Literature review of Swedo's PANDAS research

[P_Mom]

Hey fellow PANDAS Moms, thanks for the support, you guys understand.

 

That is another point I want to make.

 

We post on this PANDAS forum because we have PANDAS children and we understand what we are all going through. There is NO way you can possibly understand the nightmare PANDAS can bring to your child and family unless you have lived it first hand.

Kind of like if you talk to a parent who has lost a child (not comparing the actual events), you can sympathize and your heart can go out to them, but, can you really understand unless you lived it? NO.

 

If anyone gets the risks associated with IVIG, (and antibiotics, pex, steroids, etc), it is us parents who have researched the pants off the disorder (I saw that lecture from Swedo almost a year ago), its treatments and have talked to countless doctors about it trying to save our children and families.

 

We are a network of parents who have gotten to know each other OFF this forum and have shared intimately our stories and struggles. Let me give you a glimpse:

 

My son went from a very happy, talkative, normal, energetic little boy to mentally ill basically overnight. He started loud, frequent vocal grunting, and then latter a babbling, low, grumbling "talking" sound ending with hissing that looked like it was straight out of "The Exorcist." We were terrified and I shook for days and lost 15 pounds in one month, my husband was brought to his knees and tears, literally. My little boy spent his days standing in a corner of a room looking at the floor because he couldn't bare to look at us...we were to "gross" to look at. He needed to know where I was at all times, yet, couldn't come near me or be touched by me, or anyone else. He stopped going out of the house and socializing with anyone. He blew germs out of his nose constantly and washed his hands constantly with tears in his eyes because "he couldn't get the stuff off." He couldn't watch t.v. He hid his hands and wouldn't touch anything...I could not touch any of his food or he wouldn't eat it. He started to hoard trash, food scraps, useless objects and get very upset if you wanted him to throw it away. He needed to write down and remember everything. He saw things, actually saw things that weren't there....'toon characters in his room, big ants, heard a horn warn him and then see a girl with blonde hair standing in his room. He would scream when he saw these things in the middle of the night and run out in the hall....we could not hold him or have him crawl in bed with us...we were too contaminated. So, this little boy would just cry (only 4 years old) and talk to himself that there was nothing in his room before bravely climbing back into his bed....only to run out in the hall screaming later. He visualized us ripping his stuffed animals heads off...I would be driving down the road and we would pass some joggers and he would become very concerned that I hit the people...etc, etc..the list goes on. If he were in school at the time...he would have never been able to go...he was incompacitated from this...so was our family. Like I said, you could only understand if you lived it.

 

And what about the 30 page story we PANDAS parents received on Worried Dads son...my gosh, if non PANDAS parents only knew. And the girl who had to literally hold onto her mothers leg while the mom took a shower because of her fear and anxiety, and the girl wanted to run out infront of cars because something was 'telling her to'...her Mom said she would have if she didn't keep an eye on her....and the normal little boy who promplty came home from scchool one day and pulled every single hair out of his head and wouldn't come out from under his bed....or the kids who scream they want to die...or they are going to kill someone else, usually a family member. And the parents who have bruises on them at all times from their kids hitting them, swearing at them..etc. These parents don't wake their kids up to go to school in the morning, feed them breakfaast, and then kiss them good-bye as they happily skip on to the bus. They wake up with children who are screaming and yelling and hitting and fighting tooth and nail not to go to school...every day is a battle and extremely terrifying and emotionally draining. And EAMoms daughter who quite eating and had to be hospitalized?! She quite eating! How serious is that?

 

We PANDAS parents are quite intellectually capable of knowing what we are doing and getting into. We are loving, compassionate parents who are going through ###### and are trying to save our children and families. So, when a treatment comes up that holds promise for helping our kids...yes, we do it!! We do it knowing everything about it, and pray desperately that it will work...you take the risks, the risks become minimal compared to PANDAS. You don't have much of a choice. Without treatment, these kids could likely end up homebound, institutionalized, and worse yet, the possibility of suicide and drug/alcohol addiction is higher in kids who suffer from mental illness (anxiety disorders, ocd, etc)

 

 

I also spoke with Swedos assistant twice. Each time I mentioned IVIG, she completely did not even comment on it saying "she had to go." Same like BMom said. So, presumptuous or not, I still believe there is much going on behind the scenes we are not aware of. I do believe it is very likely their hands are tied and very well may not be able to endorse IVIG at this point. The dozens of docs we PANDAS parents have spoken to do not think IVIG is a big deal, Swedo is only one doc, there are many more with different opinions on IVIG who do it almost every day (our immunologist), and feel it is safe. Plus, like I mentioned, Swedo is currently participating in a study on IVIG again! Risks? Yes, we know!

