Regressive autism or PANDAS?

[DonnaD]

Hello all,

 

I'm new to this forum, but have read many, many posts and have to say I'm pretty certain my children (2 boys) have PANDAS. I have a daughter who has had strep with subsequent ocd/handwashing and hallucinations of bugs crawling on her when she was 3, but no further long term behavioral/cognitive/learning issues. My boys have been dx'd with regressive-type autism, but I have always wondered about whether a pathogen has been the culprit all along, due the to sudden onset of bizarre behaviors in my older child after an infection, and a more subtle change in my youngest after an upper respiratory infection. Sadly, my youngest has NEVER been cultured for any type of strep! This seems unbelievable, but, he is less verbal than his older brother who can complain of a sore throat and has tested positive for Strep repeatedly. My eldest currently has a sore throat, is in PA with his grandmother for vacation and she is taking him to doc for another test tomorrow. His infections are so frequent, with subsequent sinus/ear infections, that we rarely take him to doc anymore, but now realize it prolbably is Strep and will now take him more often. I stumbled on the PANDAS idea a few years back, but dismissed it...not sure why. I even talked with a neurologist from NIMH (Dr. Buckley) and brought up the PANDAS idea. She told me about Dr. Swedo, her colleague, but they were so interested in enrolling my boys in the Minocylcine study, that PANDAS was brushed aside. INterstingly, minocycline is an antibiotic with neuro- anti-inflammatory role, so no wonder so many so called "autistic" children are improving on it! My boys have ALWAYS improved with sp/language and behaviorally on antibiotics. I have brought this up repeatedly to doc's but once again, it's brushed aside as not being very relevant. But, it's very relevant when your child begins to speak again during antibiotic treatment!

 

What brings me to this forum? AFter watching the episode of "Mystery Diagnosis" the other night, I was alarmed at the startling resemblence of the boy shown in the episode with my own boys regression. Finally, I had that "aha" moment. Since then, I've spent hours combing the internet about PANDAS and have found this forum to be so very helpful. I live an hour from Dr. Latimer, so I'll try tomorrow to set up appt. for both boys.

 

I've spent years trying to find out what's wrong with my kids...chronic illness, regressions, fluctuations in development, behavior...it's unbelievable that after 12 years of research, that we may finally be able to help them. The "autism" label has been a blessing for services, but a curse when seeking medical treatment. Each and every symptom they exhibit during periods of illness, is dismissed as "behavioral."

 

Anyone out there have children with autism or PDD/NOS, with comorbidities (ADHD, OCD, ODD, Semantic/pragmatic language delay, ear infections, sinus infections, eczema, chronic upper resp infections or asthma?) who were subsequently dx'd as PANDAS?

 

Interestingly, I have Graves disease (autoimmune thyroid disease) and many other family members have many rheumatological disorders....no surprise my kids may have an autoimmune response to strep!

 

Thanks so much ahead for any help and a sanity check..

 

Donna

[JAG10]

Oh, Donna... sorry.

 

Good observation about being unable to report strep symptoms. I wonder how many of our kids who are "asymptomatic" were just too young to report or perhaps became too cognitively impaired to report?

 

PM Johnsmom. They are actually in Chicago now as he's scheduled for IVIG tomorrow. He was diagnosed PDD-NOS which Dr. K determined was "junk diagnosis" for him. Click on her name which will take you to her profile, then click send member a message. She can tell you all about it!!!

 

I just bumped up a thread about the OCD conference in DC this July. Some PANDAS docs and some very experienced and intelligent parents will all be speaking and holding Q & As on Friday, July 16. Something to consider since you are nearby; a crash course!

[tpotter]

I know you said you are going to set up an appointment with Dr. Latimer. She is a wonderful doctor...very caring, and very, very knowledgeable. I don't know if you are aware, but she is out for awhile, due to a family tragedy. But, I was told by her office manager today that she is planning to be back the beginning of August. So, if you can wait that long, I would call her office immediately to get an appointment.

 

Alternatively, you might want to consider Dr. K (in Chicago) or Dr. B. (in CT).

