Jamie saw his allergist yesterday, and Doc said it was a great visit.
First and foremost, our child weighs 33 pounds now. 33! That’s like 1/4 of what I weigh!! (In my dreams)
But — he is by no means fat. I mean, look at him. He’s a very slender little boy, and the doctor said he’s actually on the lean side of normal for his height. I tell you, though, lifting and carrying 33 pounds around all the time is wreaking havoc on my back and shoulders. I try my best to keep good posture but it’s not easy. I’d let him walk more when we’re out in public, but he’s still young enough that he’s very prone to just take off without a backwards glance.
Anyway, he’s doing very well on his new medication (Flovent, an inhaled asthma medication that he actually swallows rather than inhales). He feels pretty good most of the time these days, and he’s sleeping VERY well. It also could be partly his growing maturity that he’s better able to deal with it when he doesn’t feel well. We’re keeping him on this medication for another three months — but at half the previous dosage — and will then evaluate whether to try taking him off of it.
Also at the end of three months, we are going to try giving him chicken. The allergist felt that this was probably a good way to start reintroducing his suspected allergens. Chicken is probably the least potent of them; peanuts are probably the most potent. We likely won’t try peanuts until he is at least 5.
And we’ll continue the night feedings for a while, probably.
Oops and OMG. I have had this written for like 2-1/2 months now and it’s been sitting patiently in my drafts folder, waiting for me to notice it and post it!!
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Joel and Valerie’s son, Alec Ian, was born on February 24. He’s adorable! He weighed 8 pounds 2 ounces at birth, which was a complete shock to everyone, especially tiny petite Valerie. I think they were expecting a baby in the 6 pound range! We visited them a couple of weeks ago. It’s amazing how tiny they are when they’re that young! It seemed like Jamie was never that small. Of course he was, for a week or so. Alec was very quiet and sweet, and now he is the proud owner of Jamie’s old side-to-side swing. I’m so excited for him to get a little older and be able to play with Jamie.
We have struggled throughout the month to get Jamie to eat more than a few bites at a time. He’s mostly seemed uninterested in food. Until now! The last five days or so (knock on wood) his appetite has picked up. Not so much at breakfast, but better at lunch and by dinnertime he seems really hungry. He’s eating turkey, hot dogs, beans, peas, corn, carrots, applesauce, strawberries, banana, fruit rollups. And of course, his crunchy corn and rice snacks. I’m super pleased that he’s accepting food off of a spoon or fork again. For a few weeks he refused being spoon-fed, which pretty much eliminated veggie or fruit purees from his diet.
He still wakes up twice a night wanting a bottle, and he still gets pediatric soy drink at those times. We have switched his daytime formula from Nutramigen to a soy-based toddler formula. During the day, he’s drinking from a sippy cup almost 100% of the time instead of a bottle, and he’s quickly learning to handle a regular cup without spilling.
Tonight I may try cooking rice or corn/quinoa pasta and see if he’ll eat it.
Overall, he seems to be feeling a lot better, but definitely not 100%. He’s had some bad nights this past month where he wakes 5-6 times per night, crying. Certainly not every night, but enough to make us think that there’s still something going on with his digestive system. His allergist wants to put him on medication. We want to talk to his gastroenterologist before we go that route.
We got Jamie a professional haircut in late February. He had a lot of longer hair up on top, and curly flyaways on the sides. Baby haircuts aren’t particularly cheap, so I closely watched the stylist’s moves so I can try to do it myself next time. Jamie was extremely cooperative, and looks very cute with trimmed hair.
Sickness has been tearing through our house in rounds. I caught a cold in late February, which I passed on to Jamie. He then managed to catch another cold that turned into croup in mid-March. Doc developed a bad cough at the same time (adult croup?), and then as soon as they both seemed better, I got a sore throat and stuffy head. A few days later, Doc got a sore throat and stuffy head. At the moment, we all seem relatively healthy, but clearly we are a family that shares germs amongst ourselves freely!
