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Old 07-18-2010, 10:17 AM
Bearflag70 is offline
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My baby girl has Spinal Muscular Atrophy (SMA)


At her last doctor's appointment, she was in the 94th percentile of dome circumference for her age. Big heads run on my side of the family.

We give her "tummy time" on her belly, but she can't lift her head under her own power. She tries but her little neck can't do it. She wiggles a round in a face plant position then gets frustrated. Apparently, most babies can do that by now.

She's otherwise happy and healthy. We haven't been back to the doctor, but she didn't seem concerned at the last meeting.

Last edited by twickster; 11-20-2010 at 07:34 AM. Reason: Changed thread title at request of OP
  #2  
Old 07-18-2010, 10:42 AM
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If she can't really move her head very well on her own, I would encourage you to make sure she has equal time on both sides and lots of time being held. My daughter had plagiocephaly. It seems to be a self worsening condition. Once a f lat spot develops she'll favor that side and it'll get works....but fear not, 3 months in a $2800 DOC band will fix it.
I do blame us (her parents) partially for it. They said she had torticollis which means one of the muscles in her neck was slightly shorter then the others so she always favored one side. But we did leave her laying down A LOT and I have to assume that was part of it. In fact, I believe the PT person said they started seeing a lot more of it when people started switching to having kids sleep on their back.
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Old 07-18-2010, 11:05 AM
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Never heard of plagiocephaly.

Read some websites ... the back of her head is a bit flat.

Her next appointment is at the end of July. I'll have to ask about it.

Last edited by Bearflag70; 07-18-2010 at 11:06 AM.
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Old 07-18-2010, 11:22 AM
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Take a look at this site. The PT we used to have it corrected uses this method. From what I understand this is the way to get it fixed, but there aren't a lot of people that do it, so you might want to see if there's one in your area. If you were to need one, you'll be at the PT alot. I think we were there once a week for 3 months. Luckily the one we used was about 40 minutes from our house (and close to my parents house, so it worked out). But I know there were people that were coming from an hour or two away.
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Old 07-18-2010, 11:26 AM
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I would suggest taking her back to the doctor just to check. My son's head grew a lot between 6 and 9 months, but he'd had a CT scan at 2 months, because it was a little bigger than average, and they said there was nothing wrong. So I didn't worry about it, I thought 'well they said there was nothing wrong', but there was something wrong, and they had missed it. Better to be safe than sorry.
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Old 07-18-2010, 12:26 PM
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OK thanks. I will ask.

Looking at the websites, my baby's head is symmetrically flattened in the back. Looks like it usually can be corrected with different sleeping positions and whatnot, especially since she's not quite 4 months old yet. Hopefully, it won't require more.

ETA: Looks like side sleeping support things are sold at Target.

Last edited by Bearflag70; 07-18-2010 at 12:27 PM.
  #7  
Old 07-18-2010, 12:34 PM
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Brachycephaly

Hmmm...
  #8  
Old 07-18-2010, 01:04 PM
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A sling is a great way to help prevent flat spots, encourage neck development, and make your kid more coordinated and possibly smarter, without keeping the carrying parent from getting anything done. Both my babies loved being held upright in the sling with their tummies against my chest, splayed out like little frogs. You can pull up the sling so it supports her head until she gets the hang of it. It keeps your hands free so you're less tempted to let them lie in a baby seat or swing all the time so you can get chores done.

I also agree - keep up with it with the medical folks, just to be sure. Probably nothing, but best to attend to it to be certain.
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Old 07-18-2010, 01:47 PM
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Ouch. That must make giving birth extremely painful.

Quote:
At her last doctor's appointment, she was in the 94th percentile of dome circumference for her age. Big heads run on my side of the family.

Last edited by aceplace57; 07-18-2010 at 01:47 PM.
  #10  
Old 07-18-2010, 01:51 PM
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Ouch. That must make giving birth extremely painful.
Yeah. Thankfully, her head was elongated more at birth.
  #11  
Old 07-18-2010, 02:45 PM
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Her head is filled with braaiiins!! Keep her away from zombies.
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Old 07-18-2010, 04:55 PM
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We got the sleep position pillow and she's laying on her left side now. She's fed and not complaining at all.

Her head is the same shape as before, but it's only been 5 minutes.
  #13  
Old 07-18-2010, 06:51 PM
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As a parent of a big headed 6 year old (his head is bigger than his mom's already) and normal headed 8 year old, I am going to give you something else to worry about as the inability to lift her head will pass quickly.

Make sure her facial muscle tone is good as she grows up (bad muscle tone leads to speech impediments etc.) In retrospect, there were lots of early signs (drooling, not chewing food well), but due over development of his neck muscles and his ability to make the proper sounds to "speak" with his larger mouth without moving much, when it came to complex sounds he had/tried to do everything with his tongue. Two years of speech therapy later and he is speaking well now, but still needs some reminders some times.

