I have been trying hard to decide where to start with this story. Technically, CSID has been a part of our lives since the days Sam and I were born.....but it's not like we (or our families) knew we carried the genes for CSID back then. Also, this story could technically start in November of 2010 when we found out Jayson was joining our family.....but once again we didn't have a clue that anything was wrong with our precious little guy. So I believe I will start on July 26th, 2011.
July 26th was the day Jayson came into this world, and for the first few days of his life everything seemed pretty normal with his health. The only real trouble we had was getting him to breastfeed, and hence he was getting really dehydrated. So, for a few weeks after his birth, he was partly breastfed and partly formula fed--we used Similac Advance (the stuff in the blue top can that is the standard to start a formula fed baby on).
At Jayson's two week appointment, we expressed our concern that he was acting extremely colicky; we were fairly exhausted from being up at least half the night (and day) with a screaming, gassy, spit-uppy baby. Knowing everything I do about Jayson now, I believe that he was having such discomfort from the lactose in his formula (we still have to give him lactose free milk 20 months down the road). His pediatrician at the time suggested trying Enfamil Nutramigen, which was a formula designed especially for babies who have an allergy to cow's milk protein. He also said that to see if switching formulas did the trick, I would need to stop breastfeeding and exclusively formula feed. Looking back, I don't think I really agree with his advice, but I was sick of pumping by that point anyway and was excited for an excuse to get out of it. We were sent on our way with a few sample cans and told that we would most likely see improvement within 72 hours if this was Jayson's problem.
Within two days Jayson's colic had calmed down, and he seemed to be a little bit happier. However, we had a new issue: horrible watery diarrhea in every diaper. Not ever having had any other babies, we just assumed that this was a not-so-fun side effect of Nutramigen and that we had to live with it. We never could go anywhere without a large stash of diapers (we had to change him every two hours) and several outfits (at least 50% of the time the diarrhea was explosive enough to go out the diaper and onto his clothing). We even tried changing from Luvs to Pampers, but quickly switched back because it didn't make much of a difference and we couldn't afford expensive diapers at the rate he was burning through them! My sister, who had five children, insisted that this wasn't normal and that we should try a different formula. We switched to Similac Alimentum, which is the same thing as the Enfamil Nutramigen, hoping that maybe the brand just didn't agree with Jayson. No such luck--it was actually harder on Jayson for whatever reason--so it was back to the Nutramigen. We didn't know what else to turn to (where do you go when the most expensive/hypoallergenic formula isn't cutting it?) and Jayson was certainly thriving in terms of weight, so we just stuck it out and dealt with the mess.
On Thanksgiving, Jayson's 4 month "birthday", we decided to give him a little feast: bananas mixed with rice cereal for his first food. Boy did he like it! And boy did he have even crazier diarrhea after that! I recall my sister saying that bananas should have constipated him, but we vehemently argued that she must have been wrong because it certainly did NOT for Jayson. It even gave him a huge bloated tummy that we couldn't ever seem to get rid of (and still have struggles with when he doesn't eat well). However, it didn't seem to really bother him, so once again we just dealt with the annoyances on our end.
By the time he was 6 months old Jayson was eating pretty much all of the varieties of baby food available and loving them. We decided that maybe we could see if his digestive system had matured enough to step down to Similac Sensitive formula. We had just moved, and Jayson's new pediatrician agreed that it would be worth a shot, and nicer on our wallet. Thankfully, Jayson seemed to tolerate the formula just fine, but the crazy diarrhea and acid reflux he had did not lessen one bit.
Jayson also began attending daycare at this point, since Sam had a full time job and I was doing an internship during the day. We sent Jayson in a clean outfit (along with two spares in the diaper bag), and 2-3 out of 5 days a week he STILL came home in daycare clothing. We never went more than two days without doing laundry, due to the amount of clothes Jayson went through--and the awful stink of diarrhea clothing in the hamper! I remember that there was one day Jayson came home in the same outfit we had sent him in, and I was almost jumping for joy with excitement. However, days like those were certainly short lived. By the time he was 8 months old he had moved on to stage 3 baby foods, and somehow had even worse diarrhea/blowouts. Right before his 9 month well child appointment, our daycare gave us a letter explaining how concerned they were about Jayson and that maybe we should try cutting fruits out of his diet to see if that might improve some of the diarrhea. I was horrified about him not getting the nutrition he needed from fruits (yes, you can laugh at the irony) and told Sam that we HAD to talk with the pediatrician to see if he could help us get Jayson's problem under control. Sam wasn't quite so urgent about the issue until the Sunday that Jayson pooped liquid diarrhea up and out of his diaper, ALL over the floor at church--it was humiliating and utterly disgusting for both of us.
