You should all feel very hopeful about healing

[PhillyPA]

My son, previously healthy and happy and totally normal, became sick at age 5. It was overnight and dramatic. It started with a severe headache. He had a rash all over his back. He had spots in front of his eyes. He developed severe chorea. He hallucinated both auditory and visual. He said there were lines in front of his eyes. He asked me why everything seemed so big and so small (Alice and Wonderland effect). He asked me why a guy was whispering in his ear. He asked me when this dream was going to be over. He said his throat hurt. He said his knees and feet hurt. He said that there was a video going through his head. He lost his language. It started that he just would not talk much. Then, he couldn't remember the words for things, "What's the word Mommy." He became autistic with a twist. He knew what was happening. "I have a terrible sickness Mommy." "Fix my brain" His words then started to stutter. Then gibberish. He got severe OCD and tics.

 

My son was one of the most severe pandas cases his neurologist has seen. It went untreated for 2.9 years. He was on antibiotics for three months before IVIG. He has had 5 IVIGs (2gr/kg), the last one March 15-16.

 

I want you all to know that IVIG WORKS. Multiple IVIGs WORK. My son is getting so much better. It is so exciting to watch. It has been almost 10 months since his first IVIG. Progress happened after each one but it was slow. After the 4th and especially the 5th IVIG he seems to be taking off. Don't despair people! This is a long road but your children will get better! Believe it!

 

This morning my son woke up with a smile on his face and said, "I want to go to school". How about that! The boy who became mute now talks!

[peglem]

Very encouraging! Thank you for sharing. I hope to be able to report a similar story someday.

[butterflymom]

=

Edited October 5, 2015 by tampicc

[SSS]

Wow!! :-) :-)

 

Just...fantastic.

 

 

We are starting to have some really great days here, too (day 28 post HD-IVIG)

 

Thrilled with your post!

[thereishope]

I am so happy for you, your son, and family!

[Kayanne]

I'm so very very happy to read this!!!

[JAG10]

What a pure joy this must be to witness!!!!

 

Thank you for being so generous and sharing your story.

 

You have given us hope...and chills!

[MIAS_MOM]

This is the most BEAUTIFUL thing I have heard in a long, long time! Congrats and Good Luck !!!

[Mary M]

So important for us all to hear this...and so wonderful that you are living it after living with so much!

Mary

from Michigan

[norcalmom]

I am soooooooooooo happy for you!!!!!!!!!

 

I think I cried when I saw the video of him, and I'm crying again now. For you both, and the rest of us!!!

 

Thank you for sharing your progress. TOTALLY made my day, and my resolve to schedule ivig #2 today.

[Fixit]

I ditto what everyon else has said..oh so happy for your boy and your family

[eljomom]

This is great to hear! I wish everyone who had positive outcomes would post too....gives us hope and direction. Thanks for sharing!

[philamom]

Wonderful news PhillyPA!!! I hope to read your success story one day in our local paper.

[kferricks]

Thank you so much for posting this! We so badly NEED to hear the successes! Thanks for the hope, I am so happy for you and your son.

[PhillyPA]

Thanks everyone. And Philamom - when my son gets better I promise you the world will hear about it. His story will be told.

 

By the way, I did not mention that the only thing that preceded his collapse was a dry cough. It lasted about one month. I kept calling the doctors office. They kept insisting that it was allergies. I said that my son has never had allergies before and I thought this was unusual. I wish I would have insisted on bringing him in. I wish I would have insisted on a strep test. They never did one. Even during his collapse when he grabbed his throat and said it was so sore.