our oncologist appt :( - Page 4

[ellasmama2007]

oh right, sorry i forgot it was a percent. i was sitting there thinking " welp, 25 doesnt sound too bad at all. that's really great for her" the nurse that i spoke with told me she thought it was 45%, but she was really not sure and kinda out of it.

[WuWei]

Take a look at this thread: http://www.mothering.com/discussions...4&postcount=96

Also, you need more "active live culture" probiotics.

Here is an informative article "Selection Criteria for Probiotics": http://findarticles.com/p/articles/m...g=artBody;col1

This link discusses specific brands of different probiotics: http://www.usprobiotics.org/products.asp

Also, it is important to rotate probiotics otherwise "probiotic resistance" could develop, I've read. Don't use single strain probiotics exclusively; and DO rotate them every 4-7 days. The Probiotic Solution champions the "pulsing and rotating probiotics". http://findarticles.com/p/articles/m...52/ai_n6112818

Increasing nutrients. So, increasing bone broths, coconut oil, cod liver oil and whole food probiotics, especially Bifidus bacterium and Lactobacillus acidophilus and Saccharomyces boulardii. The bifidus is usually a powder or capsule, get capsules. Acidophilus is in yogurt, look for "Active Live Cultures".

Most packaged probiotics are denatured in transportation, and don't survive the acidity of the stomach to make it to the gut. Whole food which is cultured and fermented have the proper acidity to survive the stomach and recolonize the gut.

Goat's milk yogurt is more easily digested due to less allergenic proteins and because it is cultured, even for folks intolerant of some caseins. It has prebiotics and enzymes which help too. S. boulardii is available in significant amounts in store bought raw, organic kombucha, maybe a few yogurts. S. boulardii displaces candida yeast. Get some and drink it daily!

You can do water kefir. It has 30+ beneficial microbials for recolonizing the gut. You need to take these multiple times a day, as probiotics don't "stick" in the gut, like candida. Probiotics have to replaced repeatedly. S. boulardii stays longer. Here is a reliable source of kefir grains: http://www.culturesforhealth.com/zen/

1 Tbls a day of the kefir will help even. But, much more is preferable. Personally, I'd try fermented raw goat's milk kefir.

I would consider weaning, if you still have high eosinophils in a month, or two. The No Cry Sleep Solution helps. You can relactate. Adoptive mamas can lactate. Weaning doesn't have to be traumatic.

I'm curious about any other heavy metal toxicity? Amalgam, lead, aluminum, arsenic, radon, copper, etc.

So adding magnesium, *cultured* raw goat dairy, fermented foods, kefir, kombucha, vit C, soaked grains, avoiding gluten, add zinc, enzymes, add Vit A and D supplementation. I assume you've been reading the "Healing The Gut" cheat sheet? http://www.mothering.com/discussions...d.php?t=434071

We are amazed at how classical homeopathy has helped ds and dh's immune systems. I was a critical care nurse for 17 years. Medical folks only see what they know. I would always take another adult as an advocate with you to every doctor's appointment. Write down notes. Ask for written documentation of any abnormal labs, and any (potential) diagnosis. EXPECT to have everything explained to your COMPLETE satisfaction. The doctors have a duty to provide Informed Consent. That means explained until you understand their *opinion* of the pros and cons of EVERY alternative. I'd always get second or third opinions from non-affiliated providers, before initiating anything invasive. And, I'd go the alternative route aggressively and concurrently.

Totally and strongly recommend seeing a professional classical homeopathic. STRONGLY.

Consider saliva testing for hormones: cortisol, thyroid, progesterone, estrogen, etc. The blood levels could be different than *bio-available* levels. http://www.mothering.com/discussions...ghlight=saliva The levels are interconnected and related to thyroid and nutrition and cortisol and immune response. This is newer theory and not supported by the pharmaceutical companies, so it may be difficult to find an informed provider. A DAN! doctor might be a resource.

Personally, I'd find the most progressive DAN! doctor in your area to consult, ASAP.

