Looking on the bright side of PANDAS!

[Stephanie2]

I have never relayed this story to this board and I'm feeling like now would be a good time with so many of you recently posting about how worn out you are. Not that this story is going to make you any less worn out, but maybe it will just get you thinking about the big picture or give you a different perspective.

 

My 5 yo has had pandas now for 4 years. In Jan 09 he had a polio shot which sent his pandas through the roof and we are just now getting on top of it (BTW, I did not know he had pandas at the time of that last vaccine). Well, right after that shot and his terrible exacerbation of symptoms I spent my days wondering what in the world that shot did to him and the only thing that I could come up with was that it caused autism!

 

Now looking back I know differently, but it was enough for me to call it quits on all vaccines for both kids. And just in time, too. My 2 year old was due for his 12 month vaccines. As I was doing all this research to see what happened to my 5 yo, I came across a lot of information about autism and the early signs. Well, to my horror I saw that my baby had so many of the signs of autism. No social interaction, no communication, low muscle tone, sensory sensitivities, etc. Only thing he would do was smile at us when we spoke to him and he would make eye contact if we spoke to him. But other than that there was no attempt from his part to socialize or communicate. He would sit in the corner for HOURS...HOURS...and play silently. I mean NO SOUND. When we would drive around town...NO SOUND from the backseat. When he was in his crib at night or in the morning....NO SOUND. He didn't point, nothin.

 

The problem is that he flew under the radar b/c he was such an "easy" baby! Everyone told me how lucky I was to have such an "easy baby"! "Easy" does not necessarily mean healthy. Also, my 5 yo was such a handful, I was thankful to have an "easy" baby. But after doing the research, I knew he was in big trouble. I made an appt with the pediatrician and she told me he had some kind of syndrome. I said, you mean autism? She said, I don't know just some kind of syndrome of some sort and you need to get him to the neurologist right away.

 

Well, I skipped the neurologist and got both of my kids to the DAN (Defeat Autism Now) doctor. So you could say that my 5 yo prevented the 12 month shots for my baby, and my baby brought my 5 yo to the DAN doctor who ultimately lead us to the pandas diagnosis. A whole bunch of chaos but it all lead us to where we are today which is a good place.

 

My baby boy came out of the silence of autism VERY quickly! I started him on the GFCF diet and also some initial supplements while we were waiting on our bloodwork. Within a couple weeks, he started crawling through the house looking for me and attempting to communicate! I will never forget the day he crawled into the kitchen where I was loading the dishwasher and he looked up at me and made a face and a sound as if to say, "whatcha doin, mom?". I just knew at that moment that he was going to be ok.

 

He continues to progress as we delve further and further into the DAN protocol. We now have his pandas somewhat under control and I am getting to know a very happy, dynamic little 2 year old! He still has quite a speech delay, but he does have some words and he has a TON of nonverbal communication. Points, makes gestures, etc...

 

My point is that if my 5 yo had not had that horrible exacerbation in Jan of 2009, I would have gone ahead with my baby's next round of vaccines in Feb. 2009. I just know in my heart that those would have been the ones to really do him in. Like the DAN doc said, the only thing I had left to lose was eye contact. If I had lost that it would have DEVASTATED me!

 

Looking back, he did have a regression after his 4 months vaccines (lost babbling and back and forth communication) so I know he would have reacted again...

 

Just thought I would share what I can now call an uplifting story. If you look hard enough you can find a purpose in even the most devastating of events.

 

Stephanie

[FallingApart]

After having been in this for so long also- I believe my DD got PANDAS at 9 months - although we didn't know it until she turned 3, it becomes a bit easier to see the good points in things. I think your story is very uplifting and I am so thankful for you that your youngest didn't get his shots!!! I hope we all recover!!!!

[matis_mom]

Thanks Stephanie for that post. I needed to hear that. With my first couple of kids I followed the schedule to the tee (ds PANDAS had all his on time!)

As time went by and I started knowing more, I still vaccinated, but never all at the same time, and I always kept stretching and delaying. Now, with this PANDAS thing, I have been pondering what to do. And after reading this post, I'm thinking, "BETTER SAFE THAN SORRY!" (where "SAFE" means NOT VACCINES!)

 

I read somewhere vaccines are related to autoimmune problems, definitely what we have here. And if on top of that you have a familiar pre-disposition --I think I'm soon to join the "DOUBLE PANDAS" club -- then I think vaccines are totally out for us.

[Stephanie2]

I'm definitely not trying to talk anyone out of vaccines with my post, but if that is the way you are leaning I'm glad I could help!

 

I'm sorry you are joining the double pandas club. It feels overwhelming at first, I know. I almost fell over when the neurologist told me that my second child could have pandas. I knew right then and there that he DID have pandas. I didn't need a test to confirm it. Then I went into denial for a long time and I just let it go until we got hit with a nightmare exacerbation, then I was forced to accept it!!

 

Stephanie

 

Thanks Stephanie for that post. I needed to hear that. With my first couple of kids I followed the schedule to the tee (ds PANDAS had all his on time!)

As time went by and I started knowing more, I still vaccinated, but never all at the same time, and I always kept stretching and delaying. Now, with this PANDAS thing, I have been pondering what to do. And after reading this post, I'm thinking, "BETTER SAFE THAN SORRY!" (where "SAFE" means NOT VACCINES!)

