Last Thursday night was NOT a good night for us. Jayson was up crying practically every hour of the night until 3 am, even when I tried putting him in bed with us (which I NEVER do, and was reminded why when I kept getting kicked and bashed in the head). Tylenol wasn't cutting the pain, which made me think teething wasn't the issue. Ibuprofen finally kept him quiet after 3 am, but of course I had to roll out of bed at 5:20 to be at work by 6:30 am. That was pretty awful too. Sam decided to take the day off and get Jayson into the pediatrician. I was suspicious he had picked up an ear infection from his almost three year old cousin, and indeed I was right. Bring on the antibiotics!
Antibiotics wouldn't be a problem for pretty much any other kid, but throw CSID in the mix and you've got an issue. Every children's antibiotic suspension in existance has sucrose in it. When Jayson went through his "serial ear infection because I'm in daycare" phase from about 6-12 months old, we had so many rounds of antibiotics, which brought on even worse diarrhea than usual and terrible diaper rash. I know antibiotics can do that to any kid, but this was exceptionally bad. I'm conviced that they were less effective too, because they ran through him with remarkable speed, and often the infection took multiple rounds of antibiotics to be cured.
The last time Jayson was on antibiotics was in February, not too long after his CSID diagnosis. After talking to one of the pediatric doctors at our practice, my local Smith's pharmacy told me the only thing we could do was: either have Jayson take the sugared up antibiotic and deal with it, or not treat for the potential sinus infection he had. After three days of trying to cope with the side effects of the antibiotics we decided it wasn't worth the hassle, and stopped giving them to him. Risky I know, but the darn thing turned out to be viral anyway (I'm still not really over it, but that's a different story). Luckily we saw a different doctor in the practice this time, and she prescribed adult capsules of amoxicillin that we could cut open and sprinkle in food/drink. We've been putting it in his milk sippy cups twice a day (he never fails to empty them), and thankfully he (and his body) can't tell the difference. Plus he's been a much happier kid and sleeps through the night again, phew :] One other option was to get antibiotic shots, but I thought it would kind of be a pain to have to visit the doctor three days in a row--but at least that would be a choice if necessary too.
On Saturday we went and visited the animal farm down in Thanksgiving Point--it was Sam's niece's second birthday, and my mother-in-law was also visiting from New Jersey. Jayson had a pretty good time, except he did NOT want to ride the little ponies at all. Max on the other hand wanted to eat and stay inside just about the entire 1 1/2 we were there. Apparently he is not a fan of farm life lol. They had a sign on the animal pens that said "Please do not feed me, I am on a special diet". I seriously wanted to get one for our house, because it sure reminds me of us!! Our only sad moment was when everyone else went to go get ice cream after the animal farm, and it was probably only sad for me. We didn't go because I figured it would make Jayson mad that he couldn't eat any when everyone else was--but at least he's not old enough yet to know what he missed out on, right?
Yesterday we started Max on Ross Carbohydrate Formula. It's soy based, so I'm hoping to see his lactose sensitivity issues fade away--he already seemed a bit less bloated this morning, which is good news. We are adding dextrose powder in for the carbohydrate, and it doesn't seem to give him any issues (I was only worried because it was some that Sam picked up from his work; he claimed it was 99.8 percent pure dextrose but I was still wary/cautious). Of course, Max's tummy will be the ultimate guide as to what is ok, but so far so good. It's not so great on the wallet however, and very inconvenient to run out of (I ordered it online though Abbott Nutritionals as a standing order). Incovenient and/or expensive really goes hand in hand with CSID though, so I shouldn't be surprised at all by this point.
I haven't forgotten what I said in my last post about writing my more encouraging thoughts on CSID, but I've got to save some fun for the rest of my shifts at work this week! I have one more swing shift to work tomorrow night, and I'm also here Saturday and Sunday, so bring on the blogging fun......
