Feeding DS Neocate for the first time, bm has tanked, feeling sad

[mama9]

I'm having a frantic evening so forgive me if I'm not clear in my post. I had to take a minute to ask for help here.

This could all very well be a 'passing' issue but right now I'm feeling a little confused.

DS started teething around 6 weeks ago and has cut 4 teeth to date. At the same time I was on a very restricted diet - still am, but his reactions have improved since I started supping. We still have a long road ahead of us and I am having to rethink so that I can add in more foods to keep my supply up as it has been dwindling due to not being able to add enough fats and carbs into my diet.

Since all of the teething, things got worse supply-wise because DS has been nursing less often and less intensively. I've had a few moments where I have had to feed him Neocate in order to feed him at all. He doesn't like it of course and I've had to go through the hoops to feed him (sippy cup, open cups of different sizes, bottles, even syringes to get food into him). I am using my pump to empty my breasts after feeds and try to feed him what I can pump before giving him Neocate.

Right now we both have terrible colds. I'm doing everything I can think of to help him recover so that he can return to health and nurse properly again. His nappies are drying up and he hasn't pooped in days. His pee looked too yellow today, I gave him syringes of cooled boiled water which he took funnily enough, easier than bm or formula. That sorted the pee out but what about is nourishment?

Today, the best I could do was put him on the boob and put a syringe of formula into the corner of his mouth at the same time and slowly squeeze it in.

It doesn't help that he is cruising and crawling like crazy recently so he is using up so much energy and I'm so worried about how to feed him. Dairy or soy is a no no.

If anybody has any insight for me I would be grateful. I have to be really careful with galactagogues due to his sensitivities. I know that the stress, tiredness, lack of food, lack of time, lack of calcium (having a struggle with that) and me being so ill with this cold virus is helping my supply to tank and I'm doing what I can to bring it back up, but my body doesn't really respond to my pumps and my DS is not interested in nursing and having no luck getting enough milk when he does try. He has also stopped nursing at night (we've co-slept since birth).

I fought so hard over the past almost nine months to be able to bf him and I have done exclusively, never resorting to formula. I feel that after all of the effort, all of the dietary restrictions, etc, my milk supply beat me to it and ironically I had to go to formula anyway. I know that every drop of milk I get to him is worth the hassle, but I feel like I have two odds against me now (milk supply as well as sensitivities).

So it's been a horrid day so far. I'm grateful that I have the formula to give to him, don't get me wrong, but I did fight very hard and for a long time not to have to use it, and go against everybody around me due to this. I feel so muddled and I'm hurting inside - please do chime in.

Thanks mamas

xxx

[DevaMajka]

:hugs It sounds like you are stressed. You're right- every bit of breastmilk is a benefit, so give yourself kudos for that.

How old is your ds? I forget- are all the foods you are avoiding, known sensitivities or are you ED'ing to find triggers?

[mama9]

Originally Posted by DevaMajka 

:hugs It sounds like you are stressed. You're right- every bit of breastmilk is a benefit, so give yourself kudos for that.

How old is your ds? I forget- are all the foods you are avoiding, known sensitivities or are you ED'ing to find triggers?

Thank you for your hug!! You are so kind. My DS is 8 and a half months old. I avoid all top allergens and intolerance foods, we just got through the whole salicylate thing (supps seem to be helping but I haven't gone crazy on high sals foods). I was ED'ing, it seems like I am enternally ED'ing and never really got to baseline. I don't know if we could be at baseline because of the teething and two colds over the past 6 weeks. It appears that more teeth are on the way, so it could be a while before the teething is out of the way. I also have my own food issues.

Teething aside, I was coming to the end of the road with the diet because I wasn't getting enough fats/carbs in to make enough milk so I was struggling there. Now with DS having this on and off extending nursing strike (feeding-in-general-strike), it just plummeted my supply. DS is a hair away from dropping on the growth chart to a lower centile.

Just going to make up some formula for him as he is super fussy and has been biting my breasts (never happened before).

xxx
 

[DevaMajka]

aargh. I posted a reply, and now it's not here. I have just a minute before ds2 starts trying to destroy the computer area (ack, now he's getting in the silverware drawer!), so forgive me if I mis-type.