 

Any way you go, I would definitely recommend that you contact Dr. Cunningham in OKC, and get her test kit. It is $400, but given as a donation to the OU Foundation, so it is tax deductible. Personally, I have 2 children who are diagnosed with PANDAS...1 has classic symptoms that still took 4 years to diagnose, and another 1 1/2 to get the first treatment. The other is diagnosed with Asperger's, but I now wonder how much of his symptoms could have been controlled if we had known about PANDAS. He presents very differently than my other son, but because of Dr. K, he is now diagnosed with PANDAS, and the greatest thing has been that he responded, literally OVERNIGHT to antibiotics. Dr. K. diagnosed the first time, but Dr. L. did do the treatments, as we are also much closer to her. I have been very happy that I have been to both (as have other parents), because we have needed to use one or the other at various times.

 

Here's the clincher...if it wasn't for Dr. Cunningham's test, we would not know for sure that our older son (with the Asperger's) actually definitely had PANDAS, and trust me...his symptoms got really, really bad, until he was treated with PEX (he still needs another round of PEX or IVIG.) We repeated Dr. C's test, because the symptoms were coming back, and they looked like Bipolar. I can't recommend her test enough, because it can really help you to make a clear decision in your own mind if it is PANDAS, particularly in cases where it isn't clear.

 

Finally, if you go to Dr. Latimer, she will probably want to see the test results (she puts a tremendous amount of faith in Dr. C's work), and it also doesn't hurt to have the test results for Dr. L, Dr. B, or anyone else you choose to use for that matter.

[DonnaD]

I know you said you are going to set up an appointment with Dr. Latimer. She is a wonderful doctor...very caring, and very, very knowledgeable. I don't know if you are aware, but she is out for awhile, due to a family tragedy. But, I was told by her office manager today that she is planning to be back the beginning of August. So, if you can wait that long, I would call her office immediately to get an appointment.

 

Alternatively, you might want to consider Dr. K (in Chicago) or Dr. B. (in CT).

 

Any way you go, I would definitely recommend that you contact Dr. Cunningham in OKC, and get her test kit. It is $400, but given as a donation to the OU Foundation, so it is tax deductible. Personally, I have 2 children who are diagnosed with PANDAS...1 has classic symptoms that still took 4 years to diagnose, and another 1 1/2 to get the first treatment. The other is diagnosed with Asperger's, but I now wonder how much of his symptoms could have been controlled if we had known about PANDAS. He presents very differently than my other son, but because of Dr. K, he is now diagnosed with PANDAS, and the greatest thing has been that he responded, literally OVERNIGHT to antibiotics. Dr. K. diagnosed the first time, but Dr. L. did do the treatments, as we are also much closer to her. I have been very happy that I have been to both (as have other parents), because we have needed to use one or the other at various times.

 

Here's the clincher...if it wasn't for Dr. Cunningham's test, we would not know for sure that our older son (with the Asperger's) actually definitely had PANDAS, and trust me...his symptoms got really, really bad, until he was treated with PEX (he still needs another round of PEX or IVIG.) We repeated Dr. C's test, because the symptoms were coming back, and they looked like Bipolar. I can't recommend her test enough, because it can really help you to make a clear decision in your own mind if it is PANDAS, particularly in cases where it isn't clear.

 

Finally, if you go to Dr. Latimer, she will probably want to see the test results (she puts a tremendous amount of faith in Dr. C's work), and it also doesn't hurt to have the test results for Dr. L, Dr. B, or anyone else you choose to use for that matter.

[DonnaD]

I know you said you are going to set up an appointment with Dr. Latimer. She is a wonderful doctor...very caring, and very, very knowledgeable. I don't know if you are aware, but she is out for awhile, due to a family tragedy. But, I was told by her office manager today that she is planning to be back the beginning of August. So, if you can wait that long, I would call her office immediately to get an appointment.

 

Alternatively, you might want to consider Dr. K (in Chicago) or Dr. B. (in CT).

 

Any way you go, I would definitely recommend that you contact Dr. Cunningham in OKC, and get her test kit. It is $400, but given as a donation to the OU Foundation, so it is tax deductible. Personally, I have 2 children who are diagnosed with PANDAS...1 has classic symptoms that still took 4 years to diagnose, and another 1 1/2 to get the first treatment. The other is diagnosed with Asperger's, but I now wonder how much of his symptoms could have been controlled if we had known about PANDAS. He presents very differently than my other son, but because of Dr. K, he is now diagnosed with PANDAS, and the greatest thing has been that he responded, literally OVERNIGHT to antibiotics. Dr. K. diagnosed the first time, but Dr. L. did do the treatments, as we are also much closer to her. I have been very happy that I have been to both (as have other parents), because we have needed to use one or the other at various times.

