Road to Allergyville: Part I - Diagnosis

Our journey with all this allergy nonsense is such a tale, and probably too often moms are following in my footsteps, so I hope by writing this out, I may help someone get on the road to healing just a little sooner

In January, Chase turned 6mo. Six months was supposed to be this magical turning point when he would start to grow out of his "reflux", and maybe start sleeping better. He was by book definition "High Needs", but I read they grow out of that. HA, that's funny. At that time, Chase was on the max dosage of Prevacid for his weight, was actually over that per the docs, and his reflux was still horrendous. I tried following the No Cry Sleep Solution, thinking it was me, or us, and our routine that had maybe, dare I say, spoiled the little guy. All these fantastic improvements others were seeing, I got only glimmers of. Chase would still wake up every 45-90min, screaming out, but mostly just needing a mommy snuggle to get back to sleep. He'd wake up in the morning with gas every day. He farted like an old man. At 6 months, we did start solids and I didn't see any major problems except for corn. What I didn't realize was that starting solids only aggravated the already bad situation in his tummy as he was reacting to my allergens....more on this later

As we got into February, now 7mo old, the waking and pain seemed to increase, needing to nurse down every damn 45min, bobbing his head in pain, wailing. We propped the mattress at an angle. We tried probiotics. We tried warmer, cooler, more sound, less sound......I wondered what sins of my past karma was kicking my ass with. Finally, I gave him some more mylanta, on top of the already high dose of Prevacid, and yes, it did help. I thought I just had the worst refluxy babe and eventually, before he was 18, his tummy would feel better and he would sleep more than an hour. Little did I know but the antacids were only making the situation worse. More on that later as well.

Into early March and now doped up on Prevacid AND Mylanta, things stop improving, and seriously, I begin to doubt EVERY SINGLE PARENTING CHOICE we had made. Had we really created this monster? How in hell would we survive this child with enough energy and love to go on and go for #2 someday? We joked that Chase was just very determined to be an only child, but all joking aside, it looked that bad for a while. Miserable, we still stuck to our guns and tried to provide love and attention to all of our little demons needs.

It was at this time I posted on MDC asking for an 8mo old, whether his sleep pattern was normal, as EBF cosleeping babes DO tend to wake more and nurse more at night. Most moms unfortunately said yup, and it gets better after 2 year molars. Ummmm....thats 16mo away...F#$%^&*()_+!!! Luckily though, one mommy, said that it was her experience that babies who slept (or didn't sleep, ha) like Chase usually had a food allergy or intolerance. At that point, I had laxed on hidden dairy, still no milk or cheese, and even though soy was still out, there wasn't anything I was really avoiding. I was just eating what I thought was healthy, you know, lean proteins, steamed veggies, little starch, lots of fruit. Come to find out, for us, it was the wrong things to be eating. From that point on, I went GFCFSFCornF, which essentially means no gluten (wheat), casein (milk), soy, corn or any corn derivities (WHICH ARE IN EVERYTHING!!!). I asked moms on the allergy board what their infants had been like before they figured out their own allergy puzzles, and their stories all mimicked Chase. I was onto something.

I made an appt with our pedi to do allergy testing. You need to know that there are 3 different types of allergy tests, and most docs only give creedence or care to IgE allergy tests, which show what we typically think of as an allergic reaction: hives, exzcema, anaphalactic shock, etc. All of the IgE tests we did on Chase came back negative. During this time though, I had been actively parusing the GFCF board on Yahoo Groups, and picked up a copy of Is this Your Child? and based on all my reading, I KNEW Chase had allergies, I just had to find them. In the book, the author, an allergy doc from Buffalo, talks about in utero and infant allergy symptoms, which include hyper kicking, hiccuping, not wanting to be cuddled, reflux symptoms, frequent ear infections and she includes stories of her patients and how they described their child's early days. THEY ALL SOUNDED JUST LIKE CHASE.

