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Old 08-21-2009, 09:04 PM   #11
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Re: motor delay and sacral dimples, when to worry?

Well my DS was super behind in motor skills too. He started sitting up unassisted around 11 months and crawled around 13 or 14 months and started walking at 16 months. he was floppy too. Now he is a 19 month old crazy boy that runs everywhere, he NEVER walks..lol. He had his forehead glued back together last month and this month broke his left arm! He never stops!

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Old 08-22-2009, 08:51 AM   #12
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Re: motor delay and sacral dimples, when to worry?

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You are right to worry about tethered cord mama. DD had a sacral dimple at birth that we called her second butt hole but the hospital ped and our ped dismissed it. DD's right leg is longer then her left and her right leg from the knee down is bigger in circumference as well. Her left foot is smaller then her right.

At birth her left leg was tucked up against her tummy which everyone said was normal. I didn't know anything about tethered cord but I knew something wasn't right. We took her to ortho but dd was really too young to do an MRI so ortho sent us to genetics. Genetics gave us the incorrect diagnosis of isolated hemi hypertrophy, meaning one limb bigger then the other. We had always thought of the left leg as her smaller leg and the right as her normal leg so it was surprising to hear her left was considered normal.

DD had to get ultrasounds of her tummy 4 times a year because kids with hemi hypertrophy can develop stomach ulcers. About 8 months after that diagnosis I noticed a hard lump under dd's sacral dimple and fluid leaking out of it. Of course, I freaked and called the ped right away. We took her in and they said have the upcoming ultrasound done on her spine too.

We had the spinal ultrasound but it was inconclusive, so we had to get an MRI. That was very scary since dd had to be sedated. We got referred to a ped. neurosurgeon (which is what you need, not a neurologist) and he diagnosed dd with tethered cord. She had surgery two weeks later, at 10 months, to de-tether.

Surgery went great and at almost 2 she can walk, crawl, almost jump, sort of run and she's doing so great. She's constipated due to the tethered cord nerve damage but she's able to pass normal stool with Miralax and so far no bladder problems but those could develop later.

Please pm me if you have any questions, I'm more then happy to share what I know. I also belong to a yahoo group of parents of tethered cord kids and they've helped so much. There's also another ds mama who's dd has tethered cord and blogs about it. There's resources out there if your lo is tethered but it's rare and hard to get diagnosed. Keep pushing and you'll get it figured out. Oh, if there's a Shriners in your area see if you can get in there.

Thank you thank you thank you for sharing that info. Is it ok if I post some pics of my son's dimple, and you can see if it compare's at all to your DD?




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I have no advice for you but could not read this and not post ((hugs)) to you!! Your situation sounds identical to a guy that works with DH. His DD is the same age as our youngest (16months) and is not crawling or standing at all. She just lays on the floor & doesn't really move her head or anything.. Apparently they are not taking her to any Dr because they feel she is just a late bloomer. I am going to keep an eye on your thread just in case there is some info I can pass along to them!

Lots of hugs again!!
Oh my gosh, I REALLY hope they take her in soon. At 11 months, I feel like *I* am pushing it, having waited this long. 16 months and just lays on the floor w/o moving head? Wow, there is definitely something wrong going on there and I hope you can convince them to have her seen. Do they not bring her to the pedi?
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Old 08-22-2009, 08:58 AM   #13
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Re: motor delay and sacral dimples, when to worry? *Pics Added in OP*

I just added some pics in the OP, to those of you who have any experience with this, let me know how these compare (deeper, more shallow, etc?)

Or alternately, if your child has these types of marks with nothing wrong with them!
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Old 08-22-2009, 03:08 PM   #14
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Re: motor delay and sacral dimples, when to worry?

