Saturday, July 30, 2011

Ambivalent feelings about L-Carnitine supplements

So I'm gonna start off by saying that I'm not a fan of supplements, whatever their form.  I don't take vitamins, and I was reluctant to even give Cupcake vitamin D drops (in the end I was spotty about remembering).  I also don't give her iron supplements, choosing instead to make sure I'm feeding her meats/spinach/legumes.   This might make me a terrible, mom, but I'm cool with it.  :)

So when our doctor told us to give Cupcake daily L-Carnitine for her MCAD Deficiency, I was dubious.  But hey, I'll follow doctors orders if they're necessary.

Cupcake's New Born Screening numbers were very alarming.  So much so, that the Metabolic doctors recommended that we give her the highest dosage of L-Carnitine for her weight, which I believe was 2 ml per day.  Since we were new to the whole FaOD world, we did as instructed, and it was a colossal failure.  She would scream every time we gave her the drops, which was twice a day, and we would all dread them.  Still, if that's what's necessary, I figured we should toughen up.  I believe in modern medicine.

At our follow up appointment one week later we asked the doctor if the Carnitine was strictly necessary.  By this point, Cupcake's new labs were in, and her levels were much more stable.  She still had MCAD (I'd been hoping for a false positive, but no such luck), but the situation wasn't as dramatic.  And since Carnitine is controversial anyway, we made the decision together, with our doctor's approval, to only give it to her when she got sick. 

Our doctors trust us.  We had by that point shown them our anal retentive tendencies of tracking all her feedings and diapers, so I think they felt confident that we'd be able to make the call if anything was amiss with Cupcake.  Each case is different, of course, but I was more comfortable with giving medication only when absolutely necessary rather than as a precaution.

For her next two colds, we gave her L-carnitine from a syringe, and all was fine.  I doubt she liked it, but it was a non issue.

Then we had the recent Roseola fever scare.  When her fever spiked at over 102, we called the Metabolic Center, and they informed us that our new L-Carnitine dosage was 5 ml, two times a day.  That night, after she was done breastfeeding one side, we tried to put the syringe in her mouth and administer the meds.  Forcefully, I might add, since she was refusing it.  And then all h*ll broke loose. 

Firstly, she swatted the meds away, which seems like a normal reaction.  But afterwards, she started refusing all food and liquid.  I just don't think she trusted us anymore, after we had pried her mouth open to put nasty medication in her mouth. (And L-Carnitine smells nasty, I can't even imagine the aftertaste it must have)  Every time I tried to breast feed, she would scream and swat the boob away.  Luckily, she was okay with bottles of formula, and we were able to persuade her to have a couple of ounces.

For two days, she refused almost all food.  And this baby has one of the healthiest appetites I've even known.  It was probably the fever taking away her appetite, but it's too much of a coincidence that all this happened right after the Carnitine.  I think the two issues are related.

So we didn't give L-Carnitine to her again.  It seemed that our best shot to have her eat again would be to not freak her out with forced medicine.  Eventually she started eating, and her fever broke at just about the time we were to see the Metabolic specialist.

We discussed with our metabolic doctor what to do about the L-Carnitine next time she got sick.  And we all agreed that it's more important to have Cupcake eat real food (calories!) than take the medical supplement.  Her advice was to mix it with something to mask the taste, and she specifically recommended Hawaiian punch as something that has hides nasty medication flavors  I vowed right then and there to never judge another mother again if I see them feeding their babies nasty unnatural foods.  You never know the whole story...

So we'll be taking a break from Carnitine unless the Hawaiian punch business works out.  I understand that L-Carnitine supplementation has worked wonders for other children with metabolic conditions.  But in our case, we'll be playing it by ear for a while.

Thursday, July 28, 2011

We had Roseola

So one pediatric appointment, a Metabolic appointment, a scary fever, sleepless nights, and lots of fussiness later, we have confirmation: Cupcake has/had Roseola.

This is what our regular pediatrician suspected from the beginning, but we wouldn't know for sure until she got the tell tale rash.  By yesterday her fever was gone, and this morning she woke up with a gentle red covering on her skin.  I've never been so glad to see a weird rash, because now it means that it's over.  Done.  Fever broke, the rash should not be painful, and she's no longer contagious.  We can go back to our regular programming.