In early March we drove to Wichita for a few days. Doc’s great-aunt Patty had died after years of illness, and we wanted to see the family and attend the funeral. Jamie was, of course, too fidgety to sit through the service so he and I played outside the funeral home for the duration. At the reception afterwards, he had a good time chasing the ducks around the pond. It was great to see the aunts and uncles, some of the cousins, and of course Grandma Kerry. And later we went with Grandma Kerry to the Sedgwick County Zoo, where Jamie got to pet some sheep and goats at the petting zoo. Those goats were damned aggressive; if they saw you putting change in the goat-food dispenser, they immediately had you surrounded, loudly bleating and pawing at you with their dirty little cloven hooves. In the big cat area, one of the lions was relaxing right up against the plexiglass wall, and he had eyes only for Jamie. Check out the video below. It was kind of unnerving.
It turns out that Jamie likes brooms. It’s tough to sweep the kitchen or the deck because he’s right there, wanting to “help.” Doc got him his own child-sized broom and dustpan, as well as a small toilet plunger (another fascination, LOL). He’ll pick up the deck broom and the outdoor broom and carry them around forever. It’s cute! And he also likes to take rags or paper towels and pretend to wipe surfaces. We think he might be practicing for a future career in the janitorial arts.
In mid-March, we had a weekend where it was 72 degrees on both Friday and Monday, but on Saturday and Sunday we had six inches of snow on the ground. Just when I think that Texas weather can’t surprise me anymore, it does. We’ve had more snow this winter than we have had in, well, ever.
Jamie can now point to many of his body parts when asked, including one we did not specifically teach him. Can you guess which one? Hint: It starts with a W and ends with an IENER. In addition to that one very important part, he knows his eyes, ears, nose, tongue, teeth, mouth, belly, toes, hands, and feet. We’re trying to teach him knees and bottom. And the proper words for everything (no “wee wee” or “bobo”).
And his vocabulary is expanding. In addition to “mama”, “daddy”, “ham”, and ”hi”, he now can say “up”, “yeah”, “diaper”, and (new this morning!) “nine.” He still doesn’t really use the words in context of his own accord, but we can ask him to say them and he will.
We had additional allergy testing done on Jamie in late February. The allergist did “patch testing,” where they taped little samples of suspect foods to Jamie’s back, covered in bandages and medical tape. They had to stay on for 48 hours, which wasn’t as easy as it sounds. I think the samples itched, and so did the medical tape. And they covered pretty much his entire back. Poor little guy did really well, despite being pretty uncomfortable for two days (and stinky! he couldn’t bathe while the patches were on).
The patches got applied on a Monday, and came off on Wednesday. He had a re-check appointment on Thursday. And the results?
Jamieson is officially allergic to:
Milk
Eggs
Wheat
… which we already knew about from the earlier scratch testing, and:
Chicken
Peanuts
and possibly other foods that weren’t tested
Any one of those allergies on their own would be difficult enough to deal with, but all five of them was a real punch in the gut. I think that the wheat allergy is going to be the hardest to manage. Wheat is in EVERYTHING.
It’s possible that he’ll grow out of some or all of these allergies. Most kids, do, apparently.
The struggle we’re having now is that he isn’t really interested in eating solid foods, period — or drinking much formula. We feel lucky if we can get him to eat more than a few bites at mealtime or snacktime. I think he’s just too busy learning and playing to want to stop and eat. He seems to be growing regardless, though, so I’m trying to be very zen about it and not worry too much. He’s getting a huge percentage of his calories in the middle of the night right now, which I am also trying not to stress out about.
The things that he seems to consistently be OK with eating are hot dogs, turkey, and ham. Right now he loves fresh strawberries, as well. He won’t eat bananas anymore. Vegetables are pretty much out; Doc discovered a sneaky technique that takes advantage of Jamie’s newfound interest in feeding himself with a fork. If you sandwich a piece of hotdog between two small pieces of cooked carrot, he’ll usually spit only ONE of the carrots out. He’ll eat french fries or roasted potato chunks most of the time. And we have a plethora of wheat-free crunchy snacks that he seems to like: Barbara’s Morning O’s (like Cheerios), Corn Chex, Pirate Booty (veggie flavored), and dried fruit.
He still drinks 50%-thicker Nutramigen formula, but we have begun feeding him Bright Beginnings Pediatric Soy drink when he wakes up in the night — it’s like Boost or Ensure for toddlers, and soy based. It’s a lot cheaper than his formula, and he doesn’t notice at night that it’s different. He generally resists the soy drink during the day, but we are slowly attempting to transition him completely away from Nutramigen since it’s really for babies, not toddlers.