Via the GFCF group and the book, I learned about IgG allergy testing, which test for gastrointestinal "intolerances" that cause all sorts of trouble, from sleep disturbances, to learning disabilities, to aggression and bleeding intestines. Here is a really good description of IgE versus IgG reactions. Unfortunately, allergy docs and pedis alike don't give much creedence to the testing because it is not 100% accurate, only 50-80%. Well, hell, I figured knowing something is better than knowing nothing, so I ordered the test. Oh yeah, I ORDERED THE TEST. This is because unless you see a DAN! doctor, its up to you to be your own medical advocate with this allergy BS and pave your own way to a diagnosis and cure. There are a few different labs you can order the test through, including Great Plains and Alletess. We chose Alletess because they are here in Mass and could pick up the vials from the doc.

Because I was (am) still breastfeeding, I also needed to be tested for allergies. I knew that not eating dairy and wheat made me feel better (and possibly played a major role with acu getting me preggo), but I never thought I was allergic. The reason BF moms need to get tested too is because their body's allergic reactions flag the bad food protiens in their bloodstream, which then end up in their breastmilk, and then the baby reacts to those. So not only can a baby have their own reactions to food, they can react to your reactions as well. So I also had my blood drawn for the IgG allergy test.

While we waited the 10days for our results to come in, we also had an appt with pediatric gastroenterologist at Mass General. We told him our story and he said, "I see this a ton, he has allergies, here I'll show you." YAY, confirmation from a doctor that this was allergies! I was so happy to finally have an answer, I cried right there in the office. He then proceeded to do an occult stool sample, which looks for blood in the stool not visible to the naked eye and yup, wouldn't you know, our poor son's intestines have been bleeding for god knows how long. This would be my first big piece of advice to mom's out there: if you think for 1 second that your baby might have allergies, have your pedi do a stool test. Had our own pedi done this way back, I could have addressed this months ago!

The GI also said that likely Chase never had reflux, and that reflux was just a symptom of allergy. So he asked us to start weaning down the Prevacid slowly, and stay with the elim diet we were currently doing. Follow up in 2 weeks. In the following 2 weeks, we went from 30mg/day to 7mg/day and then dropped it all. Confirmed, Chase never had reflux.

A few days after the pedi GI, we got our results back. CHASE HAD ALLERGIES, and of course, they were foods I fed him on a regular basis, or I used to cook my own food. Oats and Coconut are Chase's worst allergies, and he has a list of about 20 that he is sensitive to, including egg. I never knew I had allergies but apparently I did. I am allergic to wheat, dairy, egg, coffee, and 30 foods I am sensitive to. So we pulled all of our allergens out of our diet and the most wonderful thing happened.....CHASE GOT BETTER! He was happier, calmer, slept better, and didn't need to be nursed to sleep every time he woke. His gas improved significantly, as did mine! It was amazing.


Because we had lost so many foods, I started overcompensating for vitamins by increasing how much meat both Chase and I were eating. I also started supplementing with some great healers, cod liver oil and probiotics. So he was better for about 5 days, and then he started to get worse, and was showing new reactions, now including major skin rashes. I started to food journal to try and identify the causes. I started a severe rotation diet, where we only ate a certain food group, say foul, melons and nightshades, every 4 days. I tried looking at food chemicals, reducing the foods that were high in salicylates or amines, and totally eliminating high pesticide and GMO foods. I nearly lost my mind trying to figure this out. Luckily I am a big dork and made a spreadsheet to help me. I don't eat anything out of a package anymore except Lundberg Rice Cakes and Larabars. Eating whole, fresh foods all the time makes it a lot easier to ID allergens, but it does make life and eating out harder.

