Terrible, Wonderful News

First a little background: Jman, of course, has autism, and he happens to be one of those kids who does much better on a gluten-free/casein-free diet. (Gluten is a protein found in wheat, rye, and barley (and oats unless they are listed as specifically gluten free). Gluten is what makes baked bread hold together, giving it a sort of spongy texture. Casein is the protein found in milk, as opposed to lactose which is a sugar found in milk. Jman has been “gfcf” since he was almost 3 years old. Several years ago, we tried (HE tried) reintroducing gluten back into his diet (he began making and eating peanut butter sandwiches) and after a few weeks had noticeable changes in his bathroom habits and abilities. And so he became gluten free again, and will likely stay that way forever. We didn’t even try adding cow’s milk back in--he’s always responded more dramatically to cow’s milk than gluten. So Jman is gfcf, and will be staying that way.

And a couple years ago we had SB3. When SB3 was about 2 months old, Habeeb and I noticed that he had those perpetually rosy red cheeks along with a somewhat stuffy nose, and we knew what that meant, because we’d seen it in Jman: SB3 was also sensitive to cow’s milk. And so, since SB3 was exclusively nursing, I became casein/dairy free. Those rosy cheeks quickly cleared up, along with the congestion, and SB3 was hunky dorey, unless I “cheated” and had something with dairy/milk in it, in which case the rosy cheeks and stuffy nose returned for a day or two. However, SB3 was always “all there” developmentally, and still is. There isn’t an autistic bone in that boy’s body! I have always wondered, though, what might have happened had we given SB3 his initial vaccinations before we figured out that his immune system was already busy fighting a milk allergy/sensitivity. Perhaps the shots would have been the “something” that overtaxed his system and pushed SB3 over the edge into the world of autism. However, he did NOT get those shots (on purpose), and we DID figure out his milk issues, and SB3 is just fine (and still shot free, thank you very much).

And then a couple of months ago we had Iago, also exclusively breastfed. Iago didn’t have the rosy cheeks going, or a terribly stuffy nose. But boy does that girl spew! She clearly has had some reflux issues from the beginning, even in the hospital before we came home. She would spew curdled milk, even through her nose, even choking on it more than once. Not pretty, for such a pretty little girl. So, that was general observation #1: Super spewy girl, beyond the norm (aka, “reflux.”)

When Iago came home, her bilirubin numbers were kind of high, and her weight was kind of low (maybe all that spewing!). So, we took her in several times to check both numbers (bilirubin and weight) to keep an eye on her jaundice and to make sure she was growing sufficiently. It took her three weeks to get back to birthweight, but less time to get her bili numbers and jaundice under control (sunbathing can be a good thing!). During this whole process, the doc/nurse kept asking how many wet and how many poopy diapers she had in a day (enough), and kept asking if she had transitioned to ‘yellow curdy’ poop yet: Well, no, she hadn’t. It wasn’t meconium anymore, but it wasn’t proper yellow curdy breastfed baby poop either. But after a weekend of mom-inflicted “booby boot camp” her numbers were good, even though her poop still wasn’t yellow curdy, so the folks at medical quit worrying.

I have to throw in another side story here. During this whole ordeal, the doc kept telling me to supplement with formula to make sure Iago was getting enough to eat. But I knew that was NOT the answer. There was nothing going on that “corn syrup solids and cow’s milk” was going to help with. My milk supply was fine. Iago just needed some “booby boot camp” over a weekend to learn how to nurse more effectively. Yes, sometimes babies need to be taught how to nurse! Anyway, after that weekend, she starting putting on weight at the typical rate (1 oz per day), and has been doing okay since. Supplementing MAY be truly necessary in some cases, but it’s my opinion that “the establishment” is MUCH too quick to suggest and encourage and almost “prescribe” formula rather than supporting the mom and baby in establishing good breastfeeding. Moms, don’t get intimidated by the docs. You know at least as much as they do, and maybe a whole lot more. Just because they don’t think so doesn’t mean a thing! And if you want to breastfeed, do all you can to NOT supplement. Your breastmilk is SO much better for the baby than dehydrated liquid extracted from some animal of another species, reconstituted with corn syrup solids and a limited mix of nutrients, and nothing for the immune system. Ack--kind of gross when you think about it, and clearly deficient. Plus, there’s all that bonding that goes with breastfeeding that doesn’t compare to sucking corn syrup from a tube of plastic. Again, if you HAVE to supplement, go for it, but consider whether you REALLY have to. In this case, we totally did NOT have to, and yet kept getting pressure to do so. Even though I was balking at “cow’s milk” given my other kid’s issues with cow’s milk. Docs just don’t always THINK or LISTEN. Be strong!

