Jump to content
ACN Latitudes Forums

Recommended Posts

I know I have not been around lately, it is because we have been living our lives. DS8 is doing REALLY REALLY well, I would guess about 90%. We found out about PANDAS MARCH 29,2010 when a Dr suggested we look into it and it started an accelerated research plan by my family. He has basically been on antibiotics ever since and has had 2 HD IVIG. The results are unbelievable, my parents keep commenting how nice it is to have my sweet son back. He is still ornery and picks on his sister but he is so loving, cuddly and rational. His main symptoms were the rages, cognitive inflexablilty, sleep disturbances and what we called "touchy" OCD- his touching things evenly on both sides or a pattern. We have had a couple MINOR flares, but NOTHING and I mean NOTHING like it used to be. My son will say he feels great and that he thought at one point he was losing his mind- that is what PANDAS means to him that it was something that made him lose his mind. He has commented that he can feel when strep is around. I have said it before but after his first IVIG when I asked how he was doing HE looked at me and smiled and said it is all gone Mommy. I am not sure exactly what he was talking about but that was good enough for me.

 

I notice some touchy when he is nervous or scared but it is really minor and I am probably the only one who notices it. He is now enrolled in an after school program that does advanced math...we did 2 HOURS worth of advanced math hoomework one night this week - with some complaining but it seemed like a NORMAL kid. I would love to find the Dr that thought he was severely impaired with ADHD at one point to tell him he read this week for 2hours and 45 minutes straight. He rarely wakes us up at night or wets his bed, if he does I generally can chalk it up to a loose tooth or a friend in the class had strep. There is a calmness to him. A peace-he seemed angry at the world for so long and now he is back to being a happy boy! We are still on the double dose (500mg) of Zith for his age/weight but when I went down and tried to go 3 days a week or to 250mg it started creeping back in and we went back for the second IVIG. we monitor his labs and that are dropping- very very slowly and have a number of things that are still considered high that we are going to keep fighting but I have my son back. He started playing sports again- I only have him go when he wants to-I will admit I am afraid for him to push to hard, get too exhausted, I don't want him to wear his system down, started piano lessons and he is active in cub scouts. He has friends, more than just the one friend he had last year at his old school and I don't hear from the school every other day. Between the teacher and what I saw at home she was my partner in identifying some things had changed in his behavior which led us to the 2nd IVIG. A far cry from the principal that was such a B*TCH last year. We elected to move my kids to a school that has another child with PANDAS in it and they have been AMAZING!!!!

 

Some of you may remember some of my relatives were not very supportive. My soon to be ex-sister-in-law (yes that's right she filed for divorce)is not an issue because she is not going to be in my life anymore- or my brother's life which he now realizes is a blessing for him. The fact that my family did not want to be around her over her negative comments about ds- she said that I needed to stop looking for problems and deal with his behavior and spread a lot of negative stuff around the family about what she thought of PANDAS( not good) ironically if she only knew how much I had done over the years to deal with his behavior- that alone made me want to scream. We chose not to spend father's day with her(which was also my birthday) and she knows we ALWAYS get together and my brother told her we did not want to be around her.I had been bitting my tongue for years over little things she would dig at me but I took it because if my brother but when she went after my kid- forget it I was not holding back anymore and I did not need to ruin my birthday with her crap. Well our "shunning" her as she referred to it, tipped her over the edge and she asked for a divorce a couple months later. My brother stood up to her and within a couple months their marriage was over- don't get me wrong it was on a MAJOR downward spiral before that but I was supported in not having to deal with her crap and let me tell you how nice the Holiday's have been without her :). My brother is realizing it was a blessing and ready to move on with his life, he had been married over 20 years and his kids seem to be doing OK.

What has been nice is since ds has been well we have been able to focus on my brother and his kids. The family crisis has not been ds....that may sound strange but OMG it feels wonderful not to be the one in crisis and to be able to be present for someone else.

The other horrible thing that happened is my best friends husband dropped dead out of no where- IT WAS HORRIBLE, they had a 6 month old, had bought a house 2 years prior and had only been married a year. I have also been able to be a support to her. I have emotional bandwidth to SHARE!!! A year ago I could not have helped anyone because my family was in MAJOR CRISIS. Today I can share some of that time and energy with others.

So I have been living, my son has been living and growing and thriving, my family has been recovering and enjoying the simple things in life. I hope that gives someone a little lift if they are in a dark place because a year ago I thought I was losing my son and I had no idea what was wrong. My mind thought the worst at times about what type of person he was going to be because the boy he is today had been missing for a long time and we are so grateful to have him back.

I would not be here without the women and men before me who taught me how to fight this beast!

Thank you!!!

Brandy

Link to post
Share on other sites

Wow Brandy,

I have never read any of your posts before, but, it is so wonderful to hear how your life is so much better and that your child is doing so well. I forgot what it is to live outside of Pandas. To be able to go somewhere without rages or drama must be an amazing feeling. I wish my children(7) year old twins boy/ girl would want to participate in any outside activity.

So nice to hear a happy story I wish your family continued healing and happiness. Good for you for getting a negative family member out of your inner circle.I have one of those I would Like to dispose of too..lol

Tami

Link to post
Share on other sites

Thank you so much for taking the time to post about your son's recovery. Being new to PANDAS (although not new to dealing with the symptoms), it's truly wonderful to hear about the success stories and not just the stories of crisis which tend to consume our lives when we are in the thick of it. We all need hope to carry on. I wish you and your family all the best!

 

-Vicky

Link to post
Share on other sites

Thanks everyone! I do think about the board often and hope and pray that each and every child will have a full recovery. I know that it is here when I need it!! I also know one of the ways to beat PANDAS is to go live and not let it beat you down. I feel like every day we LIVE and breathe is a day we won.

May each and everyone of us have a Victory today, tomorrow and always!

Brandy

Link to post
Share on other sites

THANK YOU for returning here & giving us your good news. It's so great to hear of happiness and healing. I LOVE the term "emotional bandwidth" and totally understand what you mean by that. :) Yay for you! Yay for your son! Yay for your whole family!

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...