I was reminded today why it is hard to hang out...

[Stephanie2]

strictly venting here and I have to preface this with the fact that I LOVE my neices and nephew as if they were my own...truly

 

But...spent the whole day with SIL and her kids. We both have 2 year old boys only 3 months apart, mine has severe pandas, hers is relatively healthy, mind and body. Mine has speech delay, hers is talking in full sentences. Mine is sensory sensitive (sound, tactile), hers was a trooper about getting sunscreen on and running through the fountains today. Mine has multiple tantrums, meltdowns, aggression and chronic whining. Hers is easy going and compliant. Mine has an abnormal gait and low muscle tone, hers is robust and strong. Mine ran away from the group, hers fully interacted. Mine fixated on DVD's in the car, hers whined just a little in the car. Hers would eat his own french fries at mcdonalds, mine HAD to eat MY french fries or there would be #### to pay. Mine requires multiple hernia corrections in a couple weeks and screams bloody murder when I change his diaper b/c of it. Hers is fully potty trained. Mine needs me to hold his ears in the public restroom (no easy feat when I am the one who has to go - and if I let go for a second he has a meltdown), fixates on the potty, the soap dispenser, the water, hers just goes potty and moves on. Mine requires every second of my attention, hers allows her to sit back and take fun pictures of them...

 

I could go on and on...it was just so sad to see my son suffering today when he should be "running in the fountains" and enjoying being alive! He is a miserable little baby and it breaks my heart to see my boys suffer so much!

 

 

I have a hard enough time dealing with the lack of normalcy in this house, but to be slapped in the face with the sharp contrast of my boys and her healthy kids was more than a little depressing today...

 

please don't get me wrong. I am so happy to see my nephew happy and healthy, and I think it is in part b/c I begged her to stop vaccinating in light of what has happened to my boys. she did stop vaccinating and I tryly believe that is why he is thriving. It just hurts...

[kimballot]

I SOO feel for you. I lived that feeling for a very long time. I still feel it sometimes. My friends post pictures of their healthy, robust tenage sons on facebook playing baseball and soccer, and I post easy-to-click buttons to vote for PANDAS on pepsi refresh and updates on my son's mucocele!!

 

But.. I have to say that somewhere along the way my son settled down and became a pleasure to be around. I can take him anywhere and not be embarrassed, and he is able to play and interact with other kids. He has friends, gets invited to parties, and my family has really come to love him and enjoy him (not just tolerate him).

 

I missed many a family event when he was younger - I either did not attend, or attended and spent the entire time monitoring him... Now I really appreciate events when he is off playing and I am relaxing with adults.

 

Getting to the point we are at today did take time and lots of medical and behavioral intervention... Life is a journey and the PANDAS journey does not come with a roadmap! (yet)

[peglem]

I've so been there too. There was a period of several years where I could not admire other people's babies...it just hurt too much. Its not that I was jealous or begrudged anyone their healthy kids. Heck, I was happy for them! It just made me so sad for me.

 

I don't remember when that changed, and I don't know why. Honestly, this thing has made me so reclusive, I seldom see anybody else's kids anyway!

[wornoutmom]

I SO get this. Its really heartbreaking for me to be around my son's peers sometimes and hear about all their accomplishments and see their normal social interaction with each other, while my son can barely get to school, can't read past the 5th grade level, is afraid to look others in the eye and feels like a freak. Its especially hard because every now and then we get a glimpse of who he "really" is and he's a great, sweet, funny kid behind this PANDAS mask. As painful as it is, I try to use this to motivated me to keep on fighting for him....

[saidie10]

strictly venting here and I have to preface this with the fact that I LOVE my neices and nephew as if they were my own...truly

 

But...spent the whole day with SIL and her kids. We both have 2 year old boys only 3 months apart, mine has severe pandas, hers is relatively healthy, mind and body. Mine has speech delay, hers is talking in full sentences. Mine is sensory sensitive (sound, tactile), hers was a trooper about getting sunscreen on and running through the fountains today. Mine has multiple tantrums, meltdowns, aggression and chronic whining. Hers is easy going and compliant. Mine has an abnormal gait and low muscle tone, hers is robust and strong. Mine ran away from the group, hers fully interacted. Mine fixated on DVD's in the car, hers whined just a little in the car. Hers would eat his own french fries at mcdonalds, mine HAD to eat MY french fries or there would be #### to pay. Mine requires multiple hernia corrections in a couple weeks and screams bloody murder when I change his diaper b/c of it. Hers is fully potty trained. Mine needs me to hold his ears in the public restroom (no easy feat when I am the one who has to go - and if I let go for a second he has a meltdown), fixates on the potty, the soap dispenser, the water, hers just goes potty and moves on. Mine requires every second of my attention, hers allows her to sit back and take fun pictures of them...

 

I could go on and on...it was just so sad to see my son suffering today when he should be "running in the fountains" and enjoying being alive! He is a miserable little baby and it breaks my heart to see my boys suffer so much!

 

 

I have a hard enough time dealing with the lack of normalcy in this house, but to be slapped in the face with the sharp contrast of my boys and her healthy kids was more than a little depressing today...

 

please don't get me wrong. I am so happy to see my nephew happy and healthy, and I think it is in part b/c I begged her to stop vaccinating in light of what has happened to my boys. she did stop vaccinating and I tryly believe that is why he is thriving. It just hurts...

 

this makes my heart break for you. it is truly not that you are not happy for your SIL and love her boys and enjoy being them, it just exaggerates the pain you feel for your precious boy! my thoughts are with you.

[Fixit]

This is a good place to come and vent....who but all of us can actually relate in the so many manifestations of problems and varities of sadness....

it's not just an info board....

it's emotional support too....

sorry we all have to be here....

and thanks to all who participate....

