Ellie went on Neocate for 5.5 weeks. She should have been free of just about anything food allergy wise then.
post #592 of 625
Thread Starter 
When heading into the Dr tomorrow I am simply going to tell him that Ellisen has been chronically in distress for 4 months now. None of the meds/suggestions he gave us last time have helped.

Ellie currently STILL:
-cries/whimpers in pain/chronically pulls in legs and arches and stiffens between 10-19 hrs/day, on average
-refluxes severely (both silent and spitting)causing her extreme discomfort, despite being on reflux meds.
-does not tolerate more than 2 oz food at a time w/o violent and excessive spitting and screaming/writhing fits.
-she has gained weight due to A) breastfeeding 12 days and B) waking to get food down her, around the clock and feeding her past her comfort level regularly
-New symptom: for the last 4 weeks I've spent night waking with her every 30 min all night while she either needs to sit up due to reflux, change her position, walk her crying, lay her across me to help her tummy while she writhes and whimpers
-does not nap any more than 10-20 min @ a time ever, waking everytime screaming from either gut pain or reflux
-when going through the 5 mnth milestone checklist, she is starting to lag in many areas, simply do to the fact that is does not feel good enough to DO anything.

I will show him the video and tell him she is like that 90% of her waking hours.

I'm going to ask him what the next course of action to find a solution is, and if he can't offer one, can he recommend someone who can.

DH is coming too. Luckily we're coming off a BAD weekend, so he is pretty fired up to get answers.
post #593 of 625
Good Luck!! Will be thinking of you tomorrow and hoping that the last appointment was an anomaly, and that Ped GI decides to listen to you and take this seriously.

And that if it wasn't an anomaly, that he at least gives you a referral to someone who will help you!
post #594 of 625
If you still haven't found a good doctor to see, you could try posting a question on the special needs forum:

The mamas on there are familiar with all the good doctors around, and they live all over the place, so you might find one in your area.

The SN mamas are also familiar with all kinds of GI symptoms, procedures and accommodations, so ask away!
post #595 of 625
Thread Starter 
Thanks, Kim.

This experience has me left with a massive admiration and respect for parents of children with long term special needs. The chances that Ellie grows out of most of this in the next couple years is high. I can't imagine having a little one that for whatever reason, requires this level of care, around the clock need, etc...with no real breaks.

Mama's and daddy's of special needs kiddos truly have to be some of the most incredibly strong people on the planet.
post #596 of 625
Thread Starter 
Skin question...Ellie always had a tiny little dry skin area (small, never got better/worse) by her left eye (under the thickest part of her little eye brow. Over the last couple weeks she's developed one in the same spot on her other eye. Also, she has what looks like a very light baby acne across her forehead. Are those normal allergic skin conditions? Or could the baby acne resurgence be from getting some of my hormones from nursing?
post #597 of 625
My 2corn allergic boys got a circular spot on their bodies around 3-4 months as a first sign of allergies. It was dry & at times looked like dried milk on the skin. When wet it started to look red. For one, it turned into scoriosis patches on his neck,behind ears, arms & legs.
post #598 of 625
How did it go? I was thinking good thoughts for you!
post #599 of 625
Thread Starter 
We had a TOTALLY different experience with this Dr this time. He took his time. Answered our questions. Heard us out. FINALLY explained why he went the route that he did last time.

I have kids in the tub, but the short version is......he felt like there were SO many symptoms last time that it was hard to know where to start. So he went aggressive on the reflux meds and the DGE meds. To establish a starting point. Today he was very quick to say...okay, not getting better,, what is better? what is worse? what changes? He pulled her from the Erythromycin. He wants us to keep her on prevacid and zantac because her reflux is so so bad. (seems to be getting worse and bothering her more, keeping her up at night). I said there was a worsening of the lower gut pain which he thought may be the eryth too.

Luckily, she was mid-misery when we were there. I think THAT made the difference. He came in and she was screaming, writhing, puking out her nose, etc....he was like WOW. And I was like...yeah, um, this is ALL DAY dude. So he totally believes us that she is miserable. When she quit crying and made some noises she was very raspy. When examining her he also noted that she does that wrenching her head back to one side.

Given the dose of reflux meds she in on and the worsening of symptoms, he is worried her esophagus is in bad shape. He would like to scope her. We are decided.

I'll give it to him...he really put it in out laps. He did recommend trying a different elemental formula too. We even talking nursing.

Will come back later and update more.
post #600 of 625
I'm glad your experience was so much better this time. And, while I'm sorry Ellie was having such a bad day, it was good she was willing to put on the show for him! My kids always refuse to show any symptoms of anything while actually in a doctor's office . I hope you can start to get to the bottom of this now.
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