The speech therapist told us that his problems are often seen in big heads who just don't exercise their mouths (and heads) in the same way as other people. I don't have a good cite other than n=1 and the explanation of two speech therapists, but if it makes her future life better, I hope early warning helps.
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Old 07-18-2010, 07:45 PM
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Nothing like the Internet to scare a mother to death
  #15  
Old 07-30-2010, 12:08 PM
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Going to the doc today.
  #16  
Old 07-30-2010, 01:06 PM
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No medical advice one way or the other, but big heads are a family trait here as well. My mother says that when she was pregnant with me, at the age of 35 which worried her quite a bit, the ultrasound showed a very large head and the tech was a bit concerned. My mother said it was the one thing she didn't panic about, because, as she said "If your father had been there it would have all made sense." (My father has a very large, round head. At least mine isn't as round.)

I remember buying a new bike helmet when I was around 14. The salesman asked if we were sure I needed an adult size, since I've always been really short. (Probably under 5' at the time.) He picked up the small, and it just perched on top of my head. I ended up leaving with an adult large helmet. I still remember the embarrassment of being a small person with an enormous head.

So yeah. I hope very much there are no problems, and that the worst you'll have to deal with is finding hats and helmets large enough for your daughter. (I took up knitting because it's the only way to get a toque that covers my ears.)

Last edited by Sonnenstrahl; 07-30-2010 at 01:07 PM.
  #17  
Old 07-30-2010, 04:21 PM
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Doc said babies with big heads tend not to roll over or lift their heads as much, so they tend to get flat spots in the back more. Just keep her day naps on her sides and the head should even out. Corrective helmets is going too far.

Last edited by Bearflag70; 07-30-2010 at 04:23 PM.
  #18  
Old 07-30-2010, 04:27 PM
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However, doc was concerned about a serious condition, but wouldn't say what it is. We go back for tests today. Trying not to freak out.
  #19  
Old 07-30-2010, 04:46 PM
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Quote:
Originally Posted by Disheavel View Post
I don't have a good cite other than n=1 and the explanation of two speech therapists, but if it makes her future life better, I hope early warning helps.
n=2. Our speech therapist never connected the two things for us but my son has a large head (We called him "the unnaturally large-headed baby" as a nickname) and he has poor muscle tone in his mouth, was a sloppy nurser and has needed a few years of speech therapy.
  #20  
Old 07-30-2010, 05:55 PM
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Don't worry, I'm sure she'll grow up just fine and end up looking something like this.
  #21  
Old 07-30-2010, 09:30 PM
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Ouch. That must make giving birth extremely painful.

...
I'm not Bearflag70 but as the mother of a big-headed baby... yeah, it does. :::wince:::

BF70, let us know when you hear back about the assorted tests!
  #22  
Old 07-30-2010, 10:40 PM
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I'm glad that you made the right choice to check into some more with her doc- let us know how it goes.
  #23  
Old 07-30-2010, 10:49 PM
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fuck. fuck. fuck.

need lab test to confirm.

fuck.
  #24  
Old 07-30-2010, 10:51 PM
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We're here for you, whatever small consolation that may be.
  #25  
Old 07-31-2010, 01:23 AM
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My wife is asleep but I can't fall asleep yet.

Office diagnosis: Spinal Muscular Atrophy

Genetic disorder - degenerative, leading to increased complications over time

Life expectancy: Maybe 2 years.

This is just horrible beyond words. Our baby girl.
  #26  
Old 07-31-2010, 01:28 AM
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Well I was going to make a So I Married An Axe Murderer joke but I'm not now.
  #27  
Old 07-31-2010, 01:46 AM
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Oh no - you poor people - you, your spouse, your daughter. That is just so unhappy making. I wish you all the strength possible.
  #28  
Old 07-31-2010, 05:53 AM
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Oh shit.

Damn, I am so, so sorry.
  #29  
Old 07-31-2010, 07:38 AM
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Oh no. My god I am so sorry. That is terribly unfair. My heart goes out to all three of you.
  #30  
Old 07-31-2010, 08:46 AM
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That's awful & my thoughts are with you. However, in case you haven't thought of it in the wake of bad news, make sure you get a second opinion from a specialist. In a quick Google search there seem to be several support groups. Take advantage of them - that's why they're there. They should be able to help with specialist referrals in your area.
  #31  
Old 07-31-2010, 01:16 PM
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Oh, Bearflag70, my heart goes out to you. I keep typing lame things then erasing them, this is too awful for words.
  #32  
Old 07-31-2010, 01:26 PM
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That's just awful. I'm so sorry. My thoughts are with you, the baby and your wife.
  #33  
Old 07-31-2010, 01:36 PM
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Fuck, Bearflag70. There are just no words. And some kind of internet hug is just insulting. Thoughts are all I have for you.
  #34  
Old 07-31-2010, 01:38 PM
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You and your family are in my thoughts. I'm so sorry.
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Old 07-31-2010, 02:06 PM
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My heart goes out to you, your wife and you baby girl.
  #36  
Old 07-31-2010, 02:27 PM
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Oh my god. I'm so very, very sorry.
  #37  
Old 07-31-2010, 02:51 PM
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Oh no. I have no words. I am so, so, sorry.
  #38  
Old 07-31-2010, 03:48 PM
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I am so sorry. Words aren't enough, but know that a stranger far away shed tears for all of you.
  #39  
Old 07-31-2010, 05:20 PM
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I am so sorry. Words aren't enough, but know that a stranger far away shed tears for all of you.
We are not strangers here, you have friends.

