well visits are exhausting too


Trevy had his 4 year old well visit today.


(somehow I’m just as exhausted as when it’s not a regular, run-a-the-mill kinda visit)


He’s fallen victim to the severe allergies this season.  But it’s weird.  Cause it’s only affecting one eye.  His right eye.  The side that theoretically was (past tense since it’s no longer in his noggin’) controlled by his left brain.  Which he rubs rubs rubs until it’s swollen and bloodshot.  Dr. Pedi recommended trying an OTC eye drop to see if it helps.   


He’s 66th percentile for weight at 38lbs.  Which is weird. too  Cause he looks so skinny.  Seriously.   


And 44th percentile for height at a whopping 40 inches.  Give or take a pathetic (because ,yes…we’re losing them.  Sniffle.  Sniffle.) curl.  Again, weird.  And a little bit sad.  His newborn length was 95th percentile.  We had ourselves a strapping young lad.  How proud we were.  Why?  I don’t know.  Silly, I guess.  I just remember thinking Trevy was going to be our tallest.  Our strongest.  And it made me all sappy inside.  So many things he was going to be.  None of those newborn mommy dreams included even a fraction of the journey we’ve been living.  Slowly we’ve watched as his height continues to decline.  Evidently it’s not alarming to the medical professionals.  But I wonder.  I wonder if the meds are stunting his growth.  I wonder if the seizures are messing with his physical development as well as his cognitive.  Jonathan tells me to stop fretting.  I mean, really.  The less of him there is.  The less of him there is to manage. But still.


The V word came up.  Vaccinations.  Ugh.  Oh how I hate the V word.  Not because I fear them.  Although I kinda do.  But also because I have not during the course of the past three years found the whatever it is I need to find to do the research myself.  Except to know with certainty that DTaP is contraindicated for IS babies.  And although Trevy does not have IS seizures at this particular moment of time…he does have a history of the catastrophic seizure disorder.  And we’ve seen enough frowny faces recently (see this video for a sample frowny face) to still our hearts and not being willing to take the risk.  Dr. Pedi isn’t opposed to continuing to withhold vaccinations for the time being.  I keep saying “just until he’s six”.  Like somehow that’s the magic number.  When really.  There isn’t a magic number for my heart.  Because no matter how old he is I will be holding my breath for several weeks post any immunizations.  And I will be destroyed if they should trigger a seizure response.  Of any kind.  But mostly the Infantile Spasms kind.  Dr. Pedi agreed to piggyback a titer on his next blood draw.  That way at least I’ll know with certainty that he is no longer benefited from the last round he received.  At his 6 month well visit.  When immunizations were necessary for us to continue playing missionary in Africa.  Because we had witnessed with our very own eyes the bodies of those ravaged by the diseases the Vs protect against.     


The visit was short.  Just 30 minutes, I think.  And yet…the after effects are still lingering.  Everything with Trevy is heavier.  More complicated.  Totally the opposite of easy breezy.  It’s all just so darn exhausting!  And yet.  He’s doing so well considering.  (if I had a quarter for every time I hear that…)  He practically carried on a one word at a time conversation with her.  Pooh.  Thoughtful pause.  Hug.  Thoughtful pause.  Buzz.  Pause.  Hug.   Me translating of course because she’d have no idea he still yammers on about our Wish Trip.  But she was so impressed.  She remembers when he couldn’t communicate at all.  And his sensory issues were better.  He used to scream over everything.  Blood pressure cuff.  Ear scope.  Stethoscope.  He breezed through all that today with minimal fussing.  Although he did scream bloody murder when he had to lay down on the table.  Actually, he hates laying down on anything against his own will?  I’m guessing that’s a sensory response?  Sometimes it’s not so hard to navigate life with a non-verbalish kid.  But sometimes I sure wish he could help me out.  Cause I’d really like to know why exactly he has mondo melt downs every time I have to lay him down to change a poo!  I keep reminding him if he just starts going on the potty like a big boy…no more laying down torture sessions. 


