Worry

So. . . I’ve already mentioned the problems we’ve been having with Charlie and the tantrums. Well, I’ve been really diligent and we’re having less, but the Hubs and I are starting to wonder if maybe it’s something more than the terrible twos.

You see. . . he’s never inconsolable. . . for long. That was the big watch word when they discharged us is the very beginning–inconsolable. And we’ve been very good about bringing him in when it gets like that.

But it does seem a bit weird to us that kid who was formerly a human beam of sunshine. A child who is entertained by a particularly musical paper crinkle and who jumps for joy at the sound of his relatives’ voices is suddenly less so. I find myself apologizing a lot because he’s “tired” or “not in the mood” and that’s just so strange.

Tonight was another mega-blow up. Night time has been a little tough, but tonight we stayed late at my MIL’s house watching The Closer and when we got home we put Charlie straight to bed. Big mistake. The tantrum went on and on and finally we pulled him out of bed, did the evening routine two hours late, and put him in bed. Still rough, but better. It worried both of us, though. So the Hubs and I sat down tonight and googled all sort of things with regards to his little brain and we came up with this very interesting statistic: %30 of kids who experience shunt failure have mostly behavioral symptoms. Not the throwing up, the seizures, and the lethargy that they warned us about. At the end of last month the neurosurgeon adjusted Charlie’s shunt to a setting that he preferred.

So tomorrow we’re going to hit the ground running. See if we can get an appointment with the neuro for Wednesday and if not, we may just take our happy asses down to the emergency room and hang out until we get some service.

Could it be the shunt? Maybe. It could also be totally normal childhood development. I don’t normally complain about having a kid with special needs, but at times like this I would LOVE to know someone else in the same position. Someone I could call on the phone to see what they think. But for now. . . we’ll just worry.
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Comments

  1. kimblahg says:

    I understand wanting another parent to relate to in these situations- is there a msg board for parents of other kids with shunts that you could get feedback from? I hope it turns out to be just 2 year old behavior because it does sound a lot like a toddler tantrum- particularly since his routine was a bit off this evening. Good luck, hope it was just him asserting his 2 year old self-loudly.

  2. White Hot Magik says:

    My first thought is that I am glad he is doing exactly what he should do at his age but I can see how it would make you concerned about the shunt being a problem. While I can't relate to Charlie's special needs I will admit to wondering the worst when dealing with those lovely terrible twos. Kudos for not making excuses and tolerating the behavior, hardest part about motherhood.

  3. I would be worried in your place too. I hope you're able to get some answers quickly.

  4. blairspage says:

    TRUST your motherly instinct! If you think it needs to be checked out then have it checked out. It never hurts. And, if it needs to be adjusted back then you would want that done before something more serious happens!

    I hope it gets better! BIG HUGS – Tiff

  5. Small Town Girl says:

    Good for you guys for looking for some answers. Either way, you'll be happy you did that. I'll pray for the best!

  6. Melanie says:

    I hear ya. Although I have no experience with a shunt, every time something new happens I wonder if its typical or not with a special needs kid.

    Keep us update and hopefully its nothing but terrible twos…

  7. Nathan Charlan says:

    My Oh My, this sounds just like our little man. I swear about a week before he turned 2 "he turned 2!!!!!"
    The tantrums began and he could scream for hours around bedtime and became more aggressive with people and not as easily entertained.
    After wondering like you are for awhile and watching our friends "typical" kiddos we see that it was/is very typical for his age. One thing that we did realize is that most of the aggression comes from frustration because of the lack of ability to communicate and not being able to move his body the way he wants to. They have so much more going on in those little brains than we realize and I would get angry too if I couldn't get my body to do what I wanted and even worse couldn't get my mouth to work so I could just tell you what I wanted.
    I really hope you don't find anything else wrong and its just that "typical" kid behavior that we all know and LOVE.
    Your family will be in our prayers.

  8. Wow, guys. Thanks for the words of encouragement. I appreciate it more than you know.

  9. Shannon says:

    I don't have any shunt experience, but I think you need to trust your gut. It sounds like something may be off (or it may be the "two's" that we are experiencing here) but whatever it is, I think it is safe to err on the side of caution. Best of luck!

  10. Rural Felicity says:

    I have more shunt experience than you want to hear about!! My words of advice? Make a list and pay attention. Doing a test for peace of mind is waaaaaay different than for a kid who doesn't have issues. It's as if you're sitting on the edge of your seat (and it sucks), but it pays off.

    G has had 6 revisions, and the behavioral was a biggy sometimes but not all times. Recently, his behavior stinks but thankfully (with tests), we know it's behavior. When he was two, though, it was the shunt. It's a tough job to begin with, and then ya get a shunt in the mix!! Isn't that fun?!

    Finding balance is key but so hard when you have they underlying issues. If you'd like to call me, I'd be happy to talk with you. Email me at joyjoie@gmail.com, and I will send you my number.

  11. therextras says:

    Looking for an organic (medical, if you will) cause if VERY astute in my opinion.

    And thank you for your reassuring comment on my blog – clearly people are less bloggy during summer, but will come out for you when you need them. Barbara

  12. sitting on the mood swing at the playground says:

    Hope you get an appt for Wed. I know in our house we can't vary the bedtime routine AT ALL or all hell breaks loose. Sending good thoughts your way…

  13. Jessica says:

    Paxson doesnt have a shunt and you are defintely right to have that checked out. But we have the exact same questions when it comes to behavior. Lately Paxson will have days when I seriously think he might be an angel. So cute and happy and wonderful. Then the next day I'm trying to figure out where this monster came from, he wont eat, or sleep, and he screams at us if we try to set him down for 1 minute. And I use the exact same excuses, "he's tired" or "not in the mood".
    My friends tell me that kids just have their good days and bad days. But I agree it is so much more complicated when they have special needs. I'm always wondering if its the siezure or the meds.
    Keep us posted and you have all my support.

  14. Geez–it must be so hard not to know whether the kid is just cranky or it's something serious–that's probably something you're going to deal with for a long time. And I do not envy you that worry. I'd never sleep if it were me. I hope it's just the terrible twos–but you can't bge too careful with him. Good vibes to you!

  15. Anonymous says:

    I have two 'normal' girls, but I had the same problem. Once they hit 2 1/2 they went from being absolute happy go lucky angels to these little monsters hell bent on getting their own way and making my life as difficult as possible. Of course altering the bedtime routine remains a no no to this day (they're now 7 and 10) If I keep them up past the usual bedtime, the younger one will have a fit..crying, whining, you name it..and it's all because she's tired. Check it out if your gut is telling you to do so, if nothing else, you'll have peace of mind. I ALWAYS go with my instincts. I think that is mostly age appropriate behaviour however, more than anything else.

  16. Gina (Mannyed) says:

    I hope you get some answers and of course, don't be shy about trying to get them. Just like you did right before Charlie was born.

  17. Hi Katy,

    I would go with your gut. You know what is normal and what is not. I hope that you get some answers and some relief. I know that it is not easy when a child doesn't communicate the way that other children do. Hope that you get some rest.

  18. AshleyS says:

    shunt malfunctions. ugh. any time Clayton has an off day or gets a weird look in his eye, I start thinking shunt issues. it's never far from our minds . . .

  19. I really, really hope, for you, that it's just a phase. That said, those can be the worst, because they last and last and last and there's nothing to be done but wait it out. My son is killing me with the screaming, particularly when he doesn't get his way. I noticed the same thing going on with my sister's daughter, too.

    By this time maybe you've had the appointment with the neuro(nuero?) surgeon and have been able to figure some things out, though. Hope Charlies' feeling better.