Though we did learn a lot from the experience.  Cupcake actually started refusing food for a whole day, going so far as to violently swat away anything we'd try to offer her. This was new for us, and left us at a loss of what to do.  Somehow she managed to eat some snacks here and there and drink a bit of breast milk at just the right times, so we avoided any type of crisis, metabolic or otherwise.  Even non FaOD children need to eat and hydrate if they're feverish.    

I will go into more detail about our metabolic appointment, as that deserves its own post, and our new found frustrations and opinions about L-carnitine (in short, we're not fans of carnitine at the moment).  In the meantime, we will rejoice that Cupcake did not have Coxsackie, a virus that still terrifies me and is probably lurking in the playground shadows.

Sunday, July 24, 2011


Cupcake has a fever or 101.5 today, and she feels very warm.  So far she's still eating like a champ and cruising the furniture like no one's business.  Then again, she's also been clingier, and looks under the weather.

Thank God it's a weekend and Nate is here.  We can trade holding her, and bounce our worries off each other.  But because it's Sunday, the doctor's offices are closed, so we'd have to wait until tomorrow to have her checked.

I've called our metabolic center (they have a 24 hour line), and they told us to follow her illness, and keep feeding her every 2 hours (breast milk or solid food), and call them back if she starts vomiting or refusing food.  But otherwise, give her L-carnitine, fever reducing agents, and lots of TLC (that's Tender Loving Care).  Not much more we can do.  MCAD doesn't make Cupcake more susceptible to illnesses, nor does it make her body deal with the virus/bacteria any different.  It's not her immune system that malfunctions.  Rather, when she gets sick, we need to watch that she doesn't go into fasting, which could cause a metabolic crisis.

So it seems that everything is "under control", but man, it's hard seeing a 9 month old miserable with a fever.  She's alternating between happily energetic and whiny sleepy, depending on how much we sing to her.  We'll just take it easy today, play in the house, and make sure she's getting plenty of rest and food.

And here comes the mom-guilt.  I fear she has the coxsackievirus that's going around.  Why, oh why did I take her to that play-date on Wednesday?  Is that when she caught it?  Should I have protected her more from infections?  Last Wednesday, I made the conscious decision to take her to the picnic in the park, even though some babies had come down with coxsackievirus.  Since the infected kids wouldn't be there, I figured it was okay, and I just make sure she didn't share toys with any of the other babies.  Maybe that wasn't enough.  We also went out to the playground every day this week, even though we're having a crazy heat wave and this virus is making the rounds.  Could it be the extreme temperatures that affected her ability to fight off infection?  And if this illness gets worse and she ends up in the ER, I'm gonna have a hard time not blaming myself.  I've always believed that we can't keep children in a bubble, that it's our duty to expose them to the world.  Illnesses at a young age result in antibodies and healthier adults, right?

I just feel so bad for her right now.  She seems physically uncomfortable, and there's only so much Tylenol or ibuprofen can do.  Any other tips for a feverish baby?

Thursday, July 21, 2011

Re-reading The No Cry Sleep Solution

A friend gave me Elizabeth Pantley's The No Cry Sleep Solution when we went through our 4 month sleep regression.  I read it along with Ferber's "Solving Your Child's Sleep Problems", and Weissbluth's "Healthy Sleep Habits, Happy Child."  Of the there, Pantley's words and advice were the most relatable, and I liked her gentle parenting approach to a baby's nighttime needs.  Overall, I highly recommend it.

I've written about my opinions on Ferber (liked the theories and research, not so much the CIO methodology), and Weissbluth (hated his close minded one-size-fits-all admonishments), but I realized that I've never blogged about the No Cry Sleep Solution.  Probably because I was actively taking advice from the book, so it felt like it deserved several pages of analysis and thought.

Well, I'm ready now.  If I am to be honest with myself, Cupcake never recovered from the 4 month sleep regression.  She has some good days and some bad days, but the good days are still only 4-5 hours of sleep a night, and on the bad days she needs to nurse every 2 hours (she doesn't have nighttime needs beyond food, it seems).  The bad times are not too terrible, compared to some other stories I've heard, but still, I'm getting worn out.

