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our oncologist appt :( - Page 6

post #101 of 338
Our GI did bloodwork on me (mostly to check my iron, but also ordered a CBC or whatever its called) and the nurse called to say everything came back "normal" whatever that means....so I guess I don't have elevated eos. So you can add me to the study As far as I know I don't have any allergies or intolerences though, even after the elimination diets nothing has changed for me that I was unaware of or anything like that.

We are still waiting on my DHs bloodwork (which had a stat order and is still not back, ugh!) He got a pretty full GI work up (I think they are checking for his eos level, celiacs-igg/iga, not sure what else...), I know hes not the nursing mom here but when he was 3 he had the same situation as momofmine's son, he went to the hospital with an (unrelated) fever and his WBC were through the roof with no explanation, he had tons of food intolerances as a child, was on special formula as a baby ("allergic" to breastmilk), reflux-y.....and he still has some major digestive issues, so our GI thinks his issues are going to be the key in figuring out Liberty's. I find it a little weird though, I mean I know his genetics are in her too, but I'm the one nursing her so I would think I'd be the one "causing" the problem so to speak.


I think our bottle plan is probably going to be a sippy cup too. I think I'm coming to terms that I can't do this for 2 + more years I had my LLL leader put our a request to the professional board or whatever its called, to dig up some research on breastfeeding a baby with EGID, but I'm just not sure how long I can do this. I think I'll probably wait a month or two and try to intro elecare in a sippy and take it really slow if I can, my goal is to make it to a year of bfing as long as she keeps growing (coming from someone who is still nursing a 2.5 yo, that makes me want to cry that my GOAL is one year...). Shes started throwing up every morning now though, and I cannot figure out why! Anyways, I'm rambling on and on now like usual, but I'll join you in the CLWer having to wean early pity party, I hope she tolerates the eo28, it doesn't taste TOO bad IMO, but has a really weird fake sugar kind of aftertaste. I've only tried the orange flavor though (thank you again CS! ), but I bet the grape is similar, I kinda gagged at the aftertaste too, so hopefully its just that and she gets into the habit of drinking it.
post #102 of 338
Thread Starter 
im really sorry that shes throwing up every morning now, mama. i so understand your frustration and sadness. maybe if you kind of plan your bf without a goal, it wont seem so overwhelming. i had wanted to bf dd until she weaned herself, but in the hardest i-cant-do-this moments, i just tried to make it through the day, kwim. now that im faced with weaning her, i dont even want to go back to "normal" eating. id rather have my baby.
post #103 of 338
I'm so sorry mama

It makes me feel guilty that I'm thinking about weaning when I know so badly you don't want to and yet have to
I think I have to work on it too though.... I got out of the car today and literally blacked out/fell down, I think I scared the crap out of my DH, hes kind of pushing me now to be done....

This isn't fair to us, at all, we are all such good moms that just want our kids to feel better

I hope you and Ella are doing ok.
post #104 of 338
Quote:
Originally Posted by changingseasons View Post
I don't want to derail the thread, but I just sent emails to the 3 companies that make the 3 enzymes that I've reacted to (to see what they're derived from/grown on), so we'll see what they say...
I can tell you, PM me.
Edit: ok whoops, I cannot tell you what they are grown on but I can tell you if they are fruit, animal or aspergillus (fungal) derived.
post #105 of 338
Ellasmama,

Every step in your journey is one toward healing, trust that. Don't blame yourself in any way! It's entirely possible that the lessons you are being shown now are saving you and your family from much much worse. I fully believe that is the case with us.
post #106 of 338
Quote:
Originally Posted by momofmine View Post
One more thing, the Pharmax probiotics (in JaneS' sig) have some that do not have any inulin, chicory, or FOS. We are currently trying the HLC Intensive, from Rockwell Nutrition.
And they are grown on agar.
post #107 of 338
Thread Starter 
Quote:
Originally Posted by *mama moose* View Post
I'm so sorry mama