Basically what I said was that if it were me, I'd stop ED'ing and start eating a widely varied diet. Obviously, keep out everything that is a known problem.

The reason I say that, is because we ED'ed for 6ish mos (?) and never reached baseline. We did find one trigger, but that was early on. I'd gone to near TED's, and sometimes it got worse, and other times just didn't improve. We decided to get an IgG test, and since they are more reliable if you've eaten the food within a short time before the test, decided to eat every food for the test in 1 week. His rash didn't get worse (actually, it was a little worse the first day, but improved gradually after). It improved over the next 3 weeks, and was gone within the month.

His poop became a problem a couple months later (that's improving with supps), and his rashes/eczema came back. But, honestly, I'm better equipped to deal with food journaling and ED'ing now than I was then.

Knowing what I know now, I'm wary of extended major ED's to try to track down a trigger. I think ED'ing can become sort of addictive. We keep thinking "just a few more days/weeks and I'll have it all figured out." Then we become afraid to add any foods back in, for fear of the reactions getting worse.

Anyway, just something to think about.

sorry, GG, Ds is nuts. :lol

[mama9]

I gleaned a lot from your post, thank you so much....I'll just go try and put ds in his cot so that i can type....brb...

When I go to bed, which is not long after he falls asleep, I scoop him out of his cot and we co-sleep, but it's great to have even half an hour to do stuff! I was trying to reply to you earlier whilst DS was trying to pull the cable out of my electric piano, and then go to the pushchair to chew on the wheels (((eeewww!))). He figured out how to slide back the accordion door in the living room so now there is no stopping him when it comes to exploring!

I tried so patiently to get the Neocate into him tonight. I sat for an hour in front of a cartoon (the only way I can get him to eat at all right now) and alternated the bottle, open cup and syringe to get him to at least even sip at it. I was thinking that going slowly would eventually get it into him but he was spitting most of it out and we didn't even get a half ounce down him. He got really upset in the end so I stopped because it was distressing him so much. After his epsom salt bath he was actually trying to nurse, which is great (finally!) but now that he started trying, there was no milk, and he was shouting and crying and trying so hard to get milk. I was in tears. He looked so desperate and hungy :( I am so sad.

I obviously can't continue to try to get formula down him if he is not taking it. There must be a point that comes that I will need to take him down to the hospital or something, before he gets starved. I feel so mad and so depressed about this!

You are so right about that whole train ride of 'let me try one more week, two more weeks, etc'. I am also so terrified of adding back foods that I literally panic about adding new foods. In fact, I have eliminated foods from my psyche, not just my diet. I can't even think them up, let alone buy them and eat them. And as time goes on, it becomes a 'home' that you are used to living in and all inspiration for food goes out of the window (well at least for me, I've seen lots of mamas here become inspired to create great recipes etc but for us we had so much out that it was a joke).

It just feels so much like a punch in the stomach, you know? I've been tweaking my milk for DS for all of this time, it has consumed my life. And now there isn't any. There is a huge lesson in this for me. I lost sight of the woods by focusing so much on a single tree.

We went to see a GI the other day but that was a major let down for us. He was telling me that I am making things worse by delaying his tolerance to foods, due to the ED'ing and that DS will develop food aversions if I don't give him solids already.

Anyway...I feel like I am in a twilight zone from hell...all I want to do is to make sure he is not hungry at this stage. I am DESPERATE. I did everything I could to feed him over the months and now I can't feed him at all. It is like a nightmare.

I had a few dreams recently. They were interesting/symbolic. One dream, I was coming out of the supermarket with a small trolley of food in my hands that contained all of our current allowed foods. The trolley left my hands and rolled away into the distance and I lost all of the food. The second dream, I was getting on a bus with a bag of my allowed foods and I forgot them at the bus stop when I boarded the bus. I guess they were telling me that my ED'ing will come to an end! I know that I'm delving a little here but I live through my dreams!!

