The Allergy Saga

This post has been so long in coming. Partly because we are still working through the dregs of it, a big part because it was so stressful and I felt so overwhelmed and like I wasn't being taken seriously, and partly because there are so many aspects to it. Every time I've considered taking the time to write everything down, I felt re-overwhelmed :)

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 10
I'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.  

The Nursing Saga

This post has been a long (long long long long) time in the works. Now that we've progressed through most of the frustrations, I find that I am more inclined to actually document the experience even though the lapsed time has allowed the passions and frustrations to fade. As with many of the pregnancy/post partum posts, this will be very open and frank about my experience. In other words, it may be a little too much information for some of the readers :)

To start with, I am a huge advocate of breastfeeding. I think the benefits to mother and child are great and the breastfeeding relationship should be continued as long as is possible and appropriate. That said, breastfeeding can be hard! I knew that before having Anderson, but the intricacies of the challenges were surprising to me. Additionally, many of our challenges are a little more unusual (serious oversupply and let down, food protein sensitivities) so it was harder to find information and support. I did find KellyMom, an online nursing support platform, to be the most helpful resource.

Anderson latched on without a problem less than 30 minutes after delivery. And then he slept for hours and hours and hours, not even wanting to wake to feed. The nursing staff (at the hospital of course) was a little anxious about this, but I wish I hadn't worried so much. He was a very healthy weight and had no complications. When we got home he wanted to feed and feed and feed. He still had a great latch, but he was sucking so hard he gave me blisters. I honestly have no idea if this caused my oversupply. He was born on Thursday and my milk came in with a vengeance on Saturday. Milk typically comes in 3-5 days post-partum. I prepared lactation cookies to snack on during feedings which may have also contributed to oversupply. Any way, I had SO MUCH MILK. MILK EVERYWHERE. And apparently a little curse called a forceful letdown. In short, I had a ton of milk that came out really hard and fast. Which is hard for little Anderson to handle.

I was worried about plugged ducts and mastitis, and felt all the advice I was getting wasn't very helpful. I understand now that advice just never seems helpful when you have unique problems. It seemed that if I manually massaged the plugged ducts to break them up, it increased my supply. Taking warm shower increased my supply. Eating oatmeal and flax increased my supply. etc etc etc.

My breasts were so swollen and painful that I ended up pumping a little off the top each day. Yes, pumping can increase supply, but I started with a massive supply and figured I'd rather deal with continued oversupply than mastitis.

After a couple of weeks I was pumping around 30 ounces a day in addition to feeding Anderson. This wasn't too bad for awhile; it allowed us to build up a freezer supply of milk and I was still recovering from delivery. However, around a month and a half it started to get old. I'd get so swollen in between pumping and feedings! I gradually dropped two pumpings and then quit cold turkey. At that point Anderson was 15 lbs and was having some crazy diapers (another post on food sensitivities is coming eventually). One of the lactation consultants/nurses at the pediatrician's office thought his diapers were caused by oversupply/feeding. Basically, he was eating a Thanksgiving meal every feed. Quitting pumping cold turkey was a little uncomfortable for a few days, but not anywhere as painful as the engorgement during the first few weeks of nursing.

Up until this point Anderson had continued to latch on beautifully (with the exception of when milk was spraying everywhere. Think lactating fountains of Italy, I kid you not. Milk spraying feet in all directions. Out of control). However, as my supply began to regulate, Anderson had more and more difficulty latching and feeding. I did tons of research and decided tongue and lip tie were likely the culprits. The pediatrician's office ascribed his issues (pulling off, diapers, arching back, discomfort, etc to reflux). So, I took Anderson in to a pediatric dentist who had a lot of experience and has performed many frenectomies. I explained what I suspected and asked her to take a look. I had previously spent HOURS researching the different methods of frenectomies and how to properly diagnose them, and had a long list of questions for the pediatrician to "test" her knowledge and experience. I was quite pleased when she answered all of the questions I had without my even asking them. When she examined Anderson, she did so properly (unlike the pediatrician!), with Anderson on my knees, feet pointed toward my stomach, and dentist at his head, looking into his mouth. She said he had a thick tongue tie as well as lip tie, and that it could definitely be affecting his nursing. *sidenote: my pediatrician said he only had a small lip tie and she can usually "snip them quickly" in the office. GAAAHHHH!!!!!