When I went and bitterly complained to the pediatrician however, he didn't seem all that concerned (which really frosts my cookies thinking back about it). His only suggestion was to try switching formulas--back to the Similac Advance--in the hopes that the Similac Sensitive was causing the problem, and that Jayson would have grown out of the lactose sensitivity. I almost cried when he left the room because I felt like no doctor was ever going to take my concerns seriously. But seeing as he was the doctor, and I was desperate to try anything that might make a change, we switched formulas yet again. Almost overnight, Jayson's diarrhea let up a LOT. He still wasn't normal by any means, but it was better than things had been for months. I thought we had figured out the problem, and for the next three months or so, the only issue that really nagged me was Jayson's bad acid reflux.
At 1 year, we made the switch from formula to Vitamin D cow's milk. Jayson LOVED milk and we had no real trouble getting him to drink it. However, he never suffered from the constipation that most kids do when changing from formula to milk, which I found somewhat odd. He also was eating most of the starchy table foods with us by that point which probably didn't help him out either. After a few months of eating like this, I noticed a strange pattern. I would give Jayson a sippy cup of milk and then have to change his diaper within 10 minutes of him drinking it, pretty much without fail. At this point Jayson was having at least 4 bowel movements a day that were more diarrhea like than not--which I just couldn't fathom as being normal for his age. His acid reflux had progressed to being more like small amounts of chunky throw up about once a day.
We had moved from Idaho back to Utah not too long after he turned 1, so I had to find Jayson a new pediatrician for his 15 month appointment. I chose an office that was located in the hospital where I had just got employed at, in the hopes that it would be close and convenient for us. Little did I know that I had just done the biggest favor for Jayson's health that we could ever have done.
At Jayson's 15 month appointment, I had two complaints for the doctor. His acid reflux was still strongly present at his current age, and he had what seemed to be year round allergies. I expected to be brushed off, but instead was pleasantly surprised when the doctor referred Jayson to both a pediatric GI specialist and a pediatric ENT. Jayson's ENT appointment was first, and they decided he needed to have surgery to remove his tonsils and adenoids. Sam had to take Jayson to the GI doctor because I had work on the only day they could fit us in for months. The doctor ordered a stool culture and clostridium difficile analysis (which came back entirely normal, as I expected), and blood food allergen test. 250 dollars later, we were reassured that Jayson was not allergic to any of the 16 foods that they tested for. I have to admit, I was a little confused and frustrated at the results, because I was just SURE that he was allergic to milk or something else in his diet.
Upon getting these results the doctor recommended that we give Jayson less water to drink during the day, and try an antibiotic that might wash out harmful bacteria in his gut. I was frustrated with this doctor I had never met because I didn't think he was taking us too seriously. Jayson wasn't drinking THAT much water, and when I went to fill his prescription at a compounding pharmacy, they asked if our doctor suspected that Jayson had giardia or some other kind of intestinal parasite. I was pretty sure that was not the problem. Our GI doctor said we could do an endoscopy and tissue analysis if we wanted to further pursue Jayson's problems. I said yes, and we scheduled Jayson's endoscopy/biopsy at the same time we had his tonsil/adenoid removal scheduled for: January 3, 2013.
I almost backed out of Jayson's endoscopy several times. I felt like it was just going to be one more diagnostic test that was a waste of our time and money. Every time I was about ready to call and cancel the procedure, Sam talked me out of it (thank goodness), reminding me that Jayson already needed to have surgery and it was the best time to make sure he was okay. I nearly about chickened out again on his surgery date; I was a giant bundle of nerves and hypoglycemia. Jayson wasn't allowed to eat the day of his surgery and it wasn't until 2 pm--somehow I never managed to sneak away and feed myself before his surgery, and I was 34 weeks pregnant. I don't recommend that combination. But, we went through with the endoscopy anyway, and it turned out to be the much easier part of his surgery. The GI doctor who performed the endoscopy told us that Jayson's stomach and small intestine looked just fine, and that we should have the biopsy results within a week or so. I was grateful that there weren't any apparent issues like intestinal cancer, but disappointed that there still wasn't an obvious/straightforward answer.
