A few weeks ago, I posted the article “Your Pain Is Your Fault: What Doctors Say to Women” on the PANDAS Sucks Facebook Page. In response to that article, a fellow PANDAS Mom, Lisa M., said “We need to make a list of things doctors say to PANDAS parents.” And I replied, “Good idea! Let’s make this happen.”
So using Facebook, I asked PANDAS Parents, “What are some of the MOST RIDICULOUS THINGS your doctor has said to you about PANDAS/PANS?”
Oh My Goodness! There are some Ridiculous Things being said! And you’ll notice that there were multiple submissions from the same people. Apparently Ridiculous Things are kinda like Lay’s potato chips…you never hear just one Ridiculous Thing about PANDAS/PANS from doctors. Medical professionals really can be so clueless when confronted with something outside of the box while they whack at it trying to get it back in that box!!!
So enjoy reading these Ridiculous Things. You’ll be nodding your head and saying “yep, I had a doctor say that” and “what an idiot!” and “I cannot believe that a doctor would say something like that.” But it all happened, which is very sad. We come so far every day with PANDAS, and still all this ridiculousness. If you’d like to tell the world the Ridiculous Things about PANDAS/PANS a doctor has said to you, just click HERE to email me. I can do a Part II and III and more. There are so many Ridiculous Things said every day. Every! Day!
And for any Doctors reading these Ridiculous Things, I have a few ideas for you.
- Take a look at my PANDAS Sucks blog series “Your Words: PANDAS Sucks Because…” to see what else parents have to say about PANDAS/PANS.
- Check out PANDAS Network and actually read some current articles on PANDAS/PANS. Click HERE for a good one to get you started. It’s FREE online until November 22, 2014.
- Visit the new PANDAS Physicians Network‘s web site. It’s chockful of excellent information, including a PANDAS diagnostic flow chart.
- Do your research on PANDAS/PANS and never, ever say Ridiculous Things to Parents. Thanks in advance!
RIDICULOUS THINGS DOCTORS HAVE SAID ABOUT PANDAS/PANS
Best one I ever heard was from another parent (who was at an IOCDF conference). Her doctor told her when she asked about trying Azithromycin, “Azithromycin? That’s not going to do anything! You might as well rub a potato on it!” ~Lisa M.
The first psychiatrist we consulted (about acute onset rages and anorexia in a 7-year-old), told us our dd was a drama queen and must hate me (her mother). ~Lisa M.
Our ped (who had referred us to above psychiatrist) after our dd7 had dropped from 49 pounds to 42 pounds in a 2 week period, told us that our (anorexic and raging) daughter was “disturbing the other patients” when we brought her in to be seen. Really? ~Lisa M.
When I took my daughter to see her, at that time age 4. I suggested PANDAS because the OCD was so severe and practically overnight. Her reaponse was, no, cant be PANDAS. If she had PANDAS she wouldn’t be able to walk or talk and it just gets worse from there. Now that I know more then I care to know about this illness I see she had not a clue as to what PANDAS was. Thinking about her always gets me upset. My daughter was repeating questions about 300 times a day but she just gave me a suggested book to read about dealing with OCD in children. I had to actually go to California to get real medical help. ~Marlo
Ex-psychiatrist: “I know you are about to graduate with your MD and that you have READ a lot, but I’ve seen more patients than YOU and I feel you are doing your son a great injustice by refusing to believe he has a mental issue. He is sick, he’s going to be sick the rest of his life, and maybe after you have 2,3, or 4 other doctors telling you the same thing you will realize I was right.” ~Phoenix Parker-Cruz
“I’m familiar with PANDAS. I have never, ever heard of a child being treated with antibiotics and not anti-psychotics. This is why I don’t like for the parents of my patients to look things up on the internet Now you need to decide which one of us is the Dr here.” ~Kimberly M.
“Start building a basement apartment.” My child was 10 years old. ~R.S.
“Your son can’t have Lyme. Lyme is killed in three days of antibiotics. If you treated for three days, then he doesn’t have Lyme.” I then asked, “What about high IgM titers?” The doctor said, “That doesn’t mean anything.” ~R.S.
“We don’t know exactly what it is, but it looks like the Oedipal Complex. ~R.S.
We were with this pediatrician for the past two years working with her & Dr. T. for PANS. It was a year ago when we pushed Bartonella as new concern, but because the Quest Lab came back negative – it can’t be. Just yesterday when we were at Ped. office for concussion – she let us know that she’s been reading up that the medical community is beginning to turn away from any PANDAS dx. “I know you have another son that had strep…. and I have a couple of patients that got rid of their tics when they went on antibiotics, but ‘they’ now say that PANDAS doesn’t exist.” Lord, just let me get this concussion cleared so I can get out of here. ~Dana P.
