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Old 03-19-2009, 07:03 PM - Thread Starter
 
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I knew the realities going into it--you all cautioned, wisely!

Our allergist appointment this morning was completley worthless!

In a nutshell, DS had virtually no reactions to 23 things on the skin test--only a teeny tiny bit to cinnamon (which gives everyone trouble if you apply it topically!)

Doc said that he was just one of the 50% (in his practice anyway) who have eczema and symptoms that could be allergy-related, that are not actually allergy related, and that he will outgrow.

I was allergic to many things as a baby that I outgrew after a few years. Some persisted into childhood, but I would develop hives immediately after ingesting the food so the connection was cut and dry, and I avoided those foods. With DS the connection is vague at best (via elimination diet)

I think about my situation woth my son, and the prospects of continuing on an elimination diet of sorts for a year or so, trying to discern exactly what it is that bothers DS, adding and subtracting foods, driving myself crazy with all the variables and confounding factors to sort through....I wonder if my mother had gone on an extensive elimination diet for a year or so, I would have outgrown my allergy symptoms right around the same time that she may have begun to make sense of some it.

I don't know. I am, really at a loss here. And yes, Doc said that IgG blood tests are not useful, that actually they were developed before the skin test, but that the skin test is the gold-standard and that there are very little false-negatives, blah blah the party line...

We did do an IgE blood test to see if there was a generalized allergic response, in case we were missing anything on the skin test.

I can't afford to spend hundreds of dollars on treatments right now. I can keep up with the elimination diet, but I am just not drawing any conclusions with it, and I think for it to really tell me anything I need to be on some extreme chicken and rice only diet for a month. I don't know if I have the stamina for that right now (already underweight and feeling less grounded ). And then I feel like a horrible mother for thinking about throwing in the towel and just eating our old regular way for a few weeks and see what happens. Who would do that? I can't do that!


...Thanks for listening.....:
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Old 03-19-2009, 08:11 PM
 
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And then I feel like a horrible mother for thinking about throwing in the towel and just eating our old regular way for a few weeks and see what happens. Who would do that? I can't do that!
I did it. After our allergist appointment, where I had gotten a lecture from the MD with 4 residents witnessing about how DD isn't allergic to anything and she's only reacting to milk and soy- nothing else (the rest is my imagination) and the biggest danger with her intolerances is my own limiting of her food, blah, blah, blah. I was dangerously underweight and still loosing and he effectively scared me into believing him. So I did go back to eating whatever I wanted. And DD was miserable and a mess. So now I know and I don't need to wonder whether sticking to the ED is worth it - I can tell you from personal experience it is far better to eliminate the food than deal with the consequences (in my case).

Not that I'm advocating it. But you are not a horrible mother for thinking that.

Hugs Mama.

P.S. Please don't eat chicken and rice for a month if you are already underweight. Your health is vital to a good outcome, even if it means it takes longer to find the answers.


Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
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Old 03-20-2009, 12:02 AM
 
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Hugs. Most allergists just seem to be a huge waste of time and money. I'm another one who has been in the allergist's office, been lectured to about how eczema comes and goes and you can't learn anything from food trials, because when you remove something and the eczema goes down (or add something and it increases), it may just have been the "natural cycle" of the eczema, and not a "true" reaction. And been told that we can go ahead with wheat and dairy because he didn't have a SPT reaction to those, and have DH hear all this too (and have him agree with the MD). And me being underweight (down to what I was in 11th grade - before I even started my periods). But as soon as a whiff of dairy goes past DS, he starts to scratch. And he's up several times in the night. And the more tired I am, the more difficult it is for me to feed myself. I have been quite good about avoiding his known allergens/sensitivities, and yet still his skin is quite raw at times.

Can you get some support here with a rotation diet? I did one last summer, and it allowed me to eat quite a lot of things (and a lot of food). Part of the idea is that if there is something they are sensitive too, the body gets a chance to rest and recover before being exposed to it again. (I think Kathy can explain better). A rotation diet can also help determine some reactions, if you keep track of observations of the skin. My primary failure with a rotation diet is that I refused to rotate wheat - I thought it was too hard to give up. Heh - when I/we finally gave it up for good, things improved SOO much.

Best wishes to you!