 

Here's the clincher...if it wasn't for Dr. Cunningham's test, we would not know for sure that our older son (with the Asperger's) actually definitely had PANDAS, and trust me...his symptoms got really, really bad, until he was treated with PEX (he still needs another round of PEX or IVIG.) We repeated Dr. C's test, because the symptoms were coming back, and they looked like Bipolar. I can't recommend her test enough, because it can really help you to make a clear decision in your own mind if it is PANDAS, particularly in cases where it isn't clear.

 

Finally, if you go to Dr. Latimer, she will probably want to see the test results (she puts a tremendous amount of faith in Dr. C's work), and it also doesn't hurt to have the test results for Dr. L, Dr. B, or anyone else you choose to use for that matter.

[DonnaD]

Oh, Donna... sorry.

 

Good observation about being unable to report strep symptoms. I wonder how many of our kids who are "asymptomatic" were just too young to report or perhaps became too cognitively impaired to report?

 

PM Johnsmom. They are actually in Chicago now as he's scheduled for IVIG tomorrow. He was diagnosed PDD-NOS which Dr. K determined was "junk diagnosis" for him. Click on her name which will take you to her profile, then click send member a message. She can tell you all about it!!!

 

I just bumped up a thread about the OCD conference in DC this July. Some PANDAS docs and some very experienced and intelligent parents will all be speaking and holding Q & As on Friday, July 16. Something to consider since you are nearby; a crash course!

[DonnaD]

Thanks for the info on PM Johnsmom.! I'll also look into the OCD conference. I have so many friends whose children have OCD and regressive autism who would be interested to know that strep may be the culprit. I'll send on the message and info. I just received an email from a friend unfamiliar with PANDAS who happened to mention frustration that her boy tested + for strep again and the entire family were either carriers or had strep!

[JAG10]

Oops, my mistake. the (PM) part means send a PM-personal message and you do that by clicking on the username like Johnsmom.

 

Hope that helps.

[DonnaD]

I had no idea about Dr. L's family tragedy! That's terrible news!

 

You mention Dr. C's testing. How do I order the test kit? Is there a link?

 

Your son responding overnight is so encouraging. I too, have seen both my boys, during their language regression phase, respond overnight to antibiotics with more frequent language use and dropping of sterotypies like echolalia or verbal stimming/improvement in mood/irritability that's most likely verbal OCD. After the end of treatment, however, regression occurs again. Every time I bring up this correlation, the doc's ignore me. I suppose unless they're immunologists or PANDAS experts, they just aren't connecting dots.. It's so very frustrating that it's dismissed. I suppose I may need to record the incidents and improvement to have them understand how significant it is?

[forjpj]

Donna...it sounds like you are in the right place. My son was diagnosed with sensory integration disorder and ocd when he was 5. He had scarlet fever when he was two. At age 9 he was diagnosed with pandas, Dr L felt this had probably been the problem all along. It is very upsetting to think of all the children suffering and misdiagnosed. I'm sorry you are here, but at the same time I'm happy you are...if you know what I mean!!

[AmbersMommy]

Hi,

 

My daughter is 6 and we just saw Dr. Bouboulis today for the first time. He said he is 90% sure my daughter has PANDAS. I'm replying to your post because this past week my daughter was seen by a psychiatrist because her PANDAS presented with hallucinations and frankly I am covering all bases. She said that she believed my daughter may be autistic. I can see why she may think that right now because currently my daughter is unable to keep eye contact with anyone. She flaps her arms funny. She is really spacey. She has what I believe to be hallucinations and the psychiatrist believes to be some kind of extreme-far-out imaginative play that some autistic children have. Honestly, she does seem autistic. However, she had been seen by a developmental pediatrician over the past few years and I would think they would have caught it if she had autism. Also, I didn't think autism was sudden onset... I am hoping to get confirmation of the PANDAS diagnosis with the testing that Dr. B. is having me get for my daughter.

 

I thought you might find the possible autism diagnosis interesting taking into consideration your journey to get help for your kids!

[AmberM]

I'm just starting on our PANDAS journey with my 2 1/2 yr old dd, also dx'ed with autism. I was wondering if you could give me a link or info to get a hold of a Cunningham test? Do I need a dr. referral to get one, or do you just pay the $400 and it's yours?

 

I know you said you are going to set up an appointment with Dr. Latimer. She is a wonderful doctor...very caring, and very, very knowledgeable. I don't know if you are aware, but she is out for awhile, due to a family tragedy. But, I was told by her office manager today that she is planning to be back the beginning of August. So, if you can wait that long, I would call her office immediately to get an appointment.