Okay...back to reality...I am definitely going to add more and more into my diet. I told DH this yesterday, that I will go back to pretty much everything except dairy and gluten and soy at this stage. I can't do eggs because within 12 hours of eating them I am hit with something close to PPD. So dairy, gluten, soy and egg are out for now. Also corn as I know that is a major no no right now. Coconut is also a scary one. So those 6 foods I will leave out for now. I can trial them some other time when we are way over this teething and cold virus madness.

xxx

[DevaMajka]

Originally Posted by mama9 

Okay...back to reality...I am definitely going to add more and more into my diet. I told DH this yesterday, that I will go back to pretty much everything except dairy and gluten and soy at this stage. I can't do eggs because within 12 hours of eating them I am hit with something close to PPD. So dairy, gluten, soy and egg are out for now. Also corn as I know that is a major no no right now. Coconut is also a scary one. So those 6 foods I will leave out for now. I can trial them some other time when we are way over this teething and cold virus madness.

xxx

I think that's a good plan. I was going to say that, as far as I know, everything besides dairy and gluten are out of your system pretty quickly, within a week I think. So you can always start again on eliminating stuff if things get a lot worse. But I think you have to decide what you are willing to tolerate while you get your supply back up- which is the lesser of two evils, kwim? Do all of his symptoms bother him? Or are there some that bother you more than him? (ds's rashes/eczema rarely seem to bother him, but I hate that it's there, kwim?)

If you can, give the widely varied diet a week or so before you give up on it. Like I said, ds's rash actually got worse on the first day or two, but then gradually improved over the next 3 weeks. If things don't get a lot worse, I'd keep eating everything, and keep a good food journal. If you eat a widely varied diet, maybe you'll be able to see a pattern in his symptoms and make educated guesses about what to take out.

That seems to be where we're at now- we're eating everything but sweet potato, and sort of going on hunches as to what to take out next. It seems to be working- after taking out about 10 foods that we suspected last week, his rashes have improved a bit. So we're going in the right direction, hopefully we're on to something. At the moment, I'm wondering if ED'ing for so long had something to do with my tingling extremities (it could be a coincidence, of course, but I have to wonder). I've read more than once on this board, as well as experienced it, that prolonged ED's can wreak havoc on symptoms. And I totally stressed about making sure my diet was as balanced as it could possibly be- I was constantly putting foods in nutrition sites to see what was lacking, and trying to add those nutrients in.

I really hope this doesn't cause problems for you. I would so hate to see this ED'ing hinder your bf'ing, then you find out later that you could have added back loads of foods. But since you know a bunch of trigger foods, hopefully it won't get much worse, if it gets worse at all. 

eta- wanted to mention that when I added foods for the IgG test, there were 96 food that were being tested. I was already eating 5-10 or so, but the other 80-90 foods I/we ate in one week- that meant a HUGE variety of foods.

Edited by DevaMajka - 11/27/10 at 5:47pm

[5gifts]

I really hope you can get a variety of food in this week, and get your supply going. And without any bad fallout! Can you eat a bunch of oatmeal/steel cut oats tonight? Luckily that is one of my few safe foods - I eat it with lots of almond butter and drink almond milk. Hopefully after a few (heartbreaking) sessions of him nursing so hard to get nothing : (  then your supply will pick back up. This tea is supposed to REALLY work 

http://tendergiftsdoula.com/store.html

One though is to make sure you keep things natural & simple - even though you might be adding many foods to your diet. Like don't eat anything with added sugars/spices/herbs.

[mama9]

Thank you both for your posts. I am going to sleep now (it's 2am in the UK) and I'll read them again tomorrow. I am feeling much more positive after reading them. Will tell you my thoughts tomorrow. Thanks again and have a wonderful day xxx

[mama9]

DevaMajka, thank you so much for aligning me! I have already added back in a few foods and DS has a bad rash on his mouth and chin (and his nappy area) but it's not getting any worse, it's sort of stable. I'll keep going and keep an eye on it as I go along. His nappy area is bothering him but other than that he's quite happy so far. I can't stand it when he is clearly bothered by something and I can't stand it when he is bloody poops, but hopefully things won't get so bad again and we can ride most of it through whilst I up my supply and my health in general.

I hear you about the health issues. I am super skinny right now and my hair has been falling out a lot. Also however, I discovered so many ways to be healthier through it all, and I discovered many of my own issues through DS. With the right balance, I'll be in a much better place with my new knowledge, I think. I was doing the same with the nutrition sites and I got addicted to those at one point!