:: smile ::




blogzilly said...

I think you could probably sub in 'Everything in Life is' for the words 'Well Visits are' in your title, yeah?


The last time Bennett was at the doctor's office, the subject came up. I asked about the specific things that he would be vaccinated against, and if any of the things he would be vaccinated against are diseases that would kill him if he were to contract.

I believe the answer was no, but I am not entirely sure. I know that sounds as if I am a terrible parent, but I wasn't as concerned about remembering that bit of info as much as I was concerned about keeping any vaccinations away from Bennett. As I recall, I wrote the diseases down, then went home and researched them. I did some calculations based on percentages and such and decided that the chance of him contracting anything that could cause him to die that could have been prevented by a vaccination was FAR smaller than the risk of him having a seizure event caused by some random reaction to some unknown element (since I cannot get a full accounting of every ingredient IN each shot) in a vaccination 'stabilizer' because of his neurological history.

Taking the emotional component out of it, which is hard for me, I went with the numbers. His chances are better if I don't vaccinate. My pediatrician supported my decision after I explained all of this.

And, in the VERY off-chance that Bennett will ever be in a position to attend a regular school, and that does not appear likely, I'll deal with his lack of vaccinations at that time with a lawyer.


My point? As the parent you gotta go with WHAT YOU THINK IS BEST. If you think it is best for some shots? GET THEM. If you don't? DON'T GET THEM. In the end, it's all up to you guys. Nobody else. Sucks that we have to MAKE these decisions, doesn't it though?

The weight thing is interesting too. Bennett also used to be a Goliath in percentiles. But now all of his are slipping too...interesting. I think I have a theory. It might have something to do with the increase in carbs over protein that occurs when more intensive therapy kicks in and more edible reinforcements get used. The child ends up with a heavy carb diet, a lot less protein, and this doesn't promote a lot of growth.

It's just a theory. I have no proof. But maybe it's playing a part...I have noticed that Bennett's decline started to really steepen since his ABA got rolling...

happy's mommy said...

I'm with you on the vaccinations. I just wish you could come and do all the advocating in my place. Because I am just SO weary. Bone weary with the constant advocating. Ugh. Anyway...

So with Trevy's ABA she's not using food as a motivator. She uses playdough. And stickers, I think? Maybe with Bennett they could try something other than food? Trev has always been a pretty good eater. Although in the past few months we've noticed a trend towards obsessing. For, like, a month straight he ate nothing but yogurt and applesauce. Now it's chicken nuggets with "dip". He's a ketchup fan. But it's nothing but nuggets all day long. Breakfast. Lunch. Dinner. Can't get a veggie in the boy other than sneaking in V-8 Splash. Same with fruit. Except applesauce. But he won't even eat yogurts that have fruit in them. Must be smooth. Anyway...

Interesting though. I've never associated his lack of growth with food. But it makes sense. Even if the drugs effect the way his body metabolizes protein... It bothers me though. 95th down to 44th? Am I crazy...or does that seem HUGE?


Lisa said...

I would say that does seem like a huge drop percentile wise but my kids have both had weird slides down the growth chart too so I don't know. As for the vaccination thing...well, Julia had her 5 year shots about 3 weeks ago and well...don't know if you saw my post on the yahoo group. Didn't even think about delaying them at the time, Doh. This stuff is just beyond exhausting.

blogzilly said...

I stay away from the Yahoo group cause I get a headache when I try to read it, something about the layout just strains my eyes. Lisa...PLEASE don't say there was a relapse?

Danielle as far as the percentage drop, yeah I think it is a big drop, and Bennett's drop has been big too. Maybe it's med's, I dunno, maybe it has something to do with the brain...hell for all I know maybe it's Life's way of slowing down his size since his mind isn't developing as fast, some sort of cosmic balancing act. Who knows?

But yeah, I don't blame you for giving it a lot of your thought time. (Notice I don't use the word 'obsessing' about it? I don't think that word applies to people like us anymore.)

Sophie's Story by Elaine said...

