Pandasmom's Blog

living with PANDAS, not the furry ones…

Trigger point…for mom November 3, 2012

Filed under: Uncategorized — pandasmom @ 12:23 am
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A has a history of bloody noses.  They will come on and she will get 1-2/day for about 2-3 weeks and then they go away for several months.  Lately, they have become extreme and she will pass clots of blood while they flow on and on for 20-30 min.  We have talked about getting it cauterized, but our ped feels that the cauterization won’t hold in a case like A’s and we would have to do it repeatedly.  For that reason, we have held off and tried every other remedy we can think of.  We put a stronger version of neosporin in both nostrils each night while she sleeps.  She has a humidifier and she takes Zinc daily.  But there is no reprieve.  We took her to the ENT on Monday fully expecting for him to cauterize her nose.  Instead he gave us a pamphlet on what a bloody nose is and how to stop it.  He said to come back in 3-4 weeks.  😦

Yesterday we got a call from A’s school that she had another bloody nose and we needed to come get her.  J and I both took her to the hospital planning to cauterize her nose and put an end to this.  We were in a room for about 4 hours.  Something in visiting the hospital triggered an emotion in me and I feel like I went into shock.  It wasn’t a panic attack but something definitely happened to me.  It had absolutely nothing to do with our reason for being there.  I could have taken A in for a paper cut and still felt the same way.  The layout of the ER was almost identical to the ICU A was in when she has her Plasmaphoresis.  There were all the regular beeps and alarms going off and it was way more than I could handle.   J tried to remind me that this wasn’t about me but I simply couldn’t shake it.  Pretty instantly I got a migraine.  I was happy to return A to school because I clearly was not ok.  I went for a really long walk, tried meditaing and finally went to bed for the night.  But it’s still with me today.

We haven’t been in the hospital overnight for about 2 years.  But there is still a trigger inside me that evokes extreme fear and anxiety.  I was and am really shocked that I reacted the way I did.

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