P.S. It's national lab week so give your favorite laboratorian a big hug and lots of free food ;)
Wednesday, April 24, 2013
Sunday, April 14, 2013
Birthday Blogging
Well folks, it's official: I'm another year older. And maybe wiser, because today I am feeling very grateful for a lot of things in my life! Here are all the great things that have happened because I exist and aged lol:
Friday night my family threw me a really fun little party. We had enchilada pasta for dinner, along with a yellow cake/chocolate frosting and THREE different kinds of ice cream. Obviously Jayson didn't--he had homemade meatballs and a sugar free chocolate--but hey I can request something starchy and sugary for MY birthday right?? Although, I have to admit, I felt pretty guilty when he crawled into my lap and wanted to try my cake and ice cream. Thankfully, he decided not too long after I denied it to him that that he really wanted to play outside instead, so my guilt eased up a bit :]
Apparently lighting 24 candles on a cake is a fire hazard, because midway though the Happy Birthday song, the smoke alarm in the house started wailing! I almost totally spit all over the cake trying to blow out the candles because I was still laughing too hard (it's the little things in life, right?). I got some nice trinkets from my family, and my dear husband got me a certificate for an at-home professional massage. I seriously cannot wait to redeem it! I was thinking this Saturday, but we have two more April birthdays in the families to celebrate that day (plus Sam's mom will be visiting). I love getting to celebrate birthdays though so I figure I can live a few more weeks until a massage.
Today I got to sleep in until 7:45--the beauties of not working a morning shift a work! However, we did have to go to church and teach our 9 year old primary kids, and then I did have to head into work from 12-10:30. But, if I'm looking on the bright side, Sam taught the primary lesson this week, and work has been really quiet. I have enjoyed the time to catch up on blogging and whatnot, while doing the occasional item of work that comes in. A few nice co-workers of mine brought in brownies and ice cream that I got to enjoy on my evening break a few hours ago. The boys even called me before they went to bed to tell me good night. Jayson is so cute on the phone as of late (he tells me hi, night-night, and love you) and Max cried in my ear lol. I've been promised a clean house when I get home, which is a pretty exciting way to end my birthday day if you ask me.
I've had a lot of thoughts on CSID lately that I want to share. The good news is that they are a bit more positive than my last downer post. The bad news is that I'm running short on time to talk about them now, so I think I will save that for another slow work shift in the near future :]
Friday night my family threw me a really fun little party. We had enchilada pasta for dinner, along with a yellow cake/chocolate frosting and THREE different kinds of ice cream. Obviously Jayson didn't--he had homemade meatballs and a sugar free chocolate--but hey I can request something starchy and sugary for MY birthday right?? Although, I have to admit, I felt pretty guilty when he crawled into my lap and wanted to try my cake and ice cream. Thankfully, he decided not too long after I denied it to him that that he really wanted to play outside instead, so my guilt eased up a bit :]
Apparently lighting 24 candles on a cake is a fire hazard, because midway though the Happy Birthday song, the smoke alarm in the house started wailing! I almost totally spit all over the cake trying to blow out the candles because I was still laughing too hard (it's the little things in life, right?). I got some nice trinkets from my family, and my dear husband got me a certificate for an at-home professional massage. I seriously cannot wait to redeem it! I was thinking this Saturday, but we have two more April birthdays in the families to celebrate that day (plus Sam's mom will be visiting). I love getting to celebrate birthdays though so I figure I can live a few more weeks until a massage.
Today I got to sleep in until 7:45--the beauties of not working a morning shift a work! However, we did have to go to church and teach our 9 year old primary kids, and then I did have to head into work from 12-10:30. But, if I'm looking on the bright side, Sam taught the primary lesson this week, and work has been really quiet. I have enjoyed the time to catch up on blogging and whatnot, while doing the occasional item of work that comes in. A few nice co-workers of mine brought in brownies and ice cream that I got to enjoy on my evening break a few hours ago. The boys even called me before they went to bed to tell me good night. Jayson is so cute on the phone as of late (he tells me hi, night-night, and love you) and Max cried in my ear lol. I've been promised a clean house when I get home, which is a pretty exciting way to end my birthday day if you ask me.
I've had a lot of thoughts on CSID lately that I want to share. The good news is that they are a bit more positive than my last downer post. The bad news is that I'm running short on time to talk about them now, so I think I will save that for another slow work shift in the near future :]
Sunday, April 7, 2013
Venting Time
UGH. That word right there pretty much sums up today.
I think I've had some of the crankiest children in existence this afternoon. Max has been crying more of the day than not, and I am pretty convinced that it's all to do with his lactose sensitivity. Every time he eats, his poor little tummy gets all bloated and of course that makes him feel miserable. Thanks to his CSID, he can't have any of the formulas without lactose in them--they all are chocked full of sucrose to compensate. We tried lactose drops, but for some reason we can't fathom, they give him diarrhea too. I've about had it with his misery, so I've decided to call the dietician tomorrow and get him on a special formula. It's soy based (so no worries about lactose in it) and is made so that you can add in your own carbohydrate of choice (so no sucrose/starch either). The big cons are that it isn't a powder like the formulas you buy in the store--it's actually a liquid concentrate--so it's not going to be exactly as portable, and it's going to be more expensive than the regular powder formula. CSID and expensive pretty much go together though, so no real surprise there. I will do just about anything to make Max feel better though, so I'm thinking it's worth a try. I don't think it could really make things worse in terms of his health anyway.