Can I just reference your blog as my own??? Because our lives are so parallel. Sophie just had her 5 1/2 year well visit checkup (she goes every 6 months) last Friday. I decided to let her get the varicella booster. But it is SOOOOO much easier to say yes when your child is having seizures every single day. I figured...get them now so I don't have to worry about them when she is seizure-free again :) But we got an exemption from ever having to get the DTaP vaccine again (she hasn't had that one since she was 6 months old). And Sophie is also doing much better with the blood pressure cuff and ear scope. I can talk her through it so she doesn't flip out. But laying down on the exam table...forget about it. Full on out screams.

happy's mommy said...

Lisa...sucks. Period.

Ken...I do like the free obsessive parent pass ;)

And Elaine...WOW. Sophie flips a lid over laying on the table too?! It's just SO crazy. I just want to know WHY???? He lays down just fine in his bed. But lay him down to change his diaper...forget about it! Even worse on the doctor's table. No talking him down from that... Oh well. Maybe someday we'll know... Btw...xoxo I feel like I haven't talked with you in AGES!


Kevin Jordan said...

My son Zac, who is 2 1/2 years old with CP hates to lie down on things on his back as well. Changing table, on the floor, especially doctor's offices. I think maybe he feels like it isn't secure, like he is going to fall or something. He just seems to get really scared. Weird.

KC's Warrior Mama said...

KC hates to lay down too! On the table, and to be changed. I too continue to remind him that if he chose to use the potty like the four year old that he is, he wouldn't have to endure the whole ordeal :) He takes everything I say with a grain of salt, so you can guess how well that works. About the vaccines...I second everything that Ken said. In fact, his sixth or so paragraph is something I have said many times, about each parent having to choose. I must say though, I am extremely jealous that some of you have found pediatricians that are ok with waiting. I have been kicked out of several offices for refusal to do it, and another office wanted me to sign some form saying I am volunterring to put my child at risk. Grrr..Really? Do you think I am making this extremely difficult decision because I WANT to put my son at risk. I wish I could find a doc that would hear me out on the whole issue, but finding that on medicaid in Illinois is not happening. One more year, and I will graduate and then I can take him to the Naturopath that I really want to see anyway :)

Jacob's Mommy said...

Jacob too. Changing table and tub especially. He hates it when we shampoo his hair sitting up and has always hated putting on and taking off shirts over his head. Vaccines? God I just don't know. I had to make an annotated calendar to see when he had well visits (and vaccinations) and when he developed respiratory infections, ear infections, seizures, etc. I even color-coded antibiotics by type and duration and I started to cry when I could visually see what has been going on with him. I was so focused on seizures that I paid little attention to other minor illnesses and left that to his pediatrician(s). (Which is why I have now left that practice.)

happy's mommy said...

Kevin...Trevy too. It is weird. I would think by now he'd know the routine (especially with the floor which is where we change his diapers) and know mommy's going to keep him safe. Sigh...

Karen...I am so sorry that you have to fight over yet one more thing. It sucks...

B...I should send you all my record and let you make me a color coded chart. I could never be that organized on my own. But then...maybe I don't want to see...

I'm SO glad you left that practice. I hated to be so dogmatic...but really...I haven't had a good experience with them. I hope you liked Dr. Peltz though!


Anonymous said...

This discussion is very informative and lively. My late comment will be about what I know...position changes. I am a big advocate of diaper changing in standing.

I wrote about it here (near the end of the post):

What I forget to mention in that post is - try to have the child face a wall, hands on the wall, parent working behind the child. A mirror or other distraction can be on the wall at the child's eye level.

I do think there may be a vestibular (sensory) discomfort from laying down but that would near impossible to support with 'facts'. You all are doing a great and difficult job interpreting your child's behavior.

I also think nutrition has an effect on growth. I wrote as much as I know about that here:

And, I think 'the brain' has to do with (lack of) growth. The pituitary gland is in the brain. Can you ask your MDs about the effects of meds and seizures on that gland?