PANS/PANDAS Diagnosis

[worriedj]

I need advice!  My 12 year old son was  diagnosed with OCD w/sensory issues when he was 4.  We have tried medications, cognitive and behavioral therapy, hospitalizations, and more.  NOTHING WORKS!  He is miserable, has few friends (due to social skills), and is very easily stressed.  I was reading about PANS and thought that he met the profile. As a baby and toddler, he has many ear and throat infections.  When his adenoids were removed, the Dr.  stated that he had never seen such swollen ones even in an adult.  They were so large the Dr. was concerned that it might tumorous.  ( it was not)  Where do I start to see if the cause of his OCD issues are from these former infections? 

[Dr. Michael Jenike]

it would not likely be possible to determine is pans was the cause of his OCD after such a long time.  however, if his symptoms drastically worsen after an infection now, you might talk to the doc about trying antibiotics and see if that helps his symptoms.  it sounds like he might have Aspergers; check that out.  

[amandatabor]

Good Evening, I am a worried mom and I have been reading and reading about PANDAS. But… I still have some ?'s and I am not sure if you would be able to help me. This has been the toughest week of our families lives but I do feel we have moved quickly but still have ?'s that I would love some answers too.
My ?'s –> 
1. taking 10 day antibiotics (amoxicillin) when is the normal time to see improvement if any
2. How often do children have remissions (I see they can get it back each time when exposed to strep but any idea on a % for relapses)
3. should I be pushing for a longer period of antibiotics if at day 10 she does not show improvement? 
4. Are siblings likely to have this too (i have a 10 month old concerned about the future)

If you have time to read here is our story. We live in Tampa FL and I called yesterday to try to get in with Dr. T at USF asap but they said it may not be till October .My daughter will turn 3 in July and in the middle of her dance class last week had a sudden attack she started rubbing her eyes looking in the mirror as something was wrong… then started twitching her head over and over. As I just finished school a couple years ago for LMHC (but not practicing currently) I immediately knew something was wrong. (She had met and exceeded every milestone and never once given us a behavioral problem we have felt so lucky). The responses tend to come at different times but mainly during TV and high times of concentration. We took her to the Zoo Thursday but she could not walk straight without us holding her hand. Within 48 hours of seeing the twitch I took her to the Dr.'s showed them the video; the pediatrician started her on antibiotics right away saying that this could be related to strep (great pediatrician). The in-office strep test was negative and we did not realize they sent out a culture. I noticed her lymph nodes behind her ear were inflamed and new it had to be an infection but I had to prove it. Within the last week our poor daughter has seen 6 drs. including of 3 Pediatricians, 2 Neurologists and an Optometrist. We have had blood work, an eeg and an MRI.  We kept being told by the Neurologist that we needed to relax that this is a tic to take her off the antibiotics and they could medicate her for the tics if need be (we opposed and kept her on them). Finally, 2 days later her blood work came in and said there was an infection… again they said they didn't think it was related but could not tell me what the infection was. We did not listen again and went right to her pediatrician. He opened her chart and saw her results were in from the lab… positive for Strep. He said he is 50/50 on the diagnosis but he had not seen this but a handful of times in his practice. I explained that I had strep 5 months ago and she was sick the same time but we went to a walk in and they only tested me for strep and gave us both antibiotics. I told him I have had strep 6 times since she was born he decided to retest both of us. We are now waiting on those results and hopefully will have results on Tuesday.  She is on day 7 of the antibiotics and we are still seeing the tics. I am worried that at day 10 if they are still there and they won’t prescribe her more that it may get worse. I am scared to death and want to make sure I am doing everything I need to do to make sure we get her the correct treatment. Any guidance would be greatly appreciated!

[Dr. Michael Jenike]

the answer to your questions varies a lot from person to person.  if you are in Tampa, you are close to two of the best pandas/pans people in the world.  contact Dr. Tanya Murphy who works with Dr. Eric Storch in Tampa.  they have a clinic and will surely be able to help your child.  let me know if you have any trouble reaching them.  all best wishes,

Michael Jenike, MD

[NC]

My 4 year old daughter was diagnosed with PANS by 2 psychologists. The local neurologists in Chicago, are aware of PANDAS but not of PANS and have been fairly dismissive as her strep screens were negative.

She was seen by several psychiatrists who told us this was medical but put her on risperdal for symptoms.

 

She had acute onset visual and auditory hallucinations in August 2013 with mental cloudiness, loss of bladder and bowel control, loss of speech with inability to start or continue sentences, repetition of heard words or phrases, deteriorating fine motor skills and severe separation anxiety. From the beginning she asked for medicine and said she was sick and would be scared when she could not talk.

 

We did manage to get her treated with IVIG and steroids several weeks later- after testing only showed mycoplasma IGG in her spinal fluid, and low complement levels and some slowing on EEGs.

She is now off risperdal and steroids.

 

Since then her speech has returned, but she still has some hallucinations which may actually be more fear related at this time.

 

We cannot find any local specialists and are concerned regarding possible relapses and general care.

 

We do not know if we should expect relapses with illness, best course of treatment, or by what age chances of recurrence declines.

 

We would appreciate any input.

[Dr. Michael Jenike]

go to http://www.ocfoundation.org/

 

http://www.latitudes.org/forums/index.php?showtopic=5023

 

http://pandasfoundation.org/pandasfoundation/Home.html

 

http://intramural.nimh.nih.gov/pdn/web.htm

 

some of these have a list of pandas experts around the country.  hope this is helpful.  all best wishes,

 

Michael Jenike, MD

[avril]

I am just learning about PANDAS.  I have a 23 year old son who displays many of the symptoms.  He had strep throat at about sixteen months, and almost overnight, he became severely hyperactive.  He was an early talker, and spoke full sentences before he could walk.  He has many OCD issues.  He cannot touch certain things.  He paces, particularly when stressed.  He will only shower at my home, even though he has his own apartment.  He is obsessive about body cleanliness.  If anything touches his clothes he has to change, sometimes shower again.  He uses body spray six or eight times a day.  He was diagnosed with ADHD at the age of six.  He was diagnosed with ODD at the age of twelve.  He rarely sleeps, and when he does, he doesn't sleep well.  He says that he hates sleep.  He must be constantly busy.  He has serious social anxiety in professional situations, and cannot speak on the telephone in a professional capacity.  He refuses to see doctors or get any type of medical treatment.  He does not trust doctors.  He will not speak about his mental health issues including his rages and his depression to anyone but myself.  He complains of body aches daily, specifically his back and his hips.

 

He is the eldest of five children.  None of my other children have the same issues that he does.  Nobody in the house is allowed to do dishes or wash his clothes except me.  If he suspects there is a speck of anything on a dish, he cannot touch the dish.  All cups have to be sniffed before they are used.  All laundry is sniffed before wearing.  I am not even sure if he uses the bathroom anywhere but at my house.  He sleeps at his apartment, but spends all day at my house.  In the evenings he will go to a friend's house (just one),  but returns to my house every couple of hours.  

 

I would love to get some input on his condition.  I have been looking for answers for years.  His condition seems to be getting worse all of the time.  I have no support because he refuses medical help and I am a single mother. 

[Dr. Michael Jenike]

It sounds like he has very bad OCD regardless of the cause.  he needs treatment for the OCD by experienced clinicians.  you can go to http://www.iocdf.org and get tons of information on OCD as well as PANDAS.  if he refuses to get treatment, you may have to see an OCD expert without him and try to come up with a plan to get him to treatment.  all best wishes,

Michael Jenike, MD

[Author]

Posts