CHIARI AND PARENTHOOD

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Comment by Parker's Mommy on March 12, 2012 at 5:04pm

How is your sweet little on doing?  How are you doing?

My son, who is three, had a MRI Jan 4^th 2012 and no sooner than I entered the door carrying a groggy boy the MRI dept. called & said our son has Chiari Malformatyion of 16mm & requires an apt. w/ chief Neurosurgeon the following week.  On Jan 4^th 2012 our 3-year-old son had On Feb. 10^th Parker had a Craniotomy (removal of bottom portion of the skull) & decompression/removal of the cerebellum that was protruding through his spinal cord opening. The surgery also entailed removal of the majority of the top vertebra in order to allow more room for the bottom portion of his brain. They opened the Dura & patched it w/ a synthetic patch to allow for more room. Cerebral Fluid Flow was restored as well. It is not that his brain it too big but his skull is too small. Nuero assures us he was born w/ this condition & thankfully we found it when we did, as paralysis is inevitable w/o surgery due to the 16mm size of malformation. I am not going to sugar coat things surgery was rough 2.5 days in ICU & 5 days in the hospital. Twelve days later he started to run a 104.3 temp & back we went to discover –luckily- he only had strep not meningitis as that is a slight possibility during healing from this surgery. Unfortunately, the girls (his sisters 5 & 6) have caught strep (Mom too) however, it could always be worse. He is still healing and will continue to for 6 more weeks. Our goals currently for his recovery are pain management, playing quietly for 30 minutes & than resting his head/neck. His forehead and tummy hurt him everyday although is no longer on narcotics to reduce pain. Simple old Tylenol & Motrin. The operation site is close to the nausea center hence the nausea. Light bothers him alot & we draw the blinds during the day & when has headed out for follow up apt. sunglasses are worn. He has good days & bad days it is all part of the healing process. We are so blessed! Please pray for a speedy and successful recovery for our brave superhero! He has an amazing attitude about this entire ordeal--- he truly is so brave!

 

Ohhh--- thought you could relate to this……..He was born with a large birthmark on his back that is close to his spine. It started growing hair and is becoming plumper. Neurosurgeon wants another MRI prior to surgery to determine if Tethered Cord and any pockets of fluid. Feb. 6 is his MRI of spine. My little guy was born with issues, 5 weeks early, 5 days in NICU, bagged, tubed, we held him upright to sleep until he was 18months due to breathing issues, trancheamalacia, hypotonia, ptosis, reflux, developmental delays, frequent hives, choking & swallowing issues, 3 sets of tubes in ears, adenoids removed, rocks a lot of the day (put a whole in our family room wall as he rocks so intensely prior to surgery), vestibular seeker, mild heart murmur, wears braces of feet/legs SMO’s, W sitter, frequent croup, walked 6 months late, receives OT, PT, Speech, & sensory integrations since 6 months, but is a bright little guy..

Thanks,

Kim

Comment by Amanda Cofhlin Druery on February 17, 2012 at 9:39pm

My 4 yr old has trouble finding his words sometimes and he gets really frustrated.  I thin this has to do with the Chiari, but as a parent you never know if it's just the age.  I know the diagnosis is hard to swallow, just remember you are not alone.  I get though each day with lots of prayer and faith that God is in control and NOT me!!

Comment by pmurphy on June 10, 2011 at 6:36am

We just found out my 6 year old son, Hunter, has Chiari.  He had mri on monday and we received a phone call to come into neurologist office on thursday. we found out that he has a hole from his spine to brain and fluid...chiari malformation.  It's all new to me and i'm confused.  we've been on a roller coaster with him his whole life.  He's a preemie twin (34 weeks), nicu for 3 weeks for feeding and growing, then we noticed he couldn't "see' us  so we thought he was visually or hearing impaired (but wasn't ), he would cry a lot as an infant !  at 11 months, he had a skull fracture at daycare so he was put on tbi registry. he began to bang head before tbi and after tbi ( he even wore a helmet to bed).  we had to rule out autism when we noticed he wasn't speaking.  he had sensory integration therapy.  NOw he's in resource for delays, occupational therapy for fine motor skills, speech therapy.  He's been seeing a psychiatrist and therapist for mood disorder (which strongly looking at bipolar).  Recently, his cycle of stuttering has become severe.  He can't get his words out and cries because he can't remember his words.  this is what led to mri.  eeg will be on monday.   waiting on neurosurgeon appt.   Do your children have any speech and mood behaviors with their chiari?  also, he's uncoordinated but lately it's become worse. 

sorry it's long, but this is so new to me! 

Moderator Comment by Abby on June 1, 2011 at 8:26pm

Lilly's Mom,

Good article

The%203-year%20old%20who%20couldn%E2%80%99t%20sleep%20_%20Health%20...

 

Moderator Comment by Abby on May 26, 2011 at 12:38pm

Kindergartner-to-have-surgery-for-rare-disease.htm

This was a very good story.