Saturday, April 14, 2012

Regina's Story

I thought I'd write up the stories of each of my four girls. Their health, the doctors, the food... what changed and how it helped.

Let's start with my eldest:

Regina -- 6/18/2003

I fell pregnant with Regina in late September 2002. The pregnancy was a rough one, and she was late by nine days. Labor and delivery lasted 13 hours after being induced for high blood pressures and no amniotic fluid. 

Regina came into the world weighing 7lbs 0oz and 21" long. The only problem she had was a hooked lower leg and foot. Apparently it was caused by my being a short person (5'1) and she had run out of room. (Thankfully all was made right after a few months of therapy and exercises.)  Other than that, she nursed very well, she slept well, and she was a great baby. 

Everything changed at two weeks old. 

One day I noticed she felt warm and was unusually fussy. I took her temperature and found she had a 100.4 degree fever. I called her pediatrician, who was out, so I had to call the ER where the On-Call doctor said "It's no big deal. Call me if it get's to 101.4." 

I figured an ER doctor would know what to do, so I took Regina outside and we walked... I bumped into a neighbor and she said "that baby looks sick." So I told her how I already called the doctor and what he said. Her reply was "You're the mom, get her to the hospital!" saying it in a "what's wrong with you?!" tone. So I went!

The hospital was a horrible experience. They refused to call Peds down to get the IV going and instead they used the ER nurse (who clearly didn't know how to draw blood from a newborn), so Regina freaked out and screamed and screamed. They finally did some blood work and a few other tests, and said "we're not sure... probably a UTI (bladder infection). Give her this antibiotic."  

I was skeptical since my Mom (an RN) had always talked about not taking too many antibiotics, and the ER could not give me a solid diagnosis. However, I didn't know what else to do with a feverish newborn, and the threat of meningitis scared me enough to give her the antibiotic.Within 24 hours her fever went away, we relaxed, then all seemed fine. 

And it was fine. Until it wasn't.

For the next nine months Regina had a horrible case of colic. She screamed up to 16 hours a day. I would hold her constantly in an effort to calm her. I sang, I danced, I walked, I tried baths, gas drops, wrapping tight and heating pads. Nothing worked. Nothing. And in the meantime the screams were terrible--full of pain and agony and even anger. I was at a loss. I have ten younger brothers and sisters, so I knew how to deal with crying babies. I had never seen a baby cry so much! 

During this time she had also developed what the doctors called Constipation. She couldn't defecate. I would watch as her stomach would distend, as she would grimace and scream, and knew I could do nothing to help her. The only way I could help relieve her was by inserting a q-tip with jelly on it. And all that would come out was liquid at a high force. What the heck? How could this be constipation?

I took her to several doctors: our pediatrician and two specialists. 

When I tearfully went into our pediatrician and told him that all she does is cry, she screams in pain, and can only defecate when helped. He smiled, and said "babies cry. You're a young mom. It takes a while to get used to things. She's fine."  I remember crying in anger. Anger of his reaction and anger at the helplessness I felt. 

I finally got into a specialist in Queens, NY when Regina was 10 weeks old. I typed up a paper which told what her symptoms were. When they started. What we had tried. And how she reacted to the things we used. I handed the doctor the paper and said "this will help explain a lot."  The doctor took the paper, but didn't read it. Not even a glance! She simply said "well, babies cry... it takes a while for their intestinal system to mature. You should start feeding her baby food. Sometimes the fiber from it will help push things along."  When I said "if you look at the paper, you'll see we have tried giving her prune juice and it had no effect." She didn't like that. She repeated "give her baby food, and she'll be fine."

The other specialist said the same thing. 

They wouldn't even read the paper. I was so disheartened, but I figured they are doctors, they must know something, so I took Regina home and tried to feed her some rice mixed with prunes. Yeah, that resulted in nothing but a huge mess all over her clothes. Babies at ten weeks old are not meant to eat. I tried a few more times over the next few days, but quickly gave up since there was no change, and I was skeptical the theory of it was even legit. 

