feel like I can't go on anymore - please help

[bjutka1]

Oh that would be great if I could have moderate, too! I think I really need to eat better, this starving business is not doing any favours to anyone. This morning I tried to express and I got nothing close to the usual amount so the Dr Sears total strict diet is obviously affecting my milk supply, too.

How do I know what's moderate? I printed out the failsafe diet but can't see the moderate stuff on it. Is banana moderate? Is there a list with the moderate stuff on it too?

RE thickener - I'm in Northern Ireland, not US, so probably only Gaviscon here.

[EloysH]

Yes the Dr Sears diet is unecessarily tough (in my oppinion)

You will need to buy the elimination diet handbook from the  RPAH Allergy unit website  to get the lists of whats moderate and low etc- it's essential for doing the diet. It has shopping lists, recipes, and the food charts.  However I think I have emailed you just the fruit and veg charts in pdf format showing low moderate, high and very high,  just let me know if you didn't get that.

Bannana "just ripe" is moderate in amines.  If ripe its high in amines and can't be eaten.  There are no sals in bannanas.

Other moderate fruit is peeled delicious apples.  Other apples peeled are high.

All fruit and vegetable juices are not allowed.  THe only allowed drinks are water, and decafe coffee saoda water and homeade lemonadie with citric acid as the lemon element.

For oils, olive oil is high in sals, so not allowed.

[bjutka1]

Got the fruit and veg one, thanks. Wonder how long it will take for the booklet to arrive. There was blood in Julia's poo again today so I'm beginning to get really down again...
We have to go back to the allergy clinic again on Monday so I'm pretty sure when they hear about the blood, they will say that's it, you had your 2 weeks, she is still no better, have to go on the formula now...

[firsttimemummy]

so I'm pretty sure when they hear about the blood, they will say that's it, you had your 2 weeks, she is still no better, have to go on the formula now...

it's your baby and your choices, they can't force you.

Lots of hugs.  You are getting there xxx

[~*~Louisa~*~]

have they tested her poo?

if she is thriving and gaining weight and is reasonably happy then the way to think of it is the blood is just the left over reaction in the gut

I wanna give you a huge *hug* though because i do know how you feel when my hv weighed Alyssa this week and we saw she only gained 1 1/2oz and she said its back to the pead I said "oh and that means we will be dropping more breast feeds"

I just think as long as she is okay really in herself and your happy to ride this through dont let them bully you into doing something you dont want to.
You sorting out your breast feeding diet is just the same as sorting out her weaning diet but less harsh because lets face it they are not psychic they wont be able to kow what food she cant have without trying her which will effect he alot worse then your dieit iykwim

I would tell them that you want to continue breast feeding but would like there support to sort your diet to arrange it
I dont know what kind of person your seeing, I know my pead told me to ask the kids dietion to go over my diet more to keep me healthy at this point as ive identified everything really

[bjutka1]

Thank you so much, Louisa! They have tested her poo but it was a while ago and it was okay. She is thriving and gaining weight but I would be lying if I said she was happy. She is miserable! Cries so so much!!! Half the time the reflux is bothering her, the other half it's her poo. She poos very frequently - like 8 times a day min and it's not very much but runny and mucusy. You can tell she is in distress and it's long before she finally produces a poo.

If only I could be sure this is gonna work. I hate to see her in so much pain. And to think that it's my breastmilk, it's just terrible!!

And there is my little boy who is not getting the attention he needs...