[sptcmom]

I can relate too. DS has had PANDAS for 6 years since age 2- we know that now. Sadly, he's always been delayed with stuff but minor to mod so he could kinda blend in but not fully since age 2. I've had to try extra hard all along as has he I'm sure when it came to talking in sentences, not being able to have abstract concepts, episodes of math and language decline, low muscle tone, bad handwriting, getting bad comments from teachers for sloppy work, poor in sports etc etc etc etc.......

All this while having classmates and friends and neighbors who are in the gifted program, talk your ear off, analyze situations, excellent in sports, win trophies and they all rub it in for him too. One nasty little boy actually bullied DS to run when DS was in the middle of a leg spasm/pains flare up Poor poor little guy. Now with the diagnosis, IVIG, high dose ABX, biaxin for Myco- he's finally able to catch a ball YAY!, connect the baseball bat to the ball, double YAY! and overall gross and fine motor is better, tactile and visual sensory processing is better and abstract language, logical reasoning and inferences have kicked in, he's able to dress himself, make decisions, be stubborn be assertive- he's 8.5 years old and has suffered so long....

Hopefully by God's grace, all our children will be well and get a little bit of their lost childhood back and grow normally from now on.

[Stephanie2]

Thanks for the support and yes thank God we have a place to vent when a bad day hits. I work so hard to remain positive and look at the progress we have made (and there has been a lot of progress), not the progress that has NOT been made. I have a ton of confidence that my boys will one day be very normal, even better than normal with all they have to overcome. But on a day like that where my own flesh and blood little neices and nephew are running around happy and healthy, it's hard to not understand why they got the good genes (or in my nephew's case, maybe he was spared BECAUSE of my boy's problems b/c my SIL stopped the vaccines after watching my boys go downhill). I would NEVER want it any other way and I truly mean that. I love my brother and SIL and never want to see them go through what we have been through.

 

BTW, I have to mention here that my 5 yo has been in such a good place lately and he was so good and happy at the park that day. He was interacting so nicely with my neices and he was just all smiles. I had such mixed emotions sitting there watching him so happy and my 2yo so miserable. I feel blessed that we are finally getting somewhere. It's just that this severe presentation of pandas with my 2yo is very new and it is hard to watch my second boy go through this...only so much suffering one mommy can watch, ya know?

 

Stephanie

[matis_mom]

Oh Stephanie! I know, it's hard. But take consolation in the fact that you can hang out with your SIL! So many here struggle with relatives who don't understand. It seems like she is listening to you, and trying to keep a good relationship between the cousins, in spite of this PANDAS nightmare. Let your brother's children be an inspiration to keep fighting, a reminder of what is inside your kids too, just waiting for this PANDAS thing to go away.

Edited June 27, 2010 by mati's mom

[TessaKrista]

Stephanie2...your sister in law is so fortunate that you have forewarned her about your experience with your boys and getting vaccinated. I am happy to hear that she respected you enough to heed your warning. Many people dismiss such warnings entirely.

 

Stephanie2, it was heartbreaking to read your story about how much deep sadness and pain you were in when your sister in law and her children got together, and how much sadness you feel in general. You can always let your sister in law know about your sadness, and to let her know how fortunate she is that her children are thriving. I think that people are not aware of other people's sadness, unless they experience something life changing themselves, unless they are very in tune with the other person, or unless the other person shares that experience with them. Perhaps she will end up being a source of support to you eventually when you need it.

 

Many blessings and prayers for your boys.

[Stephanie2]

Thanks! Actually, she has walked in on me while I was crying to my husband about our boys. My brother and his wife have witnessed all this and they know how hard things have been. She really does know that she is fortunate that her children are healthy b/c she has us to compare to. While we are always at MD's and therapy, she is taking her kids to ballet and playgroups. She tells me all the time she does not know how I do it...

 

For the most part I have come to accept my life and I have come to appreciate how far we have come with our boys. I was just having a moment of weakness that day (I posted this a couple weeks ago).

 

 

Stephanie2...your sister in law is so fortunate that you have forewarned her about your experience with your boys and getting vaccinated. I am happy to hear that she respected you enough to heed your warning. Many people dismiss such warnings entirely.

 

Stephanie2, it was heartbreaking to read your story about how much deep sadness and pain you were in when your sister in law and her children got together, and how much sadness you feel in general. You can always let your sister in law know about your sadness, and to let her know how fortunate she is that her children are thriving. I think that people are not aware of other people's sadness, unless they experience something life changing themselves, unless they are very in tune with the other person, or unless the other person shares that experience with them. Perhaps she will end up being a source of support to you eventually when you need it.

 

Many blessings and prayers for your boys.

[kimballot]

Stephanie 2... I like you! You have perked up my day and reminded me to keep my chin up. Thanks!

[JAG10]

Stephanie- I can totally relate! I actually scoped out families that looked less than perfect to park our beach gear next to over the weekend.... I figured if I got a moment to people watch, I didn't need to watch the prestine babydoll girls who played so contently to compare to mine who looked like a breaded cutlet before I could even get my flipflops off! She looked insane, but dd10 had a good time, so I can't complain. We must be in the "sensory seeking" camp

[Stephanie2]

Breaded cutlet!!! That is classic! Thanks for the laugh!

Stephanie- I can totally relate! I actually scoped out families that looked less than perfect to park our beach gear next to over the weekend.... I figured if I got a moment to people watch, I didn't need to watch the prestine babydoll girls who played so contently to compare to mine who looked like a breaded cutlet before I could even get my flipflops off! She looked insane, but dd10 had a good time, so I can't complain. We must be in the "sensory seeking" camp

[Stephanie2]

Stephanie 2... I like you! You have perked up my day and reminded me to keep my chin up. Thanks!

 

Thanks! Glad I could help!