I remember feeling so helpless, scared, angry, and lost as I tried to find posts from other moms, talking with our pediatrician, consulting a pediatric dentist, seeking out a specialized acupuncturist, switching pediatricians, researching, researching, researching. And it is insanely frustrating. I am SO glad we are at a better point now.
So. One paragraph at a time.
Also, this post will be graphic. Like, descriptive soiled diapers, pictures, etc etc.
I first suspected something was up when Anderson got some horrendous baby acne. I know baby acne is "normal" but when I put a little breastmilk on it, per a helpful mommy forum, it went out of control. I'd already been able to see the acne was primarily where milk would have spilled during his feedings, around the mouth, across cheeks, occasionally around eyebrows, and down neck and onto chest. In case your eyebrows are raised, I would refer you to my nursing saga post where I mention how crazy nursing was for months. For awhile I tried cutting out dairy and soy, which seemed to help out a little bit. In spite of the acne, everything else seemed to be going pretty well, and I trusted that it would eventually clear up, which it did.
It was around 6 weeks that we began noticing a change in diapers. Prior to this point, Anderson's diapers were pretty perfect as far as breastfed babies go. Fairly runny, seedy mustard/gold/yellow diapers. At 6 weeks they began to foam. And the size of his bowel movements was remarkable for how small he still was. He was having 12 soiled diapers, each one was huge. After a moment of consultation with the Eternal Manfriend, we concluded that a few good descriptions are as follows:
-Mustardy whipped cream. Like, literally, half and half that has been whipped and funneled into a diaper.
-If you've ever made caramel, the truly soft-ball stage where it starts to get a little thicker and foamier, without actually hardening. Now make it orange.
It was also during this time he got some bad "eczema". It didn't matter what we put on it (cetaphil, aquaphor, shea butter, coconut oil, lanolin, etc), nothing improved his skin. I took Anderson to the pediatrician (refer to the nursing saga post), and was told that Anderson was just getting too much to eat.
Enter in the complications of milk oversupply, forceful letdown, and lip/tongue tie.
After we worked out the oversupply issues, the diapers and eczema were still a problem. I'd taken the liberty of cutting out dairy and soy for several weeks. By this point in time, end of October/beginning of November, the diapers had gotten pretty runny and foul smelling. They ranged in color from gold/yellow to brownish green and were very slimy/mucousy. Like, blowing your nose when you have a horrendous cold kind of slime (sorry, gross). Pediatrician thought reflux might be a problem (even though very few of his symptoms indicated reflux) and prescribed prevacid, with no noticeable difference. Ped switched us to zantac, and Anderson began spitting up huge quantities. It was also around this time he began displaying more typical symptoms of "reflux", arching or twitching, pulling away during nursing, etc.
We visited the pediatrician again and did a Fecal Occult Blood (fob) test. Even though I couldn't visibly see blood in the diapers, the fob came back positive. The pediatrician shrugged her shoulders and suggested I keep eliminating diary and soy and possibly try Nutramigen, acrazy expensive formula at $500/month. *jaw drops. I mean, who can seriously afford that??? Certainly not us low-income new parents on a tight student budget!
This next section contains a few pictures from this rough time period. We ended up doing some crazy cloth diaper stuff to make sure the runny explosions stayed contained.
All this time I'd been researching infant allergies, spitting issues, diaper issues, "contact dermatitis" issues, lip/tongue tie issues. There is a whole lot of useless information! Happy Healthy Mama posted and included the first truly helpful pictures I saw. She did a follow up post here that talks about how things progressed. I also did a lot of youtube video searches about "reflux", "colic", and decided that those terms are catch-all words that doctors use to nip a problem that they either don't know how to treat, or whose treatment might go against their westernized medical training.
In some of my research I came across frenectomy references. I took a close look at Anderson's mouth and called the ped dentist (see nursing post) for a consult. She confirmed pretty serious lip and tongue ties, and we scheduled a frenectomy for the last week in November. I knew that nursing issues could be exacerbating the allergy issue and wanted to knock out any of the possible problems.Turns out the frenectomy helped a TON with latch/pulling away. As I suspected, it didn't do anything in terms of diapers.
Anderson is now 2.5 months old.