[~*~Louisa~*~]

Right so she is thriving so your milks gotta be doing some good right!

now what if you put her on Neocate and her reflux is still bad? I bet you would be gutted that you gave up for nothing... again i know how you would feel cause i know for me if i put Alyssa on neocate 100% not just 50% like now and no improvement its going to be soooo horrible.

you find what is irritating her gut in your diet and you got milk thats better then Neocate  

OR the other thing is to trial the neocate like i said before pump when your feeds should be and take fengurk (sp?) to keep supply up and then you can see if it works?

you just shouldnt let anyone else make up your mind on feeding YOUR baby

If you WANT to breast feed get them to help

If you wanna talk feel free to pm me I also know how bad your feeling and how hard it is ive got another little girl who is 2 who has her own problems and juggling them both is a nightmare im just lucky my eldest is in school

[hrk]

Have you ruled out anatomy issues looking for anything?  Do you have a gi or just an allergist at this point?  We tried a lot of the foods on dr sear's list.  MANY were not good for H.  Low salicylate helped us a lot.  (Our gi knew about salicylates, but the first allergist did not; second did, but I had to ask specifically his knowledge of this area prior to making an apt).  We did have a raging reflux problem as well as food intollerance.  

As far as the unsettled behavior...  Have you tried any other meds (were they any better/worse?).  Was there ever a period that was better on the meds?  MARCI has a lot of good info on dosing and learning about how the med works.  We administered the meds in a way that would give us the most benefit (following all the info/suggestions on MARCI-Kids).  Losec is omeprazole (from what I can see), so you can read through the administration info for PPIs.  A lot of the info there WAS NOT on our drug info sheet.  It didn't even tell us to administer it prior to feedings.  :-(  WE also followed the guidelines for recommended dosing on MARCI, and then gave meds three times a day (and gave it an hr before eating).  It wasn't until we started following marci's guidelines when H was 9 mo; then we had a sttn and a happier baby.  Wendy, the former crc mod, mentioned that site to me.  http://www.marci-kids.com/medications.html

Because of some bfing issues, I went to formula (alimentum, a hypoallergenic) at about a month.  No other formulas worked, so I think he was mspi. I give you so much credit (and all the other moms who are bfing on such a limited diet).  I didn't know about what to avoid (my dr never suggested changing my diet; BAZOINKS!).  I didn't find bw until H was 5 mo, so I didn't find the info/support until way too late for bfing.

I assume you are already using all the nonmedical things to keep more upright, sleeping on an angle of at least 30 degrees, not feeding prior to laying down, perhaps a paci.  Trying to think of anything else that may help get you through this time until you have things more figured out.

OH, and the best read that I found and actually helped ME figure out the reflux issue was the book "Colic Solved".  It helped me wade quickly through some possible scenarios that could be happening gi wise.  http://www.amazon.com/Colic-Solved-Essential-Infant-Difficult/dp/0345490681/ref=sr_1_1?ie=UTF8&s=books&qid=1300909528&sr=8-1

[bjutka1]

Thanks for that! Gonna have a good look. We are doing all the reflux things but she never took the paci. She has only been on renitidine before losec and that wasn't any good. They just upped her dose for losec to 10mg per day and she is 5.6 kg. Doc said to give it in one go even though I thought twice a day would be better (half a tablet in the morning and half at night.)

The dieitian that I spoke to knows of sals and is meant to send me a list ... but havent' yet.

Haven't ruled out anatomy issues. How do we do that? I asked the allergy nurses but they said they would only refer her on if she was on the neocate for 2 to 4 weeks and that didn't work either. What would she need? X ray, ultrasound?

Also, has anybody noticed their LO with similar issues to dribble a lot? And have quite noisy breathing, losts of bogies?

[~*~Louisa~*~]

yep! Alyssa is a dribble monster and constantly sucks her fingers, I wish i could show you how dribbly she is, she smiles at you and its like a tidle wave lol

She can be quite chesty when reacting she also stops breathing for a few seconds then will suddenly gasp for air  though when clear she isnt and is very snotty too

Snotty i think is to do with reflux *I THINK* I know hers seems to come when reflux is bad and when she is crying because of it she gets worse and worse

[bjutka1]

Quick question - can I eat a plained grilled chicken out of the supermarket on the failsafe diet?

[EloysH]

you can buy your chicken form the supermarket chekc the packed dates so it is fresh as possible.  It needs to be frozen that day or eaten that day so it does not sit for longer than 1 day.   Can't buy cooked chicken unless you know what type of oil they use to cook it in... many oils have synthetic antioxidents in them even if they are canola or sunflower oil (low sals).

