our oncologist appt :( - Page 11 - Mothering Forums
Forum Jump: 
Reply
 
Thread Tools
#301 of 338 Old 12-14-2008, 08:44 PM
 
tanyalynn's Avatar
 
Join Date: Jun 2005
Location: TX, but anticipating one more move
Posts: 11,508
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by momofmine View Post
What can you do to ensure adequate bile, and what causes it to be inadequate?
Subbing, I wanna know too. Wondering about my daughter.
tanyalynn is offline  
#302 of 338 Old 12-14-2008, 10:32 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
momofmine, maybe your ds was allergic to one of the components in the specific probiotics you had?

cs, i know what you mean about the goats milk kefir, i was totally prepared for it to be a big bomb. i havent tried any other dairy products fed to her directly. the only dairy i have had before this was clarified butter and she reacted through bm. its been 12 months since i had any other dairy and kefir is so good for you that i am really excited she seems to be tolerating. i wish i could get raw goat milk so i could make the kefir myself, but raw milks are illegal in florida
ellasmama2007 is offline  
#303 of 338 Old 12-15-2008, 03:00 PM
 
momofmine's Avatar
 
Join Date: Jan 2007
Posts: 3,087
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by ellasmama2007 View Post
momofmine, maybe your ds was allergic to one of the components in the specific probiotics you had?
You know, this is what I thought at first too. I thought it was the FOS or inulin. And while I still think the inulin or FOS was not good for us, I have tried several different probiotics now and they help at first, but after a bit, they cause blood. Every single time. Since stopping the probiotics completely for my 4 yo, he has had no blood. I still had it once, not taking the probiotics.

I also looked back in my notes from when my first child was really young and on SCD, and when I tried the acidophilus, same thing, blood in stool. I don;t know, I don't know if it's that our guts are that messed up that the probiotics can't help. Or if maybe we already have a bacterial overgrowth (as opposed to yeast or a deficit of bacteria) and therefore the probiotics make it worse? I don't know.
momofmine is offline  
#304 of 338 Old 12-15-2008, 03:07 PM
 
momofmine's Avatar
 
Join Date: Jan 2007
Posts: 3,087
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by ellasmama2007 View Post
i wish i could get raw goat milk so i could make the kefir myself, but raw milks are illegal in florida
If what you are drinking works, you may not want to mess with it, but if you want to try raw milk, you may be able to get it. I am also in a state where it is illegal to SELL it for human consumption. You can sell it for pet consumption, and you can drink it yourself if you have the animals. So, we have farmers who offer animal shares. Basically you purchase a share of the cow or goat, pay a monthly fee for it's upkeep (you are paying the farmer to take care of your animal that you own in concert with others), and in return you get a weekly gallon or whatever of raw milk.

You can scroll down to Florida here:

http://www.realmilk.com/where1.html#fl

Or it looks like there is a whole organization in your state advocating raw milk. You can look for a producer on this page:

http://www.realmilk.com/where1.html#fl
momofmine is offline  
#305 of 338 Old 12-15-2008, 03:59 PM
 
Panserbjorne's Avatar
 
Join Date: Sep 2003
Location: The Great North
Posts: 12,080
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
bacterial growth *can* decrease bile production. Well, to be fair there are bacteria that feed on bile so it doesn't decrease production but it does decrease the usable amount as far as your body is concerned. The best approach in my mind would be to support the liver.

There are other issues that can interfere with bile production and flow, of course. But in this context this is a big deal. Regulating the body and optimizing bacterial balance will be important.
Panserbjorne is offline  
#306 of 338 Old 12-16-2008, 10:04 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
so i went to my oncologist again today and.....(drum roll please).....
my eos are down to 611!!!! so just to rehash, they started at 5200 in october and went down to 2300 at my last appointment a few weeks ago.
he wants to see me again in 2 months because he would like them to wind up less than 500, but he's very pleased that they are as low as they are ( do you like how i have to go back to him to have my levels checked even thought he doesnt know what is wrong with me or what fixed it?!).
he still doesnt buy the whole clo/vit a toxicity but would rather not test for vit a levels ( this smiley seems to work a lot when discussing allopaths). and maybe it isnt the vit a - maybe i am allergic to cod or something, but he thought that i would have some outword symptoms of allergy if that were the case. and also my igE has been normal. it's definitely a pickle (and not a bubbies.
anywho, i just wanted to share some love and good news with you all - you've been absolutely increadible through this. i also have some other amazing news, but im going to open a new thread so that maybe some others will benefit too...
hugs to you all!!!
ellasmama2007 is offline  
#307 of 338 Old 12-16-2008, 10:11 PM
 
changingseasons's Avatar
 
Join Date: Mar 2008
Location: Seattle
Posts: 8,802
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
That is SO great!!! Now I have to go look for your other thread... I love good news.