I am sure that I could have a lot of foods but just too worried to go there. Now that my supply got hit I have nowhere to hide. It just took one cold virus to floor me. Also, I noticed things like if I take a long walk, the next few hours I have a lot less milk, or if I am more stressed than usual. It hasn't taken me a lot to get dips in my supply like that and I think it's all on the foundation of having been ED'ing for too long and with all the stress that comes with it.

Today my supply perked up until the early evening which is great. I had some nettle, raspberry leaf, and fennel tea, lots of it. I didn't get much sleep though. My throat is so raw it is bleeding and I feel terrible but at least DS is looking a lot better today.

I did some reading on the Kellymom site about the average daily amount of milk for EBF babies, did a calculation based on the amount of feeds that he usually has per day and used that as a rough guide to help me 'guestimate', keep track of what DS was consuming today and help me become aware if he is actually starving or not. It went really well I think. I only had to supplement with 1 oz of formula tonight, the rest was bm. I supped when one of my breasts ran completely dry by early evening. Then funnily enough DS was able to get more milk out of that breast, even after taking the formula. So far we are on track. The estimates are most likely not what he takes usually as I can't possibly know, but at least I know he isn't taking in less than the 'average' babe, iykwim. If anything it made me much more aware of his cues than ever before as I was watching so much more attentively. He seemed to be bright and perky and shining - his mood was good and his energy was up, wetting more in his nappies and he did that poop in the end.

xxx

[mama9]

Hi, I would have loved to do the oats but I've had back luck with it before. I will totally trial them soon because firstly they will totally help my supply, I made lots of bm when I did the last oats trial. Secondly, I could totally use the extra source of carbs and nourishment. I can't do gluten right now so I will try to find oats that have no cross contamination with gluten which could be hard. That's awesome that it is a safe food for you! Almond butter and milk....mmmmm....that sounds great too. I will definitely add almonds in this week. Hope I can find some g-free oats.

I tried looking at the tea on that site but I couldn't find what is in there so I can buy an alternative (I'm in the UK). Do you know what herbs are in it?

You are so right about natural and simple. It is a good idea to keep it clean if I'm going to be adding lots of foods back so quickly after so long. Thanks so much! xx
 

Originally Posted by 5gifts 

I really hope you can get a variety of food in this week, and get your supply going. And without any bad fallout! Can you eat a bunch of oatmeal/steel cut oats tonight? Luckily that is one of my few safe foods - I eat it with lots of almond butter and drink almond milk. Hopefully after a few (heartbreaking) sessions of him nursing so hard to get nothing : (  then your supply will pick back up. This tea is supposed to REALLY work 

http://tendergiftsdoula.com/store.html

One though is to make sure you keep things natural & simple - even though you might be adding many foods to your diet. Like don't eat anything with added sugars/spices/herbs.

[DevaMajka]

Originally Posted by mama9 

DevaMajka, thank you so much for aligning me! I have already added back in a few foods and DS has a bad rash on his mouth and chin (and his nappy area) but it's not getting any worse, it's sort of stable. I'll keep going and keep an eye on it as I go along. His nappy area is bothering him but other than that he's quite happy so far. I can't stand it when he is clearly bothered by something and I can't stand it when he is bloody poops, but hopefully things won't get so bad again and we can ride most of it through whilst I up my supply and my health in general.

Sounds good so far! Are things still going well? Has anything gotten much worse? I really hope not, but I'm glad your supply is better.

I wanted to say that I was the same way about adding foods- I was freaked out about it. The only reason I kept up with it was so we could do the IgG test, but I was kinda bummed about it the first day (but at the same time, I was excited about all the new food. lol).


Sorry it took me a while to reply- ds2 was hospitalized for RSV. He's all good now, though so yay!

[lil_miss_understood]

I hate to butt in, but have you had your thyroid tested recently, mama9?

Also, we had supply issues around the 9 month mark with DS2 (because of my thyroid, hence my asking), and using a SNS really helped to get in the milk/formula that DS2 needed while maximizing stimulation of milk production.