 

I read somewhere vaccines are related to autoimmune problems, definitely what we have here. And if on top of that you have a familiar pre-disposition --I think I'm soon to join the "DOUBLE PANDAS" club -- then I think vaccines are totally out for us.

[thereishope]

Thank you for sharing your story. It is odd that at some point in the chaos (usually once it settles down a bit) you see something positive come out fo all of it. Life works odd like that.

[saidie10]

thank you so much for sharing your inspiring story! mom's perseverance always pays off. we continue to fight for our kids and we can feel the payoff one day

 

Thank you for sharing your story. It is odd that at some point in the chaos (usually once it settles down a bit) you see something positive come out fo all of it. Life works odd like that.

[Johnsmom]

Stephanie-

 

your story absolutely moved me. Mine is long and I will share mine with the forum soon I hope.

I am right with you on the vaccine issue. It is okay for some, but not for others. I am so glad we started the DAN

protocol 3 + years ago. My son has greatly improved.

Thank you so much for sharing your story.

Ann

 

I have never relayed this story to this board and I'm feeling like now would be a good time with so many of you recently posting about how worn out you are. Not that this story is going to make you any less worn out, but maybe it will just get you thinking about the big picture or give you a different perspective.

 

My 5 yo has had pandas now for 4 years. In Jan 09 he had a polio shot which sent his pandas through the roof and we are just now getting on top of it (BTW, I did not know he had pandas at the time of that last vaccine). Well, right after that shot and his terrible exacerbation of symptoms I spent my days wondering what in the world that shot did to him and the only thing that I could come up with was that it caused autism!

 

Now looking back I know differently, but it was enough for me to call it quits on all vaccines for both kids. And just in time, too. My 2 year old was due for his 12 month vaccines. As I was doing all this research to see what happened to my 5 yo, I came across a lot of information about autism and the early signs. Well, to my horror I saw that my baby had so many of the signs of autism. No social interaction, no communication, low muscle tone, sensory sensitivities, etc. Only thing he would do was smile at us when we spoke to him and he would make eye contact if we spoke to him. But other than that there was no attempt from his part to socialize or communicate. He would sit in the corner for HOURS...HOURS...and play silently. I mean NO SOUND. When we would drive around town...NO SOUND from the backseat. When he was in his crib at night or in the morning....NO SOUND. He didn't point, nothin.

 

The problem is that he flew under the radar b/c he was such an "easy" baby! Everyone told me how lucky I was to have such an "easy baby"! "Easy" does not necessarily mean healthy. Also, my 5 yo was such a handful, I was thankful to have an "easy" baby. But after doing the research, I knew he was in big trouble. I made an appt with the pediatrician and she told me he had some kind of syndrome. I said, you mean autism? She said, I don't know just some kind of syndrome of some sort and you need to get him to the neurologist right away.

 

Well, I skipped the neurologist and got both of my kids to the DAN (Defeat Autism Now) doctor. So you could say that my 5 yo prevented the 12 month shots for my baby, and my baby brought my 5 yo to the DAN doctor who ultimately lead us to the pandas diagnosis. A whole bunch of chaos but it all lead us to where we are today which is a good place.

 

My baby boy came out of the silence of autism VERY quickly! I started him on the GFCF diet and also some initial supplements while we were waiting on our bloodwork. Within a couple weeks, he started crawling through the house looking for me and attempting to communicate! I will never forget the day he crawled into the kitchen where I was loading the dishwasher and he looked up at me and made a face and a sound as if to say, "whatcha doin, mom?". I just knew at that moment that he was going to be ok.

 

He continues to progress as we delve further and further into the DAN protocol. We now have his pandas somewhat under control and I am getting to know a very happy, dynamic little 2 year old! He still has quite a speech delay, but he does have some words and he has a TON of nonverbal communication. Points, makes gestures, etc...

 

My point is that if my 5 yo had not had that horrible exacerbation in Jan of 2009, I would have gone ahead with my baby's next round of vaccines in Feb. 2009. I just know in my heart that those would have been the ones to really do him in. Like the DAN doc said, the only thing I had left to lose was eye contact. If I had lost that it would have DEVASTATED me!

 

Looking back, he did have a regression after his 4 months vaccines (lost babbling and back and forth communication) so I know he would have reacted again...

 

Just thought I would share what I can now call an uplifting story. If you look hard enough you can find a purpose in even the most devastating of events.

 

Stephanie

[Mary M]

Thank you for sharing your story and your insights..and everyone else for your follow up replies. My dd12 needed a sports physical and shortly therefter began her exacerbation last fall when the Dr (not our amazing and wonderful pediatrician--just the one who happened to be there that day) wanted to vaccinate her for chicken pox. I said no. Instead I had her titers drawn for varicella. They came back low and the Dr called to have us come in to have the shot...we were not at a PANDAS dx yet but it seemed illogical to do anything more than survive at that point so I declined the varicella and am I ever glad I did. What could the outcome have been? I shudder to think since she's been pretty much off the charts for function for months now...some days I think there are just too many dots to connect to ake sense of all of this. Thank goodness we've all found each other.