How can I help a Pandas mom?

[friend323]

A close friend's son was recently diagnosed with Pandas, and while he has not been diagnosed with Tourettes I was advised to post my question in this forum as many of you are also dealing with Pandas. From conversations I've had with her, I can see here that many of you are experiencing the same difficulties and challenges in dealing with this. My question is what do YOU as the primary caregiver need, in terms of support, to get through this? I realize everyone is different, but was hoping to get some insight on what might be the best way to help offset the obvious stress and difficulties my friend is encountering. I want to be there for her, but am really not sure how I can best help. Any advice greatly appreciated.

[Chemar]

Hi friend

 

and what a good friend you are to care this much.

 

I would suggest giving her a link to our forum and the two of you learning more about PANDAS together and so you being able to support her from a real position of understanding

 

honestly, altho my son is not PANDAS but does have Tourette Syndrome plus other stuff, when my son was first dx I went thru what I know now are the stages of grieving. So dont be surprised if your friend shows many different emotions as she comes to terms with the challenges of living with neurological and autoimmune illness.

 

just you "being there" for her...just to listen and let her release...will be a real blessing to her

 

often what we need isnt just answers or advice....it is just to be able to be honest in how we are feeling. Having a caring friend, or a support group like this, really really helps

 

look forward to getting to know you...and hopefully your friend too

[friend323]

Thanks, I appreciate the advice. I've done a lot of reading up on it and I found a very helpful book written as a guide for parents that working through the virtual ###### that is childhood OCD, which was very enlightening. I'd just like to do whatever I can to help her stay strong for her son.

[Pandas_chicago]

Wow is all I can say - when I was going through this - I couldn't even begin to explain what I was dealing with to my friends.

 

I would research until I couldn't keep my eyes open - I got a binder and printed research articles - emails ...this might be a good idea

 

If I had a friend who did this for me at my time of need - it would have been a great help and very meaningful.

[Sue: New Jersey Mom]

I think you are a great friend and just stick by her, no matter what. Just sitting together and reading together will help her. I wish I had a friend like this. I happen to be the one that people expect to be strong and they lean on me. I have no one to lean on, but if I had a friend like you, I would be in heaven. You will help her get through this, by reading and researching and finding a good doctor. The child needs help and the antibiotic treatments are the beginning. Ask about support supplements and always ask what potential side effects or interactions can occur. Don't let anyone tell her, that her kid is going through some silly phase. She is the mom and moms know best and know their kids better than anyone else. Do not let her get discouraged by doctors that just want to dismiss it as all neurological. Every thing I have read shows that with the correct treatment, the children get better. Some take longer. Just read, read, read and be there for her.

God bless you.

 

I have to say that I am 49 and was born here, to Muslim parents and I am an American Muslim. Our faith does tell us that there is a cure for everything god gives, except death, and it is up to us to find it. So we all must believe that God gives us only what we can handle. You are all special parents out there in this forum and we can support each other by staying in touch through this forum. We will all get through this and share the day when we can say our children have recovered. Together!

 

Sue

[friend323]

Thank you for the advice. I've been doing a lot of online reading and passing on some of the things I've come across to my friend. I am just trying to walk the tightrope a little bit, I don't want to inundate her with too much, and yet I don't want to leave her to being the left alone with this. The book I found, Freeing Your Child From Obsessive Compulsive Disorder, was really so enlightening about the condition and filled with strategies for dealing with the rituals and behaviors that result. Once I finished reading it I gave it to her, and she so far she seems to be finding it useful I've also passed along some things I've found on this message board too. I gave her the link to the board, but I don't know if she's checked it out yet. They have been basically making the rounds "interviewing" doctors to find the neurologist that seems to be the best fit for them. I think they are close to choosing one, and then will be repeating the process to find the right CBT. I know that my friend will do whatever is necessary and best for her son and that she will not stop until she gets him the very best care. I'm just really worried about the strain, emotional overload and toll this process is taking, and will continue to take, from her. She's not someone that is 'easy' to help, so I kind of feel like I'm doing a delicate dance here. I'm very concerned and want to know what's happening, but don't want to push her to talk about it when she isn't up to it. I kind of feel like respecting her normal boundaries and the way she usually handles things might not be the right way to go here though, because this is a tough battle, and one that may require 'long haul' fortitude. I'm just trying to take it slow, learn as much as I can, and figure it out as I go. I really appreciate the advice from all of you. And trust me, I am no better friend to her than she has always been to me.

 

I will keep a good thought for all of you and your families in your own battles with this insidious disorder.