Question new issues?

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Question new issues?

Postby MommyToMyCuties » Wed Aug 19, 2009 11:58 am

So Natasha was diagonsed with CM1 in May, We saw Dr. Ellenbogen in July. She is scheduled for surgery Sept 8th.

Her headaches have got much much worse to the point were we can no longer help it by laying in a dark room, or with tyenol or motrin. So the doctor had called her in a script... Which will releive the headache but it makes her very very drowsie.

Now she is almost 7 has NOT have a issue with wetting the bed in over 5 yrs. She actually had the opposite problem she barley ever went pee (we had tajken her to the dr about not unrinating enough and everything was fine) Now for the past 2 weeks she has wet the bed and night and has been making frequent trips to the bathroom. I dont think its the meds he perscribed because she has only taken the 2xs (I only allow her to take it when I know the headache is NOT going to go away, she has little ones the are semi-manageable but the big migraines are what Im talking about.) and that was way before all this started to happen that she took the prescription med.

Any thought? Is this related? Has anyone had symptoms simliar? Should I call Dr. Ellenbogen? I dont know what to do...
DD-Natasha-7yr old with 21.40mm CM
www.caringbridge.org/visit/natashalowery
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Re: Question new issues?

Postby lttutrow » Wed Aug 19, 2009 12:22 pm

I would mention it to Dr. Ellenbogen. I don't understand all of the dynamics, but I do know it is related. My son ended up having a urodynamics study done, and it did show a small bladder size; however, our nsg. told us that if they had measured it's size prior to his surgery and compared it to after, it likely grew in that time because the CM can interfere with messages the bladder gets.
His CM has restored good CSF flow and reduced his syrinx, but when his headaches start now, he still has to make frequent bathroom trips. We've started seeing a cluster of symptoms when the head pain starts including frequency in urination.
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Re: Question new issues?

Postby jupes » Wed Aug 19, 2009 10:18 pm

Hello!

I too would mention this to Dr. Ellenbogen. As mentioned in the previous post, it is probably related to the CM and the bladder not getting the message. My DD has not had any urodynamic testing done yet but is having some urinary symptoms. Our NS has mentioned that this could be r/t the CM/SM. She has more of an underactive bladder problem rather than frequency and will go several hours without urinating. Sometimes she is unaware she has to go and that is when an accident will happen!

Hopefully this and other symptoms will resolve after the surgery! Pray all goes well! Keep us updated!

Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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