Just wondering how many other kids can "hold it together" du

[dut]

EmersonAilidh - I am, as I am sure are many others on this board, really grateful to have people like you on this forum who are happy to discuss these issues from the point of view of the person with PANDAS. It is so hard dealing with this as a parent that I feel I sometimes lose sight of my children in all of it and may even forget that thay are dealing with this in a far more intense way than I am. Also having the added understanding of seeing it from their point of view really helps.

 

thank you...

[EmersonAilidh]

EmersonAilidh - I am, as I am sure are many others on this board, really grateful to have people like you on this forum who are happy to discuss these issues from the point of view of the person with PANDAS. It is so hard dealing with this as a parent that I feel I sometimes lose sight of my children in all of it and may even forget that thay are dealing with this in a far more intense way than I am. Also having the added understanding of seeing it from their point of view really helps.

 

thank you...

 

There's no need to thank me! I wanted to join this forum to help when I saw that there weren't many patients posting. I'm more than happy to help!

[AmySLP]

Faith- maybe it's my background as a speech-language pathologist having worked with patients, parents and families for nearly 10 years that makes me feel that giving all the information up front will truly be to the best benefit of my daughter( and honestly to increase awareness about PANDAS). I have evaluated and treated many children over the years who, in hindsight, having not known about PANDAS then, makes me wonder if they were suffering this disorder. As SLPs we make referrals to physicians and other specialists when we suspect a problem. WHen a parent decides to "let me in" and give me the whole story, I am much more lilkely to be able to treat the whole child (not just their communication or feeding disorder). I have led many parents toward diagnosis of various disorders, most often, unfortunately, being Autism. I have many colleagues with whom I have shared my daughter's story with in hopes that they will remember it should they encounter a child with these symptoms and this has worked to our benefit as well-leading us to specialists and doctors and connecting us with families we wouldn't have known of otherwise. Just today a colleague of mine, a dietitian with whom I just shared my daughter's story, forwarded me an e-mail she got about a free web seminar on probiotics by a specialist in this area. IN the beginning of all this for us, sharing my daughter's story with others lead me to learning about PANDAS-a mom of a child (who happened to be a nurse practioner in the school setting) I was working with has a daughter she suspected PANDAS in & she gave me the NIMH info sheet on PANDAS. I just sent her a thank you card b/c really had that conversaton not happened, I wondered where my daughter would be today-probably not diagnosed with PANDAS.

 

People are always so worried about labels, but this is what gets kids services. I chose to be up front with my daughters teachers and administrators from the beginning for her sake and maybe hopefully to get them thinking should another child present with similiar symptoms. I want them to know what to expect and how to respond should they see these behaviors. Currently I work in a medical setting. I spend much time reviewing histories, I want all the info upfront to decide how to proceed, it gives me a clear picture of the person in front of me. I believe those we entrust to educate our children we should be able to trust that giving them info on our children will be used soley for our children's benefit-in my experience that has always been the case.

 

As always though, everyone's situation is different. I think each family needs to decide what is right for them based on their child and their education system.

[peglem]

Amy, I'm glad you're the kind of practitioner that wants all the info to be considered, but I know I'm not the only parent on this forum who has run into "professionals" who roll their eyes and think you're just making things up and then work doubly hard to show you they can fix your child's behaviors w/ the right "discipline." If you're working with private therapists and doctors, you can simply find somebody else, but when you are dealing with the schools, you don't get to choose. In my daughter's case, we're dealing w/ special education, and even though I try to be up front with staff, I've still had some teachers that I regret having told all to. I will not give permission for school to talk to my daughter's physicians. ABA has been the bane of her school career.

[tantrums]

I also think my profession makes me somewhat more open to discussing things with "a team". It's just what I do with kids/adults I work with so it comes naturally to me. Someday it may come back to bite me and I'll reconsider, but it's what I do all day everyday, so I don't see the other option.

 

My son is much better at school. His main presentation at school is the ADHD type symptoms. His teacher only saw tics once she was very aware of what she was looking for. Once I requested a CST eval though, the psychologist saw more than I EVER expected during her brief observations since she was looking for it. She saw things I never even saw.

 

Now his friends parents think I'm making it up I'm sure When my son is playing outside, running around, riding bikes, swimming in their pools... he seems 90% like any other little boy in the world. If he starts to melt down, he will usually decide to run right home. Since he is running and screaming with the pack, they dont hear the tics, especially since the worst is a screaming tic. And he will run home to melt down.

 

My DS8 is the same as yours, he has also the screaming tic and 1 motor tic.

How your son is doing? is he allergic to anything? did you do IVIG or steroid burst?

 

 

Deby, he is not doing much better right now. He's having a rough week actually. He isn't allergic to anything except mild seasonal allergies and spanish (yes ONLY spanish onions family joke here he got that weird one from me ). No IVIG or steroid burst. Dr. T mentioned it, but as soon as I said when he had croup in the past and got steroids, this is pretty much what we got! And that was before he had pandas!! He agreed it would not be prudent to try with him right now So just abx. Just finished one week of Biaxin and not seeing anything yet. we're just kindof holding our own and hoping to see some change.

 

I also however, happened to be at a birthday party at his friends house and the father is a chiropractor who works with natural health/diets. He noticed what was going on. We are going to go see him soon.