Meanwhile, over the next two or so weeks, Anderson's diapers continued to get worse. By this point they were very green and foul foul foul smelling, and we were having 7-8 BLOWOUTS a day. Also, very runny. Think water with a dark green tinge, occasionally accompanied by sea-foam like specks, or smaller chunks of slime. Also, we frequently saw either specks of blood, or small strings of blood. Spoke with Ped again. Shrugged shoulders again. I pressed and pressed. They finally gave us a referral for a full fecal lab panel. By this point I was so frustrated with our pediatrician that I prepared to switch pediatricians. It was incomprehensible to me that they assumed if he was a good weight that there wasn't much of a problem. In short, they told me I would have to either wait 5 weeks for the records to transfer or pay a $30 fee, since their records aren't digitized (Obama passed a bill a few years back that mandated digitized records), and most of their office staff was on vacation (leaving one receptionist and one billing/records specialist). To keep an intensely emotional week short and simple, I found a new pediatrician with good reviews, let them know the situation so they could contact and request records, then called up the "old" pediatrician and really let loose on them. Within two days the records were transferred. In the meantime, we delivered the appropriate stool samples to the lab at the hospital. These came back negative for various pathogens, but positive for blood cells.
Enter crazy elimination diet phase. Starting at the beginning of October, I kept track of what I was eating and occasionally made notes. After seeing little improvement when I cut dairy and soy (including the hidden/disguised sources!), I decided I needed to start with a blank slate and then slowly reintroduce foods. I wrote down everything I ate from mid-November to February, documented his nap schedule, wet and dirty diapers, nursing length, and any other notable reactions in terms of behavior or physical health. I wanted to have tangible evidence when I went in to see doctors, but also to refer back and pull out correlations between my diet and his reactions. I removed from my diet: corn, beans, soy, dairy, eggs, wheat, nuts, sugar, fish, strawberries, chocolate, citrus, and bananas.
It was awful. But, within about three days I noticed a drastic improvement. Most doctors recommend waiting at least a week if not 2 to make any judgment calls, but Anderson seemed to make a pretty quick statement whether something was good or bad. I introduced black beans and his symptoms manifested again in less than 24 hours. Cut out black beans and symptoms cleared up within 2 days. Corn yielded a similar result. Introduced strawberries and waited a few days, no problem. Dairy for a few days, no problem. Wheat promoted a bad reaction in less than 24 hours. At this time we began talking with a friend (we'll call her friend #1) who'd gone through something similar with her son, who was a few months older than Anderson. This friend happens to be a professor in Garrett's department, and is a member of our church in a neighboring city. Her son had exhibited the same symptoms, but with projectile vomiting. She'd heard from a friend (friend #2, also in the school department) about an allergy acupuncturist in Indiana, where they graduated from. She was skeptical at first, but after discussing it further with friend #2, decided to give it a try. Turns out friend #2 and her hubby had both personally had some severe food allergies that had been eliminated through the treatment. Since friend #1 knows friend #2 pretty well, she felt it was a worthy investment. Friend #1 flew out for 1.5 days, did the treatment with her son, and noticed major improvements within a week. She said within a few weeks they went from 13 blowouts a day to 1 or 2 regular diapers. Crazy spit-up stopped. And nearly 8 months later, the results are still good.
I was nearly going crazy with the elimination diet, even though we were making good progress. Our grocery budget got uncomfortably tight, and we realized that even if I had to keep eliminating things for a few more months, it would put us in a tight position mentally and physically. We figured if the treatment was successful, Anderson wouldn't be so sensitive, and I'd be able to eat more. Additionally, the treatment (we got a groupon and anticipated spending $500-$600) would be cheaper than doing an expensive formula. We called and scheduled an appointment for the second week in December. We drove 13 hours (driving takes so long with a baby!) through the night, did several treatments the first day, stayed the night, did another treatment the next morning, and drove back home. We later found there are two practitioners within 2 hours of us....whomp. BUT, it was nice to go through the same clinic that treated 3 people we personally knew. And it was our first time seeing Indianapolis. It reminds of me a dirty city in Idaho.