We had another appt with the GI and Chase still had blood in his stool. I honeslty wasn't surprised. With the food journaling we had figured out that butternut squash and other orange foods caused a problem (carotene to Vit A conversion issue), but the improvements we had seen had disappeared. The GI said it was time to experiment with formula, and lay off the solids, except for meat and broth, in an attempt to heal Chase's gut and stop the reactions. So, for the first time, I wasn't all broken up at the prospect of giving Chase formula, that was until I found out it was $50 a can and not covered by insurance. The plan was for 2 weeks, to give Ele-care, an elemental hypoallergenic formula during the day, and still nurse at night so as to not disturb our nightime routine. We started seeing some improvement during the day, but the nights, still weren't much better. With the food journaling, I started to think maybe beef was the issue, so we took 4 days off and then only I ate it for dinner. Overnight, Chase had a bad night and he had a rash by morning. DING DING DING DING. We found another allergen, and one that had shown up as fine on the IgG. Since pulling beef, we have seen the most improvement.

So upon this discovery, we stopped all solids and that is when we really started to see improvement. He's happier, calmer, laughing more, more verbal, and sleeping better. He's doing 2-3 stretches, sleeping in late, and life is so much better. It's not 100% yet, but I see the proverbial light at the end of the tunnel. We'll start adding solids back in the next week, and it will be a completely different approach. I plan on following a Weston A. Price method, in Sally Fallon's book Nourishing Traditions. The book focuses on the use of food as healing and providing the most nutrients, aka bang for our buck, with our food. We will likely do chicken and fish stocks first, then egg yolk, and if those pass, slowly slowly back with veggies, and then fruits. I will be Nazi-esque about food journaling and the 4 day rule.

So I hope that writing this all out helps someone who is still struggling with their child and their doctor doesn't have any answers besides colic, reflux or "high needs". If you feel like you are out of options and can't figure out your LO, food allergies might be the culprit. I'd encourage you to look into it. It is like jumping off a cliff, and the healing aspect of allergies will make your head spin, but it's so worth it. In the coming days, I will post about the how and why of allergies, how this happened to Chase and what, beyond elim diets, I am doing to help both he and I heal. Until then, best of luck to all the aller-mommies on this road with me, and those of you who are about to join us.

Coming Soon....a blog that actually gets updated!

I haven't been posting recently, and my last effort was going to concentrate on food. Well, our life has been consumed with nothing but food recently, and figuring out that food is what is causing all of Chase's problems. Countless doctors appts, blood draw attempts, nearly $1000 in alternative doctor/testing fees, and where are we? We have a kid (and a mommy) who each have their own set of unique allergies, and those are wreaking havoc on Chase's little body. And, the reflux is gone, it actually may have never been reflux to begin with.

I plan to do a series of posts this week, detailing the long and winding road we went down to get these answers, in hopes that some day it helps someone else. So for now, sit on the edge of your seat in anticipation, and put some positive thoughts out there into the universe that stregnthen me to get this huge puzzle all figured out.

No closer to answers

Well, apparently the gods are playing tricks on me. They think its funny I have been to our pediatrician 5 times in the last month, so they gave Chase a teething fever, threw in a tummy virus for good measure, and sent us on trip #6 of the last few weeks to the pedi. It was Friday, the day I had been expecting some results on the little guy's allergy tests. Come to find out, the ELISA 96 panel from Alletess was never completed because they couldn't get enough blood from Mr. Bad Veins, so only the CBC, celiac panel, and food specific RASTS were ordered. Drumroll please....he ain't allergic to a G-D- THING! Ok, let me rephrase that. He's not going to go into anaphalactic shock, get hives, or have his throat close if he eats eggs, milk, soy, corn, almonds, peanuts, salmon, scallop, shrimp, or corn. Well GOOD! But.....here's the catch.....he still may be "sensitive" to any and all these foods, and I have to watch for signs as we keep expanding his palate for any reactions. Well, doc, how do I know what's affecting him if the G-D reflux still isn't under control?!?!?!?!?!?