HTH, Pat

[AquariusHome]

Oh my goodness. I haven't been here for awhile and I just saw this thread. Major hugs to you. I'll be thinking of you tomorrow.

Your Ella and my Ellie are only a week apart in age and I totally get it - how strange it would be to not BF her. Yet I'm sure it would just be a transition to a different yet equally happy type of relationship.

:::

Let us know how it goes.

[*mama moose*]

I still don't have any knowledge to share, but I have been thinking about you every single day,and checking in on this thread
I wish I knew of a way to help

[JaneS]

Ellasmom,

I'd be very concerned about starting difucan right now without some knowledge that yeast is causing this, but maybe that's just me. You tried enzymes?

The EOS mamas at the POFAK forum are very knowlegeable, I'd check there.

Have you had a vitamin D blood test? Absolutely essential when facing a cancer dx or any other immune disorder.
http://articles.mercola.com/sites/ar...aspx?source=nl

and : to you and Superstella too!

[ellasmama2007]

Originally Posted by WuWei

Take a look at this thread: http://www.mothering.com/discussions...4&postcount=96

Also, you need more "active live culture" probiotics.

Here is an informative article "Selection Criteria for Probiotics": http://findarticles.com/p/articles/m...g=artBody;col1

This link discusses specific brands of different probiotics: http://www.usprobiotics.org/products.asp

Also, it is important to rotate probiotics otherwise "probiotic resistance" could develop, I've read. Don't use single strain probiotics exclusively; and DO rotate them every 4-7 days. The Probiotic Solution champions the "pulsing and rotating probiotics". http://findarticles.com/p/articles/m...52/ai_n6112818

Increasing nutrients. So, increasing bone broths, coconut oil, cod liver oil and whole food probiotics, especially Bifidus bacterium and Lactobacillus acidophilus and Saccharomyces boulardii. The bifidus is usually a powder or capsule, get capsules. Acidophilus is in yogurt, look for "Active Live Cultures".

Most packaged probiotics are denatured in transportation, and don't survive the acidity of the stomach to make it to the gut. Whole food which is cultured and fermented have the proper acidity to survive the stomach and recolonize the gut.

Goat's milk yogurt is more easily digested due to less allergenic proteins and because it is cultured, even for folks intolerant of some caseins. It has prebiotics and enzymes which help too. S. boulardii is available in significant amounts in store bought raw, organic kombucha, maybe a few yogurts. S. boulardii displaces candida yeast. Get some and drink it daily!

You can do water kefir. It has 30+ beneficial microbials for recolonizing the gut. You need to take these multiple times a day, as probiotics don't "stick" in the gut, like candida. Probiotics have to replaced repeatedly. S. boulardii stays longer. Here is a reliable source of kefir grains: http://www.culturesforhealth.com/zen/

1 Tbls a day of the kefir will help even. But, much more is preferable. Personally, I'd try fermented raw goat's milk kefir.

I would consider weaning, if you still have high eosinophils in a month, or two. The No Cry Sleep Solution helps. You can relactate. Adoptive mamas can lactate. Weaning doesn't have to be traumatic.

I'm curious about any other heavy metal toxicity? Amalgam, lead, aluminum, arsenic, radon, copper, etc.

So adding magnesium, *cultured* raw goat dairy, fermented foods, kefir, kombucha, vit C, soaked grains, avoiding gluten, add zinc, enzymes, add Vit A and D supplementation. I assume you've been reading the "Healing The Gut" cheat sheet? http://www.mothering.com/discussions...d.php?t=434071

We are amazed at how classical homeopathy has helped ds and dh's immune systems. I was a critical care nurse for 17 years. Medical folks only see what they know. I would always take another adult as an advocate with you to every doctor's appointment. Write down notes. Ask for written documentation of any abnormal labs, and any (potential) diagnosis. EXPECT to have everything explained to your COMPLETE satisfaction. The doctors have a duty to provide Informed Consent. That means explained until you understand their *opinion* of the pros and cons of EVERY alternative. I'd always get second or third opinions from non-affiliated providers, before initiating anything invasive. And, I'd go the alternative route aggressively and concurrently.

