Another relative weighs in---so nice to have support- NOT!

[bgbarnes]

One of my favorite Aunts was talking to my Mother and my ds came up. She said her husband studied psychology in college ( 50 years ago) and she has done her own research and there is no such thing as Bacterial caused mental illness that I need to "get off my sons back" and get a job. MY Mom said You have not seen him in years- started talking about he OCD etc... ( IT has probably been 2 years since she has seen him)

My Aunt responded- "other things cause that and I have my own theories, she just needs to deal with the behavioral issues and get off his back.... She also said something about I constantly have something as the "reason" for ds behavior issues- Duh I have been searching for 5 years!!! I have cried to her a number of times not knowing what was wrong.

My Mom ended up hanging up on her- my Aunt called back and said now we are even and hung up on my Mom- can you believe that crap- seriously this was my favorite Aunt.

She also said this Pepsi competition was just a way for Pepsi to advertise and that it is a bunch of crap- my Mom said yes but the top 10 get 50K. My Aunt said that is not going to do anything.

I guess it makes my Christmas shopping list easier....

Brandy

[mandyknowles]

One of my favorite Aunts was talking to my Mother and my ds came up. She said her husband studied psychology in college ( 50 years ago) and she has done her own research and there is no such thing as Bacterial caused mental illness that I need to "get off my sons back" and get a job. MY Mom said You have not seen him in years- started talking about he OCD etc... ( IT has probably been 2 years since she has seen him)

My Aunt responded- "other things cause that and I have my own theories, she just needs to deal with the behavioral issues and get off his back.... She also said something about I constantly have something as the "reason" for ds behavior issues- Duh I have been searching for 5 years!!! I have cried to her a number of times not knowing what was wrong.

My Mom ended up hanging up on her- my Aunt called back and said now we are even and hung up on my Mom- can you believe that crap- seriously this was my favorite Aunt.

She also said this Pepsi competition was just a way for Pepsi to advertise and that it is a bunch of crap- my Mom said yes but the top 10 get 50K. My Aunt said that is not going to do anything.

I guess it makes my Christmas shopping list easier....

Brandy

 

 

Don't feel too bad...My grandma sided with the nut house people, and not me when i refused to put my daughter in a hospital for that. Me and her have went round and round over this.

[forjpj]

I'm so sorry!! These people make me so mad!! I really hate when people who don't live a situation decide they feel some computer research makes them experts. This whole pandas experience really has taught me to live and breathe the "don't know until you have walked in another man's shoes" life lesson. I have taken to writing letters to those that have presented problems to us along the way...ER, misguided but well-meaning friends, cranky neighbors. They probably don't care, but it allows me to present all my feelings and reasons down on paper in an organized manner, and I don't have any what-ifs!! This way I don't lie awake at night wishing I had explained my self better. Actually, I've gotten pretty good responses, and I think I have educated them in the proces, at least I hope. Don't worry you will come out on top!! I'm just sorry it had to be someone so close!! You don't deserve this!!

Sarah

[peglem]

Wow, that's hard coming from someone you love, and trusted. And I'll bet you never suspected she was so childish! Sorry!

[dcmom]

I can't even imagine! I am lucky that my family is supportive. They all completely support pandas- and even then I have to set them straight on occasion:)

 

I imagine it is hard, but I would think you need to distance yourself from these people, at least until your son is in a good place.

[norcalmom]

I have some words that the forum will #### sign out for her! So sorry you have to deal with the stress that comes with this drama.

 

It could also be that your mom and aunt have something going between them, and your aunt is using you and your child to hurt your mom. Family dynamics are soo difficult. I hope you work it out, but I'd cut her off for a while. Who needs that kind of judgment, drama and stress certainly not anyone with a pandas kid.

[EmersonAilidh]

There are far too many people who are so jaded in their own "research" that they fail to accept what's right in front of them. There's no bacteria caused mental illness, really? Because that's exactly what this is. AGH. I have supportive, albeit not well informed, family, & I'm very grateful for that. I'm sorry you had to deal with that. People, doctors included, have told me to my face that P.A.N.D.A.S. is a myth. I just find it funny by now. I'm living proof that it DOES, haha.

 

Well, anyway, you always have understanding people like us on the forum!

[thereishope]

.

Edited October 18, 2016 by vickie

[bgbarnes]

I just have to sit here and shake my head saying "no". ....Heavy sigh.....I wish you Aunt would share her "theories" with doctors so we can all be enlightened and how she can explain to me how my son who had sudden onset severe OCD is now fine without therapy, without psych meds, none of that. I'd love to hear her theory on that. Those are the people who will have to answer to God an explain to Him why they turned their back on suffering children.

 

And, yes, the pepsi thing is advertising. Of course it is! But, if they'll give me $50K for research to say their name a number of times, I will.