The most ridiculous thing a doctor said was that my son had phimosis and that is why he has urinary frequency up to 100 times a day. We will need to circumcise him to correct it. Umm no. That was the dumbest thing a doctor ever said but there are plenty! ~Chris
My daughter was admitted to a prominent children’s hospital early in the illness, when we were still searching for a diagnosis. The neurologists had given up on her and had psychiatrists coming in to evaluate her. One of the psychiatrists told us that it was not PANDAS, my daughter was just “going through a phase.” ~Mandy
“Wow. They sure are complex. But there’s nothing I can do.” ~WN
Urgent care doc after I made the mistake of mentioning PANDAS refused to even swab my son’s throat because it “didn’t look like strep” and “even if he swabbed positive, he wouldn’t treat it because he was probably just a carrier, since his throat looked fine, so no need to bother swabbing”. ~Kristen B.
“Your son needs to be admitted to a clinic specializing in Anorexia Nervosa.” (In response to him not eating or able to swallow). ~Steven C.
“There is no such thing as PANDAS. Your son has Aspergers Syndrome” WRONG! ~Steven C.
“I told you he would lose his mind. I cannot help him” in response to extreme OCD and being forced into emergency IVIG without a single test being taken. ~Steven C.
“Yes, your daughter still has OCD, but the tics are gone… So she isn’t ill anymore.” ~Sonja K.
“At your daughter’s age it is normal for some kids to have tics or rages or depression or… No need to worry at all.” (They said the tics she had could be from stress because of starting school. Well, she still was in kindergarten at this time and had absolutely no stress.)~Sonja K.
“Do you want your child to be ill?! Stop talking about the tics when she can hear you and everything will get fine!” ~Sonja K.
“We have PANDAS patients in this practice. Twins. When they are exposed to strep, they get an eye twitch, which clears within 24 hours of taking antibiotics.” (A past pediatrician said that to me to prove it was NOT PANDAS despite all of the signs that seemed to point to the condition. That’s great, but I have never met a PANDAS child that presented so mildly.) ~Sarah
“I do not think this is classic PANDA presentation….He does look pretty good to me here in the room today.” 9These comments were in medical notes. The culture DID end up showing a positive strep infection even though he was asymptomatic other than PANDAS signs. Jesse had behavior issues, obsessive type behaviors, compulsions…it was very classic PANDAS presentation! OMG! If I had known then what I know now….) ~Sarah
“I talked with mom about his antistreptolysin O as well as his anti-Dnase B which were both negative. His strep actually did grow overnight so he has an acute infection, just not a past infection. Mom is again very upset about this. Is really wanting this to be PANDA. However I have again encouraged the need for Jesse to see a psychiatrist. I have also given her the name of a neurologist in Cincinnati who works with PANDA.”(All of this was written in my son’s medical records by a past the same past pediatrictian. Verbally, she told me, “NOT PANDAS…strep titers aren’t high enough,” but I didn’t know at the time that not all PANDAS kids have high strep titers. He had a current infection anyway, so the strep titers were moot! And as if anyone would WANT their child to have PANDAS. OMG!!! NO!!! Plus, that neurologist she was referring me to is not a PANDAS believer. Fortunately, I figured that out before I wasted 3 months waiting on the specialist appointment and cancelled it. Had a phone call with and a PANDAS Specialist who diagnosed my son within 10 minutes. Best money I ever spent on a phone call.) ~Sarah
“If all the kids were as bad off as Jesse was when he came in here the first time this place would be chaos.” (A different past pediatrician said that after I asked if I could refer patients to him since I was head of the local PANDAS support group. He was already treating two PANDAS patients and had seen the positive effects of my son’s IVIG and antibiotic treatments) ~Sarah
UPDATES: After I published this article, a few people emailed me with even more ridiculous things doctors had said to them about PANDAS. You just cannot make this stuff up! Here they are:
After reluctantly taking DS to see the psychiatrist and questioning him about PANDAS, his response made me so angry. He said, “oh you’re one of those people.”. ~Misty
An infectious diseases doctor we’d been referred to by my daughter’s pediatrician said “ASO titers of 850? That’s nothing, I’ve seen worse. You don’t need me, you need a psychiatrist.” I told the pediatrician never to refer potential pandas patients to her in the future. ~KH
“I just don’t buy into PANDAS. I think he needs medication for hyperactivity” (Pediatrician after being told how well son was doing since starting treatment for PANDAS-WITH HER COLLEAGUE). ~JQ
“Stop being stubborn, eat and take your medicine when your mother says” ER Doctor to 7 year old son taken to ER for anorexia, severe abdominal pain, headache, light and sound sensitivity 10 days after starting antibiotics for strep, the day before PANDAS diagnosis. Mother was concerned about encephalitis. ~JQ
“Stop taking antibiotics” Pediatrician when asked about what to do about for itching for scarlet fever. ~JQ
I was told by a Pediatric Neurologist who was “supposedly” familiar with PANDAS, that my only choice was to medicate my then ds10 with SSRI’s or sedatives and lock him in a dark room so I could get a break. That was his long term solution. ~BW
THANK YOU to everyone that participated in this article!!! And don’t forget that you can tell the world all of the Ridiculous Things Doctors have said to you about PANDAS/PANS with the world by clicking HERE.
That is way too much ridiculousness coming from people with medical degrees! Here’s to having intelligent PANDAS/PANS conversations with Doctors who have done their research. May you never hear any of these or similar Ridiculous Things about PANDAS/PANS while trying to get help for your child’s VERY REAL, MEDICAL CONDITION.
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.