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All New To This - 5 year old, could this be PANDAS?!


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9 replies to this topic

#1 Ataloss12

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Posted 23 April 2012 - 08:12 AM

Hello Everyone.

I hope that I have posted this accurately, as I am new to this forum. I am at a loss and need some advice/direction. Around 4-5 weeks ago, our 5 year old daughter literally went to bed "normal" and woke up with "OCD like symptoms". This started as an emotional meltdown, saying that she thought she had drank bleach. My first reaction was panic and I questioned her, but she couldn't remember when or how she drank it. I was immediately on the phone with the on call pediatrician and we came to the conclusion that it wasn't possible for her to have drank bleach, or there would have been obvious evidence. Over the next day or two, she started crying and asking odd questions, such as "What would happen if I stuck a worm in my nose", she watched a cartoon where the character threw a ball at another cartoon character and broke down crying, asking "what would happen if I threw a ball at someone". She was going to the bathroom every 5 minutes, so we had assumed she had an infection going on and took her to the ER. They did a urinalysis and sent us home, saying that they couldn't find anything. We then took her to the pediatrician and they did an in office strep test and sent us for bloodwork (ASO Titer was done as well as toxicology to ensure there was no bleach drinking). We took her back 2 days later for a follow up and her regular pediatrician stated that all of her bloodwork came back "normal" and he could refer us to a psychiatrist if warranted, but he thought that "she was going through a developmental stage and was questioning things around her to see where they fit in her life". Her behavior progressed with constant "confessing" to things that she had thought she might have done, saying that she was having bad thoughts and didn't want to think those things. At one point, she told me that she "thought she hated me, but really didn't and didn't know why that thought popped into her head". We don't want to take her to a psychiatrist unless that is our last resort. We reassured her repeatly and have been very caring and informing her that all of these thoughts are normal (we don't want her to think that there is something wrong with her), we have been welcoming the "confessions and bad thoughts" and explain to her that these are clouds and for her to allow them to come into her head and let them float out. With this process, her crying spells have long gone, but she is occassionally coming to us for "confessions". I put on a smile when she is awake, but break down when she is asleep. I don't want my child to have to deal with all of this. I don't know what to do and not sure where to turn without having to take her to a psychiatrist and have her FEEL as if something is wrong with her. My question is - CAN THIS BE PANDAS, EVEN THOUGH ASO, STREP CAME BACK NEGATIVE? If anyone could please point me in the right direction, I would greatly appreciate it. Thank you and God Bless!!


#2 dcmom

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Posted 23 April 2012 - 12:45 PM

hello- I have two pandas daughters, one who had initial onset at age 5.5.

First, did your doctor do a throat culture for strep (vs a rapid strep test). For a throat culture, they would not be able to give you the answer that day. It is imperative that a culture is done, not just a rapid. If it were me, I would wait 24 hours and have another throat culture done (if you don't want to go to the doc, maybe a cvs minute clinic or urgent care). If this is pandas, and is caused by strep- it is REALLY helpful to get that positive culture. It is possible to get a false negative (not highly likely, but given the stakes, I would re test).

Secondly, for a 5 yr old to go to be normal, and wake up riddled with ocd screams some type of infectious cause vs "normal"ocd. PANDAS is triggered by strep, but more research is being done into PANS (a new label that points to many different triggers). OCD and urinary frequency are HUGE red flags for PANDAS/PANS.

Most importantly I would GET TO A PANDAS SPECIALIST ASAP. Tell us what part of the country you live... we can make suggestions.

In the meantime, if you could get antibiotics (zithromax or augmentin) and/or dose regularly with advil for 5-7 days.... I would start there. (I have heard of someone having luck with oil of oregano- I am not typically into "naturals" over Rx, but if I couldn't get antibiotics I would be doing the ooo.)

I would also suggest finding a therapist EXPERIENCED in ERP (exposure and response prevention) for ocd.

good luck- use the parents here, as they are an amazing resource and support.

#3 mom24

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Posted 24 April 2012 - 09:37 AM

Hello Everyone.

