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Developmental Pediatrician doesn't believe in PANDAS!


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We had our daughter evaluated by a Dev Ped in late August, right before she turned 4 years old. We were concerned about her language delay and behaviors. She's been in speech therapy for about 6 months and even her SLP noticed a huge improvement with speech when she went on an antibiotic. Anyway, the Dev Ped tells me at the parent conference last night that PANDAS is not proven and he doesn't buy into it. No matter what I said about her improvement, he denied it had anything to do with antibiotics. She's at about a 2 1/2 year old level but turned 4 in September so any progress made he thinks is due to her moving out of the "terrible two's." Then came the immunization lecture! He could not believe I was ok with giving her antibiotics for PANDAS- something that doesn't exist- and not immunizing her. He said she had a way bigger chance of an abx reaction than she does a vax reaction. THEN he told me that he didn't think I was qualified to homeschool her with her delays. I could have cried. I am a mother of 4 and we've always homeschooled. I cannot imagine sending any of my children to school, especially HER! Clearly her immune system is not functioning properly and she's so anxious we resulted to putting her on Zoloft and Tenex. Not to mention her behavior problems. All I could think was who better to school her and be will her all day than her mother.

 

Isn't there some kind of proof PANDAS is real?

 

Also....

 

Her expressive and receptive language are both delayed. The kicker is, her Visual-Spatial Problem Solving was estimated to be at a 5 yo level 125% of her age, while her Functional Receptive Language was like a 2 1/2 yo, or 65% of her chronological age. The Dev Ped said he's never seen a child have that big of a gap and not have autism. Yet... she does NOT have autism! He said 99% of kids with test score numbers like her would be autistic, but she's not. She's the 1% who are deemed Developmentally Delayed and Communicatively Disordered because of her good social skills and lack of autistic stereotypies. That's a lot to swallow, but I am very thankful to be in that 1%. Wonder if it's PANDAS related???

Edited by Tattoomom
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Of course there's "proof" that PANDAS/PANS is real; there are any number of papers, including the most recent White Paper authored by Dr. Susan Swedo of NIMH and others.

 

Unfortunately, however, because PANDAS/PANS has yet to get its own diagnostic listing in the Magic Manual commonly referred to by the medical community at large (sorry, I know there's an acronym for it, but my brain is mush today), ignorant and/or territorial and/or lazy doctors continue to refer to PANDAS/PANS as something they have a choice to "believe" in or "not believe" in. :angry:

 

I would find myself another developmental pediatrician . . . one who, if not fully clued into PANDAS, at least has an open mind and a sincere desire to seek the best interventions for your child. I would do this in addition to consulting a PANDAS-savvy doctor, as the PANDAS docs are good and dedicated, but their availability and focus likely precludes their ability to fully and continually address all of your DD's developmental needs.

 

Sorry. Some doctors just aren't worth your time and trouble, unfortunately, no matter how heralded they may be in their specialties.

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Please try to get a phone consult with Dr. k or Dr T ASAP! That way you can get blood work and additional abx as needed. I'm so sorry you are having to deal with this...

 

The Ped ran a ton of blood work and it all came back normal, but she had already received abx and the blood work was done a bit too late, I'm afraid. We cannot afford a phone consult ($400)

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Of course there's "proof" that PANDAS/PANS is real; there are any number of papers, including the most recent White Paper authored by Dr. Susan Swedo of NIMH and others.

 

Unfortunately, however, because PANDAS/PANS has yet to get its own diagnostic listing in the Magic Manual commonly referred to by the medical community at large (sorry, I know there's an acronym for it, but my brain is mush today), ignorant and/or territorial and/or lazy doctors continue to refer to PANDAS/PANS as something they have a choice to "believe" in or "not believe" in. :angry:

 

I would find myself another developmental pediatrician . . . one who, if not fully clued into PANDAS, at least has an open mind and a sincere desire to seek the best interventions for your child. I would do this in addition to consulting a PANDAS-savvy doctor, as the PANDAS docs are good and dedicated, but their availability and focus likely precludes their ability to fully and continually address all of your DD's developmental needs.

 

Sorry. Some doctors just aren't worth your time and trouble, unfortunately, no matter how heralded they may be in their specialties.

 

The Developmental Ped here is a tool. Cocky and "know-it-all" but he's one of the only ones in town and the only one on my insurance so we had to suck it up. Thankfully, since she wasn't autistic, he doesn't want to see her until next year.

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If there is a next time I hear a doctor actually speak the words "I don't believe in pandas" ...without skipping a beat I'm going to reply "I don't believe in co-pays for ignorant professionals" and walk out.

 

Really....at that point, what have you got to lose.

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Well, since this isn't the Easter Bunny we're talking about, what he "believes" isn't relevant. This is about an illness that has been documented by studies and research. There are plenty of papers you can take to him to back that up. I would tell him that you aren't interested in his beliefs. You are interested in facts backed up by research. See ya.....

 

Find another doctor.....You need a specialist.

 

Dedee

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I basically told him that he was entitled to his opinion and we agreed to disagree on a lot of things.

 

I know we need a specialist, but that's so much easier said than done :( We are a one-income family and I'm a SAHM to 4 kids. We have health insurance but no PANDAS specialists within 6-8 hours of us. We cannot afford to travel far or often. It's hard. I don't know how some of you do it!

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I basically told him that he was entitled to his opinion and we agreed to disagree on a lot of things.

 

I know we need a specialist, but that's so much easier said than done :( We are a one-income family and I'm a SAHM to 4 kids. We have health insurance but no PANDAS specialists within 6-8 hours of us. We cannot afford to travel far or often. It's hard. I don't know how some of you do it!

 

Are you anywhere near St. Petersberg? I believe the Rothman Center at University of South Florida takes insurance. They treat PANDAS both medically and with behavioral therapy. Here are some links:

http://health.usf.edu/medicine/pediatrics/rothman/index.htm

http://health.usf.edu/medicine/pediatrics/rothman/clinical+services/clinservices.htm

 

I know others here have been helped by these doctors. They believe and know how to help.

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Also....

 

Her expressive and receptive language are both delayed. The kicker is, her Visual-Spatial Problem Solving was estimated to be at a 5 yo level 125% of her age, while her Functional Receptive Language was like a 2 1/2 yo, or 65% of her chronological age. The Dev Ped said he's never seen a child have that big of a gap and not have autism. Yet... she does NOT have autism! He said 99% of kids with test score numbers like her would be autistic, but she's not. She's the 1% who are deemed Developmentally Delayed and Communicatively Disordered because of her good social skills and lack of autistic stereotypies. That's a lot to swallow, but I am very thankful to be in that 1%. Wonder if it's PANDAS related???

 

 

the facts that you discuss her only make me think it is pandas. . my ds has factors of lots of 'labels' but not enough to be diagnosed with them. . . thankfully. the savvy behavioral ped we first saw was evaluating him on her mental checklist. .. . behaviors seem like asperger -- nope this appt is totally NOT asperger-like; coudl be hearing/auditory -- nope, just proved that wrong; etc. . then, what you describe sounds like OCD, but he's awfully young -- there's something called PANDAS.

 

 

this doc reminds me of something a Lyme doc said at a conference. . . 'okay, you're saying it's not Lyme -- then figure out WHAT it is and help thse people!" i apologize if i'm wrong, but it sounds a bit like the doc is trying to lay blame on you. he agrees she's delayed and things is quite different than what he usually sees -- what is he suggesting? public school and vaccs? when i hear things like that, i just have to think. . . if only it were that easy!

 

i know you mention you homeschool but does the school system have any type of help to offer -- through ChildFind or something that coudl help without you being in the system? We had ds eval-ed by them when he was in private kindergarten. It wasn't a helpful eval b/c he met all levels he needed to -- but if she is delayed for age, they may be able to help. just an idea.

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Also....

 

Her expressive and receptive language are both delayed. The kicker is, her Visual-Spatial Problem Solving was estimated to be at a 5 yo level 125% of her age, while her Functional Receptive Language was like a 2 1/2 yo, or 65% of her chronological age. The Dev Ped said he's never seen a child have that big of a gap and not have autism. Yet... she does NOT have autism! He said 99% of kids with test score numbers like her would be autistic, but she's not. She's the 1% who are deemed Developmentally Delayed and Communicatively Disordered because of her good social skills and lack of autistic stereotypies. That's a lot to swallow, but I am very thankful to be in that 1%. Wonder if it's PANDAS related???

 

 

the facts that you discuss her only make me think it is pandas. . my ds has factors of lots of 'labels' but not enough to be diagnosed with them. . . thankfully. the savvy behavioral ped we first saw was evaluating him on her mental checklist. .. . behaviors seem like asperger -- nope this appt is totally NOT asperger-like; coudl be hearing/auditory -- nope, just proved that wrong; etc. . then, what you describe sounds like OCD, but he's awfully young -- there's something called PANDAS.

 

 

this doc reminds me of something a Lyme doc said at a conference. . . 'okay, you're saying it's not Lyme -- then figure out WHAT it is and help thse people!" i apologize if i'm wrong, but it sounds a bit like the doc is trying to lay blame on you. he agrees she's delayed and things is quite different than what he usually sees -- what is he suggesting? public school and vaccs? when i hear things like that, i just have to think. . . if only it were that easy!

 

i know you mention you homeschool but does the school system have any type of help to offer -- through ChildFind or something that coudl help without you being in the system? We had ds eval-ed by them when he was in private kindergarten. It wasn't a helpful eval b/c he met all levels he needed to -- but if she is delayed for age, they may be able to help. just an idea.

 

He said she has Global Developmental Delay, is Communicatively Disordered and suffers from Fragile Child Syndrome. He also told me I was not qualified enough to homeschool her with her delays, he lectured me about immunizations and said my "gentle parenting" doesn't work on "difficult children" and suggested my husband and I take his parenting classes and he promised me I would have a different child in 6 months, but I'd have to be willing to be a ######. Literally verbatim. Be a ###### to my dev delayed child? In a nut shell, he advised us to get her up to date on her vaccines and ship her off to school. That was his advice. COMPLETE WASTE OF TIME!

 

Edited to add- *Oh, and ODD. I almost forgot that her tantrums and meltdowns are because she has oppositional defiant disorder, which I don't believe for a second!

Edited by Tattoomom
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Tatoo Mom,

 

I can find no medical references to "Fragile Child Syndrome." This does not appear to be a real diagnosis--maybe just a description this doctor likes to give to certain types of patients? It seems very odd that he would give this type of description and then say gentle parenting won't work. Hard to imagine harsh parenting would be the right approach for a fragile child!

 

You are a veteran homeschooler--how could your child possibly do better in a crowded classroom than home with you?

 

Yes--just chalk this up as another pointless doctor visit, apart from the good news on autism.

 

Ko's Mom

 

(PS I am pretty sure my DS, if tested at that age, would have shown a similar gap between language and spatial reasoning and he is not autistic. For language delay, you might think about looking into the Earobics or Hearbuilder computer programs. Also, even if you are homeschooling, you might be able to get SLP services from the state--in some states these services are available for pre-school kids. This would be very worthwhile pursuing; it can be difficult to get insurance coverage for language therapy.)

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