After trying the suggestion of dropping to 15mg of prevacid, we had two horrid, sleepless nights here, with a little boy who was obviously in a lot of pain. Screw the suggestion, back on the regular dosage of 15mg twice a day, plus Mylanta before nursing. We've now switched out the mylanta for tums so he isn't getting all that alluminum. It was working "ok" up until this tummy bug and fever, but "ok" still means waking 4 or 5 times a night. After seeing the doc, him not really having anything more to suggest, me scouring the internet, and speaking with the ever knowledgable LC Teri @ Hopkinton Drug, here is our new protocol:

Beastfeed
15mg prevacid in the AM
probiotic & cod liver oil mixed in breakfast
water at breakfast
Bottle
ground flax mixed in at lunch
water at lunch
Bottle
Prevacid before 1st evening bottle/boob
Dinner
aloe vera juice with/after dinner
2 crushed tums before nursing down for the evening
Breastfeed

We'll see how this goes once this fever/teeth crap passes (you have 6 teeth already, do you really need more right now?!?!?) and then re-evaluate. If it does nothing, at the suggestion of another reflux/allergy momma who was kind enough to read my blog, I may introduce Prilosec.

You know, when you go to Children's Hospital, you eat a big slice of humble pie, and thank your lucky stars your kid isn't one of the ones that knows that place as their home, and I know of all the things that could be wrong with Chase, reflux and allergies are minimal, but still.......I just want my little guy to not feel pain and be ok.

Know when to walk away....or out of the doctor's office

These days, you need to be your own advocate when it comes to your health. When you see a doctor, if you don't have confidence in their advice, if you think something is off, if you don't get the warm & fuzzy, its not written in stone that you need to follow that doctor's advice or even see them again. Mommy-sense is the 6th sense, and if its telling you to walk out of a doctor's office - DO IT! and don't look back. Always trust your mommy senses.

I say this all in light of our GI appt yesterday. A day I had high hopes for, with potential answers, medication alterations, and a full allergy panel so we could have some idea how in heck to make Chase's poor belly better. As I mentioned in a recent post, the little guy's reflux is out of control again. Note to self - lower expectations. What ended up was me walking out, bewildered, disgusted, and without any answers. FANTASTIC!

The appt started with the usual height and weight check - 28 1/2 in, 18lbs 14.5oz nakey nakey on their scale. A tad lower than I expected, but ok. The NP came in to talk to us about symptoms, reactions, and both of our diets. I explained how Mylanta was working while the Prevacid had lost its effectiveness. I shared with her our diets of veggies and fruits, with egg & meat for me, and minimal exposure to those items for the Bubs. I explained the constipation issues, and how he once screamed in pain while I helped him poop with a suppository. I explained the bloody poo from the early days, and the corn nightmare of late. She scribbled furiously on her notepad, keeping up with the rollercoaster of reflux that has been our life since July.

What happened next floored me. The NP said our diet lacked dairy (because he seemed allergic early on with bloody stool, dumbass) and guessed this was the cause of his weight issues, and that he should be eating things, now I am quoting verbatim here, MAC AND CHEESE. She also suggested we see a nutritionist, and made a somewhat snide comment about my post partum weight loss, implying, at least to the now frazzled me, that I have an eating disorder (Um, lady, I eat 4 meals a day, FU.) They wanted to decrease his Prevacid dosage, despite his condition getting worse and had no alternatives to Mylanta. In addition, there was no good answer for the chronic constipation other than "Just give him Mirilax for that." And to top it all off, they had a very hard time finding a vein to take blood for the allergy tests I literally had to beg for, so writhing and screaming in pain C$ was invetiably rescued from the horrid experience, no blood taken, no answers, nothing accomplished.

Stepping in when doc's are treating your child, or trying fruitlessly to draw blood, may seem like an overbearing act, and cause for some embarrassment or looks from said staff. Guess what? at that point, I couldn't give a flying you know what what anyone in that office thought of me - it wasn't the place for us to get answers from. So I scooped up my son in my arms, held him tight, tucked my momma bear claws away, and told him tomorrow would be a better day. Don't be afraid to do the same if you ever feel like your child's healthcare is being compromised or short changed. You da momma, you da boss, nuff said.