DS, 10/07. Allergies: peanut, egg, wheat. We've added dairy back in. And taken it back out again. It causes sandpaper skin with itchy patches and thrashing during sleep. Due w/ #2 late April, 2012.

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Old 03-20-2009, 12:15 AM
 
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I'm sorry it wasn't a helpful appointment. Maybe this is because my health problems started in earnest in my early teens (not that I recognized what was happening at the time), and that's why we're here (my son, almost 3, and my daughter, 5). To me, their health and my health are inextricably intertwined. So your food allergies, which seemed to go away, maybe didn't? I mean--symptoms often seem to change, and I think as we become adults, the reactions are often muted and unclear, but then we have kids--and oops, realize that things weren't as okay with _us_ as we thought they were. So maybe not addressing this now will just mean that your son will have to address this later, on his own? Obviously he won't birth a baby, but these things can manifest in so many different ways. When I've been down at times, not wanting my kids to have to go through all this has been quite the motivator for me.

It's a hard road we're on. It just is, and even when you feel it's worthwhile, that doesn't make it easy. It's okay to feel pissed and down. To heal our children, we need to figure out what's going on with us, and sometimes with our parents and grandparents (my mom and dad and grandma, and likely my other grandma but she died many years ago, all have health issues similar to mine). I think the effort is worthwhile (except on my bad days) even though it's not fast.
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Old 03-20-2009, 12:53 AM
 
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I'm sorry. It's so disappointing isn't it? I guess I feel lucky that our allergist said allergy testing isn't 100% accurate and that elimination is the only way to know for sure. Of course, he had not help beyond that and here we are.

I'm not sure what you've tried cutting, but I've found personally and from reading here that some people who have those vague ED results have issues with corn that they do not realize. Have you seen this list: http://www.cornallergens.com/list/co...ergen-list.php
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Old 03-20-2009, 04:46 AM
 
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Oh we've so been there!!!!!!

Over and over again too. I have to say now that I've figured it out, I don't regret any of it. It was important to finding my voice and conviction. And really, making mistakes is a big part of that. At least it was for me.

What sort of foods do you think you are noticing reactions to? This is what drove me crazy and how the people in my life labeled me insane: DS *did* react to so many foods and strange combinations.... tomato paste or sauce produced a huge amount of eczema, fresh tomatoes, not so much. Ditto fresh vs. canned pineapple. Practically every fruit except banana and pear caused a reaction. It was only recently that it all made sense: food chemicals and salicylates.

From my elimination efforts and fatty acid supplements his skin was quite good and only flared once in a while a few residual spots... but still left me questioning myself and wondering how on earth he could be "allergic" to so many things. Especially since we see a heavy hitter allergist b/c of DS's ana allergies who is obviously concealing serious eye rolling at me and how many foods DS doesn't eat b/c I think he reacts. We won't even talk about how this is a central issue in the end of my marriage!

Well, it's b/c the salicylate/food chemical reaction is not immune system based but an enzyme deficiency which causes a pharmacological reaction (PST enzyme, which I also believe signals a sulfur deficiency but that's a topic for another thread). So after finally get rid of every trace of salicylate his skin is gorgeous soft and smooth and totally normal not even a teeny tiny bump anywhere! Other major improvements as well. It sucks to be right, and it's pretty darn wonderful too.
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Old 03-20-2009, 08:19 PM - Thread Starter
 
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Thank you ladies so much. You all have contributed so much to my understanding of these allergy issues and my ability to cope.

In the past 24 hours I've gone around in circles, over and over trying to figure out where to go from here. We've been doing an ED for gluten, soy, corn, dairy, and a handful of other things for about 5 weeks, but we have had 'breaks' where I've broken down and had a hamburger, etc. At this point I have decided to go ahead with our ED, and hope to stay on long enough to make some associations between foods and symptoms.

I feel like I am in the dark, trying to put together a puzzle, but missing quite a few pieces. I know you ladies understand. With my son, the picture is adding up to GI issues, along with the eczema, that I suspect are allergy related, but could perhaps be the result of some GI disfunction.

The eczema started about 3 months after he began to eat solids regularly throughout the day.

