Monday, October 17, 2011

Our boy? He brings the drama.

The fact of the matter is that our son isn’t growing.  He’s such a beautiful boy – and smart, and funny, and silly.  And we know that he’s small – but don’t good things come in small packages?  The pediatrician is “let’s keep an eye on this” concerned – certainly not “Danger, Will Robinson!” concerned.  So we take comfort in knowing that they do this for a living – if they’re not worried, we shouldn’t be either.  Right?

The thing is, we’ve known for some time that he’s not developing quite right.  Other babies happily chatter away while our boy is silent.  Totally silent unless, of course, he’s screaming.  And scream he does, at the top of his lungs, and we’ve begun to worry that he will damage his hearing.  Other babies are scooting and crawling and exploring.  Our boy would prefer to stand.  But he laughs, and he’ll initiate and sustain eye contact, and he’s so clever – no one is concerned.  Every baby’s different, right?

As he nears his 9 month birthday, frustration is mounting.  He has seen the allergist, who assures us that he’s fine.  No anaphylaxis, no worries!  Try re-introducing everything!  But the list of things he can’t tolerate grows ever-longer (Bananas.  Soy.  Milk.  Eggs.)  We can no longer figure out what’s a new reaction and what’s a “there’s too much crap in my body” reaction.  He’s seen the pediatrician, who assures us that he’s developing well.  But he continues to fall behind his peer group at school.  We’ve had enough.  Someone needs to help him. 

So at 9.5 months, he is evaluated by Early Intervention.  They listen, and they observe, they play with him, and they talk with us.  After a few hours, we finally feel that someone is seeing our son – not the happy, curious, “Hey it’s a new place, look how distracted and quiet I am” boy that the pediatrician sees.  The boy that lives at our house, the one that struggles to eat and refuses to bend his limbs and waist.  The one who cries miserable tears for hours because he is hurting and no one is fixing it.  The boy who throws up most of what he eats and has reflux so severe that he must think we’ve been feeding him fire.  They saw *that* boy.  And they want to help.

The report comes.  His fine motor skills are perfect.  His cognitive development is wonderful.  That boy is *sharp*.  He’s displaying a lot of skills in the 11m+ range.  But he is verbally delayed.  And he’s quite gross motor delayed.  And, they tell us, if we can’t get his food/reflux problems under control, he will continue to fall even further behind.  That’s enough to light a fire under us.  Someone HAS TO help.

Physical therapy for his torticollis (which is so far down the list of things that we’re trying to handle, I’m glad someone else thinks it’s important enough to address.).  Occupational therapy for his motor delay and verbal delay.  Feeding therapy.  And please, find someone to help with food.

Half a week later finds us snuggled into the car at 6:15am, heading to CHOP.  (Have I mentioned how fortunate we are to live so near to so many wonderful doctors?  Very.  That’s how fortunate we are.)  We see a brusque and busy but very smart doctor who wants to go through everything all over again.  I’ve told this story so many times to so many doctors, I’m not sure I can tell it again.  But I do, because maybe this time it will help.  Maybe I know something that will help them figure out what to do.  So I tell it all again, and this guy listens.  He listens to the whole thing, and here’s where it gets exciting – he knows what to do.

So, yes, he has reflux, and we will be moving on to a third reflux medicine in hopes that it helps.  (That last one?  The one we filled five days ago and paid $110 for? Can’t use that, it has milk protein.  Dummies.)  Fingers crossed that Prilosec brings him some relief.  But reflux is a drop in Aidan’s misery bucket right now.  This is where our other doctors have fallen short.  They have gotten so hung up on treating reflux that they haven’t bothered to look at anything else.  This new doctor?  Not so easily sidetracked.

He has (and I quote) “something terrible happening with food.”  The doctor believes he has some serious nontraditional food allergies (which we’ve suspected from the beginning) that are causing him not to process food very well.  They think that his allergic reaction is internal inflammation, which causes him to be in fairly constant pain (I’d scream too) and prevents him from taking what he needs from the food he does eat, hence the poor (no) growth.  We don’t know at this point what he’s allergic to – could be one thing, could be everything.  We just don’t know.

