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Milk Protein Allergy & Encopresis

Our Story

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Behind the Name

Breaking the Silence

This is not something that gets talked about. For most it's an embarrassing thing, especially for the kids, so we keep it to ourselves as much as possible. Perhaps part of it is even a small voice inside saying, if you keep it quiet, it's not real. But see, that's the problem. Too many of us have been 'quiet' about this, and so it essentially is 'invisible' to too much of society. Maybe if we can come out of our shells and actually speak out about this,.. we could potentially save a lot of other children, and their families, some unnecessary anguish. We can help educate others on what to watch out for,.. early on. We can let eachother know, we're not alone in this.... as parents we need to know this, and the kids, well, the kids need that most of all. With that said,.. this is our story.

From the beginning...

When Brittney was born, she was very colicky. She cried all the time, and it was heart-wrenching. She seemed like she was in such pain, and we just couldn't figure out why.
 
Every time I breastfed her, she would projectile vomit within minutes, and her stools had turned to a thick, sticky, black tar-like substance. I knew something was wrong, but what? The doctor just said, "don't eat spicy foods", but I wasn't. In fact, I was being very careful what I ate.
 
I was determined that my baby was allergic to me! The doctor of course said, "Noooo, that's impossible," and left it at that... keep trying she said. She treated me like I was crazy, like I was over-reacting.
 
But then again, this is the same doctor that told me I was crazy when I said I thought something was wrong with my first daughter's leg, during pregnancy, because I could hear & feel a 'clicking',... after she was born, it was found that she had a dislocating hip, and suddenly I was the talk of the medical board because I knew about it while I was still carrying her)... go figure. 
 
This was also the same doctor that refused to come down to deliver Brittney the night she was born because it was the start of the weekend and she wanted extra sleep before her daughter's soccer game... my water wouldn't break on it's own, and she waited to bother coming down to the hospital until the nurses called her about the dozenth time begging her because I was at 10cm,... my baby went into distress, and they had to call a special pediatric physician down to take the baby as soon as she was born,.. and then this doctor had the nerve to get mad at me because my water finally ruptured all over her as my baby's head emerged from  my body,.. Hmm, no wonder I decided not to listen to her anymore, do my own thing, and then switch doctors.
 
At one week old, I made the decision to switch Brittney onto a soy infant formula, within less than 12 hours, she was completely fine. No more screaming out in pain, no more vomiting (projectile or any other), and her stools had turned back to the soft yellow, cottage cheese looking newborn baby poo they were supposed to be. Yes, that fast.
 
I still had no idea to think that it could have been through cow's milk protein in my breastmilk from the dairy I occassionaly consumed, and further having no idea how many products actually contain it... (see, No Milk to get a good idea).
 
Brittney was doing incredible so she stayed on soy infant formula until around her 1st birthday, at which point we tried her on cow's milk, as most people do. She seemed to do fine with no problems that we could notice... and we had always been discouraged about any milk allergies, breast, cow, or otherwise.
 
By 18 months, Brittney had potty trained herself. We were amazed,.. she just decided to do it one day, and that was that. She was soooo proud of herself, too, and so were we, naturally!
 
But, shortly after she began to have little 'accidents', or so we thought...
 
By age two, I knew something wasn't right. She was uncomfortable all the time, and very cranky... this was bar far more than any normal "terrible twos". A trip to the doctor, and an x-ray later showing severe impaction, she was diagnosed with encopresis.
 
Encowhat??? I remember thinking. The doctor's description was pretty basic, and so I, of course, hurried home to 'research' encopresis.
 
We of course, went through all the stages of trying mineral oil, lactulose, and Miralax,.. enemas, you name it. The screaming pain still haunts me, and of course even more so after hearing it year after year after year. My heart has ached for her.
 
We also went through some bouts with severe behavioral problems and mood swings with her to the point I thought she had bi-polar syndrome. I was so naive back then that I want to kick myself even today.
 
I mean, who wouldn't act out,.. who wouldn't become depressed, angry, and irrational about everything when your life as you knew was so excruciating to live.
 
We consulted with therapists, but never found one that had the right attitude about the situation, and so I refused to put my child into the hand's of one who ultimately believed that her problem was 'all in her head'.
 
First with one, then another, and another,.. no more, I gave up, and continued to do my best loving & supporting my child.
 
But it was hard,.. so hard. It's a very difficult thing to understand, especially when at the time I lacked so much information. Seven & eight years ago it wasn't as easy to find the information you can today.
 