Totally and strongly recommend seeing a professional classical homeopathic. STRONGLY.

Consider saliva testing for hormones: cortisol, thyroid, progesterone, estrogen, etc. The blood levels could be different than *bio-available* levels. http://www.mothering.com/discussions...ghlight=saliva The levels are interconnected and related to thyroid and nutrition and cortisol and immune response. This is newer theory and not supported by the pharmaceutical companies, so it may be difficult to find an informed provider. A DAN! doctor might be a resource.

Personally, I'd find the most progressive DAN! doctor in your area to consult, ASAP.

HTH, Pat

pat, you've really hit the areas where i have been struggling a lot since coming to mdc for dd's allergies, even moreso now that i have this oncologist telling me to stop everything. probiotics have been very difficult for us. i currently take lacto duo and vsl#3 because they have been shown to help consume oxalates, which were high on my urine oat, and because they are the only probiotics that i can find that do not contain chickory root/inulin. dd reacts to chickory route/inulin. i read all the links that you were nice enough to look up for me, and i think these two brands meet the criteria mentioned in that article ( well, one comes in a plastic, non-see through bottle). they both come with ice packs and one even a cooler box
and are highly potent. before the fluconazole was going through my breast milk, i was even mixing the lacto duo in pumped milk and letting it sit 24 hours to feed to dd, thinking maybe it would culture a little or something.
fermented foods are a big problem for us. dd reacts to coconut, dairy, cabbage, vinegar, soy, sugars, etc. i tried water kefir from your source and am currently giving it away constantly because dd reacts to the sugar i think. i was afraid kombucha would be the same problem, not to mention dd showed moderate allergies to brewers and bakers yeasts. that made me worry that the s.boulardii would be a problem for her. i will have to see if i can try the fermented raw goats milk kefir when she stops reacting to the bone broth i trialed.
the only meat she tolerates through me is organic pork but i cant get organic pork bones so i made broth with the regular ones and she has been having reactions now for 3 days that i am pretty sure are not related to the yeast die off. damn additives i guess.
i have read the healing the gut sheet several times and have been trying to practice a lot of it. until this last week, my regimine consists of: pure encapsulations multi vit, coq10, ca/mg/d, biotin, twin labs clo, quercetin with c, l glut, lacto duo, vsl#3, digest gold with meals, virastop and candidase at night twice,kirkmans cow milk colostrum, organics as much as we can find/afford. the onc told me to take out everything but my multi, so i interpretted that to be my multi, c, ca/mg/d, digest gold with meals, and the probs .
i will be looking for a more holistic doc as soon as i found out the results this afternoon. i currently have an awesome dan!doc for ella, who i will fill in right after my appt today and hope that maybe he can recommend someone.
i am going to start offering ella her sippies with elecare instead of water once this current reaction subsides. i was considering continuing to pump and dump for a while to see if i can at least feed her pumped milk after the chemo or whatever meds i need to take have left my system, depending on how long i can last. dh just wants me to be done with it. he still isnt eating.
jane, im trying to read your thread, but it wont load right now, ill try again later. ill have to check out pofak. i joined and tried a couple times, but i just need to take the time to get familiar there.

[WuWei]

Mama, you are obviously informed. The foods that your daughter is reacting to are through the breastmilk, or direct consumption?

I couldn't discern which probiotics were included in the vsl#3? Also, has your daughter tried the water kefir directly? It doesn't make sense to me that she'd react to the minuscule amount of sugar left. Leaving it to ferment longer removes more sugar, but does potentially increase the alcohol content slightly.

Did she have the bone broth directly?

I'm just struck pondering if she is primarily reacting to your reactions through the breastmilk. Obviously, while nursing, it would be impossible to eliminate that potential completely.

Have you tried any supplements for her directly? Magnesium, CLO.

Again is the oxylate issue a direct exposure? With our son, I was surprised how much less reactions he had after we weaned, at age 2. But, I have a mouth full of amalgam, which I believe was our biggest culprit.

Let us know what you learn today.

Surrounding you with peace and healing energy.