We scheduled the frenectomy for a few weeks later so the dentist could use the newer laser she was waiting on. It was a fairly quick procedure and took about a week to heal. Anderson can now keep a pacifier in, though he doesn't love them. One downside of the frenectomy is I think he developed an oral aversion at first. He didn't want anything going in his mouth. We've worked on making "mouth time" a pleasant experience for him since then, and now he loves putting everything in his mouth. Except he doesn't like sucking on pacifiers.

He is now 4.5 months old and I finally feel like nursing is the peaceful bonding time it has the potential to be. I am no longer engorged beyond belief (I'm now down to a 28J size, instead of a 32H/I and it is SO HARD to find a store that sells that size!!!! Fail Motherhood Maternity, Fail.), and while I still have a forceful letdown, it doesn't last for several minutes. Anderson is still easily distracted during feedings, but we've managed to find ways to alleviate this problem (nursing in darker rooms, waiting until he's really hungry, using a nursing cover, having a noise machine going).

AND, now that we've addressed most of his food sensitivities, things are a lot better with his diapers. For awhile it seemed like he was feeding just so he could fill a diaper. He would feed then bite down (even baby gums still hurt!) and pull as he strained his body. It was not a fun experience for anyone involved, and I remember many nursing sessions where he was hungry and crying and straining to have a bowel movement, and I was spraying milk everywhere and crying and feeling inadequate.

*sigh.

I think ultimately there were several factors that played into our struggles: oversupply and forceful letdown, food allergies and crazy bowel movements, frenectomy and latching, and time and Anderson's physiological capacity to take in larger quantities of milk.

One of the most frustrating aspects was the lack of concern from my pediatrician's office. Anderson was having 8 blowouts of mucousy green grossness a day, nursing was a struggle, and he was clearly uncomfortable. BUT he was in the 95th percentile for weight and height, so he clearly wasn't failing to thrive. His doctor seemed to assume that since he was a healthy weight, things were just fine. The thing is, I have a really high fat content in my milk, and even though he only nurses 10 minutes (max!), the forceful let down increases his intake in a short amount of time. Again, I'll write a post about his food allergies later.

BUT. We've fired the pediatrian, found a new one, addressed the bulk of his sensitivities, and given everything time. Additionally, we are not giving Anderson any reflux meds. WIN! And nursing is a bonding experience, WIN! Anderson now takes time to occasionally unlatch and just sit and smile or chatter at me before resuming feeding. And he is happy and healthy, WIN WIN WIN.

As far as supply challenges, every mother has such an individual experience. I can't imagine being in the place of a mother who struggles with undersupply and the anxiety of not being able to provide enough milk for her baby. Or struggling with inverted nipples and latch and having to use a nipple shield. But I can totally commiserate with mothers who choke their babies with too much milk, flooding their little mouths with greater quantities of food than they can handle. I understand the pain associated with plugged ducts and the worry of mastitis (though I managed to avoid that malady!). I will say, oversupply is a fairly uncommon condition and it's really hard to find helpful information. I finally did something called "block feeding", where I'd feed only from one side for a few hours, then switch to the other side. I can't pump or else my glands will kick into high gear again. And going out takes some planning. Even though we still have a massive freezer supply of milk, I have to nurse Anderson or else I'll become engorged again. I also have to be careful of what I eat- high carb foods seem to increase my supply to uncomfortable levels. I've had a cold the past week and have taken pseudoephedrine and phenylephrine without a dip in supply. I shower with a peppermint shower gel without a dip in supply. Three hundred years ago I would have been the wetnurse and fed village after village!!!

And lastly, Garrett has been amazing and supportive and wonderful through all of the nursing adventures. It's been a little hard for both of us since he can't feed Anderson the way I need too, but he's been with us every step of the way, and has done so much research to understand and get ideas to troubleshoot. Garrett also took middle of the night diaper duty after we weaned Anderson from middle of the night feedings. And to clarify, Garrett took diaper duty after I would feed Anderson each time, but also continued diaper duty after weaning. Fortunately we've gotten into a feeding routine that has mostly weaned Anderson from middle of the night soiled diapers. Garrett is a companion and parent, not just a helper and supporter. And I love him so much!

Welp. This turned into a novel. All this said, I'm going to go smooch Garrett and check Anderson's diaper :)