I found this forum today - what an eye - opener

[guava]

Hello everyone,

 

My name is Mike and my 14 year old beautiful son has been diagnosed with Pandas a few weeks ago, and it took me until tonight to finally understand what a terrible disease this is, and the impact this disease has had on son. Finally understanding the diffcult times he has been going thru in the last few years and espcially in the last few weeks.

 

I was sitting with tears in front of my monitor reading thru a few of the threads in here, and I am still trying to make sense of this all.

 

I am full of fear for my son, I am so woried for his future.

 

Seeing the impact Pandas has had on so many lives already, having been un-diagnosed for so many patients for years I am speechless with the lack of knowledge and reseach in the medical community.

 

Sorry for the rant, I am just at a loss at the moment

[laurenjohnsonsmom]

Hi Mike,

 

Welcome. I know this can be frightening and overwhelming as I sat where you are today, just 5 short months ago with the same fears the sametears and the same frustrations.

 

Please find comfort that you have found a place where parents understand what you're going through and will help guide you and support you in your determination in finding healing for your son and your family.

 

I will not lie to you and tell you this journey will not be a rough one, to say the least. It's very hard to navigate through this disease as much is still unknown. It's going to take some time and lots if research to fully understand PANDAS. It's hard to be patient when your son and so many other children are suffering.

 

The best advice I can give you would be to go with your gut I instincts, always. You know your child best. Read, read, read and educate yourself with the information we do know about PANDAS do that you may work WITH a doctor to fo what's best for your child. Stay strong and focused. Keep hope and faith in your heart.

 

I hope this helps.

 

Lynn

[kimballot]

Mike -

 

You are fortunate to have found this forum and this group of dedicated parents.Your son is fortunate to have you here.

 

I am relatively new to the forum myself, but spending time her really helps me make sense of all my family has been through for many years. My son is 13 and we are just now getting a real diagnosis. I am looking forward to a future where we can be pro active about his condition, promote research and understanding about the condition, and be well informed of all advances as they emerge.

 

Spend time here. Read the studies and Buster's summaries of the studies. Read people's stories and find the stories that seem to fit what your son is going through. Save the stories that fit and put together a blueprint for your family to follow.

 

All the best to you and your family... and Welcome.

Edited April 24, 2010 by kimballot

[momaine]

Mike,

Glad you found this group. It in invaluable. My best advice would be to hook up with one of the doctors who is already knowledgable in PANDAS. There is a list of them at the top of the forum posts under information for new people.

 

Angela

[ShannonOtown]

Mike...

 

We all remember 'the day' we found the forum... for me it was at 2 am in the morning after an endless 3 year search for answer and numerous doctor visits. I'll never forget the relief in finding a name 'PANDAS' to match all my son's crazy symptoms. And waking my husband up crying I FOUND IT.

 

The good news is you have a new family that understands all your feelings and will answer and support all your questions and decisions. The bad news is you now have a new habit of logging in at all hours reading, researching and trying to keep up on the latest information (and of courses having this disorder in your family)

 

There are some awesome experts and many experienced parents that can help you here....

 

Shannon

[thereishope]

Mike,

 

I am so sorry you are going through this. But, I think you're at the point that you are gearing up for the fight. Once you let yourself read the stories and see and understand the struggle, you get scared and you want to just run, but then the parental instinct kicks in and you fight for your kid!

 

This forum can seem overwhelming at first. Just take it in slow. Some of the bad things you read on here doesn't happen to every PANDAS child. The symptoms vary, the severity varies, but it's also good to read that you're not the only onlt going through that "stuff".

 

Here are some useful threads for you to read through. I suggest printing them out. They will hopefully answer some questions and lead you to new ones. And ask whatever you want on here. Know you are not alone. Everyone on here not only fights for their child, but we fight for all PANDAS and PITAND kids to get better. May sound a bit corny, but it's true.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Then there's a website set up by a 13 yr old with PANDAS, it might be something your son would want to visit to know he is not alone in this...

http://www.pandas-syndrome.webs.com/

Edited April 24, 2010 by Vickie

[matis_mom]

Hello everyone,

 

My name is Mike and my 14 year old beautiful son has been diagnosed with Pandas a few weeks ago, and it took me until tonight to finally understand what a terrible disease this is, and the impact this disease has had on son. Finally understanding the diffcult times he has been going thru in the last few years and espcially in the last few weeks.

 

I was sitting with tears in front of my monitor reading thru a few of the threads in here, and I am still trying to make sense of this all.

 

I am full of fear for my son, I am so woried for his future.

 

Seeing the impact Pandas has had on so many lives already, having been un-diagnosed for so many patients for years I am speechless with the lack of knowledge and reseach in the medical community.

 

Sorry for the rant, I am just at a loss at the moment

Hi Michael,

Sorry you had to "join the party!" Don't beat yourself up over the late diagnosis, hindsight is always 20/20. And yes, we all wish our doctors (or ourselves) had caught this earlier. BUT, there is hope! I keep thinking "back in the days" our children would have been diagnosed as who-knows-what, given psych. meds, and that would have been it, without much hope for improvement. Now we know what it is, what makes it better/worse, and have different treatment options. Be thankful you now have a diagnosis and can treat accordingly. As you will see from reading in this forum, there is no "one size fits all" treatment. This frustrated me to no end in the beginning, but now I have come to accept it and be thankful we have found doctors who have helped us tremendously. Hang in there and come back to the forum to rant, ask questions, whatever you need, there will always be someone here who can help.

[sf_mom]

Mike,

 

Welcome. You have found a home where everyone knows your struggle and understands your sons illness. I am interested in where you live and who diagnosed your child? How long has your son been sick? How does your son's symptoms present TICs over OCD or OCD over TICs?

 

Keep reading. With understanding you'll find its not so overwhelming and that there is hope for recovery.

 

-Wendy

[bgbarnes]

Hello everyone,

 

My name is Mike and my 14 year old beautiful son has been diagnosed with Pandas a few weeks ago, and it took me until tonight to finally understand what a terrible disease this is, and the impact this disease has had on son. Finally understanding the diffcult times he has been going thru in the last few years and espcially in the last few weeks.

 

I was sitting with tears in front of my monitor reading thru a few of the threads in here, and I am still trying to make sense of this all.

 

I am full of fear for my son, I am so woried for his future.

 

Seeing the impact Pandas has had on so many lives already, having been un-diagnosed for so many patients for years I am speechless with the lack of knowledge and reseach in the medical community.

 

Sorry for the rant, I am just at a loss at the moment

Welcome- I am pretty new too ( a couple weeks) so I remember very well sitting and reading all of the stories- the fear and panic that swirled- I can admit my head went to the bad place of what if- regarding the worst stories when they are at the worst part of an exacerbation period and I had to pull out if them and go to the success stories. Even several weeks in- I have learned so much to make a difference in my ds life and I now can put a face and name to the ugly demon that has kept my son hostage for years- lucky for him he has a warrior Mommy that WILL fight PANDAS. So your son is blessed to have you as an adult that you were willing to search the internet for more than just a name to diagnosis- you are in the right place!!!

Brandy