Pat

[changingseasons]

Just wanted to post about my most recent kefir/kombucha issues, because I know our stories are pretty similar.

I've finally started a water kefir trial, and after a week I'm pretty sure that DD is reacting to the sugar, even though I'm doing a 48-hour brew. It's not a bad reaction, just some gas at night waking her up and her face is a tiny bit flared. I ate about a T. of straight sugar for 2 nights in a row to test the theory, and she was REALLY gassy those nights. And yesterday, I decided to figure out the kefir once and for all, and drank about 4 glasses. Again, lots of gas last night, face still just slightly flared this morning. But it is definitely a reaction. I posted some questions about this in the TF forum, and someone told me that you can use honey for the water kefir (I'm pretty sure DD and I are ok with honey), although it will get really yeasty and then kill your grains after a while, so it's best to keep some grains for backup. Someone else also said that agave would work too, and wouldn't kill the grains. So you might try one of those if you guys can tolerate them.

On to kombucha... I've been drinking it for months, with no obvious reaction in DD. I started really slowly and worked my way up to about 6 ounces a day. Then DD had a sip of it once, and I'm pretty sure she reacted. She had a sip again a couple weeks ago, and had a HUGE reaction- full blown eczema on her face. Her poor chin looked like it had been dipped in acid. So I'm off kombucha for now, but will do an official trial in a few weeks to see if she can tolerate it through BM. But she definitely cannot tolerate it directly. I have tried the kefir directly... but I don't think I'm brave enough.

[ellasmama2007]

thank you for all the prayers and good vibes and hugs. it has meant everything to me! my bloodwork is NEGATIVE FOR CANCER!!!!!!!!!!!!!!!! however, he has not a clue what is wrong with me and is deeply concerned that my organs could start to fail if we dont figure this out. he has no idea why this started and he feels strongly that this must be an autoimmune disease, possibly mastocytosis (which i had been researching for dd months ago ironically) but that is just a guess. if it is that, it can be treated with steroids (not chemo) and is usually not lifelong.
so, i am going back for a bone marrow biopsy and we still have 2 lab values not yet back. ALL the rest of the bloodwork was normal, which at least means that my organs probably arent involved yet. he is waiting to see what the final two results are (my ige level and a test for mastocytosis)and then he is going to send me for a second opinion to someone he feels is more of an expert in eos/oncology/immunology. i think i might start shopping around for a second opinion in the meantime anyway - ill ask my ped tomorrow.
also, he truly believes that i am definitely sending ella components in the breast milk which will make her highly atopic (more allergic). he doesnt know to what extent her allergies are really hers and not my negative chemicals influencing her body and making her react to everything. he strongly urged me to wean her. at the levels where my eos are right now, he said it is unlikely that im not flooding her bm with my allergy response.
how horrible do i feel that it may really have been my fault this whole 13 months that she has suffered almost daily?! i thought i was doing the right thing by eliminating and obsessing and i might have been actually making her ill and putting her organs at risk. i feel like im in the twilight zone. tomorrow i will give ella her sippy with elecare and hope that by some miracle she will drink it and not react to it. ill just start there i guess and work up. nights and naps will def be the hardest, so ill work on those later.
pat, i only give her purees (3 safe, 17 diff foods failed), lacto duo and kirkmans vit c powder. i havent tried to give her any other supps since she failed klairelabs probiotics several times. she is soooo sensitive to sugars, including agave, honey and fruit (fruits ok in small doses). i havent been able to make a bone broth with organic bones since i cant get them around here, so i havent given her any ( no meat at all yet). she reacts to everything though my bm, making it seem like maybe i should just trial her with a food that i dont eat first so that i dont "contaminate" it for her. the oxalates i mentioned came up elevated on my urine, so my ped was thinking that may be a source of discomfort for her through the bm. i dont have any amalgams, but i was vaccinated as a child and have gotten the flu shot twice (3 and 4 years ago).
cs, im so sorry about the kombucha and kefir. its so frustrating. to be trying so hard to get healthful things in our los and to keep seeing reactions is unbearable.
i just want to thank you all again for hearing my story now and all these months. this has been the hardest year of my life and also the most joyful. i cant thank you enough for all your understanding and knowlege.