But even today, it seems you have to really work to find information that isn't laid out much like a form letter point blank stating "this is encopresis", and beyond that, even more difficult to find information to help you find a cause not just "treat it with laxatives".
 
I don't want to just treat it blindly,.. I want to know what is doing this to my child, and can I do something else, something better to stop it???

It's been a long, hard life for my daughter, and now to find out that it didn't have to be makes me ill. Especially since it's something I questioned over the years. I was brushed off,.... just one of those moms who think they can outsmart the doctor, right?
 
Well, in my experience that's been the case on more than one occasion, and with each of my children so if I feel strongly about something I'm going to speak up. Sometimes, it's a matter of pressing the issue until you find a doctor who will listen and actually work with you.
 
I remember when Brittney was about 5 years old, it was about a year after I had my hysterectomy, and I had tried switching to a soy diet to help with the menopausal symptoms. The girls all shared in this trial, but it never occurred to me until recently that Brittney had actually been doing very well around that same time.
 
Perhaps I just have had too many other things revolving around my head and my heart all these years to be fully capable of recognizing these things. To think about it now, just makes me feel like, "How in the world did I miss this???". Although I hadn't cut all dairy out, I had just added soy in, and Brittney hadn't had a complete recovery either. My stint on soy was short lived for the menopausal symptoms, and presumably, it was shortly after that that Brittney's problems resurfaced.  
 
Our youngest daughter has her own health issues (See, http://4ashley.com), and that has consumed much of my time & emotions as well,.. for our whole family, and so it does make a difference in being able to be 100% alert to each & every person's needs, developments, reactions, and so forth at all times, but still,.. I feel guilty.
 
And even though this is something that the doctors woudn't give the time of day about so I tried to let well enough alone on the subject,.. Now, knowing the truth and that I should have pressed the issue harder,.. I feel guilty.
 
Knowing this is not my fault,.. it doesn't matter. Retrospect is a real killer, and so yes, I feel guilty.
 
Well, to jump on to the present, the here and the now,... I have finally taken this into my own hands. I took my child off of the laxatives, we've gone dairy-free, and switched to soy.
 
After only TWO days, we saw results. What a difference! Her body seemed to do it's own 'cleansing' for the first two days, and then after that, she seemed completely normal.
 
She had a normal sized, normal textured bowel movement every day with maybe a one day break every 3rd or 4th day, and best of all,.. no pain. No more soiled underpants, no more embarrasment, and no more blood curdling screams. Her attitude has even made a huge improvement,... she's happier more often, she's relaxed, she's comfortable,... she is relieved. And most importantly, she's continuing to do well!!

I cannot begin to tell you how many tears of joy we have cried together. This is an amazing thing for us.
 
I am not here to tell you that this is the solution for every child with encopresis,.. it's not, but dog gone it, here me when I say, if you even suspect this could be the nasty, underlying culprit behind your child's encopresis then talk to your doctor, and don't let up until you've exhausted the possibility, and can ultimately rule it out. 
 
Since our huge success with eliminating dairy, we have also gone vegan/vegetarian, and further have reduced caffeine consumption... Brittney is doing excellent, and is an excellent example of what strong will and determination will get you,.. if you just open your eyes to the possibilities, take it all in, educate yourself, and then act on it. Follow your gut instinct.
 
No, not all kids are allergic to milk protein. No, not all kids will improve 100% from these changes, but a vast majority could very well improve enough to have a better chance at getting headed in the right direction to recovery, and without this chronic abuse of laxatives. Laxatives are NOT the answer. 
 
These changes are considered overall better for your health regardless of a medical condition. And FYI,.. alergy tests are not inclusive. You can easily receive a false negative.
 
My hope for this awareness site is to provide a wide collection of information in one convenient location,... in hopes that parents will stop and take time to really educate themselves. Sometimes I just can't help but feel that the way so many doctors inadequately handle encopresis, and the way so many parents just sit back and accept it that way,.. well,.. it's like the blind leading the blind.
 
Understand, I am not anti-doctors,... it has just been in my experience that when it comes to encopresis, too much gets swept under the rug. Nobody wants to talk about it,.. or about what is causing it... they just "treat" it with that dreaded "L" word. Laxatives. I'm so sick of hearing that. They say "death begins in the colon",.. so why not look harder to find the source of the problem, and work at treating that???
 
Whether your child's specific case is related to MPA, I can't tell you, but no matter what,.. the bottom line is this:
 
For the love of your children, do your best to get to the root of the problem,..
 
Don't just treat the symptoms.

This site does not replace the need for specific advice from your doctor. This site is for informational purposes only.