Author Topic: feel like I can't go on anymore - please help  (Read 19809 times)

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hrk

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Re: feel like I can't go on anymore - please help
« Reply #45 on: March 25, 2011, 04:17:19 am »
How long have you been on the omeprazole?  It may need a little time to improve things?  Is your dr specifically for kids or have any gi training?  I did take the all of the physician information from the links on the left side of the marci page to the pediatrician.  I also brought in a copy of the suggested dosing by marci and a list of the research and a couple of articles. 

My pediatrician said the clinic was "on her" about giving higher doses of reflux meds, but because I had requested it (and brought the information), she was willing to do the adjusted dose.  Mind you, we had already tried everything she suggested by that point (getting rid of the paci, night feedings; eye roll; wouldn't do that ever again).  We were already on a hypoallergenic, too.  Once night feeds and paci were gone and things were still off the wall, I think she was finally willing to let us try it, and she had seen dosing like that coming from the clinic with the 6 pediatric GIs in the city.  And she thougth the info looked legitimate.  That was at 9 months when I came across the info; I just should have gone to the gi MUCH sooner.  Both GIs were fine with the dosing, but as time went on, it was becoming more unlikely that it was just plain old reflux, iykwim.  It was literally two days (things improving over those two days) before he FINALLY sttn.  We didn't figure out the food intollerance, as things were never consistent with regards to foods.  One time fine, or the combo of foods was also a factor; it was hard to pin down.  Couldn't ever reduce the meds by even a half tab.

Our second gi suggested we try another ppi to see if we could get from the 45 mg dose of prevacid to a lower dose on another ppi.  It did work, as he went from 45 mg of prevacid solutab to 20 on nexium.  That is why I asked what you had tried prior.  Ranitidine is an H2 Blocker, so it works a bit differently than a ppi. I hope you start to see some improvement very soon with the med and dosing change.

The book Eloys mentioned is helpful.  Although, I had to muddle through for the first year with just the salicylate info.  Just doing that made MAJOR improvements for us; enough of an improvement that we were able to get off meds.  We did start all over again with food trials at age 2. I wish I had known more when H was just starting solids.  But better late than never, and at age 3.5 he is doing very well and eats pretty broadly (FINALLY).  We do make the majority of our meals from scratch to avoid a lot of food additives and dyes. 

With regards to respiratory issues, we do have a nebulizer, as he has had a number of cases and needed treatment for wheezing (one requiring an er trip; which lead to the er dr writing a script for the nebulizer).  I would probably bring in the EER info, as well.  If the reflux is a bit more under control, then perhaps those issues will begin to fade and your lo will feel better.  I know our pedi always asked about ear infections, coughing, congestion with regards to his reflux (despite disregarding other things ;-).     

Offline bjutka1

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Re: feel like I can't go on anymore - please help
« Reply #46 on: March 25, 2011, 14:07:21 pm »
I'm starting to think that Julia has lactose intolerance. I have read the following:

"Lactose intolerance causes stomach pain from an overproduction of gas in the intestines. Often, babies will show signs of pain after a feeding by grimacing, crying inconsolably and twisting their bodies around to relieve the discomfort. Generally, these behavioral signs are related to a feeding, but general fussiness can persist throughout the day. Babies will also have trouble sleeping more than normal. They may wake up suddenly as if in pain and start crying.

Lactose intolerance shows up strongest in symptoms of the gastrointestinal system. Colic and excessive gas as well as diarrhea and spitting up or vomiting are signs of lactose intolerance in babies. According to pediatrician Dr. Sears, diarrhea in babies is different than the usual soft yellow stool. Diarrhea in babies with lactose intolerance is runny, dark in color and occurs many times during the day."

The last bit especially is very true for her - her poos are runny, dark and occur many times during the day.

Anybody has any experience with this?

Jutka - lucky mother to 2 gorgeous babies
Peter 25 Oct 2009 and Julia 28 Dec 2010
Married to a loving and proud husband on 25 Aug 2007

hrk

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Re: feel like I can't go on anymore - please help
« Reply #47 on: March 25, 2011, 14:23:39 pm »
It could be; I think Eloys had wondered about lactose issues.  We even tried a lactose free formula, but it didn't work for us (I say we tried the "rainbow" of similac, and the only one that reduced the gas was the alimentum).  You don't know what you really have happening for sure, so it could be.  Plus, depending on the individual, reflux can flare up based on the foods being consumed.

XXXXXXXXXXX

Also, I think the book Colic Solved also mentions dosing for reflux, too, if you are looking for more resources on that info. 
« Last Edit: March 25, 2011, 14:25:22 pm by Jean :-) »

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Re: feel like I can't go on anymore - please help
« Reply #48 on: March 25, 2011, 15:37:28 pm »
DD#2 was diagnosed lactose and mpi we were told her bad poo and slow weight gain was lactose and bad skin was mpi BUT I dont know for sure how right that was because i now know that MPI can cause the same signs.