Be careful with BBQ chicken, you can eat those with skin off if you know howit was cooked... but many sprinkle flavouring on top which ends up being MSG.    And many aren't even aware of what it is on their chicken they just say seasoning - and often it is MSG, herbs and pepper all which arenlt allowed.   I call up my chicken shop and ask them to roast one for me with salt only on top.  I can now eat chicken  skin though as LO passed the amines food challenge a long time ago. 

[hrk]

http://www.marci-kids.com/complications.html 
MARCI also lists some complications that are factors contributing to reflux (if it is a reflux issues); figuring out if you have any of those can help you with the reflux. 

http://www.marci-kids.com/dosing.html  MARCI also has a dosing chart based on age/weight. 

http://www.marci-kids.com/dosingppis.html  Read here about what it says about the half-life and area under curve of meds in kids.  You may want to consider trying a split dose to see if it helps.  And try the 30-60 minutes prior to feeding if you can; it can be hard when they are so little.  At nine months when we learned this, we are able to work it in to the routine pretty well.

I will say that going low salicylate helped a lot; we were finally able to get off meds at age 2.  We do also have low tone, so that could be a factor in why he was refluxing so long, as well.  He had an upper gi at 20 months (an xray of the barium as it flowed through the gi looking for any issues with anatomy; we could actually see him refluxing within a minute of having the barium) and we did also do an abdominal ultrasound to look for partial blockages of the intestine.  During the ultrasound, we found an enlargement of the collection system of the kidney, which can also cause abdominal pain.  As I mentioned, we didn't do those things until later with the guidance of our gi.

Food intollerance was the last key to figure out.  My dh also has EE (eosinophilic esophagitis), so that could have been a possibility. http://www.apfed.org/ee.htm  You can scroll down to look at the symptoms of EE.  That would require an endoscopy to determine.  :-(  We opted not to go that route, but that would have been the next step if trying low sals didn't work at that point.  I didn't know about amines, etc until much later.  Our allergiest said that actually the foods we were most concerned about actually looked like foods with histamines.

Here is another easy salicylate list that I used for about a year for as quick resource as well.  http://salicylatesensitivity.com/about/food-guide/

I know I read a ton looking for any plausible expalnation that would solve what was going on.  Sorry for the resource dump, but maybe something will help or you can look at it later.

Also with the noisy breathing, have they listened to the chest for any wheezing along with the breathing?  Are the lungs clear? http://www.marci-kids.com/whatisgerd.html  Scroll down to read about EER issues with regards to reflux.

[bjutka1]

Wow, that's a wealth of information, thank you so much! From the sounds of MARCI, Julia is still not a high enough dose of losec. Not sure how I can convince them again to up it when it was just upped a couple of days ago. I'm worried about the little noisy breathing and coughing but every time I take her to doc, they say her chest is clear. Sounds like we have EER issues. because there is a definite horseness to her throat too. What can you do about all this?

Spoke to the breast nurse today and she suggested that foremilk - hindmilk imbalance could at least be part of our problem. I always had a bit more milk than needed. She said that can also cause the mucous in her poo. Her poo is often explosive as well and goes up her back. She suggested block feeding so I'm gonna try that for a few days and see if that improves things at all.


Great about the salycale charts - gonna be able to use these really well. I'm gonna sound really stupid now but what are amines and the other latin words you keep mentioning that we are to avoid? Are they the chemicals or preservates they use? What is is so important that the meat doesn't sit in the fridge, not even for a day?

[EloysH]

Read bleow about the amines  and glutamates they are just as important as sals to avoid, they are a naturally occourring food chemical.  If LO is intolerant to Sals they are HIGHLY likelty to be intolerant to preservaties and additves and the amines and glutamates.

http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/amine-content-of-selected-foods/

Actually probably need ot do a full read of the above website in order to graps the diet.  I have not provided the charts for meats, grains, oils, legumes, flours,  THey are all in the Elimination Diet handbook.  I don;t think the diet can be done properly without this book.