Mom to DD1 (10/07) and DD2 (3/11)
geek.gif I blog about our life with food allergies and eosinophilic disorders.
changingseasons is offline  
#308 of 338 Old 12-16-2008, 10:31 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
sorry, i had to type it between tears of joy
ellasmama2007 is offline  
#309 of 338 Old 12-16-2008, 10:38 PM
 
Panserbjorne's Avatar
 
Join Date: Sep 2003
Location: The Great North
Posts: 12,080
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
link to the thread!!!!

That is super fantastic! I'm so thrilled for you!!! :
Panserbjorne is offline  
#310 of 338 Old 12-16-2008, 10:40 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
ooops, sorry i forgot..
http://www.mothering.com/discussions....php?t=1013830
ellasmama2007 is offline  
#311 of 338 Old 12-17-2008, 12:35 AM
 
WuWei's Avatar
 
Join Date: Oct 2005
Location: In the moment
Posts: 11,492
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by ellasmama2007 View Post
sorry, i had to type it between tears of joy
Me too, mama, me too.


Pat :

I have a blog.
WuWei is offline  
#312 of 338 Old 12-20-2008, 04:07 PM
 
WuWei's Avatar
 
Join Date: Oct 2005
Location: In the moment
Posts: 11,492
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by WuWei View Post
Spectacular. I have a big huge smile!! :

He is just fear-based, not trust based, like we are.
::


Yipee!


Pat

Just thought I'd requote this post.


Pat

I have a blog.
WuWei is offline  
#313 of 338 Old 12-20-2008, 09:16 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)



so pat, why did you put the dead snake in tupperware in the first place? yummy stew?:
ellasmama2007 is offline  
#314 of 338 Old 12-20-2008, 09:18 PM
 
tanyalynn's Avatar
 
Join Date: Jun 2005
Location: TX, but anticipating one more move
Posts: 11,508
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by ellasmama2007 View Post



so pat, why did you put the dead snake in tupperware in the first place? yummy stew?:
Please, someone, share the story here??? I _need_ to hear this. And it's reassuring because sometimes when I see a weird thing (we talked about frog eggs turning into tadpoles turning into frogs lately) I'm not completely bizarre in wondering hmmm, what do frog eggs taste like?
tanyalynn is offline  
#315 of 338 Old 12-20-2008, 10:10 PM
 
WuWei's Avatar
 
Join Date: Oct 2005
Location: In the moment
Posts: 11,492
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
(Hmmm...well, I've been wanting to find some fish roe. We have tadpoles that we are growing in a tank inside since summer. But they are hibernating, it seems. Never ate a tadpole. Have eaten frog legs.)

We found the baby snake and it was cold outside. So, we weren't sure if it were dead. Don't you all bring dead snakes into the house?

It was a beautiful baby king snake, and there appeared to be no injury (~no cat puncture wounds. We have 7 cats.) So, you don't just leave a snake in an open container in the house, do you? LOL The snake container sat on the kitchen counter and when I was clearing the counter, the container-with lid on, was placed in the kitchen sink.

Well, the next day...when I was loading the dishwasher, I removed the lid and scared the living daylights out of myself.


Pat

I have a blog.
WuWei is offline  
#316 of 338 Old 12-21-2008, 11:30 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
ummm, i would love to be a cat a your house. it sounds like fun, what with the snakes and whatnot. do the kitties get fermented veggies?
ellasmama2007 is offline  
#317 of 338 Old 12-22-2008, 12:05 AM
 
WuWei's Avatar
 
Join Date: Oct 2005
Location: In the moment
Posts: 11,492
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by ellasmama2007 View Post
ummm, i would love to be a cat a your house. it sounds like fun, what with the snakes and whatnot. do the kitties get fermented veggies?
We have a five foot boa constrictor that we are snake-sitting for the holidays. Gerbils too.

Well, the cats get raw milk kefir and goat's milk yogurt.


Pat

I have a blog.
WuWei is offline  
#318 of 338 Old 01-02-2009, 10:52 PM
 
tanyalynn's Avatar
 
Join Date: Jun 2005
Location: TX, but anticipating one more move
Posts: 11,508
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Panserbjørne View Post
bacterial growth *can* decrease bile production. Well, to be fair there are bacteria that feed on bile so it doesn't decrease production but it does decrease the usable amount as far as your body is concerned. The best approach in my mind would be to support the liver.

There are other issues that can interfere with bile production and flow, of course. But in this context this is a big deal. Regulating the body and optimizing bacterial balance will be important.
I was searching back for this recently, and wow. I've been encouraging my daughter (both kids, but particularly her) to go as crazy as they like on the fermented veggies, and she's been eating them 2 or 3 times a day, sometimes more. I was happy when her poops firmed up (they'd been falling apart too easily, they looked yeasty and too light in color, also occasionally floating) but today, her poop was brown! JaneS had mentioned poor bile flow and tartar, and my daughter's always been prone to tartar build-up, and then I read the bile to light-colored poop connection, and I think all the fermented veggies are getting her gut back to a better balance, bacteria-wise, and just today her poop was distinctly brown!

:
tanyalynn is offline  
#319 of 338 Old 01-02-2009, 11:23 PM
 
WuWei's Avatar
 
Join Date: Oct 2005
Location: In the moment
Posts: 11,492
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by TanyaLopez View Post
and I think all the fermented veggies are getting her gut back to a better balance, bacteria-wise, and just today her poop was distinctly brown!

:


:




:



Pat

I have a blog.
WuWei is offline  
#320 of 338 Old 01-03-2009, 01:00 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by TanyaLopez View Post
I was searching back for this recently, and wow. I've been encouraging my daughter (both kids, but particularly her) to go as crazy as they like on the fermented veggies, and she's been eating them 2 or 3 times a day, sometimes more. I was happy when her poops firmed up (they'd been falling apart too easily, they looked yeasty and too light in color, also occasionally floating) but today, her poop was brown! JaneS had mentioned poor bile flow and tartar, and my daughter's always been prone to tartar build-up, and then I read the bile to light-colored poop connection, and I think all the fermented veggies are getting her gut back to a better balance, bacteria-wise, and just today her poop was distinctly brown!

:
the same thing happened for us when we both started on the goat milk kefir ( thanks again pat for that awesome suggestion!!). ive been shoving in the fermented veggies, but for dd right now goat milk kefir is it. ive been giving her probiotic capsules for months and months, but there is obviously nothing like the real thing! her poop has been looking better and better after obvious die off in the beginning ( black squggles in her poop).
the funny thing is that the fluconazole seemed to do nothing for reestablishing balance ( again, natural is clearly better) and ella didnt have any die off until the goat milk kefir ( with no negative behavioral symptoms, just stool changes and sleep/behavior improvement).
as a side note, my eosinophils are down to 611!!!!!! all the way from 5221. my vit d is confirmed low from a blood test too, so my pediatrician wants me to supplement.
ellasmama2007 is offline  
#321 of 338 Old 01-03-2009, 01:06 PM
 
tanyalynn's Avatar
 
Join Date: Jun 2005
Location: TX, but anticipating one more move
Posts: 11,508
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Congrats on the good poop, and congrats on 611! Very cool. And glad you got the bloodwork back on the D, sounds like that will help get everything back in balance too.
tanyalynn is offline  
#322 of 338 Old 01-03-2009, 01:28 PM
 
chlobo's Avatar
 
Join Date: Jan 2004
Posts: 4,741
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
that's great news. I think its funny you are seeing a pediatrician. What is he having you supplement with?

BTW, how is Ella's sleep? I'm thinking of maybe trying Adam with the Goat Milk Kefir. What brand are you using?