It makes me feel guilty that I'm thinking about weaning when I know so badly you don't want to and yet have to
I think I have to work on it too though.... I got out of the car today and literally blacked out/fell down, I think I scared the crap out of my DH, hes kind of pushing me now to be done....
.
mama, please please dont feel guilty, especially because of me. as everyone has so correctly said to me, you cant jeopardize your health. you must be safe and able to care for your los. you cant risk blacking out with them!!!!!!!!! you need to take whatever measures get you all healthy. i dont blame your dh at all for being scared. my dh has been growing more and more insistent that i stop bf basically since we started. now, he is so done with it. your dh just wants you to be happy and healty. it is such a journey, mama.
i just cant help feeling badly about weaning, i just cant help it - we are 13 months in on this struggle for health where every doctor we have seen(7) save 1 have told me to stop bf and i persisted thinking it was the right thing to do. now it turns out all those people that i thought were cold and disinterested knew better than i.
not to mention, i tried to give ella a sippy of eo28 splash to play/drink through the day yesterday and she has been clinging to me like a scared little baby monkey nursing more and more. i keep giving her breast, hoping she wont feel like i am going to withhold anything from her. it's just that im on this fluconozole that she gets through bm, so i need her to get plenty of fluids.
i tried the eo28 at the last minute instead of the elecare because i was hoping the taste would be more agreeable to her. they both have ingredients that could potentially be problems, so it's a crap shoot.
Quote:
Originally Posted by JaneS View Post
Ellasmama,

Every step in your journey is one toward healing, trust that. Don't blame yourself in any way! It's entirely possible that the lessons you are being shown now are saving you and your family from much much worse. I fully believe that is the case with us.
i really believe you, jane. throughout this whole experience, i kept thinking we were headed down a path of chronic illness. from what i have learned here though, there is a lot that can be done, no matter what the circumstances! you are a very strong and inspirational mama!

Quote:
Originally Posted by changingseasons View Post
I don't want to derail the thread, but I just sent emails to the 3 companies that make the 3 enzymes that I've reacted to (to see what they're derived from/grown on), so we'll see what they say...
i am so interested in this! if you pm'd jane, can i eavesdrop in on the results too?!
post #108 of 338
Quote:
Originally Posted by ellasmama2007 View Post
i am so interested in this! if you pm'd jane, can i eavesdrop in on the results too?!
I actually started a new thread so that I wouldn't derail yours, and she had some interesting comments there (so I didn't PM her).

And I'm still waiting to hear back from 2 companies, Dr. Houston, and the enzymestuff.com people.
post #109 of 338
I re-read my last post and started thinking "man, I talk about myself a lot"
I really don't mean to be "me me me", its just I am having the same internal weaning battle in my head, and it sucks! Rambling on about my own thoughts is really my way of saying "I understand and I'm here for you!"

Liberty likes to play with the bottle of Elecare, she takes probably, oh, a quarter of an oz in the 4 times we have tried, total.... I keep going back and fourth. I'm sorry your DH is feeling like mine, I know where they are coming from (I'd be worried if this were my DH in this situation!), but I also know its stressful to have that pressure/stress....

And you totally allowed to feel sad about weaning! It is sad, it holds a lot of wonderful memories and emotions, and its HARD when you see your baby is not ready to wean But you are doing the right thing, you are taking it slow and honoring her feelings, but you are doing this to help her heal. You are such a good mama!

I have that orange flavor eo28 that CS sent me, I could send it on to you if you think Ella would like it. I drank a few but it didn't seem to help me keep up my calorie intake, I wasn't a huge fan of the taste and kept putting off drinking it....
post #110 of 338
Quote:
Originally Posted by *mama moose* View Post

I have that orange flavor eo28 that CS sent me, I could send it on to you if you think Ella would like it. I drank a few but it didn't seem to help me keep up my calorie intake, I wasn't a huge fan of the taste and kept putting off drinking it....
Wow- apparantly I've been on a restricted diet for WAY too long, cause I thought that stuff was delicious!! : (Tasted just like orange juice to me, with a tiny chemical aftertaste.)
post #111 of 338
no, its not that its awful or anything its just I have a long history of anorexia, and that aftertaste triggered some repressed memories of some of the diet pill yuck I used to drink to try to lose weight! blech! (I couldn't take a pill so I'd empty diet pills into something like crystal light and drink it. So, can you see why thats similar, fruity with a lovely chemical aftertaste ) Seriously, after years of that I can't drink ANYTHING with fake sugar or I start to gag.