I want to respond to my child's needs, and if she needs to eat at night, then she shall have milk.  However, I also want to help her self soothe to the best of her abilities.  Nothing wrong with gently directing the child towards more sleep independence, right?

Over the next few weeks/days I plan on going over the book again, and hopefully writing about our experiences with it.  What worked for us, what didn't, and what things don't work because we might just have totally unrealistic expectations.

Tuesday, July 19, 2011

MCAD and neighborhood viral outbreak

It seems that several kids in our playgroup have come down with Coxsackievirus.  A benign but highly contagious illness characterized by high fevers and blisters in the throat that cause nausea and decreased appetite.

I am terrified.

I don't care that this virus works itself out after 3-5 days with no lasting effects.  For a child with MCAD, a high fever with decreased appetite is exactly the most dangerous situation to be in.  I'd rather take a 2 week long cough, or general fussiness.  But please, no high spiking fevers. We've avoided the ER so far, and I am not about to start going.

I'm glad our playgroup responded so quickly and informed all of us of the situation.  But it leaves me wondering what to do tomorrow.  We have a lunch picnic play-date and a music class scheduled.  Do we still go?  So far I've avoided sheltering Cupcake from illnesses, choosing to take her out in crowds no matter what.  And she's responded by having a strong immune system.  But this is the first case of a specific viral outbreak.  I don't want to hide, but I don't want her to be ill either.

She's been fussy this evening, and took a bizarro nap at 7 pm (her bedtime is 10 pm).  We can't tell yet if it's a strange extra evening nap, or if she'd down for the night.  Either way, something is off, and I hope to Dog she's not coming down with the illness.

Saturday, July 16, 2011

Taking a baby to the beach

Jacob Riis Beach.  Photo from National Park Service.
Gone are the days of picking up a bag, throwing some sunblock, towel and book, and heading to the beach.  Trips with a baby means tripling the amount of stuff you lug around (at least), staying for half as long, and changing your expectations of ,"fun and relaxation".  Having said that, a little bit of preparation, and you can have a wonderful time going to the beach with your little one.  And if you're lucky, they'll love the sand and water.

Today we took Cupcake to the beach for the first time.  I was a bit nervous.  What if she hated it?  What if we had a total meltdown in the car?  Would we forget something vital and important?  And most importantly, would it be fun for all of us?   It was a resounding success.  So much that I've decided to compile my patented advice for posterity.  