I will take 50K- maybe it is the 50K that provides funding for a lab assistant to work solely on PANDAS for one year and makes us that much more progress towards a cure, or it gets media attention to get others to fund more research.....I think my SIL talked to this side of the family and it is really tainted from her- luckily I got all my hurt out of the way with her and now I will drop people like flies- I will only keep those around me that support me, my son and my family period- life is too short!

I am proud of my Mom!!!

Brandy

[airial95]

Wait a minute...I wouldn't be so dismissive of your aunts opinion, I mean,her husband did take a psychology course at the local learning annex in the late 60's...he probably has some useful insights.

 

I also used a flight simulator once or twice in college so if you want when you take your next vacation I'd be more than happy to fly the plane for you!

 

(the puddle of goop around your computer right now would be the sarcasm that was dripping off of this post)

[Stephanie2]

These posts about family members make me so &*$# mad!! My mom is one of the doubters and so is my aunt who I used to be close to. They have made me feel like one of those Maunchausen By-proxy (sp?) moms. They tell me to just relax and bring my kids to the park and to the beach! They think that if I just provide them a "nice life" they will be happy, healthy and grow out of it! INSANITY! I would like for them to try out a trip to the beach with my kids when they are in a pandas episode!

 

My kids have many health issues besides pandas. Recently we found out my 2yo needs surgery for an inguinal hernia. No one in my family is even phased by this stuff anymore b/c they think I bring it on myself. LIKE I CAN OR WOULD GIVE MY CHILD A PAINFUL HERNIA so that I can get attention! I wasn't even the one who found it, my husband was...they don't care, somehow it is my fault.

 

It is crazy that this illness can create so many walls in families. If they truly understood the suffering that was going on behind closed doors maybe they wouldn't add to it. I have half of my family avoiding us b/c my kids are a handful at family events and the other half getting pissed off b/c we can hardly make the time to see them. I can't win and I just feel more and more alienated each day. Funny how my husband's family is fully supportive. Maybe b/c they live closer and have seen things up close and personal...

 

OK, I'm done venting!

 

Stephanei

[mama2alex]

Wait a minute...I wouldn't be so dismissive of your aunts opinion, I mean,her husband did take a psychology course at the local learning annex in the late 60's...he probably has some useful insights.

 

Ha ha! This is what I was thinking - so ridiculous! I was glad to hear your mom defended you and your son so strongly! Hold on to that love and forget your aunt for a while.

[matis_mom]

Wait a minute...I wouldn't be so dismissive of your aunts opinion, I mean,her husband did take a psychology course at the local learning annex in the late 60's...he probably has some useful insights.

 

I also used a flight simulator once or twice in college so if you want when you take your next vacation I'd be more than happy to fly the plane for you!

 

(the puddle of goop around your computer right now would be the sarcasm that was dripping off of this post)

So what do I do when my brother-in-law comes to visit? He is a psychiatrist AND a neurologist! He currently works at Harvard... Supposedly he talked to a PANDAS expert (I'd like to know who) that told him that psych meds are the way to go! It kills me, because I know he is treating the son of some friend of theirs who has PANDAS with meds and not abxs, not even trying to work on the root cause!

They are coming to visit us for a couple of weeks, it's going to be a very interesting couple of weeks! Any time I talk to my sis she says her husband says we should have put him on meds a long time ago, and I say if I have to choose between psychotropic drugs and antibiotics, I choose antibiotics! Last time she went on about abxs resistance, etc, etc. I said we are trying to get at the root cause, and doing psych drugs is not going to do anything to solve the root problem here, to which she replies, "maybe it'll just go away" Well, it's been a year since diagnosis, and in aint' going away, so we are headed for plasmapheresis (hopefully?).

I do hope one day my brother-in-law gets to talk with a REAL PANDAS EXPERT and "sees the light"

Edited June 23, 2010 by mati's mom

[airial95]

Oh, you didn't hear? Your brother in law consulted bgbarns' uncle...that learning annex class is amazing!!!

 

Either that or it was a zoologist from Shanghai...

[norcalmom]

In a way we were lucky my son had such a bad tic. It was so in your face - everyone could see it. It was disturbing to watch. But, overall, it was not the worst thing we had to deal with. The compulsions, obsessions, fears, anxiety, irritablity, lack of sleep...all the things that only we see, were far worse than the tic. With the tic everyone could see something was very wrong, my son was fine one day and a twiching mess a few weeks later. It was a visitble sign of the illness. People were scared it could happen to their child. So when I explained it was reaction to strep, and that there were other things too - OCD, bedwetting, separation anxiety...and to be aware that if their kid started to act odd, they should check for strep (becuase sometimes there are no symptoms to strep - whic was our case). Yes...I used fear to convince them that pandas exists. The tic helped.