At this point Tom and I just realized that it was going to be apart of our daily lives. And we prayed and hoped Regina would just grow out of it. We didn't know what else to do. 

Around 10-12 months old, she seemed to be getting better. She still couldn't go to the bathroom on her own. She had a majorly distended stomach (we even had to buy shirts two sizes too big just to accommodate it) and always looked tired, but she had stopped screaming. She had turned into a really bright baby who loved books and being outside. She loved to play dress up. And hated taking naps. 

By age two I realized that she was still waking up three or more times a night asking for juice or water. We lived in an apartment (in scary NY) so I didn't dare let her just cry it out... plus it seemed like she truly needed it. (Now we weren't juice people really... I would give her a max of 4 ounces of pure apple juice, per 24 hours, but always diluted 2 oz juice with 6 oz water.) She would freak if she didn't have it... I started logging how much liquid she was consuming per 24 hours day (milk, water, and juice/water), I did this for a week, and it came to over 100oz per day for a two year old! 

What is normal, you ask? Most toddlers between the ages of 1 and 3 drink approximately 44 ounces. Regina was drinking about three times the normal amount, and she still couldn't get enough. This really frightened me so I took her back to the pediatrician, wondering if she had Diabetes Insipidus. I walk in and say "Something is wrong with this baby. Her stomach is so big, she is constantly drinking, she can't sleep through the night..."  And again, he smiled and said "well, kids start sleeping through the night when parents run out of patience. The question is: how patient are you?  She is fine."  

What the heck did that even mean? Was he saying I was doing the wrong thing by getting up with her? Did he mean that I should get angry with her and tell her to shut up and go to sleep? Again, I have a million younger siblings, I know when kids are playing you and when something is really wrong. Something-I don't know what-was really wrong, and I wasn't going to allow her to suffer alone at night. 

From the age of two Regina would ask for salads, she liked dessert but it wouldn't be her go-to, she loved fruit and vegetables... I was always amazed and thrilled that my little girl wasn't just a "I only eat chicken nuggets" kid, but was sort of mystified as to why that was. Being pregnant, McDonald's was my new best friend (when I was able to eat, at least) so I was sure she was going to be a chicken and fries kid. But she refused. She wanted salad with grilled chicken. I wish I had realized why at the time....

*I should mention that Regina had all over vaccinations because my doctor told me he'd turn me into Child Protective Services if I did not comply. I don't know if NY had a law about this or if he was just that outraged that I would question him. In any event, I was young and scared, and didn't want to go to jail, so Regina had her full series of shots.*

Anyway, after seeing several doctors over the years and never getting more than a condescending pat on the head and a "she's fine" we decided to stay away from any doctor as much as possible. We made peace with the fact that she would just have issues and we would do our best to help her out with diet and exercise. I was always looking for things on the internet and hoping to find answers, but there was really nothing.

We move to Alabama just days before Regina's third birthday (we also have two more girls by now) and hoped to get her feeling better in a new environment. It didn't work though. She was potty-trained at this point, and was able to manage her constipation on her own, but still looked tired, her hair was thin and brittle, she still looked six months pregnant in the stomach and had trouble sleeping. Sad to say, it was a new normal for us, so we didn't even give it a second thought. I refused to take her to the doctor in AL since I could only get into the clinic which had a reputation for calling CPS on you should you refuse to follow the doctors orders or the medications they dispensed. 

A year or two later a new doctor came into town. His website said he wanted to find the root of all health problems, not just treat the symptoms, and he wanted to treat the whole family not just see us us numbers. I thought this sounded promising... so I made an appointment and got Regina in as soon as I could. 