As far as details go, we went to allergy solutions of indiana. The specific method of treatment they are certified in is Advanced Allergy Therapeutics (AAT). Tom, the owner, is a registered nurse and is accredited/trained in a gajillion different eastern/oriental medicines. I think what they specifically did with Anderson is muscle testing, or applied kinesiology, but it used a computer and a cuff that monitored his response and sent small charges through his body. (the lady who did the actual testing and treatment is also a registered nurse, ibclc, accupuncturist, etc). She would treat but queing up the specific allergen family in the computer, click on a subcomponent which would signal to the cuff what we were treating, and then would run a little vibrator down his spine. we had five total sessions. The first session was an hour long and we spent the first 30 minutes just assessing. Each following treatment was 30 mins, and we only treat a single group at a time (some treatments can cross treat. Corn and sugar for example, since so many sugars are made from corn). The last treatment also retested sensitivity on everything we treated. His sensitivities were affecting his skin. stomach, large and small intestines. We found the following:
Eggs (chicken)
zinc
levitin
vitamin e
gold vitellogenin
methionine
tryptophan
zeaxanthun
egg cholesterol
ovoglobulin
albumin
xanthophylls
Digestive/Food Enzymes
sucrase
pancreozymin
invertase
pancreatic alpha amylase
somatostatin
cholecystokinin
Corn/Sugar
corn
corn sugar
corn syrup solids
high fructose corn sugar
carotenoids
corn starch white corn
zeaxanthin
subcomponents:
vitamin K
rutin/quercetin
Vitamin B:
B-12 pangamic
B-15
B-2
B-17
para amino venzoic acid
hydrocoalbumin
folate
nitrosides
nicotinic acid
subcomponents:
pangamic acid
riboflavin
nicotinamide
nicotinic acid
pantothenic acid
Wheat/Food Coloring
gliadin
glutenin
gluten
cracked wheat
khorasan wheat
wheat flour
white flour
agglutinin isolectin A
alpha/beta gliadin
prealpha/beta gliadin
HMU glutemine subunits
matable glutenin
subcomponents:
122 azorubine
red 10I'd already discovered the B vitamins (black beans!) and corn, and suspected the wheat. Within a few days his symptoms were gone and I quit eliminating everything altogether. Diapers were improved, the arching and gassiness were gone, he was sleeping better, and his rough/sandy skin was much smoother.
Just to be safe and follow up with Western Medicine, we had an appointment with a pediatric gastroenterologist the following week who said Anderson was a GIANT healthy looking baby. He said if we saw any other problems, to try eliminating dairy and soy again. I'd heard this refrain so many times by that point (and hadn't eaten any dairy or soy for two months), that I rolled my eyes to his face.
HOWEVER, over the christmas break some of his symptoms began cropping up again. Even though I'd quit the elimination diet, I was still documenting everything. Karen had cautioned me that since wheat is such a strong allergen, it's possible that people can continue to develop sensitivities to other components of wheat that they weren't previously sensitive to. She suggested I cut out wheat first, which I did, and noticed some improvement. I decided to do nuts next, since we never tested for nuts and I eat a LOT of them (almond milk, almonds, walnuts, pecans, etc). Within two days the remaining symptoms cleared up. I tested peanut butter awhile ago and he didn't have a problem with it. The weird thing with the wheat, is that if I eat highly refined (boxed cake mix) products, he doesn't have a problem. When I eat heartier breads, he shows signs within a day. I feel it's important to note that Anderson does not have much of a negative response to dairy or soy, and probably hasn't since he was just a few weeks old.
So, six months, three hours writing this post, and a happy, healthy, clear-skinned, normal diapered boy later, I feel confident that wheat and tree nuts are out of the picture for the next while. Eliminating them is obnoxious, but isn't a catastrophe, diet wise. The hard thing with allergies is that they can come and go as Anderson continues to develop and mature. We will probably do another few treatments when Garrett is done with his Ph.D, and have a little more wiggle room financially, but are okay with where we are at now. We've started introducing Anderson to solids and have yet to see any reactions, even to fish, eggs, peanut butter, strawberries, etc.
I could go into a long tirade about our food industry and health care system, but will keep it short by expressing how difficult it is to truly find out what goes into our food and how it's grown and treated. There are so many words to disguise an ingredient or process, and new labels are marketed all the time in an effort to stay ahead of consumers. It's also been really frustrating to find a supportive and open minded doctor. We try to make clean-eating our lifestyle, and even being mindful of what we consume, I was shocked to discover just how much our food is processed and how euphemistic labels can be.
I hope we'll be at a point financially and geographically with baby number two, where we can better track where our food comes from, and what it's been exposed to.
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