I guess you can see why my husband is so worried about me now too, huh? I was hospitalized for it in my teens, so hes kinda freaking out no matter how much I assure him that its not about that this time, I'm just trying to help my baby
post #112 of 338
Bone marrow testing inconclusive related to systemic mastocytosis. (see the fourth question down) http://www.tmsforacure.org/transcrip...anel2005.shtml

(Also, see question 1/2 down the page!) Question: I read that mast cells are actually protective against parasites. If so, is this a protective mechanism gone awry--similar to sickle cell anemia, which is protective against malaria?
(same link above)

Answer: "Since there is evidence that the mast cells are (either) protective, or just participating in the immunity against parasites, I would agree that that is probably one of the reasons why the mast cells are there."
<snip>
"But I clearly think that they still have, as what we have heard earlier today, some protective function. To give you an example, there was a wonderful set of papers published about two years ago, where they inoculated, they injected well known bacteria that caused urinary tract infections called E.Coli into the tummies, or the peritoneal cavities, of mice. The mice either had mast cells or they didn’t have mast cells. The mice that did not have mast cells died. The animals that had mast cells managed to respond, and eventually deal with the infection. So I think we still need mast cells for many reasons."


So, I, along with Firefaery, question the logic of attacking the *healing* process with steroids!! And I don't even see "mastocytosis" symptomology exhibited, other than the eosinophils. Perhaps, I'm missing something. Everything yells parasites. I would NOT do a bone marrow biopsy, unless abjectly indicated by multiple consults. I trust that you have time to make an informed inquiry and consulation with a second opinion before chosing an extremely invasive and painful (questionable) diagnostic procedure which doesn't answer or address your concerns.

You are JUST now aware of the elevated eosinophils. Try alternatives to decrease them naturally. And see an Immunologist who is more knowledgable about an immune reaction response. The oncologist is out of his league, he told you that. Consider postponing the biopsy until you have *reason* to understand the benefits it might provide. I don't see any, other than feeding his curiosity with the tools that he knows and uses.

mastocytosis triggers: http://www.tmsforacure.org/patientinfo.shtml

Natural alternatives: http://www.curezone.com/dis/1.asp?C0=1843

Bone marrow biopsy. http://www.asco.org/patient/Library/...What+to+Expect

Regarding autoimmune disease, I've searched and searched and find little .But, did happen upon this: "Any correaltion between Rhogam and autoimmune disorders in the moms?"
(see this interview: 22:00:25 Peace. Check with Sherri Tenpenny in Ohio.) http://www.mommychats.com/mothering/sherritenpenny.htm

Per the Rhogam folks: "The Rh- immune globulin is a blood product and carries a small risk of transmitting bloodborne viruses, but in most cases the benefits outweigh the risks."

See these threads regarding Rhogam. The main issue is to find Momtezuma Tuatara. She is the most informed resource I know. Hope someone will contact you with her email.

http://www.mothering.com/discussions...d.php?t=962463
http://www.mothering.com/discussions...ghlight=rhogam

Rhogam product insert: The solution is prepared from large pools of human blood plasma http://www.drugs.com/mmx/hyprho-d-full-dose.html

See a Naturopathic Doctor, ASAP. But, first, I'd go see a classical homeopath. Immune responses are addressed by classical homeopathy. I have seen it with my own eyes, despite coming from a medical background.

TRUST your body. Everything else will unfold from there.


Sent with healing energy.

