Ahh... the STRESS of all this...

[CandKRich]

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Edited August 12, 2013 by CandKRich

[tired mom]

Ahh yes the stress!!! Not only is it nearly impossible to explain this illness to close family members it almost sounds crazy to people who don't have a clue. Don't forget we are so consumed with this disorder and have fried our brains searching for answers. So don't let the ignorance of eye-rollers interfer with your decisions. Remember that you know best for your child and the strep- carrier is moving anyway so let her roll away.

[dcmom]

Hi Karen,

 

I sympathize with your stress.

 

I can tell you that I know a PANDAS parent can be a very lonely place to be. We moved to our new home from a few hours away (where all my friends and family lives) about a year before pandas hit. I was just starting to settle in and make some friends. Once pandas hit, I found myself really pulling back from our new community. I haven't made many close friends here in part because of pandas. Most parents don't know what my kids are going through. I really only discuss it with immediate family. I have also not discussed it much with good friends via phone- they know what is going on, but how do you explain, and who wants to go into detail on the phone, about our daily issues.

 

For outsiders I really talk about pandas as an illness. I say, very matter of factly, that they were diagnosed with an autoimmune disorder that was triggered by strep, and can cause neurological symptoms. I say it with authority, frankly, because we were lucky enough to have quick and confident diagnosis. I haven't had an eye roll (that I have seen)- not sure how I would react to that. I live in a very liberal and educated community, maybe that is why- and when you really start talking to people it is amazing how many kids have issues: adhd, allergies, etc.

 

I think you should consider buying a bunch of copies of Saving Sammy, and hand them out to those who are annoying you.

 

I think you should gather all of the love and support that we all have for each other on this forum for yourself. Surround yourself with positive friends and family, and keep at arms distance those who are not supportive.

 

We need to say, OUR CHILDREN ARE SICK. That is the bottom line. It is like anything else: they are sick, and as a parent we will do what we have to in order to get them healthy. Period.

[kimballot]

Karen - I listened to you. I heard. You are in my prayers. I'd like to tell you not to worry and it doesn't matter, but I don't think that will help. I've learned to say as little as possible to as few people as possible. I don't know if that is right, but that is how I deal with it. I have a few teachers and social workers we've met along the way whom I can trust and who rejoice in remissions with me.

 

I have a little story that you may find interesting. I was just cleaning out a bedroom and found a notebook from when my son was in summer camp at 7 years old. It was a little communication notebook between myself and the counselors. It is interesting, because the first few notes are all written very nicely, with smiley faces and exclamation marks from the counselors. Then we have a day that says "We made a stop at a water fountain for a drink and he refused to leave for over 10 minutes". The next day says he had a meltdown at the end of the day. The next day he was not listening... It looks like I had him home for 2 weeks and then he went back to camp... UGH! I have a note from me that his tooth was loose and ready to fall out... Then 2 days of detailed notes from the counselors starting on July 28, about all the bad behavior all day long, refusing to throw his garbage, spraying kids in the face at swim time, running away, etc. Then a note from me saying it may be a sinus infection I called the doctor. Then the last note from the camp on July 30 painfully detailing every hour of camp and how he did not listen, did do what they said, spit at the counselors.. etc...etc. That night I received a phone call telling me he could not return to camp (it was not the first time nor the last time he was asked to leave such an activity).

 

After reviewing this little notebook today, I sat down and pulled up my excel file that I now keep of all my son's symptoms and medications etc. to fill in the details about his behavior that summer. In July of that year I plugged in "lots of trouble at camp. Ramped up mid July, major problems July 28-30". Then I scrolled over to the treatment column, which is already filled in. Sure enough... it says " off antibiotics 6/1- 7/29!" I think that was the longest he ever was off ABX. Sounds like I should have made that phone call to the ENT a couple of weeks earlier and sounds like I should have known to keep him home once things started ramping up. I sure wish I had this forum back then!

 

I'll have you know that 4 years later my son actually went to sleep away camp for a week (he has now gone 2 years in a row) without ANY behavioral problems. In fact, he won the award for "most polite" one year!

 

Having a child who is different is often painful and lonely. In the end, though, what really matters is person your child becomes. I have learned that many of the mothers who would not let their children play with my son when he was younger now call me for advice as their children have presented with challenges along the way.

 

I wish you well on this journey.

Edited May 18, 2010 by kimballot

[saidie10]

Having a child who is different is often painful and lonely. In the end, though, what really matters is person your child becomes.

 

 

WOW....tears are streaming down my face. Kim, this line you wrote is so powerful. The pain you guys are suffering for your children is REAL as I am feeling it too. Glad you have a place to let out your true honest emotions and feelings. Thanks for venting Karen and hang in there!

[memom]

You are not alone. You put into words many of the feelings I have experienced over the past years. I find that I pick and choose who I tell what. I find that I make excuses about why my daughter won't be going to college next year. The next question is alway's, "Well then, what WILL she be doing?" To that I say, "trying to heal". Now with initial insurance refusal for IVIG, it kind of feels like the health care system is also poopooing my daughters illness. No different than many others on this forum.

 

Know that you are not crazy, nor overprotective. Just hoping to get to normal. Don't stop fighting the fight.

 

Ellie

[Fixit]

i could copy and paste what you are saying and email it to a dozen people......