Mom to DMI & Silly Apple
chlobo is offline  
#323 of 338 Old 01-03-2009, 02:42 PM
 
Chinese Pistache's Avatar
 
Join Date: May 2006
Location: Under a shady tree, you and me
Posts: 6,064
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Congrats on the great news!
Chinese Pistache is offline  
#324 of 338 Old 01-03-2009, 06:52 PM
 
WuWei's Avatar
 
Join Date: Oct 2005
Location: In the moment
Posts: 11,492
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by ellasmama2007 View Post
hey everyone!!!!! im so excited, my eos were down to 2300 from 5221!!! i cant even tell you how happy i am because it certainly buys me more time from having to wean dd!!! (if we have to at all). i am going back for another cbc on dec 15 and the oncologist said that if my count is down to 1000, we are in the clear.
Quote:
as a side note, my eosinophils are down to 611!!!!!! all the way from 5221.
:



(because I am immature like that) (that is for the oncologist)


(for the Vit. D)


Pat

I have a blog.
WuWei is offline  
#325 of 338 Old 01-04-2009, 12:00 AM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by chlobo View Post
that's great news. I think its funny you are seeing a pediatrician. What is he having you supplement with?

BTW, how is Ella's sleep? I'm thinking of maybe trying Adam with the Goat Milk Kefir. What brand are you using?
i know, my ped rocks! he is sending me plain vit d from kirkmans, 1000iu per capsule and i am to take 3 capsules daily.
ella's sleep is greatly improved. she was doing really awesome for a while, best ever by far, and then i ran out of the kefir plus trialed coconut oil (fail) at the same time and her sleep went to crap. i finally got my order of kefir again and her sleep seems to be getting better and better the past few days.
i order my own case through our hfs. they order it from the company "tree of life" and this is the brand http://www.redwoodhill.com/kefir.html. i use plain only and this was the only plain goat milk kefir i could find.

Quote:
Originally Posted by WuWei View Post
:



(because I am immature like that) (that is for the oncologist)


(for the Vit. D)


Pat
i love that moonin smiley . ive been trying to get as much sun as poss for the vit d, but since i cant walk around nakey:, i dont seem to be getting enough.
ellasmama2007 is offline  
#326 of 338 Old 01-05-2009, 01:37 AM
 
momofmine's Avatar
 
Join Date: Jan 2007
Posts: 3,087
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
So, we've been talking all over here about the Vitamin A and D thing, and what the right ratios are. I just posted a new thread here in the TF forum trying to figure out what the right thing is. I broke down what the ratio is of A and D in some of the different CLO's, because I am trying to figure out which one to buy. Green Pastures is having a sale through tomorrow (or until tomorrow, not sure exactly) and I wanted to order some, but I don't know what to order. I know that I need Vit D. I probably need A too, and I know my kids definitely need A for gut healing, and most likely need D because we are inside all day because it is so cold. Can you guys go read my post and tell me what you are thinking about this?
momofmine is offline  
#327 of 338 Old 02-09-2009, 03:02 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
i just wanted to post because i just got home from the onc and my eosinophils are 214 from 5221 which is





within normal limits!!!!!!

he wants to see me back in 6 mos. thank you everyone for your constant support, advice and encouragement. there is a special place in heaven for you mamas
ellasmama2007 is offline  
#328 of 338 Old 02-09-2009, 03:08 PM
 
changingseasons's Avatar
 
Join Date: Mar 2008
Location: Seattle
Posts: 8,802
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
WOW. That is so cool. What a scary time- I'm glad it's over.

Mom to DD1 (10/07) and DD2 (3/11)
geek.gif I blog about our life with food allergies and eosinophilic disorders.
changingseasons is offline  
#329 of 338 Old 02-09-2009, 03:10 PM
 
Panserbjorne's Avatar
 
Join Date: Sep 2003
Location: The Great North
Posts: 12,080
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Mama, I am SO glad you followed your gut on this one!
Panserbjorne is offline  
#330 of 338 Old 02-09-2009, 03:10 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
thank you, and its such a shame because now i am too scared to try any more clo, even the ones that mamas here seem to think are safe. the onc was like "perhaps we should put you back on it to see if that was really the cause" and i was like "umm, why dont we put you on it to see if it makes your eos climb to multi-system-failure and seizure levels" he said "no, i dont want to do that" lmao
ellasmama2007 is offline  
Reply

Quick Reply
Message:
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off