Its more common for babys to be mpi then lactose but either way you would really need to go on the dairy free elimination diet to find out, you can after maybe 2 weeks try yoursel with laco free products and see the reaction, if she is fine witht he lacto free stuff through your milk BAM you got an answer lol




DD1 Angel/Spirited - Glue ear
DD2 Angel - MPI, Excema, Late talker
DD3 Angel - Milk,Soy, nut,egg intollerence, Saliciyte sensitivity, Reflux

Offline EloysH

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Re: feel like I can't go on anymore - please help
« Reply #49 on: March 25, 2011, 17:39:44 pm »
The symptoms for food intolerances in babies are all similar.  Those smyptoms also describe MPI.  Its just that lactose intolerance is more widely understood as an issue so its gets a write up. But really, a salicylate intolerance or other cause the same symptoms.  Which brings us back to completing an Elimination Diet with group by group food challenge.

 

Offline bjutka1

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Re: feel like I can't go on anymore - please help
« Reply #50 on: March 25, 2011, 21:10:47 pm »
Eloise, I find it impossible to follow failsafe to the letter and feel rotten about it. The whole thing about getting everything completely fresh, not vacuum packed out of the supermarket is just impossible for me to achieve with the 2 kids and Julia screaming all the time. How do I know if she is reacting to amines as well as sals? Am I right in saying that if I fried some chicken today, I can't put it in the fridge to eat tomorrow?

Jean, when you say you paid attention mostly to sals, did you not worry about the other stuff so much?

I'm trying to find the Elimination Diet handbook on the website but only found a cookbook. Would you mind sending me the link?
« Last Edit: March 25, 2011, 21:32:37 pm by bjutka1 »
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Peter 25 Oct 2009 and Julia 28 Dec 2010
Married to a loving and proud husband on 25 Aug 2007

Offline EloysH

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Re: feel like I can't go on anymore - please help
« Reply #51 on: March 26, 2011, 01:44:51 am »
I am not sure if I could have done it without the support of a dietician and a butcher within walking distance of my house.  You can freeze all your meat as soon as you buy it then pull out items to defrost in the morning for cooking for that night. It's all new habits.  Meat can be in the fridge in a thawed state for more than 24 hours otherwise they  build up in the meat to high levels.

Firstly one must get all the chems out of your and her system and reach baselines by eating the diet at a moderate level for 4 weeks.  Once her poos have settled and her symptoms have settled you can move to complete the food challenges for sals, amines and glutamates.  They involve eating large quantities of each group for one week or until they react.  If they react they have failed the challenge.  Once you know what they are sensitive to, then you can look at building up their tolerance to tht offending group by adding very small amounts into their diet in a controlled manner - this is called liberalisation. 

http://www.sswahs.nsw.gov.au/rpa/allergy/



hrk

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Re: feel like I can't go on anymore - please help
« Reply #52 on: March 26, 2011, 02:19:02 am »
I had no idea about the other stuff (histamines or amines), so yes, I only focused on sals that first year.  And we went to homemade removing many additives/preservatives/dyes (focusing on trialing fruits and veggies).  Ironically many of the worst foods for him were high in both histamines and sals (strawberries, tomatoes, yogurt (berry; we never really did plain), turkey (processed), and chicken (processed was gassy; fresh was much better), avocados.  Here is a histamine food list: http://www.michiganallergy.com/food_and_histamine.shtml

I do believe we had issues with his lower esophageal sphincter relaxing (marci suggests for most kids it doesn't mature completely until 18 months; it is the muscle that is supposed to block the acid/tummy contents from flowing back in to the esophagus).  With his low tone (a sensory issue that produces less muscle strength), the occupational therapist mentioned that the low tone could also have possibly been a factor in the weakness of the muscle strength in the LES (why the reflux lasted longer than it should).  It is really difficult to determine all the pieces of the puzzle, but you will figure some out.  It could be a combo of factors between food intollerance, other contributing factors causing reflux like an immature LES, another issue like EE (that still seems to be food allergy based). 
 
Eloys mentions 4 weeks, but there is a lot to learn before diving in for those 4 weeks.  As you mentioned, you don't know how feasible it is.  Perhaps start small adding/learning along the way.  You questioned dairy and lactose, so perhps start there.  And when you get more info on failsafe, then you can move on to that.  Eliminate the easiest/quickest things first. 

How long since the med adjustment and upped dose?  Any signs of improvement?

Offline bjutka1

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Re: feel like I can't go on anymore - please help
« Reply #53 on: March 26, 2011, 08:08:54 am »
Hi, I have actually been dairy, soy, wheat, eggs, citrus fruits and nuts free for 2 weeks now. (Milk and eggs for 4 weeks.) The last couple of weeks I have been trialling Dr Sears elimination diet and Failsafe but I realise now that I haven't done it properly - I was not as strict as I should have been with the meat and slipped a couple of times (had potatoes with skin on, avocados and bananas on one occassion.)

