posted
My 6 year old daughter, who has been battling Lyme since the bgeinning of Sept., is having ongoing intracranial pressure problems.
She had her first spinal tap in sept, and pressure was so high it was unreadable until they let copious amouts of fluid out.
Her second tap, in October, after her 30 days of IV antibiotics, was 32 at opening, and they let out enough fluid to get it down to 17.
She's on Diomax to try and keep her CSF level lower, but has problems with fluctuating crossing of her eyes, one day she will wake up with them crossed really bad, then the next day it's better, then back to normal for a few days, then the corssing comes back again.
With the crossing of the eyes comes headaches, personality changes, agitation and anxiety.
Her neuro-opthamologist thinks she's having fluctuating ICP, and thinks that somehow the Lyme meningitis damaged her drainage system - something keeps clogging up or stopping up somewhere, causing her pressure to rise, then somehow it unclogs itself soon enough that she does't end up with a too-bad episode.
He is talking now about doing some test as in-patient at Johns Hopkins, where they put a 'bolt' in her head, and measure her ICP for a continous 24-48 hour period, and then possibly doing a shunt.
I am wondering if anyone else has a child who's had this 'bolt test' done, and if they had to have a shunt placed to help with ongoing ICP issues after contracting Lyme.
I didn't ask the dr too many details at the time, I was so shocked by hearing the 'bolt in the head' phrase, that I didn't want to ask anything more while my 6 year old was listening.
posted
My son had ICP monitoring in the summer. He had surgery to place a tiny monitor in his brain. His neurosurgeon didn't use a "bolt", he used a epidural sensor.
My son had a shunt placed about a year before this procedure was done. His constant, severe headache didn't reduce as much as expected with his shunt. He was hospitalized for 10 days for the monitoring and to try different settings on his shunt.
There are 2 components of PTC - headaches & vision problems (papilledema). My kids do not have the vision problems.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
Thanks pab. My daughter has both the headaches and vision problems. Right now we can tell when her pressure is higher because her eyes cross, and she gets very irritable, jumpy and has headaches. It is fluctuating 2 to 3 times a week.
She goes for a consult with the ped. neurosurgeon on the 22nd. keep good thoughts for us.
Posts: 6 | From Glen Burnie, MD | Registered: Sep 2009
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