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RunningMommyTo5 March 14th, 2013 07:13 AM

So frustrated and need advice/opinions, please!
 
I am SO FRUSTRATED! I just want to cry (and did a little yesterday). The pediatric GI, in my opinion, was a waste of time. He wouldn't listen to me or apparently didn't even bother to read her medical history from her pediatrician or Geneticist. He just looked at Bailey's weight currently and where she was at birth. He said, well at 6mo10d, she's very small at 12.5lbs. She's off the charts (ummm....yeah, DUH! That's why we're here). He said "Well, we've got to get her to gain and get her on the charts". What does he think this whole process we're going through is about?

So, he tells me to pump exclusively for 5 days, no nursing AT ALL, give her pumped milk about of bottles with Polycose added to it to boost the calories. I tell him that we didn't do the Polycose, but I did already pump and supplement several ounces in between feedings with her ped. It didn't do anything as far as weight gain and all it did was make her miserable, fussy, and left her with a distented stomach at the end of the day. She had a few abnormalities in her labs and we're waiting to hear back her results from the geneticist. He completely blew me off and told me to do this, come back in a month, and if she hasn't gained and isn't on the charts, then "we'll have to make drastic changes" whatever that means, which I'm assuming means he'll want her to stop nursing and be put on a high calorie formula. I asked about why we were sent there, any potential malabsportion issues or any structural issues in her GI tract causing this and he wouldn't even address that.

My questions are, reading up on Polycose, it's a cornstarch based carbohydrate calorie booster. So, if she's potentially got some malabsorption issues (maybe celiac or something of that nature) or metabolic issues, won't a corn-based product further aggravate it?

He says she needs at least 24onces of milk a day. I say she's getting a lot more than that. She's nursing off both sides 6x a day (I haven't cut out any nursings due to her low weight) and I can pump 5-6oz off ONE side. We've already concluded at her ped that calories IS NOT an issue....once again, blown off....no answer, other than 24on with the Polycose would up the calories. Um, HELLO, dr!!! Are you even listening to me? Let's assume she only gets 5oz off one side and maybe 3 off the other. That's 8oz/nursing and a total of 48 oz a day. You're saying that the added Polycose will not even double the calories she's taking in, yet you're telling me to half the amount she's getting with the Polycose. She's getting more milk and calories nursing than she would with 24oz milk w/Polycose and she's not gaining. No answer other than follow his instructions.

I just can't believe he wouldn't want to rule out underlying issues before potentially harming her system further with something artificial. The whole reason we were sent there was to look at underlying issues. I feel like he's pushing/forcing me into eventually giving up breastfeeding. I don't know what to do.

Any advice?
Any experience with Polycose? I'm really worried about using a cornstarch based additive.
I'm heartbroken for my little girl and beyond frustrated with the process at this point.

I'll cross post in FB, too, just so you know you'll see this in both places. I really need help ladies!!!

Brandiwine3 March 14th, 2013 07:56 AM

Re: So frustrated and need advice/opinions, please!
 
I can't begin to imagine how frustrated you are! And, although, I have no experience with Pylocose, I would tell you after your research, follow your motherly intuition. All of what you've detailed above sounds logical...if Bailey is having a malabsorption or metabolic issue (s), supplementing with this could potentially heighten the situation and cause irreversible damage to your baby girl. I think I would INSIST on speaking with the practice manager and or facility administrator. That doctor is accountable to someone - make your voice heard. I've found 1 of two things to happen when being proactive in this kind of situation. 1) The matter is addressed with the physician and he/she steps back to reconsider/review case details with a favorable prognosis or 2) Addressing the physician aggravates the situation as he/she feels that you/fmly are challenging or questioning his credentials and backs away from farther tx. Either way, you have to advocate for your child, which it sounds thus far like you are doing a fantastic job of. Is there another physician in the practice that you can see? You are a very confident, intelligent and nurturing mother - do not go away quietly. You will find the answers you're looking for...keep pushing ahead.

smashley8 March 14th, 2013 08:50 AM

Re: So frustrated and need advice/opinions, please!
 