He had reflux as a baby, and grew out of it without meds. I wonder about the quality of his digestion because I think he is not breaking down his foods well, particularly when his eczema is flaring up. Lately his appetite has diminished and he very often won't swallow his food, but rather spits it out in a confused kind of way. I just realized last night that he has not put on weight in many, many months. Could be the normal toddler pattern, could be part of this larger problem.

Nights are awful, and many nights DS will do anything to keep me from laying him down, or being horizontal. He has always had gas issues, worse at night. At 15 months old, I still had to manually burp him after nursing. Now, he won't let me, but he still needs to get burps up or else the night time drama is even worse. He often wakes up groaning, grunting, screaming, twisting and arching like he's trying to get away from his abdomen. The poor guy, it's heart breaking.

He also is behind the masses on the verbal front, which could be unrelated, but is something to think about. But reflux alone doesn't explain things completely. I think it is some combination of poor digestion, reflux, food intolerances, maybe some kind of structural GI damage, and maybe leaky gut issues (if toddlers even get that? seems like a middle aged phenomena?)

Part of me wishes I could consult with a pediatric gastroenterologist, as the allergist and pediatrician have been useless.

We are doing lots of oils and probiotics, and are going to start doing enzymes. If I could afford it I'd do weekly core/CDI treatments, and any other bodywork or related therapy that might help, but the disposable income is just not there right now--I can only do what I can do.

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So now I know and I don't need to wonder whether sticking to the ED is worth it - I can tell you from personal experience it is far better to eliminate the food than deal with the consequences (in my case).
Thank you for sharing your experience Laurie! I am grateful to hear it!

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I'm another one who has been in the allergist's office, been lectured to about how eczema comes and goes and you can't learn anything from food trials, because when you remove something and the eczema goes down (or add something and it increases), it may just have been the "natural cycle" of the eczema, and not a "true" reaction. ..........
Can you get some support here with a rotation diet?
Thank you, yes I've been investigatinga rotation diet, but was thinking I would be better off with an ED/TED to really isolate the trigggers as soon as possible. I need to get him some relief now.

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I have to say now that I've figured it out, I don't regret any of it. It was important to finding my voice and conviction........ Practically every fruit except banana and pear caused a reaction. It was only recently that it all made sense: food chemicals and salicylates.
So after finally get rid of every trace of salicylate his skin is gorgeous soft and smooth and totally normal
Thanks Jane! I have been looking into this food chemical sensitivity that you posted a link for me on another thread and it does sound compelling--and also completely overwhelming. My eyes began to bug out while trying to get through the website. But we are having problems with fruits (apples and berries), and I think sulphites too, so I want to investigate this more. I am at home with Ds in the day, and a third of teh day is spent trying to get him to sleep, or trying to get him to stay asleep, so my time is really stretched, as I know it is for you all too.

I am trying to gather up my strength--this morning I had mega, super determination. Hopefully I'll get it back tomorrow morning. Thank you all!!
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Old 03-21-2009, 03:14 PM
 
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I am at home with Ds in the day, and a third of teh day is spent trying to get him to sleep, or trying to get him to stay asleep, so my time is really stretched, as I know it is for you all too.
This is a flashback for me... those days were baaaaaad! I used to spend the time adding up all the hours, ugh. Hang in there mama, it will get better!

I know it can be overwhelming. If salicylates are an issue things like tomato sauce or paste, peppers, cucumbers, honey, berries, cherries, oranges, apples, raisins/grapes -- esp. juices made from those fruits b/c it's more concentrated -- will increase eczema and sleep problems.
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Old 03-21-2009, 03:26 PM
 
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We went through the same thing. Except its been over and over again. The last Dr was saw said that not only was she not allergic to anything, but that she didnt have enough allergy cells in her body to cause a reaction......

Anyways so i then freaked out and thought that ti was one of the "crazy mothers" that you hear so much about, that restrict their child's diet for no reason and cause more harm than good. I have gone back and forth, for 6 months i restrict everything (and dd seems great) and then i will feel guilty and start to think "maybe it is all in my head, maybe all of her reactions have just been coincidences" and so ill do something stupid like let her have a corny dog ( i know how stupid of me right? ) and then i feel guilty for being so dumb to do it when she is up screaming and in pain for 3 nights.

Its frustrating, but i have learned in all of this to just trust your instinct.

And dont feel guilty, we are all trying to do what we think is best for our los!