I'm going to go change the thread titile now to forestall any more jokes, even from those who are normally decent posters but who, out of carelessness, might drop in to post another joke without having read the entire thread.
  #40  
Old 07-31-2010, 05:29 PM
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I am so sorry to hear that.



Your poor family.
  #41  
Old 07-31-2010, 05:35 PM
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Bearflag,

Get another opinion. It can't hurt. Diagnoses are not always 100% accurate.

Good luck.
  #42  
Old 07-31-2010, 05:47 PM
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Joke removed
Moderator Note:

EvilTOJ

Your sentence is its own contradiction; by telling us what you weren't going to say you are still saying it. This is a devastating situation for the OP and your joke borders on the jerkish. Don't do this again.

Everyone else: I hope I don't need to remind anyone else not to do this, in this thread.

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Last edited by Spectre of Pithecanthropus; 08-01-2010 at 01:24 PM.
  #43  
Old 07-31-2010, 06:06 PM
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Thank you all for the kind words. My wife just went in for a nap. The baby is fed and asleep. I just had lunch.

We are spending our time in sorrow, in shock, learning about the condition, seeking support, spending time with family, and holding our little owl. (We picked an owl theme for her nursery and we hoot at her to try to get her to say who who who.)

We got a hold of an SMA support person who is going to put us in touch with others in our area who have been or are going through it. We could use the support.

My wife is a teacher and school starts up in a few weeks. She's afraid she won't be able to go to work, especially knowing she has a baby at home in possibly in her last days. Our finances will completely fall apart if that happens, so I don't know what to say about that right now.

I am self employed and can't take time off. So, I'll have to deal with that somehow.

The person we spoke to for support said her SMA baby died at age 2 months and that was several years ago. She did not want to take action to extend her baby's life knowing the quality of life for the baby would be bad.

She knows of someone else who's baby had pneumonia as a result of SMA. These parents had to decide whether to treat the pneumonia and provide medical support or whether to let the child succumb. They decided to give all kinds of medical support, and that child is now 14 years old. However, the child is pretty much completely physically disabled, on a ventilator, and can't talk, despite being mentally alert. She said that those parents question whether they would have made that same decision if they had to do it over.

If we had to decide today, we agreed to let nature take its course.

Meanwhile, all we can do is go through with the blood work. We think that will just confirm the tentative diagnosis though.

Our new SMA contact said some other parent had a tentative SMA diagnosis, but the blood work came back negative. However, that baby had a different fatal condition instead.

All we can really do is love our little owl and each other as much as possible each day.

ETA: Baby's hungry. Feeding time!

Last edited by Bearflag70; 07-31-2010 at 06:06 PM.
  #44  
Old 07-31-2010, 06:12 PM
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Well, shit, that is fucking awful. My thoughts are with you both. Can't think of much else to say, really.
  #45  
Old 07-31-2010, 06:13 PM
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Well, shit, that is fucking awful. My thoughts are with you both. Can't think of much else to say, really.
Not much more that can be said. The thoughts are appreciated more than the words.
  #46  
Old 07-31-2010, 06:14 PM
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Bearflag,

Get another opinion. It can't hurt. Diagnoses are not always 100% accurate.

Good luck.
Early diagnosis has to be a good thing. I'm so sorry this is happening - what a shock.

Last edited by Bam Boo Gut; 07-31-2010 at 06:16 PM.
  #47  
Old 07-31-2010, 06:17 PM
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Bearflag,

Get another opinion. It can't hurt. Diagnoses are not always 100% accurate.

Good luck.
The pediatrician spotted it.

The neurologist confirmed it.

The blood work should be definitive.

We could ask for another round of blood work, I guess.
  #48  
Old 07-31-2010, 06:23 PM
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I am so sorry. Words aren't enough, but know that a stranger far away shed tears for all of you.
Thank you.
  #49  
Old 07-31-2010, 06:23 PM
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I hope the tentative diagnosis is wrong. It happens all the time. I hope it happens for you, too.

Oh. Your post about the pediatrician and neurologist wasn't there yet when I opened the thread. :/

Last edited by Silver Fire; 07-31-2010 at 06:24 PM.
  #50  
Old 07-31-2010, 06:35 PM
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There isn't really anything that I can say. I'm really sorry. You and your family are in my thoughts.
__________________
IAAL but I am not your lawyer, you are not my client. This is not legal advice. I am not licensed in your state, I may not even know where your state is. Go see a lawyer in your state.

Taking advice from a stranger over the internet is not a good idea. To the best of your knowledge, I could be a monkey randomly hitting keys in the right order in while flinging excrement at his handlers.
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