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?

New Help for Moms with Postpartum Depression

By Bonnie Rochman, Parenting

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.

Read more…

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.

Friday was about the worst day I have ever had in my life. I think I had a minor mental breakdown, and I mean that in a very serious way. I’m actually surprised I am writing about it here for the world to see, but I’m not ashamed to admit at this point that I am not Superwoman, and sometimes I need help.

I’ve been getting very little sleep, of course; that’s life with a new baby. I didn’t realize, though, that it wasn’t normal to not want to eat at all after having a baby. So I have eaten almost nothing since he was born. It really was beginning to catch up with me. The less I ate, the sicker I felt, and thus the less I wanted to eat.

Also, I spent most of Friday crying. I couldn’t control it; the tears just flowed no matter what I did. I had begun to regret getting pregnant in the first place. I wanted to go back to my regular life where it was just Doc and me and we got regular sleep and we didn’t have to worry about what we were doing wrong with the baby and why he wouldn’t stop crying. I didn’t want to have a baby anymore. 

I decided to call my doctor and let him know that I wasn’t able to eat. Later in the day the office called me back with a prescription for an anti-nausea medication and one for Zoloft, an antidepressant that they thought might help my appetite return.

Doc picked the medications up for me and I took one of each in the early evening. And then the downward spiral began.

I had a really bad reaction to the Zoloft. My depression symptoms rapidly went out of control. I was having scary thoughts that I don’t want to write down now. I felt like I was losing my grip on reality. I just went through the motions with the baby. Feed him, then hand him off to someone and not care what happens at that point. I didn’t care about the baby or myself or anyone except Doc, and the thought that I was making Doc sad is really what was holding me together by then. Mom said that my “affect” was flat… meaning that I had no emotion of any kind on my face.

Luckily Doc and my mom were around, and Doc’s mom, sister, and her husband had come in for the weekend. They decided that I needed to sleep as much as possible, so I went to bed. Doc and the two grandmas worked in shifts all night and brought Jamie to me when he needed to eat and sat with me until he was done. 

When I was awake I kept telling myself to get on top of it, to get back in control, to figure out a way to deal with it. Easier said than done. Logically I knew this was what I needed to do, but I didn’t have the tools and energy to actually do it. So I spent all my energy breastfeeding and trying to keep my mind in one piece.

When I woke up Saturday morning (and really, “waking up” and “Saturday” and “morning” are all relative terms when you have a week-old baby) I felt a little better, but could still feel the Zoloft fucking with me. I had enough clarity, however, to force myself to eat. I had some grapes and tried to eat part of one of Mom’s homemade cinnamon rolls. Then we left for the pediatrician’s office (we had an appointment to find out why Jamie hadn’t pooped in over 48 hours).

Later Saturday, Doc went to the grocery and bought me a selection of Luna energy bars and some Ensure and Boost, the high-calorie nutrient drinks. I’ve been drinking the drinks fairly regularly between feedings now, but I am still having a really tough time eating much of anything. I’m not sure that the anti-nausea medication is actually doing anything.

I need to call my doctor and ask them what Plan B is for my lack of appetite. My body will take what it needs to make breastmilk for Jamie, but it’s not leaving me with enough resources to keep myself going very well.

I need some help.

My ear is ringing like crazy. A constant high-pitched whine. EEEEEEEEEEEeeeeeeeeeeeeeeeeeeeeeeee…..

BUT… the deafness is going away. I would say I’m at about 75% hearing now, up from maybe 25% earlier.

After the doctor called, I went home and let some rubbing alcohol and vinegar stew in my earhole for a while. Giggled at the word “earhole.” Could only lay on my right side. Felt cranky and really sorry for myself.  Doc tried to comfort me but I was beyond grouchy at that point. Watched about 10 minutes of “My Super Sweet 16″ on MTV before I had to turn away… possibly one of the stupidest shows I have ever seen. Eyes burning from bad selfish reality television, ear burning from acidic cocktail therein.

It wasn’t helping immediately (me? impatient? no!) and in fact my hearing seemed to get worse. I decided to go back to work, and stopped to grab a quick bite to eat on the way in. The restaurant was so loud and tinny-sounding; the noise from the customers and the bad “mainalternastream” rock playing over the sound system was just making me crazy. My good ear was working overtime trying to hear for two, and each sound was a claw scraping my brain. I ate quick and got out of there.

When I got back to the office, where it was blessedly quiet, I noticed that a really loud ringing had started in the bad ear. And gradually, this afternoon, my hearing is returning. The ringing is still hanging around, but I’d rather it be ringing than deaf.

Wait, let me apply a caveat to that last statement: I’d actually rather not have the ringing AND not be deaf! But, comparatively speaking, ringing is less annoying.

NOTE TO SELF, FRIENDS, AND FAMILY: Always apply earwash after swimming from now on. You don’t have to buy the commercial kind; just get a squirt bottle (like an empty Palmolive dish soap bottle) and fill with 1/2 white vinegar, 1/2 rubbing alcohol. Squirt into ears after swimming and let drain.

I am really freaking out right about now. I woke up this morning unable to hear out of my left ear. No signs, no warnings, nothing. I felt completely normal when I went to bed last night and then when I got up about 7:00 this morning, I only had partial hearing in my left ear and this roaring/ringing sound. I feel completely fine otherwise — no blocked sinuses or anything of the sort.

It has not gotten better since.

I talked to the nurse at my doctor’s office just now. She said to try putting a few drops of alcohol and vinegar in there, to see if that helps, but to call them back if it doesn’t get any better or if anything starts to hurt. She seemed to think it might be some water trapped in there from swimming, or possibly a bacterial infection.

I dunno… it seems like if there was water in there I would be able to hear or feel something sloshing around, but I can’t.

I guess if this turned out to be permanent, it wouldn’t be the end of the world.

But I’m freaking out anyway.