And then I have a teething toddler. Who, thanks to his age and dietary limitations, probably doesn't eat enough to keep up his energy levels...which ultimately doubles his cranky level. I'm getting pretty fed up with the lack of things Jayson will eat that are good for him. Or eat period. I guess every parent of a toddler feels that way....but for some reason it seems worse to me with Jayson. Maybe it's because his fruit and vegetable choices are a lot more limited. The bread products/carbs he can't eat probably aren't fantastic for him in the larger quantities he would want anyway. But it's unfortunate he can't have some, because maybe it would help keep him less cranky. I'm really starting to run out of ideas of what to feed him, and he's already gotten sick of a few "favorite" foods because I overused them (primarily cheese sticks).
I hate to always whine about CSID, and I HATE for it to rule my life so much--because my family is stuck with it regardless and I need to learn to make the most of it, but MAN some days I just wish it didn't exist! There are a lot of times that I wonder why on earth both of my boys (and possibly Sam and/or I) are afflicted with this--what were the odds?? Life almost seems normal....and then it's snack time, or meal time. And I remember. I'm finding it's pretty much impossible to eat out, so doing anything on the fly is out for us. Our Easter Vacation to California kind of confirmed that to me. I feel that sometimes we are an awkward burden to people when we go out; like they can't enjoy themselves because we are there and can't eat what they want to eat.
Okay, enough pitiful whining. I think everyone who has a CSID family member needs to vent a little every now and then. It makes me feel a hair better for doing so, like maybe somebody will understand my situation. And now, I will leave you with a few cute pictures to make up for the downer post :]
I think I've had some of the crankiest children in existence this afternoon. Max has been crying more of the day than not, and I am pretty convinced that it's all to do with his lactose sensitivity. Every time he eats, his poor little tummy gets all bloated and of course that makes him feel miserable. Thanks to his CSID, he can't have any of the formulas without lactose in them--they all are chocked full of sucrose to compensate. We tried lactose drops, but for some reason we can't fathom, they give him diarrhea too. I've about had it with his misery, so I've decided to call the dietician tomorrow and get him on a special formula. It's soy based (so no worries about lactose in it) and is made so that you can add in your own carbohydrate of choice (so no sucrose/starch either). The big cons are that it isn't a powder like the formulas you buy in the store--it's actually a liquid concentrate--so it's not going to be exactly as portable, and it's going to be more expensive than the regular powder formula. CSID and expensive pretty much go together though, so no real surprise there. I will do just about anything to make Max feel better though, so I'm thinking it's worth a try. I don't think it could really make things worse in terms of his health anyway.
And then I have a teething toddler. Who, thanks to his age and dietary limitations, probably doesn't eat enough to keep up his energy levels...which ultimately doubles his cranky level. I'm getting pretty fed up with the lack of things Jayson will eat that are good for him. Or eat period. I guess every parent of a toddler feels that way....but for some reason it seems worse to me with Jayson. Maybe it's because his fruit and vegetable choices are a lot more limited. The bread products/carbs he can't eat probably aren't fantastic for him in the larger quantities he would want anyway. But it's unfortunate he can't have some, because maybe it would help keep him less cranky. I'm really starting to run out of ideas of what to feed him, and he's already gotten sick of a few "favorite" foods because I overused them (primarily cheese sticks).
I hate to always whine about CSID, and I HATE for it to rule my life so much--because my family is stuck with it regardless and I need to learn to make the most of it, but MAN some days I just wish it didn't exist! There are a lot of times that I wonder why on earth both of my boys (and possibly Sam and/or I) are afflicted with this--what were the odds?? Life almost seems normal....and then it's snack time, or meal time. And I remember. I'm finding it's pretty much impossible to eat out, so doing anything on the fly is out for us. Our Easter Vacation to California kind of confirmed that to me. I feel that sometimes we are an awkward burden to people when we go out; like they can't enjoy themselves because we are there and can't eat what they want to eat.
