First post, song of thanks

[Missbusy1]

This is my first post. My husband and I have been dealing with my sons illness (age 6) since May 2011. The past 7 mos. been the hardest time for our family and we are still struggling with all of the many doctor visits. My son came down with ALL of his symptoms in May and we had no idea that our world would change. his major symptoms are tics and anxiety but has had many others such as frequent urination, separation anxiety, new fears and worries. One day coming home from the neurologist he told me he wished he could be born again into another body. He also stated that something took his happiness away. I have been so sad, depressed and hopeless since the drs. Consider his 3 positive strep tests a coincidence. our next step is to go out of state to meet with a specialist that knows about pandas. Anyway, I just want to thank this board for helping me realize that I am not alone and to start appreciating those around me that truly care about my son and illness. Apparently, the many doctors we have seen do not and haven't even called to check on him. A few weeks ago my son's teacher(one of the most loving human beings to grace this Earth) called me and said "I think you need to come get him, it's been a bad day.". She had been observing him and his facial tics were overwhelming him and he couldn't stop. He finally raised his hand and said "call my mommy, I can't stop my tics". Once he was in the office, she told me with tears streaming down her face that she will give him all the love and hugs she can to make him feel better at school. On the car ride home, the song "God gave me you" by Blake Shelton came on the radio. The lyrics fit my son and his angel of a teacher and I would just like to share it with people that will understand.

God Gave Me You

I’ve been a walking heartache

I’ve made a mess of me

The person that I’ve been lately

Ain’t who I wanna be

 

But you stay here right beside me

And watch as the storm blows through

And I need you

 

Cause God gave me you for the ups and downs

God gave me you for the days of doubt

And for when I think I lost my way

There are no words here left to say, it’s true

God gave me you

Gave me you

 

There’s more here than what we’re seeing

A divine conspiracy

That you, an angel lovely

Could somehow fall for me

You’ll always be love’s great martyr

And I’ll be the flattered fool

And I need you

 

God gave me you for the ups and downs

God gave me you for the days of doubt

And for when I think I lost my way

There are no words here left to say, it’s true

God gave me you

 

 

Thank you to all of you who have helped me in my search for knowledge and strength.

[PowPow]

I would advise you to get to a PANDAS doc right away! Do you have one in mind or do you need direction on that?

 

Oh & I think the song was really appropriate for the stuff we all go through on a daily basis dealing with kids with PANDAS! It is great you have a teacher on your side. I hope she will be a good advocate for your son. It sounds like she might be

Edited January 31, 2012 by PowPow

[dcmom]

Thank you for your post and song. I am so sorry for your son's suffering, and yours, we can all relate.

 

I second Pow Pow's advice- get to a pandas doc yesterday!

[Dedee]

I am so sorry for the pain that you and your family are going through. I can feel the dispair in your post and it brings tears to my eyes. We have all been where you are (many still are), and understand the darkness and isolation that you feel. God has given your little boy a wonderful Mother to get him through this difficult time and I know you will rise to the challenge. I understand your sadness and I think the best way to work through that right now is with swift and definitive action. As the previous posters have stated, you need to immediately choose a PANDAS specialist and make an appointment. Sometimes it takes a couple of months to get in so make the appointment ASAP. As you said, you may have to travel, but I assure you it is worth it. If you are in doubt as to which one, make an appointment with two and then decide between them and cancel one after your decision. My point being not to waste time.....get an appointment. Ok, guess you got that empahsis. Once you get a physician who understands and validates what you as a Mother already know, you will feel more empowered and in control of the situation. Most importantly, your son will begin to get the treament he deserves. Try to ignore the "other" health care providers who are ignorant and may make you doubt yourself or just plain tic you off. (No pun intended...Couldn't use the word I wanted to). We have all had to grow thick skin and learned to tune out the stupidity. Stay focused on your family. I know with you guiding this, your son is going to come through this and your family will be stronger because of your dedication. I wish you the best of luck on your journey. Please keep us updated on your son's progress.

 

Best Wishes - Dedee

Edited January 31, 2012 by Dedee

[WorriedDADNMOM]

Missbusy, yes get to a Pandas/Pitand/Pans doc literate/believing doc right away. I am convinced that with our dd8 who had the anxiety post strep has gone full circle back to pretty close to who she was. However the tics in our dd7 whom we know has been infected for a longer period is having more difficult time with more recent infections(other than strep). She is still struggling to get back to close to "baseline"------- if we can even figure out what that is. But our DD8 is doing better.

 

Our thoughts and prayers are with you.

 

Some things to research would be supplements for mood, immune booster, anti inflammatory and other stuff. Would share our info if needed.

[Tracie]

We have been to Dr K in Chicago for 2 IVIG'S for my DD she is 7 and we started at age 4

We really like him

If you need any info just let me know

Hang in there with the RIGHT docs you can get

some help for your son..

There is so much info on this

and we can ALL help you get help for your son.

Tracie

[MaggiesMoons]

I was where you are 6 months ago, and I just want to tell you that thanks to all these wonderful parents on here and their guidance, support, knowledge, and advice my ds8 is now so much better! We got to the right docs and got the diagnosis and treatment needed.

 

"Run, don't walk" was one of the best pieces of advice I received on here! I was lost, confused, and unsure, and the peds were no help except to make me doubt myself.

I am so very grateful I took that persons advice......

 

My ds8 has now had PANS for a year, started treating about 9 months into it (didn't know what it was at first), and today we are almost 98%~!!!!

 

The lyrics to that song are so fitting....made me cry! But it doesn't take much these days when you reallize what you have gone through and how your child has and is suffering and what THEY go through!

This stuff is scary, but on here you will find resources, support, and a place to come and just talk to others on the same road! I am very grateful to them all!

 

My last piece of advice: Don't bottle it up in yourself~ vent, cry, scream, pray harder than ever before! You have to or you will find yourself breaking down as I did. I think we all have reached that point at one time or another in this journey.

 

We see Dr. T in NJ, and Dr. M is St Pete. Not sure why everyone abbreviates on here, lol. There is a good list of docs on this forum too!