Pat
post #113 of 338
Thread Starter 
ill come back tomorrow, i just wanted to say im busily reading your AWESOME links, pat! the first link is really excellent. i just cant wrap my brain around all of this because i feel fine. i just dont have any of the dizziness, nausea, etc that others with the disease are talking about. its such a puzzle. i am looking into a homeopath about an hour away from us and a naturepath also an hour away. dh is not at all interested in non-conventional medicine/healing.
mamamoose, you arent talking about yourself too much, you are just trying to relate. im so sorry about your painful past with eating disorders, this must really be beyond horrible for you . thank you for offering the splash, but im gonna stay clear of the orange since we react to citrus. how does the elecare taste, did you happen to taste it at all? ella is not gonna be drinking the grape splash, i know it. its been 2 days of offering and, though she doesnt seem to be reacting yet, she will not drink it. ive been finishing it for her. is the elecare really bitter and nasty like the neocate?
post #114 of 338
Creepy creepy, but the orange flavor does not actually have orange in it I asked CS the exact same question, because we react to orange too! Its total artificial goodness I suppose....
I haven't tasted the elecare, I have the unflavored infant kind....it smells um...interesting, but not awful. DD would drink it if she knew how to use a bottle, but I've put it off again today...she thinks its fun to play with, like babies think solids are fun, but when she wants to nurse she is like "screw this bottle business!" and I can't make her cry

thats so strange that you'd have no signs other than an allergic baby really....strange but also amazing because you can now get on the path to healing.

eta: Liberty only likes the elecare when its warm, like a lot of kids are w/ formula. But I've heard the eo28 tastes best really cold. maybe a temp change would help her drink it??
post #115 of 338
Hearing about artificial flavoring in hypoallergenic formula makes me worried from my new perspective lately reading about the Failsafe diet...
post #116 of 338
Thread Starter 
i know what you mean, jane. so far, ive tried to gently offer sippies with eo28 splash for 2 days and then alimentum for 2 days to ella. she pushes them away and wont drink them at all. i dont blame her. i gave her the eo 28 really cold (how she likes her water) and she just cant get past the taste. she tries but gags. it has such a strong artificial grape flavor, which as an adult i could drink, but for a baby it seems way too much. she took 1 sip of the alimentum and that was it! there's no way she could drink it at this point (maybe if she were younger) but it tastes so badly i spit it out into the sink when i tried it.
i was really tempted to just try organic cows milk formula because i eliminated it like 11months ago not really sure if it was a problem at all and never retrialed it. it was green on alcat, but so was everything else she reacts to.
post #117 of 338
Quote:
Hearing about artificial flavoring in hypoallergenic formula makes me worried from my new perspective lately reading about the Failsafe diet...
Guess what else they have? At least in the flavored 1 year+ versions? Artificial sweeteners. Sometimes more than one.

Someone once explained why they used artificial sweeteners (people don't react to them) but still...
post #118 of 338
Quote:
Originally Posted by WuWei View Post

Regarding autoimmune disease, I've searched and searched and find little .But, did happen upon this: "Any correaltion between Rhogam and autoimmune disorders in the moms?"
(see this interview: 22:00:25 Peace. Check with Sherri Tenpenny in Ohio.) http://www.mommychats.com/mothering/sherritenpenny.htm

Per the Rhogam folks: "The Rh- immune globulin is a blood product and carries a small risk of transmitting bloodborne viruses, but in most cases the benefits outweigh the risks."

See these threads regarding Rhogam. The main issue is to find Momtezuma Tuatara. She is the most informed resource I know. Hope someone will contact you with her email.

http://www.mothering.com/discussions...d.php?t=962463
http://www.mothering.com/discussions...ghlight=rhogam

Rhogam product insert: The solution is prepared from large pools of human blood plasma http://www.drugs.com/mmx/hyprho-d-full-dose.html

I've had 6 shots of Rhogam now. I'd better start reading your links!!
post #119 of 338
Thread Starter 
they are really good! ive been reading them last night and today. i wish i had more hours in the day to read everything i need to!
post #120 of 338
Thread Starter 
Quote:
Originally Posted by chlobo View Post
Guess what else they have? At least in the flavored 1 year+ versions? Artificial sweeteners. Sometimes more than one.

Someone once explained why they used artificial sweeteners (people don't react to them) but still...
when i read all the ingredients, it makes me really feel aweful to have to try to make poor dd take this stuff. i wish she tolerated solids so that i could try to make my own formula, but there just isnt any way. she tolerates sweet potatoes, prunes and bananas , pureed and not in little chunks. i keep feeling like maybe it would be better just to try an organic cowmilk formula...
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