Okay, enough pitiful whining. I think everyone who has a CSID family member needs to vent a little every now and then. It makes me feel a hair better for doing so, like maybe somebody will understand my situation. And now, I will leave you with a few cute pictures to make up for the downer post :]
My sweet little Maxwell, who now giggles and coos back at you.....love him!
Jayson with his Daddy and Grumpy Rick--we went to Funworks on our vacation, and I'm not sure which one of the boys had the most fun!
Sam and I enjoying the really nice weather outside (and not having to work!)
The picture quality isn't so great, and the boys weren't so into posing for a camera, but don't you just love our Easter outfits? My mother in law got the boys' clothes for us, and they are the cutest things EVER!
Sunday, March 24, 2013
How We Became Familiar With CSID *LONG!*
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 :]
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 :]
Sunday, March 17, 2013
What On Earth Is CSID, Anyway??
CSID (Congenital Sucrase Isomaltase Deficiency): A rare genetic digestive enzyme deficiency in which affected individuals lack two separate enzymes found in the small intestine, sucrase and isomaltase. A small percentage of these individuals also lack the ability to break down lactose.
Sucrase helps break down a disaccharide sugar--called sucrose--into two other simple sugars (glucose and fructose). Sucrose has many different aliases in the food industry world: table sugar, cane sugar, cane juice, palm sugar, palm juice, brown sugar, saccharose.....and there are probably more than even that! But don't be tricked, they all indicate that sucrose is present in a product. Sucrose is commonly found in desserts (such as cookies, cakes, pies, and ice creams--to list a small few), in addition to most fruits.
Isomaltase helps break down a disaccharide starch, called maltose, into two other glucose molecules. Maltose has several pet names on ingredient lables as well. Basically, if you see the word "malt" anywhere on the label (i.e. malted barley flour, maltodextrin, etc.) know that maltose is present. Maltose has got to be found in nearly every grain product you can think of (bread, tortillas, pasta, chips, and so on.). It even sneaks its way into other food groups you'd never automatically think to check, such as artificial sweetners (listed as maltodextrin).
CSID is a fairly rare autosomal recessive disorder. The SI gene exists on chromosome 3, and helps with the instructions for producing sucrase and isomaltase. There are a select unlucky group of people who inherit one bad copy of the SI gene on chromosome 3 from their mother, and another bad copy from their father--becoming what is called a homozygote for the CSID mutation gene. These people show the typical symptoms that eventually lead to a diagnosis of CSID. Those who are heterozygotes/carriers of CSID (possesing one normal SI gene on chromosome 3 and one mutated), don't usually show the full blown symptoms of CSID, although they can mimic them to a lesser degree. From what I understand, it's not that common to have even one chromosome 3 with the CSID mutation. This is exactly what makes CSID more rare--the likelihood of two people who each carry the mutation to meet up isn't an everyday thing, much less for them to have a child who only has a 1 in 4 chance of getting two bad gene copies. It is interesting to note, however, that the SI mutation responsible for CSID has been pinpointed with higher frequency in people who have descendents from Greenland, Alaska, or Canada (screen your dates accordingly)!
People with CSID who ingest sucrose and maltose suffer from a wide variety of symptoms. The symptoms that drive most people to seek a diagnosis include stomach cramps, excessive bloating, gas, and diarrhea that is severe enough to interfere with normal life activities, and often leads to dehydration/failure to thrive if left unchecked. This is not a complete list though; I've heard accounts of those who actually suffer constipation, or get rashes around the mouth, and so on. Research I have done indicates that there are at least seven different mutations in the SI gene that lead to CSID, which is why different people seem to have different levels of starch tolerance (all are still unable to tolerate any sugar) and hence have the different symptoms/levels of them.
The only true cure for CSID is to stop ingesting sucrose and maltose entirely, although supplemental sucrase enzymes (called Sucraid) can be taken to assist in eating small amounts of sucrose (less than 25g per meal). No enzyme treatment has yet been FDA approved for isomaltase. However, there are several different individuals who have reported taking Kirkman Isogest and finding an increase in tolerance for starch products.