Quote:

Originally Posted by Brandiwine3 (Post 27194697)
I can't begin to imagine how frustrated you are! And, although, I have no experience with Pylocose, I would tell you after your research, follow your motherly intuition. All of what you've detailed above sounds logical...if Bailey is having a malabsorption or metabolic issue (s), supplementing with this could potentially heighten the situation and cause irreversible damage to your baby girl. I think I would INSIST on speaking with the practice manager and or facility administrator. That doctor is accountable to someone - make your voice heard. I've found 1 of two things to happen when being proactive in this kind of situation. 1) The matter is addressed with the physician and he/she steps back to reconsider/review case details with a favorable prognosis or 2) Addressing the physician aggravates the situation as he/she feels that you/fmly are challenging or questioning his credentials and backs away from farther tx. Either way, you have to advocate for your child, which it sounds thus far like you are doing a fantastic job of. Is there another physician in the practice that you can see? You are a very confident, intelligent and nurturing mother - do not go away quietly. You will find the answers you're looking for...keep pushing ahead.

I totally agree with ALL of this. My gut would tell me that you are right and you should not be supplementing with this, especially considering he did not listen to or address any of your concerns. It honestly sounds like a case of a doctor who has seen many patients and has gotten far too absorbed in doing things by the book rather than identifying a unique path for each child. I would definitely raise your concerns with people above him and/or push on with a different doctor. I wouldn't hesitate to tell him personally that you are disappointed with his recommendation and you are uncomfortable with supplementing with the Pylocose. I would think he doesn't have a choice but to introduce a new option for you. Hugs girl, I know this must be so hard.

jennylynnf March 14th, 2013 09:03 AM

Re: So frustrated and need advice/opinions, please!
 
I'm so sorry your going through this and just this week have dealt with doctors not listening to underlying issues that may be causing problems and its so frusterating bc as a mother we know its our job and the only ones who can speak up for them and we dont want them to suffer in any way. Id try to go see a different specialist if you can. Call your health insurance and ask for them to cover another doctor in your area they usually do not cover. they did that for my pregnancy the GYN and the hospital were not covered but made an eception it was easy and they mailed me the paper and faxed it to the doc and only took minutes. Call them and talk to them they can be helpful when you explain your out of options with doctors and need temporary exception for coverage, to be considered and in network provider instead of not covered at all or out of network. It sucks to go through all the shuffeling of doctors but get all her records and keep going. NO doctor should recommend NOT breastfeeding as the first thing to a problem when test results havent been looked at or all test available for the problem havnt been done. We will keep praying for your family and lil girl.

DaniM0820 March 14th, 2013 10:23 AM

Re: So frustrated and need advice/opinions, please!
 
I wouldn't do what he said, nothing about it sounds right to me, and it's even more worrisome that he didn't listen to you. NOT cool.
Is it possible for you to seek a second opinion from a different doctor? Are there more than 1 at that practice or would you have to go somewhere else?

I'm sorry it is so frustrating for you. :hugs:

curlygirl77 March 14th, 2013 11:55 AM

Re: So frustrated and need advice/opinions, please!
 
So sorry, Katie! There's nothing worse than when doctors just don't listen. I deal with doctors like this all the time, seems like all the military physicians are like this. I agree with the other ladies, trust your instinct. It sounds like you've done a lot.of research and Bailey is lucky to have such a committed mommy! Seek another opinion if you can.

karenwalter March 14th, 2013 03:53 PM

Can you call and speak to her regular ped? It seems like you have a pretty good relationship with her ped. I would speak to her before proceeding. Tell her your concerns and that you didn't feel your concerns were addressed by the GI doc. She may send you for a second opinion somewhere else or maybe will be able to answer some of your concerns. But I wouldn't proceed until you feel comfortable. Too bad you don't live in CA! I know a great peds GI out here.

Angelamomtomany March 14th, 2013 04:56 PM

Re: So frustrated and need advice/opinions, please!
 
I would be on the phone with the ped. asking for a referral to a different GI doc for a "second" opinion. Maybe all your specialist should be at UAB.

Risa March 14th, 2013 05:31 PM

Re: So frustrated and need advice/opinions, please!
 
Another vote for finding a second opinion. The worst thing it would do is have another person say the same thing, in which case you will know it is the right thing to do. And most likely you will find that you are right and that doctor is just not listening.

aislin22 March 14th, 2013 10:30 PM

Re: So frustrated and need advice/opinions, please!
 
get a second opinion for sure! It sounds like you really know your stuff and moms are always better at knowing their babies if they have a gut feeling something is wrong. Doctors can be so rude and uptight. get a second (or third if you have to) and fight for your baby! :smile:

Blessed Mommy Of 5 March 15th, 2013 10:55 AM

Re: So frustrated and need advice/opinions, please!
 
Katie, I definitely agree with the other ladies. I think you should continue what you were already doing and seek another opinion. The doctor didn't even take the time to listen to your concerns; which are very valid. His advice doesn't sit well with me either.


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