Reflux, Pain, and the whole crazy thing

Infant reflux is one of the hardest things for new mommies to deal with. Often misdiagnosed as colic, and/or resulting from an allergen consumed by the breastfeeding mother, mommies with newborns will do elimination diets and have multiple pedi visits before a being given a proper diagnosis. And sometimes, it isn't even the proper diagnosis, its an allergy versus true reflux. Any mom dealing with a baby who they think has reflux should see a GI to ensure the proper diagnosis is given.

The struggle doesn't stop once diagnosed. There are 4 different types of meds given to combat reflux, given in order of severity: Antacids, H2 blockers, PPI's, and Pro-Motility drugs. Click here for the Marci-Kids description of each type of drug. What is one of the hardest aspects of having a refluxing infant is that the body builds resistance to the meds as the infant grows, and because infant growth is initially very fast, keeping on top of the reflux via medication requires frequent adjustment and increased dosages. Then, sometimes, they stop working all together, and you need to try something more aggressive.

Chase was diagnosed with reflux at 6 weeks old. He really had been experiencing bad symptoms for 3+ weeks, but I, like many others, attributed most of his crankiness and inability to calm or sleep to just being a cranky baby. I felt like I was doing everything correct for him to be healthy and happy, and yet, he (and yes, we) were miserable. The blood curdling scream-cry from that time is something I hope to never hear again, because I now know how much pain he was in. Luckily, my husband kept saying, "something is not right" and we did eventually figure out that yes, this poor little guy has reflux. We actually found out as a result of last resort. Chase had been crying for 5 hours straight one night, I was about to loose my mind, and I just was willing to try anything to help the poor kid. I found something online about reflux and Mylanta, so I gave him a little and it was the most amazing sight: Chase looked at me, in still silence, relieved, and immediately fell asleep. So my baby has reflux....

Chase was initially put on Zantac, an H2 inhibitor. It worked for a while, but we needed to keep upping the dose frequently to keep up with him. Finally, we reached the peak dosage and it stopped working. We then switched to Prevacid, a PPI, it was working ok for a while and then stopped. After checking the dosing calculator on Marci, the NP at my pedi's office DOUBLED his dose to 30mg a day. That worked up until a few weeks, maybe a month ago, when he started waking up more at night not as a result of teeth (he has 6 already!) and wanted to nurse frequently. Figuring that the high dose of Prevacid he was already on was taking care of the reflux, I assumed his troubles were Milestone and Growth Spurt related, or even another Sleep Regression. I never expected that it could be reflux again, as docs tend to say kids start outgrowing reflux at 6mo. I started cutting out gluten and casein, just in case he had allergies and cut out corn and all corn products because he definitely had a reaction to his cheerios. Nope, not a big change. So two weeks of nearly hourly wakings, horrible supply as a result of all night nursing, sore nipples, frustrated mommy, I started googling again. Google: Arching back, throwing head back, frequent waking, 8mo old, only sleeps when held, crying while asleep.

Why it didn't don on me that all the symptoms I was googling were reflux related were beyond me. Maybe the sleep deprived brain really is useless! But every article I came up with, including the responses to my post on Mothering, pointed back to reflux. DUH! Sometimes when I have these Duh-lightbulb moments, I feel guilty for not being in-tune enough with my child, like I should have known all along it was reflux, but then I step back and remind myself that 1, I am not a doctor, I only play one in my house, and 2, easing reflux is like trying to play pin-the-tail-on-the-donkey, drunk, and in a zero gravity tank.

So, the plan for now is to survive this week by doling out the Mylanta as needed, on top of the Prevacid. Its not a suggested course of action because it weakens the Prevacid, but for now, short term, the benefits of a good night's sleep for all seem to be outweighing the risk. We have our first GI (Gastrointerologist) appointment next Monday, when we will see what he has to say about the current course of medication, and also get an IGG allergy panel, to see if there is anything Chase is reacting to. Maybe one day we will have it all figured out......