Following is an excellent impromptu essay written by a mom who has posted on a parent forum regarding PANDAS. It explains WHY many of us have had to choose daily antibiotics, IVIG or plasma exchange. As of the writing of this letter – many symptoms have been arrested with daily antibiotics – IVIG is now being sought. 7/01/09
Hey fellow PANDAS Moms, thanks for the support, you guys understand.
There is a 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 WD’s 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 in front 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 promptly came home from school 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 breakfast, 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 EM’s daughter who quit eating and had to be hospitalized?! She quit 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 S’s assistant twice. Each time I mentioned IVIG, she completely did not even comment on it saying “she had to go.” 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, there are efforts for another 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.
K. Mom of 2 boys