He still generally wakes twice per night, but it’s usually very easy to get him back to sleep. This is a HUGE change, and one I am immensely grateful for. Broken sleep is still not easy for me to handle, but I can maintain our current easier schedule for a long while if I need to.
Not food-allergy-related: He now has four words that he consistently uses! He’s had daddy/dada and mama down for a while now. Tuesday night he started saying “ham” — how cute! And yesterday he added “hi” to his repertoire.
January was a month of discovery for us in regards to Jamie’s health issues.
The endoscopy and colonoscopy in early January revealed eosiniphils in his esophagus, a type of cell that indicates the presence of allergic reactions. Oddly, there was no inflammation in either his colon or his esophagus. The extent of the eosinophils puts him right on the border between reflux and eosinophilic esophagitis, which is much more serious.
He is now taking Prevacid daily to control the reflux. This is the same medication that he was on when he was 2 months old. We didn’t think it really did much to help back then, but of course he had undiagnosed food allergies in addition to colic, so any improvement due to the medication was probably being masked by his other problems. This time around, it seems to be helping a great deal.
Next, we went to see an allergist. She talked to us extensively about his symptoms, then performed a skin scratch test (which was SO much fun, let me tell you — try keeping a naked unhappy toddler lying still on his stomach for 20 minutes so he doesn’t disturb the itchy itchy allergens on his back). The results, which have up to a 50% false positive rate, indicate that he is likely allergic to eggs, milk, and wheat.
I think that we could fairly easily avoid eggs and milk, but the wheat thing is going to be really difficult. Wheat, or byproducts thereof, is in EVERYTHING. Just think: bread, rolls, tortillas, bagels, muffins, pancakes, crackers, pretzels, pizza, pasta, cereal, soy sauce, MSG, cookies, cake, breading on baked or fried items, …. the list goes on and on.
Luckily he is likely NOT allergic to oats, corn, rice, soy, dust, mold, or cats. I’m very pleased that he handles soy OK. We have thought that he was sensitive to it since May of last year; and perhaps he was, but has outgrown it. Soy is another ingredient that’s in absolutely everything.
The allergist recommended we see a nutritionist to help us formulate a diet plan for Jamie, since we were at a loss for what we could safely feed him and still be sure he gets all the nutrients he needs. When the nutritionist weighed him, it seemed that he had lost a little bit of weight over the past couple of weeks. Of course every doctor’s scale is different, but it raised some alarm bells. She wanted us to get more calories into him each day (a baby his age and size needs about 1200) in order to keep his weight up and maintain proper nutrition. So we’ve thickened his formula by 50% and we are trying at every opportunity to stuff food into him.
He is rather resistant to this idea, though. I suppose a lifetime of food equals pain means that it’s going to take some time for him to learn to like food. We have an enormously difficult time getting him to eat much of anything at mealtimes or as snacks. Occasionally he’ll seem hungry and eat a whole serving of oatmeal or fruit or veggie puree, but usually it’s a struggle to get him to eat more than 2 or 3 bites.
It turns out that he likes bananas (and isn’t acutely reacting to them like he did last summer) but hates mashed potatoes. We were counting on potatoes to be a star of his diet, since they are nutrient-rich, starchy, and full of calories, especially with the soy margarine we added to them. We’re going to keep offering them to him, though, in hopes that he’ll change his mind.
And now, actually, he seems to be off his banana kick too. So we keep trying to find things that he likes.
Next week, he goes back to the allergist for more extensive testing. They’ll put actual food samples on his back, and seal it up with a bandage. He keeps it on for two days, after which they check daily to see how he’s reacted. This is supposedly a more accurate test.
The good news is, he does not seem to be in nearly as much pain anymore. He still occasionally has gas or is just generally fussy in an I-don’t-feel-well kind of way, but it’s much better than it used to be. And he sleeps better as well. He still wakes up at least twice per night, usually three times, and wants formula, but he’s generally easy to get back to sleep. It is probably helping that we’ve put a mattress on the floor of his room and are letting him “put himself to sleep” there, with one of us lying next to him. He seems to prefer that to being held and rocked. Once he’s asleep we transfer him to the crib, but are considering alternative options to that now.
I am doing casual research to broaden my culinary repertoire to include foods that Jamie can eat (no wheat, eggs, or dairy — more on that in my next post).
I adapted this casserole from the Moosewood Cookbook. It is delicious. Sadly, Jamie did not seem to think so. But it was a very different taste and texture from anything he’s used to. Maybe next time he’ll give it another chance.
Spinach-Rice Casserole with Beef
2 cups water
2 cups Minute Rice (or use regular white or brown rice, and cook it according to package directions)
1/2 pound ground beef, 85% lean
1 medium yellow onion, diced
1 pound frozen chopped spinach
2 teaspoons garlic salt
1/4 teaspoon cayenne pepper
1/4 teaspoon nutmeg
1/4 cup sunflower seeds
Sharp cheddar cheese, shredded
Cook rice according to package directions (for Minute Rice, boil 2 cups of water, add rice, stir, cover, remove from heat, and let sit for 5 minutes). In a medium saucepan or Dutch oven, cook ground beef over medium-high heat until browned. Add onion and spinach; cook 5 minutes. Add seasonings and sunflower seeds.
Top with shredded sharp cheddar cheese, for the non-allergic. Vegans can leave out the ground beef and still have a tasty nutritious meal.
Last Monday Doc took Jamieson to the pediatrician for his one-year checkup. Overall everything (other than the usual digestive issues and eczema) is fine. He is in the 95th percentile for height, weight, and head circumference — back on the charts, at last! Here’s hoping he slows down a bit in growth. He is 27 pounds 13 ounces and 31-1/2 inches tall.
The pediatrician (whom we just love; Dr. Michael Brown with Pediatric Associates of Dallas, in case you’re in the market for one) asked if we’d made any progress with his food sensitivities and eczema. Doc told him that things were overall pretty much the same, but that the past few nights had been really bad, with Jamie waking up between 6 and 8 times per night in pain. Dr. Brown asked what Dr. Whitney, our gastroenterologist, was doing to treat it — and had she done an endoscopy yet? (No.) We hadn’t seen her in a while but were due to a few days later, and he asked us to have her give him a call so they could discuss Jamie’s case. Now maybe doctors wanting to work together like that is common practice, I don’t know. But it’s a really good feeling to know that our current doctors actually care enough to try to solve our son’s problem, rather than just telling us that there’s nothing wrong or that WE need to work harder to eliminate his food allergies through diet.
We saw Dr. Whitney last Thursday. I told her right off the bat that we were at a point where we felt we needed to try something different. Controlling his symptoms through diet just has not been working well enough. She immediately suggested that the next course of action should probably be that endoscopy that Dr. Brown had mentioned, plus a colonoscopy and biopsies. She had hoped that he would grow out of his sensitivities, but since he was now a year old and still having difficulties, this is the next step in the quest to solve his problems.
So Jamie goes in on Wednesday for surgery. :(
I’m not sure if “surgery” is the best term; they’re not going to cut him open or anything but he will be under general anaesthesia. They’ll stick cameras up his butt and down his throat (Doc hopes that they don’t just rinse off the one camera between uses) to look for inflammation as well as the presence of certain types of cells that would indicate allergic reactions. And they’ll take biopsies of his intestines and esophagus (I think).
And after that, they’ll be able to recommend treatment. There’s a possibility that he’ll go on allergy medication, which will have an added benefit (if you choose to see it that way) of making him drowsy at night. He may also go to see an allergist for a skin scratch test.
I’m a little bit worried about the anaesthesia part of things, but I really think that this is the right thing to do. I’m not sure what else we can do at this point. Life really hasn’t been fair to Jamie. He just doesn’t feel well most of the time. I hope that we can find some answers and he can begin to feel good and be able to get some quality sleep.
Jamieson has had a bad couple of nights. Last night and the night before, he required us to be with him nearly constantly throughout the night. Doc and I have been taking shifts, laying with him on the mattress we put on his floor, trying to keep him asleep.
He’s been having a particularly rough time of it really since Thankgiving or a little before. We went through a stretch of a week or so where he seemed more relaxed and was only waking once in the night instead of his up-till-then usual twice. The norm since then has been three to four wakings, until the past few days when it’s been six to eight times a night.
Last night his nose was very clogged and he was having trouble breathing, and that woke him up numerous times. And of course, his usual problems with gas and intestinal pain kept waking him up too. He’s been bolting awake from a sound sleep, shrieking and arching his back and stiffening his legs. It takes a long time to get him back to sleep, and we haven’t been able to set him back down in the crib; he’ll wake up the instant you put him down. So he’s been sleeping (if you can call it that) next to us instead.
Which means, of course, that we don’t sleep well either. He moves and twitches constantly throughout the night, and if we do manage to fall asleep ourselves, it’s fitful since we’re so attuned to his every movement.
We are getting desperate for answers. A one year old not sleeping through the night, EVER, is somewhat unusual, but a one year old who wakes up screaming in pain multiple times throughout the night… well, there’s definitely something wrong there.
His pediatrician is very interested in getting this problem fixed, whatever it may be. We go to see the gastroenterologist again on Thursday, and the pediatrician wants to talk to her about what’s going on. I’m so tired of hearing “he’ll outgrow his food sensitivities” and that we just have to wait it out and continue to try to control his pain through diet. I mean, if that’s the only answer then that’s the only answer and we’ll deal with it, but it seems like it doesn’t matter what he eats, EVERYTHING causes him pain. There’s got to be SOMETHING we can do… isn’t there?
An inpatient psychiatric unit specifically dedicated to women suffering perinatal (prenatal and postpartum) mood disorders opens and gets new moms the help they need.
hortly before last Mother’s Day, 28-year-old Lauren Meehan-Machos broke down in front of her startled husband. “This is more than I can handle,” she sobbed.
The typically confident and self-assured Cary, NC, mom — a former Miss New Hampshire — had felt overwhelmed and panicky since giving birth to her first child, Luke, two months prior. She’d obsessed so much about getting feedings and naps “right” that she stopped eating and sleeping herself. She cried continuously. She started throwing up.
Her doctor had prescribed medication for postpartum anxiety. But, she told her husband, the day before, she’d found herself at the wheel of her red Chevy Impala, rain falling in sheets from the sky, thinking, If I drive my car off the road, all this will go away.
“I was stunned,” recalls Kevin Machos. “She’d done a very good job of hiding what she was feeling.”
Immediately, Meehan-Machos’s obstetrician referred her to the University of North Carolina at Chapel Hill (UNC). There, doctors had recently debuted a groundbreaking inpatient psychiatric unit, the first in the nation specifically tailored to women suffering perinatal (prenatal and postpartum) mood disorders. Unlike a general psychiatric unit, it offered:
A core group of doctors specializing in perinatal issues
Psychiatrists attuned to medications that wouldn’t harm a pregnancy or a nursing newborn
An unusual policy of allowing children, even babies, on the ward during extended visiting hours
Mom-only counseling focused on anxiety and bonding.
And though there were only six beds, one was available for her.
Jamie’s visit to the gastroenterologist on Thursday proved to be rather interesting. We went in armed with a very complete written history of his issues, a video of him doing his growling-animal-in-pain thing, and a bunch of questions. We were SO prepared.
We had a nice visit with the doctor (Dr. Annette Whitney), who was quite personable. She seemed very concerned that Jamie’s been suffering his whole life and that the pediatrician hadn’t been much help.
We described his history of problems to her, and told her that we took Jamie off of breastmilk a week ago in an attempt to rule that out (or in) as the issue. We’ve had him on Nutramigen formula, at the recommendation of the lactation consultant.
And quite honestly, this has been the best week of his life. He has been so happy, so relaxed, and sleeping better at night. We didn’t want to get our hopes up too high, but it was looking like that might be part of the answer.
After observing him, looking at his full-torso rash, listening to us describe his symptoms, and watching the video we brought, she told us that he was almost certainly hypersensitive to cow’s milk proteins and soy proteins. His little system just isn’t able to break them down yet.
Clearly he has had a combination of problems. Colic for sure (whatever that is), possibly acid reflux to some degree (since he always used to stiffen his legs and arch his body into a banana shape), and the cow and soy protein sensitivity. When I went off of dairy when he was two months old, the likely reason that we didn’t notice any change was that I was still eating beef. No one ever told me that it could have been a sensitivity to ALL cow products. And, of course, he has had the other issues all along as well, that could have masked any improvements from cutting out dairy.