I hope that I have posted this accurately, as I am new to this forum. I am at a loss and need some advice/direction. Around 4-5 weeks ago, our 5 year old daughter literally went to bed "normal" and woke up with "OCD like symptoms". This started as an emotional meltdown, saying that she thought she had drank bleach. My first reaction was panic and I questioned her, but she couldn't remember when or how she drank it. I was immediately on the phone with the on call pediatrician and we came to the conclusion that it wasn't possible for her to have drank bleach, or there would have been obvious evidence. Over the next day or two, she started crying and asking odd questions, such as "What would happen if I stuck a worm in my nose", she watched a cartoon where the character threw a ball at another cartoon character and broke down crying, asking "what would happen if I threw a ball at someone". She was going to the bathroom every 5 minutes, so we had assumed she had an infection going on and took her to the ER. They did a urinalysis and sent us home, saying that they couldn't find anything. We then took her to the pediatrician and they did an in office strep test and sent us for bloodwork (ASO Titer was done as well as toxicology to ensure there was no bleach drinking). We took her back 2 days later for a follow up and her regular pediatrician stated that all of her bloodwork came back "normal" and he could refer us to a psychiatrist if warranted, but he thought that "she was going through a developmental stage and was questioning things around her to see where they fit in her life". Her behavior progressed with constant "confessing" to things that she had thought she might have done, saying that she was having bad thoughts and didn't want to think those things. At one point, she told me that she "thought she hated me, but really didn't and didn't know why that thought popped into her head". We don't want to take her to a psychiatrist unless that is our last resort. We reassured her repeatly and have been very caring and informing her that all of these thoughts are normal (we don't want her to think that there is something wrong with her), we have been welcoming the "confessions and bad thoughts" and explain to her that these are clouds and for her to allow them to come into her head and let them float out. With this process, her crying spells have long gone, but she is occassionally coming to us for "confessions". I put on a smile when she is awake, but break down when she is asleep. I don't want my child to have to deal with all of this. I don't know what to do and not sure where to turn without having to take her to a psychiatrist and have her FEEL as if something is wrong with her. My question is - CAN THIS BE PANDAS, EVEN THOUGH ASO, STREP CAME BACK NEGATIVE? If anyone could please point me in the right direction, I would greatly appreciate it. Thank you and God Bless!!

Welcome to the forum! This is a great place to vent and ask a lot of questions! I have 2 boys with Pandas and Lyme and one with a confection....
DC Mom gave you some good advice. The only thing that I would add is to get a blood test for Myco Plasma. It can bring on OCD and has been a very active infection this year due to the odd weather. We have experienced a number of the symptoms that you have mentioned. My boys are very Myco sensitive and even my former non-believer pediatrician said that Myco Plasma can bring out OCD in someone who might be prone to it. There are a number of good Pandas Drs. I would definitely find one for your daughter. Good luck!

Good Luck! My thoughts are with you and your daughter :-)

#4 Wombat140

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Posted 25 April 2012 - 03:30 AM

I would also suggest finding a therapist EXPERIENCED in ERP (exposure and response prevention) for ocd.

Just to add to that; preferably CBT (cognitive behaviour therapy), which includes ERP and also some more "talking" type strategies (like the clouds thing). It has a better success rate than ERP alone. Some qualified CBT therapists will in fact be psychiatrists, but they aren't all, and not all psychiatrists know anything about CBT. If possible, find a therapist who has experience working with children and also with treating OCD. In the UK you can do that using the database on the website of the professional body, the BABCP, whose members are also all well qualified in CBT; I don't know the American equivalent off-hand, but I'm sure there is one.

Sorry you and your daughter are having such a hard time, and I hope she's soon feeling better.
All the best,
Wombat140

Born 1990. Always had slight Asperger's traits but got along fine. Severe OCD struck almost overnight in 2003. Varied randomly from month to month since then, almost gone once or twice, but never completely. Very bad indeed since spring 2012 and shows no signs of improving.

Symptoms: all sorts of things (written words, smells, things people say) mysteriously "will not do" and require a compulsion to be done before I can go on. No obsessions - in that way, and in physical nature, the rituals are almost like tics except that they're always a response to something particular. Extreme sensitivity to particular sounds, although that comes and goes over months.

Wondered if it might be PANDAS - in August 2012 I finally managed to locate a doctor who knows about it. Tried Azithromycin, co-amoxiclav (Augmentin) and tinidazole, but to no clear effect. No test results as yet - fluffed three attempts to get blood sample taken.

 

Have now been seeing homoeopath since summer 2013.  Results have been mixed, there have been definite improvements at times but they haven't lasted.  No luck at all for the last few months - in fact, since this month's remedy (Aug 2014) things are noticeably worse.


#5 Ataloss12

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Posted 25 April 2012 - 09:02 AM

Thank you everyone! I am truly blessed that I found this forum!! Since my original post, I have been in contact with Dr. Trifiletti. He has been a blessing!! He ordered a series of blood panels to be done today. Hopefully that will give us some answers. Correct me if I am wrong, but if these tests come back "normal", can this still be PANDAS? I have read alot of information, but some is conflicting! We need alot of prayers right now.

#6 hugs2day

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Posted 26 April 2012 - 12:27 PM

Yes it can still be PANDAS. