Pandasmom's Blog

living with PANDAS, not the furry ones…

I’m back October 5, 2010

Filed under: Uncategorized — pandasmom @ 2:50 pm

I had to take a break from this blog because it was way too Debbie Downer.  I had said in the beginning that I wanted this to be a place of hope where I/we chronicled our PANDAS journey.  Prior to the blog break, this blog was anything but a hopeful place.  I hope to have that change now.

Our circumstances have not changed at all, but my mentality has.  Since I last wrote, John and I completed our half marathon and are training for another one.  I’ve been listening to a LOT of music on our long runs and there is a song by Eminem with some very crass lyrics that really fuel me on.  But each time I listen to the phrase I feel I am adopting it as my motto.  The gist of the phrase is “Success is my only option, failure’s not”.  That sentence is WAY edited down, but you get the point.  Through my blogging break I have come to realize that indeed, success is the only option, it’s just that success may have a different definition than it used to have. 

We did have a MAJOR success for A and our entire family over the summer.  A was able to go 13 weeks between IVIG treatments.  It was such a long time that A felt the need to make a trip to the hospital just to visit her nurses.  We made cards, took cookies and had a nice visit.  Unfortunately, we ended up as a patient only 2 weeks later, but we survived.

We have also found another path that has been quite helpful.  We are on our second Naturopath and this one is a gem!  She is as helpful as our ped!  We’ve been seeing her since the spring I think and she has been spot on with what she has seen in A and what she has prescribed.  I must say that I was a bit skeptical of homeopathy prior to this ND, but no more.  I am a true convert after what I have seen.  In fact right now the ND has kept A out of the hospital for 2 weeks.  A is having a relapse right now and we can’t stop it.  But the ND has been able to keep it under control so that we haven’t had to be admitted yet.  I’m hopeful that we might pull through.

However, we just found out that C has strep!!!  And A has NEVER been able to recover without a hospital treatment once she has been exposed to a household member’s strep.  So, today is the real test!  C’s strep was just confirmed yesterday and we see the ND today.  I think we will either pull through within the next 48 hours or be admitted to the hospital.

Anyone who wants to pray: please put your prayers toward the ND so that she can make the best decision for A today and perhaps keep us out of the hospital!!


One Response to “I’m back”

  1. josh Says:

    Hope alls well. My little boy has PANDAS. His symptoms persisted, at lower levels, between bouts of strep throat. He then had an infected foreskin that set him off worse than the strep throat, which put me onto the fact that strep is endemic on the skin eg balinitis, impetigo etc. you need to treat every nick, scratch, scrape, scab, welt, mosquito bit, graze…down to the size of a pin with dettol cream twice a day. The augmentin doesn’t work for the skin stuff. I suspect this is where a lot of residual issues occur. Ive also had success with Olive Leaf Extract to prevent the strep throat, use as soon as they get a cold.. Other issue is the blood brain barrier. Try zinc (see Linus Pauling). Zinc also boosts immunity…helping fight off the infection. Low tech and cheap, but very effective. Good luck.

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