So, back to the main story: A few more weeks pass, and Iago was continuing to nurse well and to grow (despite the lack of cow’s milk and corn syrup! ha!). But she still hadn’t developed that nice yellow curdy breastfed baby poop. Instead, she was pooping stuff that looked more like dark honey or maple syrup, slimy and mucusy, with some very small seedy looking things mixed in a bit. Mostly it was just dark mucusy nastiness. This was not right. Thanks to Jman and his gut issues, I know poop (unfortunately), and take it fairly seriously, especially for a little one, and this was not pretty poop.

To make matters worse, Iago was very disconnected. By 6 weeks, Habeeb and I had no doubts that SB3 was just fine, no autism at all, but not so with Iago. I had to work so hard to get her attention, and so hard to keep her attention. Instead of being all smiles, she just looked past me, over my shoulder, or through me. She wasn’t “there.”

Yes, she was only 6 weeks old, and no one diagnoses autism at 6 weeks old, but I was NOT liking what I was seeing: Disconnected socially, nasty baby poop, awful spews, plus an autistic brother. It was time to take some action.

Instead of waiting for her 2 month check up, I took Iago in on her 6 week birthday to at least get my concerns documented in her medical record. Doc humored me and ordered several stool labs. It took about 2 weeks to manage to get the stool samples collected, due in part to weekends (lab closed) and due in part to her stools being simply hard to collect (even good brand new baby poops are often more frequent and smaller in quantity, and add mucusy to that and you can imagine the fun and challenge!). But I got it done--5 labs worth of samples--and waited for the results.

Actually, I didn’t just wait for the results. I also called that very afternoon (a Friday) a doctor with a huge clue: Jman’s old DAN! doctor from Florida (DAN! is “Defeat Autism Now!”). Jman hadn’t been to see her in three years (since we moved away on short notice), but I left our info, including that Jman was a previous patient, and my concerns about Iago, and that she was just 6 weeks old, and hoped and prayed that we’d get in a lot sooner that the three year wait list. Docs don’t often have the chance to fix the problems that soon (6 weeks old is soon!), before the small problems become big ones. Sure enough, I got a call back on Monday scheduling Iago for a phone consult on Wednesday. God is good! So I filled out the long new patient intake form and looked forward to Wednesday.

Here’s another side story about how God is good: I was stupid and missed the Wednesday phone consult! I forgot about the time zone difference and called an hour too late! I was SO upset! But I called and left a message, and I emailed as well, and then I just sat and cried and yelled at myself for being stupid. But after a few minutes, I checked email again, and they had already replied back saying “Call now!” I did, and the Doc was available and we had a great phone consult. And I will NEVER screw up time zones and phone consults again! God is good!

By the time I spoke to the DAN! doc, I had already gone completely casein (milk/dairy) free again. (I had been able to ‘cheat’ some and not have it bother SB3 too badly, but now I stopped the cheating to see it that would help Iago). Doc said to also go gluten free. Casein and gluten are two of the most ‘inflammatory’ proteins molecules, and the mucusy poop meant there was intestinal inflammation. Going gfcf all the way was important. Thus, I became gluten free as well. Also, I had been on antibiotics after the delivery and during week 2 at home, which meant Iago had been on antibiotics too through nursing, and during the time when her poop should have been transitioning over to that lovely yellow curdy breastfed baby poop, which it of course never did. Thus, both Iago and I went on probiotics to establish good gut flora, which is also an important component to a good immune system, which would help with fighting the inflammation also. I had already picked up from the local health food store the probiotic specifically for infants (yes, there’s particular strain that predominates in infants, and the gut flora changes as we age and develop--I got her the special infant strain). Lastly, the doc put ME on high doses of Vitamin D3, which also helps the immune system (and bunches of other things too). Thus the plan: gfcf, probiotics, D3, call back in two weeks.