 

Alternatively, you might want to consider Dr. K (in Chicago) or Dr. B. (in CT).

 

Any way you go, I would definitely recommend that you contact Dr. Cunningham in OKC, and get her test kit. It is $400, but given as a donation to the OU Foundation, so it is tax deductible. Personally, I have 2 children who are diagnosed with PANDAS...1 has classic symptoms that still took 4 years to diagnose, and another 1 1/2 to get the first treatment. The other is diagnosed with Asperger's, but I now wonder how much of his symptoms could have been controlled if we had known about PANDAS. He presents very differently than my other son, but because of Dr. K, he is now diagnosed with PANDAS, and the greatest thing has been that he responded, literally OVERNIGHT to antibiotics. Dr. K. diagnosed the first time, but Dr. L. did do the treatments, as we are also much closer to her. I have been very happy that I have been to both (as have other parents), because we have needed to use one or the other at various times.

 

Here's the clincher...if it wasn't for Dr. Cunningham's test, we would not know for sure that our older son (with the Asperger's) actually definitely had PANDAS, and trust me...his symptoms got really, really bad, until he was treated with PEX (he still needs another round of PEX or IVIG.) We repeated Dr. C's test, because the symptoms were coming back, and they looked like Bipolar. I can't recommend her test enough, because it can really help you to make a clear decision in your own mind if it is PANDAS, particularly in cases where it isn't clear.

 

Finally, if you go to Dr. Latimer, she will probably want to see the test results (she puts a tremendous amount of faith in Dr. C's work), and it also doesn't hurt to have the test results for Dr. L, Dr. B, or anyone else you choose to use for that matter.

[tpotter]

Hi,

 

My daughter is 6 and we just saw Dr. Bouboulis today for the first time. He said he is 90% sure my daughter has PANDAS. I'm replying to your post because this past week my daughter was seen by a psychiatrist because her PANDAS presented with hallucinations and frankly I am covering all bases. She said that she believed my daughter may be autistic. I can see why she may think that right now because currently my daughter is unable to keep eye contact with anyone. She flaps her arms funny. She is really spacey. She has what I believe to be hallucinations and the psychiatrist believes to be some kind of extreme-far-out imaginative play that some autistic children have. Honestly, she does seem autistic. However, she had been seen by a developmental pediatrician over the past few years and I would think they would have caught it if she had autism. Also, I didn't think autism was sudden onset... I am hoping to get confirmation of the PANDAS diagnosis with the testing that Dr. B. is having me get for my daughter.

 

I thought you might find the possible autism diagnosis interesting taking into consideration your journey to get help for your kids!

 

 

1) PANDAS can present with hallucinations (my son had them).

 

2) I treat children with Autism and Sensory Integration Disorder, and I can tell you I work with quite a few now (and some in the past who I called after finding out about my own children's diagnoses), who I suspect might have PANDAS, but it is certainly worth checking. Many Autism experts are starting to believe that there is inflammation in the brain, and that is certainly what PANDAS is about! Just like not all children with Tourettes or OCD have PANDAS, neither do all children with Autism, but that being said, I do believe that some do have PANDAS.

 

3) Dr. Cunningham's contact information is:

 

Madeleine W. Cunningham, Ph.D.

George Lynn Cross Research Professor

Microbiology and Immunology

Director, NIAID-supported Immunology Training Program

University of Oklahoma Health Sciences Center

Biomedical Sciences Center, BRC 217

975 NE 10th Street

Oklahoma City, OK 73104

Tel 405-271-3128

Fax 405-271-2217

email: madeleine-cunningham@ouhsc.edu

 

You can email her this evening, and be prepared to write up a history of your child's symptoms, onset, etc., since this is a study She usually emails back the same night (around 3 or 4 am!!!) She is an absolute doll, and wants nothing more than to help our children to stop suffering.

 

Oh, and BTW, please make sure you vote for PANDAS research on Pepsi Refresh grant (we are trying to get a $50K grant for her research.) The information is on this forum, as to how to vote for it. Get all your friends and family to vote, too.

 

I am so sorry you had to join our forum, but I am also very glad you found us. We all understand everything you are going through!

[tpotter]

Oh, also, check out the website: www.pandasnetwork.org It was created by another parent, and has a ton of information, including research. It also has a small table that shows quite a number of our families with autoimmune disorders.