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Oh my gosh, I REALLY hope they take her in soon. At 11 months, I feel like *I* am pushing it, having waited this long. 16 months and just lays on the floor w/o moving head? Wow, there is definitely something wrong going on there and I hope you can convince them to have her seen. Do they not bring her to the pedi?
Apparently they had an MRI done at around 12mths & it did not show a tumor which is what their pedi was thinking so they were told to find a physical therapist which I don't think they ever did.. My advice to them was to go to another Dr but these are the kind of people that are too busy with their drinks at night to worry about their child...
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Old 08-22-2009, 03:15 PM   #15
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Re: motor delay and sacral dimples, when to worry?

to the OP, you seem like you are doing what is best Mama!

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Apparently they had an MRI done at around 12mths & it did not show a tumor which is what their pedi was thinking so they were told to find a physical therapist which I don't think they ever did.. My advice to them was to go to another Dr but these are the kind of people that are too busy with their drinks at night to worry about their child...
Okay this makes me !!! I would totally turn them into CPS!!!! Their baby has a tumor, and they are ignoring it? What's up with some people????
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Old 08-22-2009, 03:30 PM   #16
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Re: motor delay and sacral dimples, when to worry?

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Thank you thank you thank you for sharing that info. Is it ok if I post some pics of my son's dimple, and you can see if it compare's at all to your DD?
DD's was more in the position of the first pic you posted but deeper, like the second one. I think I would push for a consult with a ped neurosurgeon or for an MRI if I were you. If it weren't for the sacral dimples I'd say your lo might be a late bloomer but if it's spina bifida occulta or tethered cord the longer you wait the more damage that's done.
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Old 08-22-2009, 04:16 PM   #17
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Re: motor delay and sacral dimples, when to worry? *Pics Added in OP*

my dh has the y shaped butt crack with the dimples, nothing wrong with him. he did have to wear leg braces when he was a kid though.
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Old 08-22-2009, 09:15 PM   #18
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Re: motor delay and sacral dimples, when to worry?

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Apparently they had an MRI done at around 12mths & it did not show a tumor which is what their pedi was thinking so they were told to find a physical therapist which I don't think they ever did.. My advice to them was to go to another Dr but these are the kind of people that are too busy with their drinks at night to worry about their child...
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to the OP, you seem like you are doing what is best Mama!



Okay this makes me !!! I would totally turn them into CPS!!!! Their baby has a tumor, and they are ignoring it? What's up with some people????
See above-it did not show a tumor
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Old 08-22-2009, 10:14 PM   #19
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Re: motor delay and sacral dimples, when to worry? *Pics Added in OP*

I have recently learned not to let the DR's take their time with these things. Because 7 dr's took their time, my DD's 5 month ear infection turned out to be a growing infected ( Thanks be to God non-cancerous) Tumor that has eroded the ossicles in her ear and she is having emergency surgery this Thursday to cut it out. The last ENT I went to made me wait two months to see him, then six weeks to see if the meds worked. If I had not DEMANDED a CT SCAN right away this thing could have eroded her skull and been growing into her BRAIN!!!! They did the CT Scan the next day after I demanded it and I called a Pediatric ENT who said it would be another two months before they could see her and DEMANDED an appointment sooner. They got her in three days after the ct was done.

You know what, the Pediatric ENT asked me why I waited so long to get her in to see him!!!!!!!!!!!! I could have punched him in the face.

I guess my point is. Don't wait. Be your child's advocate and DEMAND what is in the best interest of them. Don't let the Dr's EDUCATED GUESSES take over your gut feelings.

I truly hope and pray that nothing is wrong and that your child is just one of those happy watching. I just wanted you to know that it is ok to stand up for your child and demand action. You are paying for the Dr's visit and their time they should listen to you.
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Old 08-23-2009, 06:50 PM   #20
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Re: motor delay and sacral dimples, when to worry?

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See above-it did not show a tumor
Right - MRI showed no tumor & the pedi just said she didn't know -to see a specialist which they have not done... I swear.. you have to have a license to have a dog but anyone can have kids....
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