We will be discontinuing the prevacid and starting prilosec.  From there, our path forward is to remove all food from his diet.  All.  Everything.  No crackers, no rice puffies, no yummy yammies.  Nada.  For now, solid food will be replaced by a purely liquid diet consisting primarily of elemental formula (we will try Elecare and Neocate and see which he prefers).  We are allowed to attempt to continue nursing in addition to the formula for two weeks, but if he hasn’t made significant growth progress in that time, he will be put on formula alone.  Formula that is $40/can, and a can is a 2 day supply. 

He will be seen at CHOP every two weeks, and in 6 weeks we will regroup to figure out what to do next.  Our hope is that he begins to grow, and that we can talk soon about re-introducing food and moving away from formula.

So that's the story.  That's why I haven't updated - it's not too exciting to post the same growth stats every single month.  I promised myself today, as I drove my silly monkey back from CHOP, that I wouldn't forget to post the happy things - even when we're not feeling upbeat or happy.
Please note:
- I do not want to hear that you "don't see what the problem is" - However often it is that you see him, you don't live with him, and you don't know.  I appreciate your faith in his absolute perfection, but please trust that we're doing the absolute best we can for him and we aren't subjecting him to all of this because we enjoy it.

- I do not want to hear how your friend's kid didn't speak until age 6, and she's fine, so delay-shmelay.  If your friends didn't get their nonverbal six-year-old some help, they are negligent.  We would prefer not to be negligent.  Just a silly little thing we decided at some point, I suppose.

- I don't want to hear how much worse it could be, and how lucky he is.  These are our problems, and they're pretty huge and soul-crushing to us right now.  Let us feel the way we feel, please.  It's normal and healthy.

- This is a rare one for me, so mark your calendars.  I'm sorry.  I don't apologize unless I mean it, and today, I do.  I'm sorry for being snippy and short and dismissive.  This is a lot for us to wrap our heads around, and to put it simply, I'm cranky.

We will be okay.  I know we will.  We are looking into some different ways to get sample cans from doctors offices and the manufacturer.  We are looking into whether or how to get insurance to cover it.  I have no idea how we're going to find time to take him to CHOP every other week, or do PT/OT in our house every week, but we will figure it out.  There's always a way.


  1. Caroline,
    I'm so incredibly sorry that you all have to deal with this. And I know you said that you don't want to hear how 'lucky' your little man is, but the truth is that he is definitely lucky to have parents who have been great advocates for him and his health.
    Good on you for really getting out there and finding someone who can give A some real help. I hope you guys get some solid answers soon and he can finally have some relief.
    Hang in there. I can't imagine how incredibly frustrating things are right now, but you all will make it through. I'm thinking happy thoughts for your family, and especially for A.

  2. I think it's awesome that you knew something was "off" and kept trying until you found someone who would listen.
    It's a shame it took so long for anyone to understand/help you guys, but I'm hoping this route will make Aidan feel better real soon!

  3. I'm so sorry, Caroline. I am very glad you've found a doctor who "sees" him the way you do. I hope this new plan helps. <3

  4. Oh gosh, Caroline, I am so sorry to hear that you are dealing with so much. I am really glad that you've listened to your mommy instincts and found a doctor that really seems to get it and seems to have a solid plan. I hope that Aidan feels better soon and that you can figure out what's going on ASAP. Big hugs, mama.

  5. You are an awesome mother for realizing that something was 'off' and sticking to your guns. I'm so glad that you found someone who knows what direction to go in next and I hope your monkey starts feeling better. Know you can message us anytime, Sophie & I are thinking about you!

  6. Caroline,
    The ladies have said it, you're amazing, but more than that, GO MAMMA!!! You've done something very few mothers, let alone, ones who work outside the home do.. your homework and trusted YOUR gut. I'm so happy for Aidan that his mamma's a BEAR and a really big one (figuratively :)). I"m happy to hear you're feeling like there's some real diagnosis and direction and finally finding help for him, and of course we all know, you will find a way to make everything come together, no matter what.... What a lucky little monkey!

  7. I'm so sorry you guys are going through this, and so sorry Aiden is having such a rough time. I truly hope your new doctor is able to come up with a plan to help him and that he will start thriving soon. Sending lots of good vibes your way. ((HUGS))

  8. I am so sorry, and hope that the doctors and interventionists are able to help. I am so glad that you got early intervention, since that is key to helping him develop normally for most of his childhood.