So our choice was to either continue him on Nutramigen or for me to go on an elimination diet, which means that I can eat only brown rice, chicken, turkey, fruits, vegetables, and water until he is a year old. Neither option is ideal. Nutramigen is expensive, but I think that I would find it nearly impossible to stick to that rigid of a diet for the next seven months. What Jamie eats is important, but having a mommy who is happy is also important, and I know that I would be miserable.
So we made the tough decision to stop breastfeeding. Thursday, April 30, was his last meal from me. I feel guilty as hell, but I know it was the right choice for our family.
The gastroenterologist gave us a sample can of a formula called Nutramigen AA, which she said that we could consider if the regular Nutramigen didn’t continue to work for him. We gave him a couple of bottles of it that night just to see if he liked it. He did. Then we found out that it is approximately $70 for a 12 ounce can of formula powder that would last us 2-1/2 days. Luckily, he is doing just fine on regular Nutramigen!
Either he didn’t react well to the Nutramigen AA, or he caught a little bug on Thursday night/Friday morning. This child has never pooped more than 2 or 3 times a week in his entire short life, and within 24 hours he went about a dozen times. Apparently that’s called “diarrhea,” LOL. I suspect that he just had a little stomach bug, because I wasn’t feeling so great Friday and Saturday, myself. Awww, our first shared disease :)
Poor little Jamie has had some awful diaper rash from the diarrhea. His little butt is bright red and raw. We slather him with Triple Paste and Gold Bond medicated baby powder, whenever we change him. And because even just being wet can hurt his raw areas, we are changing his diaper a LOT now. I think he’s beginning to heal up, but he’s had a few painful days and one rather sleepless night. His little pain screams just break my heart. It’s interesting how I can now tell the difference between cries of “I’m tired,” “I’m hungry,”, and “Dammit this HURTS!”
Man, if it’s not one thing it’s another with this baby. We’ve given him Pedialyte a few times to make sure that he’s not getting dehydrated. I’m not sure that was ever a real danger, but we wanted to be careful. Hopefully, in the coming week his rash and diarrhea will clear up, and the new formula will continue to agree with him. He deserves another good week. We all do.
I’ve also been trying to figure out how to stop my milk production. I’ve read hints that range from stuffing my bra with cabbage to wrapping my chest with an Ace bandage, and contradictions such as expressing just enough milk to keep comfortable versus expressing no milk whatsoever. All I know is that right now, and for the past day or so, I have really been hurting. I think I’m going to go get some ice packs now.
I had a feeling that it was too good to be true. Jamie’s had a really bad few days. He was doing great for a while when I first stopped eating leafy greens, but the last five or six days have been kind of bad. He hasn’t felt well most of the day and he wakes up a lot in the night. Not because he’s hungry, but because he doesn’t feel good. We’re seeing the lactation nurse this morning and hopefully she can recommend some further steps we can take to get this problem solved.
It just kills me that my baby is in pain. I would do ANYTHING to solve this. All options are on the table now.
Doc and I talked to Debbie for a long time last night about Jamie’s digestive and colic issues, and she thought that he probably had acid reflux, possibly in addition to colic. She told us to make an appointment with our pediatrician (she would be ours, except that she lives in Austin). We went in this morning, and lo and behold: a diagnosis of acid reflux. We start him on medication tomorrow morning, which (knock on wood) will help reduce his pain.
THANKS, DEBBIE! YOU ARE AWESOME! We might not have otherwise gone in to the doctor, thinking that he just had “colic” and that nothing could really be done.
I’m feeling a heck of a lot better. A bit more each day. My appetite is back, to some degree. I’m eating 3 meals a day, and actually am hungry at breakfast.
I gained 37 pounds during the pregnancy, and have lost about 25 since Jamie was born. That really surprised me. I know the not-eating problem has contributed to it, but I think a lot of it’s just good genes. Speaking of genes, I can’t quite fit into my pre-pregnancy jeans (see what I did there with the homonyms?) – I can zip them up but I have a little pooch hanging over and it’s tight in the butt. The average woman takes 6 to 9 months to lose the baby weight. I think it might go a little faster for me, especially if I start back up with my yoga classes and take regular walks.
Actually, though, I don’t really care if or when the rest of it comes off. I love not caring about my weight!! I think I look damn good for someone who just gave birth a week and a half ago.