 

Walk a day in our shoes (during acute episodes) and perhaps you would understand why we chose to do IVIG.

 

Kelly

[EAMom]

Kelly,

 

your post brought tears to my eyes.

[T_Mom]

Kelly, Thank you.

 

You have captured the "PANDAS" nightmare in your post.

My heartbeat quickened as I read your recounting of your experience--only because I know our own experience has been so unbelieveably difficult over the past year and a half.

Thank you for capturing the horror so aptly.

 

The only thing I would add is the sense of personal alarm when you cannot seem to find anyone to help your child --who appears to suddenly be psychotic, and "gone" -- And the sense of despair and bewilderment you feel when you get the hint that the doctors are looking a bit strangely at YOU! As someone with a reasonably successful professional and personal life this was beyond the pail and makes one really annoyed --

 

As a parent I will do whatever is necessary to free my child from a living nightmare.

T.

[P_Mom]

Thanks to all!

 

 

Kelly

[amy s]

We PANDAS parents are quite intellectually capable of knowing what we are doing and getting into. We are loving, compassionate parents who are going through ###### and are trying to save our children and families. So, when a treatment comes up that holds promise for helping our kids...yes, we do it!! We do it knowing everything about it, and pray desperately that it will work...you take the risks, the risks become minimal compared to PANDAS. You don't have much of a choice. Without treatment, these kids could likely end up homebound, institutionalized, and worse yet, the possibility of suicide and drug/alcohol addiction is higher in kids who suffer from mental illness (anxiety disorders, ocd, etc)

 

Whoa, Kelly, great post. I just wanted to say that of course we all want to know what the risks are...(and every doc that has given this understands that they wouldn't write the orders if it weren't justified...it is safe when necessary)...but agree....in our case the risks were MINIMAL compared to life as we knew it and there is not a doubt in my mind that it completely saved my child's life. And if she didn't have IVIg they would have institutionalized her for sure. I am glad you posted this. I don't know what mild pandas looks like...I have a feeling that some on here do not understand the severity of this when it is not a mild case. I firmly believe that I have PTSD from dealing with this illness. Anyone else? Curious. It was the hardest time of my life, since August 12, 2007 (and even though things are great with her since IVIg in November 08...our family is not over it)....and we as a family live in fear every day that it may come back. IVIg was a little over 6 months ago for my dd. She is still doing great. She's not completely the same as she was before pandas (maybe some hyperactivity-mild- that she didn't have prior?), but our life is liveable and she has a future! She is loveable and a hilarious, great kid. We'd do IVIg again in a heartbeat if we needed to and could scrape up the dough. Prior to IVIg, birthday parties, public outings, even grocery shopping at times was not possible. I knew docs who had worked in child psychiatric hospitals and said they had never seen anything like my dd. (they happened to be a witness to one of her milder RAGE attacks and I had to beg to keep her out of an institution). And the thing is? They didn't even see the OCD which was really what was so debilitating and outrageous.

 

I am sorry for rambling. I seem to do that anytime I think about pandas anymore. I am always thinking of all of you guys and your little ones. Hang in there. Kelly, if you want to chat, send me a pm and I'd love to give you a call.

Regards,

amy s

[boychildsmom]

...the risks were MINIMAL compared to life as we knew it and there is not a doubt in my mind that it completely saved my child's life. And if she didn't have IVIg they would have institutionalized her for sure. I firmly believe that I have PTSD from dealing with this illness. Anyone else? Curious.

 

 

I can relate, and wondered if others felt this. Initial onset was so frightening, speaking about that year is still difficult. My safe place to vent was the laundry room, where I still occasionally flashback. The silver lining has been hearing my son's memories. He forgets the severe tics and his mind's betrayals. He remembers "wild dancing" together, but doesn't remember the tradition started with his chorea. He remembers singing in the car and bribes before doc visits, but not the long line of doctors. During blood tests and shots, we used a hand signal to show we were all on the same team. We still use it before school tests or music and sports events. Fear of the dark was one of his initial OCDs. It subsided with treatment. But we still use a bedtime ritual (each saying certain things in order) that used to calm him at lights off....and, still gets him yawning! I am amazed the experiences didn't leave scars or define those years for him. I agree it's a form of PTSD for myself and his dad. Maybe the flinching serves a purpose to keep us alert to signs of strep recurrence.