Again, I took in a paper of her health history, what we've tried, and how she's still the same. Of course, he didn't read it. He took an x-ray of her stomach, drew some blood, and --surprise-- he told me nothing was wrong with her.  "Kids have big stomachs. It's nothing new. She's fine."  I wanted to scream "I am so tired of hearing this!" but that would have been rude, so I didn't. I pressed "but she also can't stand touching certain fabrics, brushing her hair kills her, and she is always looking tired and dazed... even though she is very bright and happy."  He smiled. 

I really hate doctor smiles.

We went back six months later. He told me to clean out her colon by giving her Miralax. That constipation was causing the distention and the inability to go to the bathroom. When I said it had to be a deeper problem because she eats well and runs around a lot, so there is little reason for her to be constipated... he smiled and said "well, how much caffeine does she drink?"  What?! Nothing! Who feeds there 3-4-5 year olds caffeine?! He looked surprised at that, which was sad.  Then he said "well, if you add in more vegetables, and not so many fries, that might help."  I couldn't believe how much he refused to listen. I replied "Yes, I know. that's what she eats salads daily, drinks water, and doesn't fill up on chicken nuggets" (not that we didn't take them to McDonald's occasionally, because we did). He shrugged it off, and said her colon was indeed impacted, so she needed to use the Miralax. Not know what else to do, we gave it to her twice a day for a week. It helped move things, but it did not solve her big stomach or other digestive issues. 

We went back and I asked him to test her for food allergies since I had heard that some allergies can cause digestive issues. He said "well, I could, but ... could you bring her back at the end of the month, because it's expensive and I only do those tests at the end of the month."   At this point I was done. I was the one paying for it, I had a child who was sick NOW, and I wanted answers NOW. No, I am not going to come back in a month. I am, however, going to find somebody else to help us. 

But where do I go?  At this point Regina is five years old. I was pregnant with our fourth baby, Grace (who is now in heaven), and had a nanny half the time. She had suggested we see a chiropractor. 

I was skeptical since I had always been told "chiropractors are for weird people", but I had nowhere else to turn, so I made an appointment and we went. 

This chiropractor spent time with both Regina and me, ran some tests on her spine, and helped me out by ordering blood tests for allergies. He was nothing short of a miracle. He could tell what was wrong with Regina before I gave him any information. It was really shocking. And it filled me full of hope. 

The tests came back that Regina had 5+ responses (very allergic) to: soy, egg yolk, peanuts, dairy, and one other thing... (I can't remember if gluten was in this test or not, but we realized by Going Primal that she is indeed intolerant of gluten.)

So we made drastic eating habit changes and hoped for the best.  She did seem to perk up a little bit, but she still had the big stomach and looked tired all the time. 

Forward another two and a half years (to August of 2011) and we now live in Kansas. We drive from Kansas to Alabama where we would spend the Summer. It's a two day drive so we spent the night in a hotel just outside of Arkansas. I woke up several times that night with my heart racing and my brain screaming "breathe, breathe!" it took me a while to figure out why this was happening, but it finally dawned on me that Regina was not breathing while she was sleeping. She had Sleep Apnea!

After I read about sleep apnea, and realized Regina had every symptom, I became furious the doctors had not picked up on this. . . the tonsils three times the normal size, the inability to swallow correctly, her muddled speech, her tiredness and not sleeping well... and strep throat 3-5 times a year. How could they not have suspected?

We had her tonsils out in September. We didn't decide this lightly... I really was hesitant to just put her under general anesthesia and have a serious operation, but given that she wouldn't grow into her tonsils, and the apnea was fairly severe, we decided it was the right thing to do. 

The recovery was rough on her. She suffered depression for about four weeks afterwards, but after completely recovering, she was a whole new kid. Almost. She still had the stomach issues and the bathroom problems, but she was bright-eyed, more attentive, and slept much sounder. She no longer sounded like Darth Vader when breathing. And seemed much happier overall. 

The last piece of the puzzle came when we went Primal. Taking away gluten got rid of her big belly, and her constipation problems. 