Ways to have a wonderful time at the beach with a baby:
  • Sun Protection   I'm a little paranoid about the sun (not for myself, just the baby), since their skin is still so delicate.  So we followed the advice of overprotecting.  Applied sunblock at home before we dressed Cupcake, then reapplied at the car when we got to the beach (by this point, between getting ready, driving and grabbing a bite to eat, it had been over two hours since the last sunblocking).  And again after being at the beach for about a half hour.  Honestly, it's impossible to overprotect the skin, and though the baby lotion is grossly overpriced, I'd rather waste 5 bucks than have to deal with sunburns at 3 am.  We use California Baby Sunblock SPF 30.
  • Time the outing around naps.  No sense in dealing with a cranky and sandy baby.  We decided to hit the surf after the morning nap, hoping that she'd sleep in the car on the way there.  For this purpose, we also picked a beach that was approximately 40 minutes away.  We thought we were soooo clever.  Instead, Cupcake had a meltdown as we were arriving in the beach area, and we had to give her an Ergo nap while we grabbed lunch in an air conditioned diner.  Ended up working out.  Then we started packing up as she began to show signs of tiredness, so that by the time we drove bar she zonked out in the car.  All in all, we maximized our time in the actual sand.
  • Have the right gear.  We had a spankin' new beach umbrella (with an adjustable tilt), beach towels, a foldout chair, sun hat, plastic toys (didn't buy anything special, just used her regular plastic toys), bucket, t-shirt, water, snacks and swimming diapers.
  • Don't bring more stuff than you can carry.  Even if you are driving and the beach has on-site parking, you'll still end up walking a bunch on the sand.  Unless it's one of those beaches where you park right in front of your towel, but meh, those beaches aren't too nice in my book.  Most beaches have water, then a long stretch of sand, some type of boardwalk/ bathroom area, and then a parking lot.  And if it's a beautiful sunny day, the car ends up pretty far back.  We brought a bunch of stuff, but there were also two of us carrying it.   I wish we'd packed more compactly, as we didn't take into account that Cupcake would be super squirmy with excitement of being outside, so it ended up being one of us with just the baby, the other one in Sherpa mode with too many small bags.  Next time, larger bags so there's less packages.
  • Bring an inflatable pool.  This was a bit of a hassle but oh so worth it.  With an inflatable pool, we were able to have Cupcake play in the water under the umbrella shade right next to us.  We filled it with ocean water, and gave her some toys, and she had a wonderful time.  She played there on her own for over 20 minutes.  Time for us to relax some, chat, get some sun.  Our main issue was deflating it, because it wouldn't fit in the bag again, so next time we have to bring a much large plastic bag to squish it into.
  • Designate a non-sandy towel.  Everything gets sandy, it's just a fact.  But it helps to have a towel that stays in your bag, until it's time to dry everyone up.  This towel stays clean and off the ground, and is perfect to dry the baby before you head home.
  • Bring snacks and water.   We had bananas (her favorite), mum-mums, and sport nozzle water bottles.  When in doubt, when Cupcake got fussy, we gave her water.  One can never overestimate how much they're sweating (specially if your baby has a metabolic condition, as Cupcake does).  We also gave her milk at the beach, as I have absolutely no qualms about pulling my bikini top to nurse Cupcake (while under the shady umbrella). Hydrated well-fed baby = happy baby.
  • Address how baby is responding to the water.  In our case, Cupcake turned out to not be a fan of sitting on the shore and having the waves hit her.  And she does NOT like wet sand, hilariously.  However, she loved loved loved having us hold her and moving her around the waves.    We'd hold her in something like the "colic hold", and have her splash her arms and legs in the water, then when the waves came they'd splash her and she loved it.  I was expecting her to sit on the sand, but hey, she knows what she likes.
  • Take lots of pictures!  It took us by surprise how much Cupcake enjoyed it.  Specially a long interaction with sand.  She was absolutely perplexed at how it slid off her hands.  Glad we were able to capture ever moment.
All in all our first beach experience was a big success, and I can't wait to repeat it next weekend.  For now, we're gonna take it easy tomorrow and give Cupcake's skin a break from the sun.  We were prepared, and Cupcake is a total beach bunny.  Next adventure, the local outdoor pool.

Friday, July 15, 2011

Updating the blog

I'm redesigning the blog, so please forgive the crazy formatting issues for a couple of days here.  I'm trying to take it down while I reformat, but I'm not sure I'm doing it correctly.

HTML and graphic design are fun, so I might be putting way too much effort into this.  Time I don't have at the moment because I really should be doing dishes, cleaning the living room floor and updating my professional online portfolio.  Which is why the site might be wonky for a bit.

Thanks for your patience  :)

Tuesday, July 12, 2011

Breastfeeding - How to deal with a biter

This seems to be a current topic of conversation in my mom-baby group, as many of our kids have multiple teeth.  Cupcake still only has her 2 bottom teeth, but they're razor sharp.  And yes, sometimes she bites.

We went through a bad biting stage for a while, and I asked my local La Leche League chapter for their advice.  They are such a great source of information, even if I still find them overly AP for my tastes.  Also, through asking other people, I've come up with a brief summary of some techniques to deal with a compulsive biter.

Here goes:

Reprimand : Pull them off the boob and say NO! very firmly.  Then put the milk (boob) away.  This didn't work for us.  Cupcake found it hi-la-rious.  Which then would make me laugh, and well... it wasn't getting the point accross.  At the LLL meeting, many ladies said that this technique works in theory, but not in practice.

Distract and underplay the reaction:  Many times, yelling Ow! in pain or telling them a firm NO! can be counterproductive, because most babies laugh at the attention.  Instead, try to have a non-reaction.  When they bite, pull them away (making sure to insert your finger in their mouth so you're not pulling your nipple out while biting, ouch!), and cover your boob.  They will cry, and you distract them with a teething toy in their mouth, or something else in their hands.  When they're calmed down a bit, start breastfeeding again.  Repeat for as many times as necessary until they seem to get it.