Another side story: Just before calling the DAN! doc, I tried a new gf bread I noticed in the freezer section: Udi’s gf white sandwich bread. It was the best gf bread I’d ever had. When talking to the DAN! doc, she recommended Udi’s to me as well. And the best thing was that shortly after that, the kids and I went to Jason’s Deli, only to discover that they now offered gluten free bread as an option, and it was Udi’s! But it was the whole grain Udi’s, which is even better than the white bread! AND they sold it by the loaf at Jason’s too, and it was bigger loaves with bigger slices (gf bread is usually small with small slices, because it lacks that gluten that makes it spongy and holds it together). So, Yea! We can eat gfcf at Jason’s Deli!!!!! (and buy Udi’s to make sandwiches at home!). God is good!

So, the two weeks were passing, during which time I was gfcf (and enjoying Udi’s bread!), starting the probiotics, starting the D3 when it arrived, and waiting. During this waiting time, the ladies at church threw Iago a baby shower, which was wonderful!

The following Sunday I hadn’t seen much change, so I spoke to S., the pastor’s wife, asking her to pray for Iago while we were away in Virginia. She not only said she would, but she took us back in the sanctuary after the service and fellowship lunch and held and prayed for Iago then and there. She prayed for healing and against generational curses, and for Iago’s future, that she comes to know the Lord early. By the time she was done praying, Iago was smiling the biggest most beautiful smiles at her! She was “all there!” She was smiling at S., and at some little girls who came in--just totally all there! Habeeb came in during this time of smiles and connecting, and knew it was special too. I have no doubts that God healed Iago there of autism spectrummy stuff, and about a week later, Habeeb made a similar comment. Iago has been “with” us since that afternoon, thanks be to God! God really IS good!

After that Iago’s poops also began to improve. They finally turned yellow, and developed curds, and the slimy mucus is 99% gone (baby poop is usually still somewhat “runny”). It appears Iago’s gut was doing much better since the prayer as well! Now, at 10 weeks old, Iago has beautiful poop, unless I eat something blatantly not gfcf (Fuddrucker’s hamburgers or BW3’s hot wings, for example). When I cheat, she is especially spewy again and the slime returns for a day or two.

Last Friday I received a phone call from the base doctor, who had ordered the stool labs. She had some news I found especially fascinating, although the doc didn’t seem to think much of it. Iago’s labs had all come back negative (no problems found) except for one. That one lab indicated Iago had undigested carbs in her poop. The doc didn’t seem terribly struck by that, but I was! I knew that Iago’s poop was better since I went gfcf. Gluten is the part of wheat, rye, and barley (all carbs!) that many folks can’t digest, and which can then cause a whole host of major health and gut issues. Iago must be one of those people! When I was eating gluten, she was too since she nurses, and the gluten wasn’t digesting and was messing up her gut, causing inflammation, which causes the slime and mucus she was pooping. After I went gfcf, her poops changed from slimy, mucusy, dark snotty nastiness to that yellow, curdy, cottage cheesy poop breastfed babies are supposed to have. Yea!

The question still remains: Is Iago a true “celiac” (gluten intolerant) or is this something she will “outgrow?” To get an official celiac diagnosis, you have to do an intestinal biopsy to confirm the intestinal damage caused by gluten, which also means you need to be consuming gluten (and thus damaging your intestines) at the time the biopsy is take. And we’re not going there. Why do intentional damage to undergo an invasive procedure to confirm what we already know, that Iago and gluten do NOT mix? Besides, I already have Jman gfcf, and SB3 is cf, so it’s not like this is anything terribly new to us! It’s just that now Iago is gfcf, too, and therefore I am also gfcf, at least for as long as she’s still nursing.

So, I have terrible wonderful news: Iago is likely a Silly Yak! That’s terrible in that it’s a bit of a pain, especially trying to eat out or at pot lucks and pizza parties. It’s wonderful in that we figured this out SO early! It’s terrible in that we figured it out so early because of all of out experience with Jman (meaning I wish Jman never had these problems). It’s wonderful in that maybe the base pediatrician will learn something that will help some other kid/family (that would be VERY wonderful!). It’s terrible in that I have to be gfcf too now, but it’s wonderful in that we continue to find some FABULOUS gfcf products (we had the BEST gfcf pancakes EVER the other day--using a new gfcf Bisquick mix, of all things! yummy!!). And most wonderful of all was watching little Iago turn on and light up as the pastor’s wife was holding her and praying for her. God is good, all the time! And that is the most wonderfulest news of all!