So looking back, I think the antibiotics at two weeks old caused her gut to weaken, it never recovered because I was told to feed her things (rice, oatmeal, etc) that would further the damage, and this damage led to a gluten intolerance and other allergies/intolerances. And probably the vaccines didn't help either.

The constant water drinking and craving non-carb foods was her body's way, I think, of trying to repair itself and trying to rid the toxins from the damaged gut. Really amazing when you think about it. 

She also had mold sensitivities (this will be more of a central point in Veronica's Story), which compromised her liver, and also compromised her ability to heal her gut.

I can honestly say I did the best I could with the information and help (or lack thereof) I had at the time, so I don't like to play the "if I had only done...X" game, but there are those days where I beat myself up because I feel like I'm the one who gave her the health problems. 

What would have happened if I hadn't been so scared of doctors threats? 

What would have happened if I had demanded they do what I wanted, when I wanted it done?

What would have happened if I hadn't bought into the hype that doctors must know better than me, and I had gone on to trust my gut?

What would have happened if I had known what effects antibiotics have on our gut, and how foods can encourage candida or aid in its dissipation?

What could happen if parents are better armed with knowledge of how our bodies work and how important the choice of foods are to its function?

Dare to believe that the power to heal your children is within your reach and that healing may not always include doctors.*

*I am not disputing the important role many doctors play in the health of many people. There are cases in which a real M.D. doctor is necessary, and there are doctors out there who are good doctors and want to help parents do what is best for their children. I just haven't met any of them. Yet. 


  1. Stories like this frustrate the heck out of me. How can doctor's be so insensitive and wrong? Why do they disregard a parent's gut so often. WAnd why do we pay them insane amounts of money for crappy care!

    I hate it because even if you know they are wrong for some bizarre inexplicable reason you trust their authority. I had seizures a couple years ago and the anti-convulsant meds were making me crazy. Panic attacks, anxiety and depression. The doctors kept telling me it couldn't be the meds. I didn't believe them as the only time I had every had had similar problems was when I was previously on seizure meds (14 years prior), but at the same time I doubted myself and thought maybe I did have psychological issues and I was crazy. I finally went off of the meds and I returned to being a normal human being. Shocking. Thankfully I haven't had any more seizures either.

    1. I know, I know. It's amazing that we continue to trust them when the continually lie, bully, or just don't know what to do.

      I'm glad you are doing better!

  2. I'm sorry you went through this experience! How awful! So glad you found out about the primal lifestyle and are seeing improvements in your and your family's health!

    This specific post reminded me of this video by Tom Naughton:

    Another video that you might want to check out is this one by Gary Taubes.

    1. Thanks for the YouTubes; I'll check it out tonight!

  3. Wow, I had no idea that you guys went through such a painful process. While I understand the questions that you'll have in your mind about couldas and shouldas, you're right, you did the best that you could. The main thing is that you did find the solution and that things have changed for the better. Also, she is still young enough that the changes that you've made will become part of her future lifestyle. Sure, you cannot control everything (nor would you want to), but at least she'll know what correct choices to make when she gets older.

    From my limited perspective, it appears as if she is always all smiles.

    1. And that's just *one* of the stories!

      Thanks, she is happy for the most part. :)

  4. I hate it when doctors presume that they know you (or your child) better than you do. I've had multiple bad experiences with doctors and very few good ones. And the thing that annoys me the MOST (drives me absolutely crazy) is when they don't listen to me. How could they make a diagnosis when they refuse to listen to the patient?! Er! As a friend of mine said, most doctors should be replaced with vending machines.

  5. Wow. What a story!!! I feel like crying for both of you. It's shocking the incompetence you've encountered with supposed "medical professionals.". The bright side of this is I feel very strongly that you will become a powerful voice, an advocate for better nutrition and health education for people in general and children in particular. Take your frustration and anger and forge it into a powerful tool to help others. People need to hear your story. This blog is just a start.