This morning I opened Julia's nappy and it was terribly mucousy again and up her back. I just break down in tears now every time I see this. She also never stops crying during the day, sleeps 30 mins here and there if you're lucky.

Are you saying it will take 4 weeks FROM NOW for symptoms to improve if I'm being very stict with the diet - (which is not always feasible). Everything I have done so far is not good because I wasn't as strict. I just cannot see her in so much pain for so long! Feel like going on to neocate but I know how she will scream and she might then be consipated from it so I'm just trading one problem for another.

Meds haven't seemed to make a difference so sometimes I wonder if there is a reflux issue there at all.

Don't know what to do anymore - very depressed about the whole thing...
Jutka - lucky mother to 2 gorgeous babies
Peter 25 Oct 2009 and Julia 28 Dec 2010
Married to a loving and proud husband on 25 Aug 2007

Offline firsttimemummy

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Re: feel like I can't go on anymore - please help
« Reply #54 on: March 26, 2011, 09:40:18 am »
Lots of hugs xxxx Remember babies can also get mucousy if they have a cold. You have done so well to get this far, you do whatever feels best for you xxx  You could always do neocate now and then to give you a break and then go back to breastfeeding, for days you just can't handle the diet??
L x Having a bw break from 1 Feb 2012 - if you want to get in touch please send me a pm.  I may not be here but you are all in my thoughts xxxx (probably be back some time)

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Offline bjutka1

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Re: feel like I can't go on anymore - please help
« Reply #55 on: March 26, 2011, 10:09:53 am »
It just feels like what I have done is very little in terms of her getting better. No results! I think her musousy poo is probably a secondary lactoze intolerance. We tried her with neocate but she wouldn't take it. Might need to keep trying. Even do mixed feeding till she improves then I could go back to breastfeeding. Or maybe not if my milk is so bad for her. This breaks my heart. The thing is though she might not take the neocate, no matter what we do.
Jutka - lucky mother to 2 gorgeous babies
Peter 25 Oct 2009 and Julia 28 Dec 2010
Married to a loving and proud husband on 25 Aug 2007

Offline firsttimemummy

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Re: feel like I can't go on anymore - please help
« Reply #56 on: March 26, 2011, 10:26:02 am »
does she take your milk from a bottle ir is it just neocate she is refusing? Murray wouldn't take a bottle if I was around (he did after a while though); Oliver takes anything from anyone!

You can get colic drops that destroy the lactose - Boots etc sell it \(forgotten name) ...

Hugs and more hugs. 

L x Having a bw break from 1 Feb 2012 - if you want to get in touch please send me a pm.  I may not be here but you are all in my thoughts xxxx (probably be back some time)

still happily married, just not counting!

Offline bjutka1

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Re: feel like I can't go on anymore - please help
« Reply #57 on: March 26, 2011, 10:42:12 am »
That was my Peter too. Didn't care if it was my milk or formula - he took it. Julia is a different story. She took my milk a couple of times from teh bottle but more often than not, she won't. And if it's neocate in it, she just screams but doesn't drink it.
Must check out those drops you mentioned.
HAve you ever tried Solgar ABC dophilus. It's a probiotic.
Jutka - lucky mother to 2 gorgeous babies
Peter 25 Oct 2009 and Julia 28 Dec 2010
Married to a loving and proud husband on 25 Aug 2007

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Re: feel like I can't go on anymore - please help
« Reply #58 on: March 26, 2011, 11:55:16 am »
You can rule out the lactose intolerance with the lactease drops (if symptoms clear on the drops) or else get a stool sample and test it for undigested sugars.  True Lactose intolerance is quite rare, where as milk protein intolerance is very common.

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Re: feel like I can't go on anymore - please help
« Reply #59 on: March 26, 2011, 11:59:01 am »
WHere do you get the probiotic from?

Maybe try bottles with your LO at different times of day and see if that helps? Maybe a different bottle would work? Could you mix a bit of neocate with expressed milk?  Murray wouldn't touch necoate at first but we add pureed fruit (he was almost 2 when we started!) and now he would drink it non stop all day! Must be an acquired taste!

Here are the drops - not the ones I have seen in Boots but do the same
http://www.natural-alternative-products.co.uk/colief-infant-drops-lactase-enzyme-drops-7ml-p-927.html
Not sure if they are any help.

p.s Just reading the post that has just been typed - we got Murray's stool tested but it came back negative, but I read online that the sample has to be tested within a couple of hours which is unlikely by the time the lab processes it ....
L x Having a bw break from 1 Feb 2012 - if you want to get in touch please send me a pm.  I may not be here but you are all in my thoughts xxxx (probably be back some time)

still happily married, just not counting!