I'm not certain of your restrictions, but you might also think about checking Eats on Feets in your area to see if there's a mama in the area who can meet your needs.

[DevaMajka]

How's it going? Did his symptoms get worse? I hope not! How are you holding up? How's your supply?

[mama9]

Originally Posted by DevaMajka 

Sounds good so far! Are things still going well? Has anything gotten much worse? I really hope not, but I'm glad your supply is better.

I wanted to say that I was the same way about adding foods- I was freaked out about it. The only reason I kept up with it was so we could do the IgG test, but I was kinda bummed about it the first day (but at the same time, I was excited about all the new food. lol).


Sorry it took me a while to reply- ds2 was hospitalized for RSV. He's all good now, though so yay!

Oh no!! So sorry to hear about ds2 but very happy to know he better now!

In our camp things are tough right now. My health has taken a beating, I've been coughing up blood with chest pain, needed a chest x-ray and antibiotics (first time I've taken those in over 10 years). The abx caused myself and DS major stomach issues so I couldn't complete the course. DS can't sleep unless he's on me and he is crying through the night.

My supply is up and down but definitely not even close to substantial to feed DS with exclusively. I haven't given up (but was close as I feel so ill) and I ordered More Milk Plus, I'm doing nettle tea, drinking lots of water, etc. I even purchased a SNS because DS isn't doing great with bottles, cups, sippys, etc. I have the feeling that my supply will not respond to the herbs because I feel it is due to my health and lack of rest, and possibly an undetected thyroid issue as another mama mentioned here - will get back to that post. And goodness knows why I'm choking on blood right now (literaaly can't breathe when it comes up). I'm in bad shape.

I had a long talk with DH yesterday and we made a plan for now. What do you ladies think?

The Neocate and Nutramigen AA are horrid and DS hates them. I was reading up on formulas on Dr. Sears website and I really don't want to use an elemental if I don't really have to. I know that DS has reacted to dairy through my milk but I don't yet know how much of that was to do with my own reactions. I've read on some threads here of very experienced mamas with allergy babes who had no issues with direct dairy but big issues with dairy passed through bm. If DS is one of those babes I would much prefer to supplement him with a dairy based formula. The site also recommended no cow's milk before 1 year (he's 9 mo) so I'm assuming that formula is more digestible than straight up milk? If he can do dairy based formula I will use it until I can do homemade (if I decide to go there when the time comes). Also I'm sure it will be easier to keep his weight up if he enjoys the taste better which I suspect he might (but who wouldn't?). If he can't take dairy formula, of course I'll stick to the elemental formula. He's just not taking it right now. So I'm thinking to trial an organic dairy formula soon.

I want to nurse him whenever he wants to be nursed and I want to keep up with my diet for as long as I can but I don't know if I am being realistic. I'm falling apart health-wise, I don't have much help at all, no community to fall back on IRL (I relocated back to the UK when pregnant), and DH is hardly home at all. I'm trying to cook and clean and be a great mum and I'm just a mess right now. I'm not well and I need to care for DS and I have nobody home to help. I KNOW in my heart of hearts that if I stop bf I would get healthier. I need to find a balance here because I could end up in hospital and what would DS be feeding on then? In fact the doctors have told me that if the bleeding, pain and dizziness doesn't improve this weekend I need to go to the hospital but I didn't because I'm afraid they'll admit me and DS will be without his mama. But isn't this where I'm headed if I don't find a middle way I can be at peace with?

So sorry to go on, I just desperately need some clarity!

Thank you for listening if you're still reading!

xxx

[mama9]

Originally Posted by lil_miss_understood 

I hate to butt in, but have you had your thyroid tested recently, mama9?

Also, we had supply issues around the 9 month mark with DS2 (because of my thyroid, hence my asking), and using a SNS really helped to get in the milk/formula that DS2 needed while maximizing stimulation of milk production.

I'm not certain of your restrictions, but you might also think about checking Eats on Feets in your area to see if there's a mama in the area who can meet your needs.