Melanie- Mama to my super hero daughter superhero.gif bravely battling brain cancer. ribbongrey.gif ribbongold.gif  www.fightformaddie.com  and expecting 1sttri.gif 1/13!!!!

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Old 03-21-2009, 03:30 PM
 
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Part of me wishes I could consult with a pediatric gastroenterologist, as the allergist and pediatrician have been useless.

That is nothing but more unnecessary invasive tests and let down.

Have you taken your lo to a chiropractor?

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Old 03-21-2009, 03:44 PM
 
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Jacqueline R. posted this recently:

We've been learning about detox pathways in the forum lately- teaching ourselves (or getting whoMe/Shannon to teach us ) how to heal our IgG allergies (intolerances) through nutritional support, is basically what it breaks down to.
First thing we learned is that our soil is terrible. Due to chemical pesticides, herbicides and fertilizers, our soil is becoming more and more depleted. Which leads to our food not having the nutritional value it should have... Solution: Eat organic whole foods. ( No one said it would be cheap, fast or easy. )
Then we learned that our bodies aren't producing enough stomach acid (beet pee test- if it's pink, you don't have enough stomach acid) which is interfering with our absorption of nutrients from the food we *do* eat. These partially digested foods cause damage to our guts ("leaky gut") and cause further damage to our intestines, again preventing proper absorption of nutrients. Solution: increase stomach acidity through increasing consumption of zinc and/or fermented foods (sauerkraut, kefir, kombucha, pickles, etc). Be careful with kombucha- it can have a detox effect which can be very bad if you have mercury fillings.

This lead us to wondering what happened to the partially digested food proteins once they were in our blood (and milk)... Which lead us to finding out they should be getting sent for further processing... Which lead to... You get the picture.

So, we're presently working on how to get rid of the toxins produced by the foods not being broken down properly, as well as the other toxins which (we believe) caused the problems in the first place.
I think that about brings us up to speed, yes?


------------


Take a look at this thread discussing elimination diets vs. detox pathways: http://www.mothering.com/discussions...voidance+detox

Start here about detox pathways: http://heal-thyself.ning.com/forum/t...bstacle-course

And here are a few informal videos about detox pathways: http://heal-thyself.ning.com/video/video

and here about evaluating digestion and stomach acid (beet "pink pee" test"): http://heal-thyself.ning.com/forum/topics/the-beet-test

This thread about Healing the Gut with Food: http://heal-thyself.ning.com/forum/t...-gut-with-food

Nutrient Dense Foods:
http://heal-thyself.ning.com/forum/t...nt-dense-foods

Foods to Help Phase I and Phase II Detoxification:
http://heal-thyself.ning.com/forum/t...4160Comment655

check out www.eatingcultures.com to try and guess on some of your detox pathways, and figure out which nutrients will be important for you.

If the child is nursing, (I didn't catch his age), YOUR digestion, absorption and detoxification ability affects the quality of the protein (undigested) and nutrients in the breastmilk. Your (visible, and unnoticed) reactions (histamines, etc.) affects the amount of chemical toxins in the breastmilk. Your heavy metal stores also affects the ability of both of you to detox food chemicals.

One option is to eliminate food chemicals, another is to improve digestion, absorption and detoxification of food chemicals. The links above will help you to understand the nutrients involved in that!

Pat

I have a blog.
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Old 03-21-2009, 04:45 PM
 
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Thanks Jane! I have been looking into this food chemical sensitivity that you posted a link for me on another thread and it does sound compelling--and also completely overwhelming. My eyes began to bug out while trying to get through the website. But we are having problems with fruits (apples and berries), and I think sulphites too, so I want to investigate this more. I am at home with Ds in the day, and a third of teh day is spent trying to get him to sleep, or trying to get him to stay asleep, so my time is really stretched, as I know it is for you all too.
This is telling me that you're having problems with sulfur conversion and, because of that, the sulfation detox pathway. Salicylates are detoxed by the body via this pathway. The body converts sulfur to sulfites and then sulfates to be used by this pathway to "escort" the salicylates out.
You may be interested in the sulfur sensitivity thread.
Molybdenum is required for sulfoxidation (conversion of sulfite to sulfate), so if you're low this conversion will be impaired. This nutrient is also required by the sulfation and acetylation pathways... Is your son sensitive to antibiotics and/or sulfa drugs as well?
Be aware, however, that TOO MUCH molybdenum can impair sulfation as well.
One way to sort of bypass this conversion issue (though it doesn't help with the root problem) is to start supplementing sulfate (the only way I know of to do this is with Epsom salts and I, personally, would only use them externally.) This may allow your sulfation pathway to start clearing out salicylates. Taurine and glutathione, required by this pathway as well, are both derived from cysteine. We've been learning that a LOT of the detox pathways require glutathione and other cysteine derivatives. To help free up glutathione, you might supplement with vitamin C.

