"Do not take a child with PANDAS to Boston Children's Hospital," writes Beth Maloney, PANDAS activist, attorney and author of Saving Sammy, The Boy Who Caught OCD.
"I am working with a family whose PANDAS child was admitted to BCH due to eating issues. This is the second family I have represented within two months regarding BCH with the same fact pattern. In both cases, BCH has immediately told the parents that PANDAS/PANS does not exist, cut off the child's antibiotics, reported the parentsto Mass child protective services, and had the parents trailed by guards at the hospital. In both cases, BCH has actively encouraged children's services to remove the child from the custody of the parents unless the family signed a voluntary agreement to place the child in a locked psych unit. I will be in court tomorrow in Boston fighting Mass CPS on behalf of the current family who is trying to retain custody of their child.
"FIND A DIFFERENT HOSPITAL."
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OMG! I cannot even begin to describe the grief that I feel for this family.
And it merges with the grief I feel for my own family. Life at home, right now, is dreadful. My son is herxing like crazy and that's not an exaggeration. We need to make it through the herx, to the other side. Herxing means the antibiotics are working on the Lyme. We have been decreasing the amount of antibiotics because this little kid doesn't want to live like this anymore. He doesn't want to live.
His younger sister told me that she doesn't want to argue with him in case he's not alive one day. Stab me in the heart. (But then she goes on to argue with him anyway, so maybe she has more faith, or just not much patience. I opt for the latter.)
Heavy stuff for an 11 year old and for his 9 year old sister, who's been sobbing and hyperventilating. And for my husband. And for me.
The dog is still wagging his tail and dumping toys in our laps.
So, what do I do, take my son to a hospital? Sure thing, the one down the street believes in PANDAS and chronic Lyme. NOT! Westchester Medical Center? Just the opposite. I won't even go into all the details here and now, because I'm wiped out but WMC is under the governorship of infectious disease doctors who tried to create a Lyme vaccine and have sat on research showing that Lyme DOES in fact travel from a pregnant woman to her unborn fetus while claiming that this cannot happen. Look it up--it's all there on the internet. And of course, we had brought my son there in the beginning and did they ever test for PANDAS? No. In fact, they sent us on to a psychiatric hospital.
Hello, people! PANDAS is a medical disease, not a psychiatric one!
So, if I take my son to Boston Chidren's Hospital or a dozen others around the country, chances are that they will take him off antibiotics, call CPS and take my child away from me, maybe put him on psychiatric meds that will exacerbate his PANDAS symptoms. This is a nightmare.
When he broke his arm, I told the ER nurse (at a different hospital) that he had Lyme and PANDAS. I was lucky, because her husband has chronic Lyme so we immediately had an understanding. But what if she were one of these nonbelievers who would report me for giving him medication for a disease that she said didn't exist? And I told her he has PANS and was able to educate her about PANS. No, she'd never heard of it before. What? How can that be? Shouldn't our ER people all be taught about diseases that are recognized by NIH?
We have been to three top doctors who diagnosed my son with PANS and/or PANDAS. But that might not matter if we stumble into the wrong hospital with the wrong doctors. As it was, my baby was misdiagnosed for a long time.
And now, he's anguishing. He screamed out, "HELP! I just want to be CURED!" But what if some neighbor heard the cry for help and called the police when my son is in this state? What if they wanted to take him away and out of desperation, he fought them? It's happened before to PANDAS kids. And separation anxiety is a hallmark of PANDAS. Tics. OCD. Intrusive thoughts. Nightmares. Depression. Oh, what a fun, lovely disease.
He will be better one day. A friend told me that herxing like this is like (her words) "free falling" on a roller coaster, trusting that we will come up on the other side. Actually, she said it much more eloquently than I just summarized. But I'm operating on 3 hours of sleep and a ton of anguish.
Just remember this: no one takes my son away from me.
Or, do I really have the power to say that?
What can you do? What I did. Write to Boston Children's Hospital and let them hear your outrage. Just email your letter to public.affairs@childrens.harvard.edu .
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Addendum: This just in from Beth Maloney: