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PANDAS and siblings


I hesitated to put this picture on this blog but I feel it is the “unspoken” story. This is in honor of the siblings who suffer along with the child with PANDAS. This is a picture of our daughter taken 3 weeks after joshuas first ivig treatment. She is 4 years old in this picture.  Maybe it is because I am her mother that I see it.  He is reading a story to her. Prior to this,  she could hardly get near him without some physical altercation.  We could never leave them alone together.  The look on her face just says it all..”I have my brother back..don’t care what he’s reading. .I’m close to him and he’s ok”

Siblings bear a large part of the damage done by this preventable,  treatable disease.  She is a master at decompressing him and redirecting him….just wish those were skills she didn’t have to learn this way.

Joshua is doing great. …about 90%. We will push for the last 10. We won’t give up! !

5 Responses to “PANDAS and siblings”

  1. Sirena says:

    I know EXACTLY what you mean! Our son got sick with pandas almost 1 year ago at age 6. His little sister is two years younger and it has been so hard on her. She just wants him to get better. I recently took a photo of my kiddos who fell asleep snuggled together on the couch — post ivig/solumedrol. People have no idea…

  2. Debbie says:

    That is so beautiful. We are in this at the moment and youngest sibling is having a tough time. Heartbreaking, thanks for sharing xx

  3. Jessica says:

    We are considering IVIG for our 6 year old son diagnosed with PANDAA through the Cunningham Panel. Antibiotics were helpful to a point but then we plateaued. One of his siblings had strep a few weeks ago and we’ve had a backslide that he’s having trouble recovering from. Any feedback about IVIG experiences would be appreciated. Thank you!

    • Jessica says:

      Sorry for the typo, PANDAS :). Thank you for this website! We are based in New York and happy to talk with any parents also seeking support or to help as research participants.

  4. C B says:

    I’m wondering if anyone has any suggestions on how to help a sibling of a PANS child deal with PTSD and sleep trouble?

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