Hi, your thoughts are much appreciated!! I'll check out that link and I ordered a SNS. I had my thyroid checked many times in the past as I've always suspected I'm hypo. I had it tested again a few months ago but even though the results were normal I feel that I've always had a problem except now it's worse. I haven't had the time to research along with all of the food sensitivity research I've been doing but I did have a kinesiologist tell me around 4 months ago that I had a thyroid issue which originated at the pituitary gland and when he tested my bm on me he found that my body found it very hard to make milk.

[coyotemist]

Not finishing your antibiotics can make things worse, the bacteria can get stronger and the infection can come back.  My son also reacts to them...but we just have to push through the meds to get well.  It's very important, especially with a lung infection.  You won't do your son any good if you are in the hospital too sick to care for him.

One other suggestion, which I hope you can implement, is to take the guilt and worry out of food.  Do not judge yourself if you have to give him formula.  You are only a "bad mom" if you don't feed him at all.  If you are doing everything possible to give him a full belly, then you are doing just fine. 

Have you tried solids yet?  Avocado, black beans, quinoa?  We have gluten free certified oats here in the states, I hope you can find some. 

Also, let him nurse on the empty breast, by doing that your body will respond and make more milk.

Good luck to you, keep up the good work.  I hope you feel well soon.

[mama9]

Originally Posted by coyotemist 

Not finishing your antibiotics can make things worse, the bacteria can get stronger and the infection can come back.  My son also reacts to them...but we just have to push through the meds to get well.  It's very important, especially with a lung infection.  You won't do your son any good if you are in the hospital too sick to care for him.

One other suggestion, which I hope you can implement, is to take the guilt and worry out of food.  Do not judge yourself if you have to give him formula.  You are only a "bad mom" if you don't feed him at all.  If you are doing everything possible to give him a full belly, then you are doing just fine. 

Have you tried solids yet?  Avocado, black beans, quinoa?  We have gluten free certified oats here in the states, I hope you can find some. 

Also, let him nurse on the empty breast, by doing that your body will respond and make more milk.

Good luck to you, keep up the good work.  I hope you feel well soon.

Hi, and thank you so much for your post. After reading your post and getting an earful from DH about finishing the antibiotics, I'm back on them, although I've missed a bunch of doses. I will try my best to stick them out if it means that I can prevent myself from becoming to sick to look after my boy.

You are so right about the self-judgment. It's just so hard to take a bird's eye view sometimes when I spend so much time and energy on the small details. It is definitely time to pull focus and allow the fullness and gratitude of being a mother and loving my son to radiate over the particulars.

We've been offering solids. I've been giving him solids every other day or so and he has only started showing real interest in ingesting it over the past few days, but even so, it's a few teaspoons or less.

Since he was born I've offered him the breast often, and this hasn't changed - he also nurses through the  night (we've co-slept since birth). I'll let him suckle whenever he wants, even if I am totally dry. I haven't seen a response in my milk production from all of the suckling, and recently he's been doing a large amount of suckling from the distress of the antibiotics. He also had a cold at the same time I got ill, which is gone except for a tickly cough that is almost over. This is what leads me to suspect even more that it could be my thyroid that is adding to the supply issue.

Thanks again, be well and take care xxx

[mama9]

My little update for the night - DS is taking in less and less formula. He just won't drink it. He's relying on my milk right now. He is getting a few sucks out of the left one, not much on the right but he does okay there when he is dream feeding which is probably due to him not having to be so patient whilst he's sleeping! I'm wondering if the SNS will help here because I need to get fluids and nourishment into him to make up for the shortfall. I'm hoping the SNS will arrive tomorrow so I can get started with it, and if it can blend with any milk that I have, it may also mask the flavor of the formula for him.

My brain is still ticking over the prospect that he may be able to tolerate dairy formula...just very scared to try it.

[coyotemist]

Good idea to mix as long as none gets wasted!  We did this when I was transitioning to formula (long story, my son couldn't nurse).

[True Blue]

Have you tried giving him goat's milk?  It's closer to breastmilk than cow's milk, and tolerated by many who can't tolerate cow milk.  It might be better than formula in many ways, especially since he is getting some breastmilk in addition.  It would be even better if you could get it fresh and raw, but I would seriously consider trying that first, before cow-based formula, IMHO.  I have a cousin who had to stop bfing and used fresh goat's milk and formula for a very young baby.