Fast forward almost a week. Jayson was finally starting to recover from his tonsil/adenoid removal enough to go play with his cousins, freeing me to think about what I needed to get done. I was thinking about giving the GI clinic a call and seeing if Jayson's biopsy results had come back yet, when they actually called me. At first the guy on the phone told me that they had Jayson's results back, and "these things" seemed pretty normal. At that point I almost tuned him out because I felt a huge wave of disappointment wash over me. I had reached the breaking point and it was time to give up, and just accept that Jayson was always going to have weird diarrhea, and that's who he was. Luckily I didn't hang up or anything, because then I heard the guy say that Jayson couldn't digest sucrose or isomaltose and had CSID. He made it sound so simple: just cut out the problem foods from his diet and he wouldn't have any symptoms. I recall feeling overjoyed at the diagnosis for a few hours. Then when Sam came home I told him, and being the smart food scientist he was, turned rather pale. He explained just what we would have to cut out of Jayson's diet (pretty much EVERYTHING by the way) and things sunk in.
Things really added up though with Jayson's diagnosis of CSID. We did some research into ingredients in the various formulas he had been on, and it turned out the only formula without sucrose as a component is Similac Advance, the very first formula he had. If Jayson hadn't been sensitive to lactose, and we had remained on just that, we probably wouldn't have seen his symptoms appear until we had started feeding him baby food. Of course, we gave him plenty of fruits when he ate baby food, which didn't help the diarrhea either. Count in the fact that we mixed them with baby cereals a lot (aka starch city) and you get the bloating too. I'm sure he had such bad acid reflux because of the gasses leaving little room in his stomach for all the food he ate, and there was nowhere really to go but up. However, it was a miracle that Jayson stayed as healthy as he did the first 18 months of his life--many CSID babies have poor weight gain and growth because dehydrate and don't metabolize their food at all.
We tried removing sucrose and starch from Jayson's diet the best we could, until we met with a dietician the following week to try and learn more about CSID. Meeting with her was fantastic, and she still continues to be one of our greatest resources. I believe that it is so critical for people with CSID to meet with someone who can guide you in the correct direction for dietary needs, because it is super tricky to figure out what is okay and what isn't! Needless to say, after that appointment we removed even more foods from his diet (it always seems there is "one more thing" that we figure out Jayson can't eat). We have seen great improvement in his diarrhea/bloating when he sticks to the "CSID approved foods" diet, and we can totally tell when he sneaks something with sugar off the floor or has too much breading (often from his beloved fish sticks).
However, this is not the end of our CSID story. About two weeks after Jayson was diagnosed, his little brother Maxwell was born. We had great fears about Max having CSID, and often laid awake in bed at night discussing the pros and cons of having two children with CSID. Breastfeeding was not terribly successful because Max was extremely tongue-tied, and the problem wasn't entirely remedied until his 2 week checkup. Plus I found pumping to be more of a challenge than I wanted to take on with a toddler demanding my attention, so ultimately we decided to put Max on the Similac Advance formula. At first he did just fine on the Similac Advance formula, but then slowly the occasional diarrhea diaper crept in. Then after three weeks, the lactose sensitivity began. I decided that Max needed to try the Similac Sensitive formula: if he didn't have CSID it could really benefit his colicky symptoms, and if he did we would find out right then and there. You can probably guess the result of our little trial: lots of awful diarrhea. He is going to be seen in the GI clinic come May, and will probably have an endoscopy done not too long after that to obtain his enzyme levels.
So here I stand, mother to two little boys with CSID. It is certainly not an easy road to travel, and there are definitely days when I want to just give in and let Jayson have whatever it is he wants so badly at the moment. There are definitely days where I cry about how tricky it is to make Jayson friendly dinners when both Sam and I work full time and don't want to cook at night. And there are certainly moments that I feel awful for Max as he has bad gas pains from the lactose, but I don't have any other formula choice that is healthy for him. Perhaps one day there will be a real cure for CSID and this whole mess will just seem like a bad dream--but until then I think we will all just try to enjoy eating the things we can :]
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