Know that this too, shall pass.  Just because the baby has started biting all the time, it doesn't mean this is the new normal.  Like everything else, they go through phases.  Cupcake had a terrible week right before her first tooth came him, and I was basically ready to end our breastfeeding relationship.  I gave myself a deadline for a week away, if she wasn't done biting by then, we'd have to use formula. Her tooth came in before that time (lucky girl) and she stopped biting.  Still bites once in a while, but it's very seldom.  Right now she's teething again, so she'll bite more, but it's not a chronic issue.  

Prevent the bite.  Observe their biting habits.  Are they biting at the end of the nursing session, before the let-down, when they're done with one side?  Maybe they're done drinking for a bit and need to teeth.  Have a cold teething toy close at hand.  And when they're drinking, observe closely if the sucking motions are slowing down, then pull them off the boob and insert a teething toy in their mouth.  As in, try to pre-empt the bite.  I've never been able to actually do this.  Cupcake always catches me by surprise.

Nurse when well rested.  Many times, they bite out of frustration or tiredness.  See is you can feed them at times when they're not dying for a nap.  This has really worked for us.

Change nursing positions.  For example, Cupcake will only bite me when she's laying down.  If she bites, I switch her to sitting.  She sits on my lap, facing me, with the boob on her face.  Looks hilarious, but it seems to distract her enough.

The boob smother.  The Dr Sears recommended method of pushing the biter's head into your breast.  Effectively, this smother forces them to have to open their mouth and they can't bite (it saves your nipples too) Repeat as many times as necessary until they get the point.

Any other techniques you would like to share?  I'm always open to breastfeeding advice.

Thursday, July 7, 2011

On weaning

Man, I think I'm gonna have to make an appointment with our Metabolic doctor soon, because Cupcake is showing sings of weaning.   At the ripe old age of 9 months.  

I'm having very conflicted feelings about this, which I'm sure it's normal.

Currently we nurse at 9 am (wake up time). 12:30 or1pm, 4pm, 7pm and 9:30pm (bedtime), 12:30 pm, (dream feed)  4:30 ish (if she only wakes up once a night, which... riiiight... it's the best case scenario).

(As an aside, I'd like to share that technically, Cupcake can go longer between feeds - we're at 8 hours overnight- and doesn't metabolically need the midnight feed.  But we do it anyway, because otherwise she'd wake up at 2am, just as I am reaching my own REM sleep.  We have to work together, child.   But even though medically she could sleep longer, she seems to still get hungry during the night, after about 5 hours.  You can't convince me that MCAD is unrelated to to appetite.  I was told that the only issue with her MCAD is to feed her, so if she's hungry, homegirl is getting milk.  Hopefully this will sort itself out as she gets older.)

Aside over.  
So we've been having lots of trouble with the bedtime feed.   Cupcake is tired, fussy, and my letdown is super slow at the end of the day.  Also, and this might be the biggest factor, she usually has dinner with us at about 8 pm.  I'm beginning to think that milk at 7, solids at 8, and then again milk at 9:30... maybe not such a good idea.  By the time bedtime comes along she's probably not that hungry.  She'll usually eat, but more and more often she likes to be at the boob, but gets frustrated after a few minutes.  We go on with the routine and read books instead, and she doesn't seem too upset about it.  Seriously, sometimes she skips her bedtime milk,  which I thought was supposed to be the sacred one.

I'm thinking of combining the 4 pm and 7 pm nursing sessions.   As it is, the 4 pm is a complicated one too.  The way her naps work, I end up combining her 4 pm milk with her solid lunch sometimes.  And as we are usually out at the park at this time, she doesn't seem to interested in breastfeeding.   So maybe I'll just do one nursing session at about 5:30 or 6 pm, so that by the time bedtime comes along she'll actually hungry.

We'll see.  I'm hoping that in response to this adjusted feeding schedule, her naps will reorganize as well, and she'll go into two longer naps, instead of the current three.

Next week there's a La Leche League meeting.  I'll be curious what they have to say about it.  I'm fine with weaning.  Though I love breastfeeding, I'm not particularly interested in extended nursing.  I mean, if Cupcake has a hard time letting go, I'll keep giving her the boob as long as needed, but I have a feeling that won't be THAT long.  She likes real food way too much.