[DonnaD]

Hi LisaMarie,

 

First, thanks to everyone for very valuable information!! I woke this morning to find replies that are so helpful! Forgive the monologue below, but thought it might help those of us who are dealing with confusing diagnoses:

 

Just my two cents after years of research, discussions with other mom's of children on the spectrum and talking with some doc's: When you compare the list of symptoms/soft neuro signs, psychiatric and behavioral issues in autism with PANDAS or PITAND, they are pretty much the same. Even more compelling are the number of children on the autism spectrum (which is a behavioral label only) who presented initially with sudden onset of regression. IN some cases it happens literally overnight, in other's it's not quite as dramatic, but mom's report "losing" their child in the process during or after an illness. Some "experts" deny the change, but I recently found that many in the field are now conceding to the dramatic changes after comparing old home videos of the before and after. When our kids present with behavioral/cognitive/speech language regression, after normal development, it is during illness that's usually unspecified, but often strep. IN our case, my boys development fluctuates...very similar to the descriptions I've read in this forum of "saw-tooth" pattern. I've called it "roller-coaster" or "fluctuation" in development that coincides with upper resp infections or strep infections. Interestingly, the folks at NIH (where my boys were enrolled in a study briefly) have already confirmed the neuroinflammation hypothesis, and collaborate with Dr. Swedo, but, in our case, never came out and said this could be PANDAS...they said only that Dr. Swedo was their colleague who "coined the term" but nothing further. On other hand, they wer interested in getting my boys into the Minocycline study, so their interest in our case was just for research purposes where variables have to be limited, I suppose.

 

Also, I've found that depending on who you are referred after the illness begins, you will get different diagnoses. Psychiatrists, seeing things like hallucinations, headbanging, spinning, emotional lability, hopping, refusal to eat, irritability, sensory disturbances, hyperactivity and choreoform movements would diagnose either ASD, ADHD, Sensory Integration disorder, OCD, ODD, anorexia nervosa, generalized anxiety, panic disorder, clinical depression, bipolar, psychosis. The speech language pathologist would diagnose Semantic Pragmatic speech disorder, the Neurologist would diagnose dystonia, absence seizures,petit seizures, Landau-Kleffner, etc. You get the picture. Unfortunately, most of us parents who witness these change in our kids, take them to pediatrician who refer us immediately to psychiatry, where the attempt is at symptom reduction only. So, we are unwittingly put on the psyciatric behavioral school treadmill, withot finding underlying medical diagnosis causing neuro symptoms/behaviors. My youngest has unusual eye deviations including rapid blinking, peripheral gaze, eye rolling, etc., that come and go. His neurologist said it was "behavioral." I argued this as it comes on suddenly at times, he's disturbed by it, says "eyes" in a whiney voice, sometimes talks about "purple eyes" then rubs them as though he wants it to disappear. So, that's just one example of the type of ignorance that's out there--among specialists! He's likely either having involuntary movement of eyes or seeing things he can't describe. Nonetheless, I know in my heart it's not behavioral.

 

I question everything these days...we've been through the ringer, as most of you. It's bad enough that we're dealing with daily behavioral/mood fluctuations with good days, then regressions, (mostly in the Fall/winter) but, the chronic illness is driving us nuts. We brace ourselves every August, where by the end, our entire family begins a cycle of sickness that's chronic until about June. EVerything improves in the summer with illness and "autistic/ocd" symptoms seem to improve. Speech language picks up and everyone is happy again. Most other parents of children on the spectrum report the same pattern...fall/winter regression with improvement in summer. Is this due to viral/bacterial load on the immune system prevalent in the fall/winter? Not sure, but it's something I've always wondered about.

 

After reading everyone's posts, I think I'll make sure all of us get tested. I'm not sure, though, at this point if we're all dealing with PANDAS only....my gut tells me we might be a PITANDS situation. I'll also order Dr. C's test kit. Can any of you tell me what specific tests are included?

 

My 5 year old recently got abnormal ABA (antinuclear antibody) result from rheumatologst. He ordered further labs that include the following: Anti-ena (sm/rnp), Anti-ssa/anti-ssb ab, C3 complement, c4 complement, Esr, C-reactive protein, Angotensin converting enzyme level, Anti-dna ds ab, Tsh, CBC, CMP.

 

Have any of your children been found to have elevated ABA's on previous testing? Just curious if that's significant or meaningful among PANDAS/PITANDS children?

 

Does Dr. C collaborate with other doc's like our rheumatologist or pediatrician? That would be a huge help.