[chaoticzenmom]

Wow, I'm so thankful that you tested negative for Cancer. : I hope you find the issue soon. Ella will be fine. I know you're not ready wean, but you've done it for a long time and the positive effects of it are not going to go away now that you're going to wean.

I hope all goes well.
Lisa

[chlobo]

::

[ellasmama2007]

i forgot to mention that we are testing for parasites again ( i didnt bother to tell him that i just had that done) just to make sure.

thank you, lisa and chlobo

[changingseasons]

I am so glad to hear that. I've been thinking of you and sending positive thoughts all day.

Please don't feel guilty for BFing... I could be totally wrong, but I don't think it could be completely you causing her allergies- I think she would still have a predisposition to them, so might have suffered even worse if you hadn't BF'ed. At least that's what I'm hopeful of, because I have enough guilt that I'm working through for the other factors that contributed to DD's allergies (c/s, abx, vax, etc.)

Have you guys done chiro? DD started 3 (or was it 4?) weeks ago, and it's really interesting to see the progress. I haven't noticed any major changes in her food reactions, but I can't definitely tell that something is happening. In the past 3 weeks, DD has had either major meltdowns within an hour following the appointment, or a skin flare up within about 15 minutes of it, or both. So toxins are definitely being released and moving out of her body. I really hope that it helps her heal.

[kjbrown92]

I've been checking all day to see what the doctor said. Phew!! I'm so happy that it's not cancer. Hopefully, you'll find out soon what it is. And even if she was reacting to your stuff, the breastmilk still gave her some good stuff, and you can't take it back, so don't stress about it (I've done it lately too, when that post came out about the two kids - one adopted, one birth - both breastfeeding and both with same allergies - from the mother's leaky gut most likely -- thinking, great, I did this to my kids). I am so glad that hurdle is over!! ::

[Ruthla]

I'm so glad the cancer test came back negative!!! This must be such a relief for you!

[nalo]

Whatever comes your way you can handle. Today is a happy day.

[ellasmama2007]

cs, i definitely think that our situation is really rare and extreme and i think you are right about the benefit of bf, especially when food allergies are present. i am right there with you feeling guilty about the c/s and vax for 6 mos, try to just focus on the present and future - you're such a good mom, amazing really.
i went to a chiro to have some cranio adjustments and left the office very dizzy. she didnt tell me that might happen and by the time i got home, the bed was spinning and kept on all night. it was scary and i decided not to go back because i wasnt sure that she didnt mess something up. it just upset me that i had no warning and i had to take care of ella all night like that because dh was away for work. i had been pretty excited about it and she wanted to work on ella too.
kathy i know what you mean. i just keep thinking about every day and night that she was in pain thanks to whatever the hell this is...
thank you so much girls, i am relieved its not cancer, but still worried. i think mostly right now i am just totally exhausted !

[mtn.mama]

Thanks so much for taking the time to write your story, and the exciting results from your appointment today! Mama, you cannot hold yourself accountable for what you did not know. None of us are here by choice, nor did we put our children here by choice. We are just here... here to support each other's choices and journeys, and do the best job we know how with the information we have at the time. You are getting somewhere... slowly but surely weeding out all the false leads and negative results. I second the chiro/CST recommendation, it surely has worked wonders for us- behaviorally if not physically (and aren't they all related anyway?). Sending you strong waves of positive energy mama... you and Ella are going to make it through this strong and resilient!

Lisa

[*mama moose*]

I am SO glad that its not cancer :

I have been thinking about you guys a lot, I really really hope they can figure out what is wrong soon! And I'm so sorry you have to wean I know it must be heartbreaking, but I hope it goes smoothly for you, no matter what you have done an AMAZING thing for her

[kjbrown92]

Take a nice warm bath. Relax. Go to bed. It's been a hard week and you need some downtime. And what a time for your DH to be away. Ugh. You're a champion!