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Forum: Children with Special Needs

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  #1  
May 15th, 2009, 05:11 AM
Ditzzy's Avatar Stupid Lamb;)
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Special needs kids are no strangers to tests. They are just part of life, I guess. What tests have your LO(s) had? Any test that was hard on them? What tests do you consider most important or just a waste of time?
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  #2  
May 15th, 2009, 06:06 AM
quietsong's Avatar Just Another Slacker Mom
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I couldn't even begin to list the number of tests he received in his first week while they were trying to diagnose him. They were countless, everything from blood work ups to some basic genetic testing, a spinal tap, I don't think they even really told me what they all were.

He's also had more CBCs than I can count, the most recent being last month. We also test occasionally for CMV shedding to see if he's still contageous, which as of 9 months he was. (I haven't been able to get a successful urine sample for his 12 month test! Doh!)

On the neurological side, he has had 2 MRIs, one a couple weeks after birth, the second in September to follow up on the findings and see if there had been any further damage. He also has had 1 CT Scan.

On the audiological side, he's had countless BOEs (behavioral hearing tests), tympanometry (testing vibration of the ear drum), and OAEs (testing the subtle sounds & "echoes" normal hearing ears give back). We were lucky to only need one ABR (Auditory Brainsteam Response), the 2-3 hour hearing test typically done under sedation, before getting a confident diagnosis.
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  #3  
May 15th, 2009, 06:17 AM
Tara0906's Avatar Mega Super Mommy
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My son has had 3 MRI's the worse part was the IV each time.

3 Spinal taps when he was just 3 days old and it was horrific for me and his cries that night still haunt me. The stupid ER dr. couldn't get any spinal fluid. I didn't even want him to try but he said he needed to do it ASAP and it was a bad choice to wait for a ped. to come down to do it. The ped. had to come from another hospital 2 hours away.

EEG was painfree. But tell that to a two year old with BAD sensory problems..getting goop in your hair, having things taped to your head and being held so tight by a stranger and not being able to sleep. It was hard on Justin.

The worse would be all the VCUG's he had done. Having to cath. a little boy and go though that entire test is traumatizing on a little boy. It was horrible watching him scream, cry and holding him down.

He has also had Swallow Studies, Hearing test, blood test and 100 different kind of evaluations.
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  #4  
May 15th, 2009, 07:11 AM
Ditzzy's Avatar Stupid Lamb;)
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Ava has had:
2 MRI's (head, spine) under GA
CT under GA
video swallow study
3 Flexible bronchocopies both under GA
rigid bronch under GA
endoscopy GA
various Biopsies (airway, lungs and GI
2 lung Lavages
Impedance probe (PH)
hearing tests
various bloodwork
Sleep study

I know I'm forgetting some. My mind is gone today. Thankfully all the IVs last week were put in after she was asleep. We are on phase 2 of testing now. blah....

Tara, don't they put them to sleep for spinal taps? That's so heartbreaking.
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Last edited by Ditzzy; May 15th, 2009 at 07:23 AM.
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  #5  
May 15th, 2009, 09:00 AM
docsmomma's Avatar Platinum Supermommy
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Blood: labs weekly for 5 months now, plus the ones done inpatient. Clotting tests have been done weekly but will now be done every 3 weeks, unless his platelets drop too low.

Scans:
1 full body skeletal survey, 1 brain MRI, I think about 6 x-rays, 7 CT scans w/ contrast of his chest, 6 ct scans with contrast head/brain (usually done at same time as chest), 1 CT of temporal and mastoid (done with head), 2 CT scans of abdomen (done with chest) 1 oral contrast for abdomen scan.
Other: 1 biopsy done under local anasthesia. A full developmental study. Hearing tests, vision tests.

He has also had 1 blood transfusion.
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  #6  
May 15th, 2009, 10:50 AM
Tara0906's Avatar Mega Super Mommy
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No, they didn't put him to sleep.
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