The most reliable method for diagnosing CSID is through a endoscope guided small intestine biopsy. Tissue from several locations in the small intestine are taken with the endoscope, and then sent to a pathology lab for evaluation of four intestinal disaccharide enzyme activities: sucrase, maltase, lactase, and palatinase (which is linked to the maltase activity if I recall correctly). The numbers resulted from the biopsy give an indication of a person's tolerance level to sugars, starches, and dairy products. Other methods include hydrogen breath analysis and stool pH levels, but have proved to be falsely negative in up to 1/3 of people who actually have CSID. A blood test became approved in 2012 that searches for any of the known mutations on chromosome 3 that would indicate CSID; however the only place that does this testing is the University of Washington Molecular Development laboratory, and is probably still more costly to most than getting the biopsy performed (plus it does not provide actual enzyme levels for determining tolerance). However, if one wanted to know the exact CSID mutation they carried, this would be the way to go. Perhaps in the future the small intestine biopsy and blood test will be routinely coupled together....
Sucrase helps break down a disaccharide sugar--called sucrose--into two other simple sugars (glucose and fructose). Sucrose has many different aliases in the food industry world: table sugar, cane sugar, cane juice, palm sugar, palm juice, brown sugar, saccharose.....and there are probably more than even that! But don't be tricked, they all indicate that sucrose is present in a product. Sucrose is commonly found in desserts (such as cookies, cakes, pies, and ice creams--to list a small few), in addition to most fruits.
Isomaltase helps break down a disaccharide starch, called maltose, into two other glucose molecules. Maltose has several pet names on ingredient lables as well. Basically, if you see the word "malt" anywhere on the label (i.e. malted barley flour, maltodextrin, etc.) know that maltose is present. Maltose has got to be found in nearly every grain product you can think of (bread, tortillas, pasta, chips, and so on.). It even sneaks its way into other food groups you'd never automatically think to check, such as artificial sweetners (listed as maltodextrin).
CSID is a fairly rare autosomal recessive disorder. The SI gene exists on chromosome 3, and helps with the instructions for producing sucrase and isomaltase. There are a select unlucky group of people who inherit one bad copy of the SI gene on chromosome 3 from their mother, and another bad copy from their father--becoming what is called a homozygote for the CSID mutation gene. These people show the typical symptoms that eventually lead to a diagnosis of CSID. Those who are heterozygotes/carriers of CSID (possesing one normal SI gene on chromosome 3 and one mutated), don't usually show the full blown symptoms of CSID, although they can mimic them to a lesser degree. From what I understand, it's not that common to have even one chromosome 3 with the CSID mutation. This is exactly what makes CSID more rare--the likelihood of two people who each carry the mutation to meet up isn't an everyday thing, much less for them to have a child who only has a 1 in 4 chance of getting two bad gene copies. It is interesting to note, however, that the SI mutation responsible for CSID has been pinpointed with higher frequency in people who have descendents from Greenland, Alaska, or Canada (screen your dates accordingly)!
People with CSID who ingest sucrose and maltose suffer from a wide variety of symptoms. The symptoms that drive most people to seek a diagnosis include stomach cramps, excessive bloating, gas, and diarrhea that is severe enough to interfere with normal life activities, and often leads to dehydration/failure to thrive if left unchecked. This is not a complete list though; I've heard accounts of those who actually suffer constipation, or get rashes around the mouth, and so on. Research I have done indicates that there are at least seven different mutations in the SI gene that lead to CSID, which is why different people seem to have different levels of starch tolerance (all are still unable to tolerate any sugar) and hence have the different symptoms/levels of them.
The only true cure for CSID is to stop ingesting sucrose and maltose entirely, although supplemental sucrase enzymes (called Sucraid) can be taken to assist in eating small amounts of sucrose (less than 25g per meal). No enzyme treatment has yet been FDA approved for isomaltase. However, there are several different individuals who have reported taking Kirkman Isogest and finding an increase in tolerance for starch products.
The most reliable method for diagnosing CSID is through a endoscope guided small intestine biopsy. Tissue from several locations in the small intestine are taken with the endoscope, and then sent to a pathology lab for evaluation of four intestinal disaccharide enzyme activities: sucrase, maltase, lactase, and palatinase (which is linked to the maltase activity if I recall correctly). The numbers resulted from the biopsy give an indication of a person's tolerance level to sugars, starches, and dairy products. Other methods include hydrogen breath analysis and stool pH levels, but have proved to be falsely negative in up to 1/3 of people who actually have CSID. A blood test became approved in 2012 that searches for any of the known mutations on chromosome 3 that would indicate CSID; however the only place that does this testing is the University of Washington Molecular Development laboratory, and is probably still more costly to most than getting the biopsy performed (plus it does not provide actual enzyme levels for determining tolerance). However, if one wanted to know the exact CSID mutation they carried, this would be the way to go. Perhaps in the future the small intestine biopsy and blood test will be routinely coupled together....
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