Wife of Michael , SAHM to Aristotle 09/99 Raphael 06/07 and Marius 05/09 Known only in dreams but never forgotten: Euphrates Decluttering 290/2010
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Old 03-21-2009, 10:23 PM - Thread Starter
 
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I know it can be overwhelming. If salicylates are an issue things like tomato sauce or paste, peppers, cucumbers, honey, berries, cherries, oranges, apples, raisins/grapes -- esp. juices .
It's interesting because, yes, many of our suspected triggers are high in salicylates--tomatos, honey, apples, citrus, raisins. I am workig my way through the failsafe information, and trying to figure out how to proceed next.

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I have gone back and forth, for 6 months i restrict everything (and dd seems great) and then i will feel guilty and start to think "maybe it is all in my head, maybe all of her reactions have just been coincidences" and so ill do something stupid like let her have a corny dog ( i know how stupid of me right? ) and then i feel guilty for being so dumb to do it when she is up screaming and in pain for 3 nights.

Its frustrating, but i have learned in all of this to just trust your instinct.
Yes! Our instincts are all we have, in many cases. I may be becoming one of those "crazy mothers," but so be it! My little boy has ME to help heal him--well, me and DH, so yeah, if I seem crazy (and I do to our in laws) c'est la vie because I am not abandoning my child to suffer if there is ANYTHING I can do-- to at least lessen his discomfort.

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Have you taken your lo to a chiropractor?
No, we have done other forms of bodywork but I am not personally convinced that chiropractic helps people in the long run. It may very well help heal people, but at this time my intuition is not feeling it, IYKWIM.

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This is telling me that you're having problems with sulfur conversion and, because of that, the sulfation detox pathway. Salicylates are detoxed by the body via this pathway.
Thank you Jacqueline and Pat for all this information!


I am trying to integrate all this new information--the detox pathway stuff warrants serious consideration and I need to sit down and relaly digest it all.

We typically use Ayurvedic treatments and nutritional regimines as our default healing system/lifestyle. For now I am going to integrate more Ayurvedic principles and treatments into a plan that continues to eliminate the Gluten, Dairy, Soy and Corn, as well as the high salycilate foods while we focus on re-establishing gut flora and healing, and I investigate the whole detox pathway concept more.

My hope is that we may build up our systems so that they may begin to heal and be able to handle our current triggers. I reallly do think this is key. Building! I hope to integrate the suspect foods back in slowly. I have come to recognize, through my time here, the many pitfalls and problems with eliminating triggers (through ED) as the primary approach over the long haul and my intuition is that it is not good for DS or myself.

Thank you all ladies for your help and support! :
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Old 03-21-2009, 10:30 PM
 
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yeah i know, i just want to tell my family and friends that they are welcome to come over to our house and deal witha baby in pain and wakeing every 3 hours if they would like. It makes me so mad that people think that i am not doing the best for my child. You know?

I am totally the "crazy mother" and im darn proud of it!

Not to sway your opinion, but i was totally against the chiropractor, but we took dd to one anyways (desprate times call for desprate measures) anyways, they did do anything to her, just used a lazer on her small intestines, and he checked her spine, and then gave us probiotics and did this weird vibration thing to her neck. The night after he did that was the first night that she slep all night without waking up! I swear!

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Old 03-25-2009, 01:19 AM - Thread Starter
 
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Thank you Melanie, I will consider it! If I find the right chiro I could be convinced for sure, I've just been to so many that I really did not trust, and should not have gone to.
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Old 03-25-2009, 01:40 PM
 
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Thank you Melanie, I will consider it! If I find the right chiro I could be convinced for sure, I've just been to so many that I really did not trust, and should not have gone to.

your welcome!

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