I've had all those experiences.....

i too just shut down.... i do that naturally becuase i just want to think....and the less said the better..i find

 

and when kim said

Having a child who is different is often painful and lonely. In the end, though, what really matters is person your child becomes.

that is all i focus on.....

 

but i don't care, this is war!!!!....I just want my kids healthy!!!!!

[peglem]

Its true that our kids don't LOOK sick...and anyway mental illness is not taken seriously in this country by people who have never had a close relative suffering from it.

 

find myself not explaining PANDAS, or even using that word. I just say she has an autoimmune disease, triggered by strep that causes neuro problems. I guess, I'm fortunate(?) that there is obviously something wrong with my child- but, still most are content to call it autism, not a medical condition. For me, doctors are the worst about accepting the autoimmune condition. Most of them are so sure that there is no cause for autism.

[parents4eyes]

x

Edited September 9, 2010 by parents4eyes

[airial95]

Karen,

 

I can relate - we get the same treatment from folks, and worse since our little guy is only 2. We get the eye rolling combined with the "he's 2, that's what 2 year olds do", and the comments about how we're not diciplining him properly, he's doing it for attention, etc...

 

One of the worst quarters for us was my own mother! For months she would tell me I was making mountains out of molehills and that he was just fine. Then, they had the kids one weekend and he went into full meltdown mode. Suddenly - my know it all mother was calling me frantically asking what was going on - what should she do. I no longer get attitude from that side of the family anymore.

 

Originally, we tried explaining it as he has OCD and ADHD. But that didn't help any of the attitude because most people think that somehow those things are related to bad parenting too. I think it's just the common misperception of what those disorders are. But now we've approached it similarly to DCmom - it's an autoimmune disorder that makes him more vulnerable to strep and it causes neurological issues. That seems to help too.

 

I wish you luck, and we'll keep you in our prayers. The most important thing to remember is that your kids need you, so what matters most is what you think - not the neighbors or anyone else!

[kim]

Karen,

 

I just posted this on another thread (I'm thinking my computer is going to crash again soon and trying to unload some info that I don't want to lose) but I thought of your son when I was going over this. Does he have any skin issues, by chance? I couldn't really find any good reference for this but thought you might be interested. You might want to read the last post on the N acetylglucosamine thread that has a little more info. I'm starting to wonder if there shouldn't be a little better look at yeast antibodies in these conditions too which I believe Stefanie has just posted about her PA/Dr.s opinion on that too.

 

http://en.wikipedia.org/wiki/Malassezia#ci...e-TTMArchive-14

 

It is hypothesized that individuals with Trichotillomania suffer from a sort of autoimmune-disordered reaction to Malassezia and/or Candida yeast. Since Malassezia is especially present in the hair follicles and scalp, "hair pulling is like sneezing: the body is attempting to rid itself of an allergy-causing irritant." [15]

Edited May 19, 2010 by kim

[matis_mom]

But I guess I need to write this down for cathartic purposes. Maybe I need a therapist

 

Hi Karen,

I know how you feel! I could go on with my own experiences, but I thought I would share with you'll a little cathartic exercise I found in a homeschooling website (yes, we homeschooling moms need to let it out every now and then!!!)

 

http://thepioneerwoman.com/homeschooling/2...artic-exercise/

 

Don't mean to be disrespectful to anyone's feeling (I so there myself), but I thought a little humor would help

 

Isabel

[tantrums]

I also had a really hard time with my mother. Of course her first grandson couldn't have something wrong. I should've fixed it if it was you know!! She was in denial, it was all my fault - until as someone else said, she had him for a weekend. My father had the audacity to not buy him two happy meal toys (which he has done in the past for some reason) and DS screamed and wouldn't leave McD's.

 

I think most other people just don't get it. But I'm not going to stop telling people it's PANDAS. The more it gets out, the more people will understand sometime.

 

in the meantime, all we can do is hang in there.

 

I sure have meltdowns myself. I miss the days right after my spinal surgery in January where NOTHING was expected of me and everything was done for me. How sad is that?

[ajcire]

Isabel, I love it! Kinda makes you feel like yelling that at some of the doctors too.... You want the truth? You can't HANDLE Pandas!

 

 

 

 

But I guess I need to write this down for cathartic purposes. Maybe I need a therapist

 

Hi Karen,

I know how you feel! I could go on with my own experiences, but I thought I would share with you'll a little cathartic exercise I found in a homeschooling website (yes, we homeschooling moms need to let it out every now and then!!!)

 

http://thepioneerwoman.com/homeschooling/2...artic-exercise/

 

Don't mean to be disrespectful to anyone's feeling (I so there myself), but I thought a little humor would help

 

Isabel

[matis_mom]

How about, "You can't HANDLE strep!"

Isabel, I love it! Kinda makes you feel like yelling that at some of the doctors too.... You want the truth? You can't HANDLE Pandas!

 

 

 

 

But I guess I need to write this down for cathartic purposes. Maybe I need a therapist

 

Hi Karen,

I know how you feel! I could go on with my own experiences, but I thought I would share with you'll a little cathartic exercise I found in a homeschooling website (yes, we homeschooling moms need to let it out every now and then!!!)

 

http://thepioneerwoman.com/homeschooling/2...artic-exercise/

 

Don't mean to be disrespectful to anyone's feeling (I so there myself), but I thought a little humor would help

 

Isabel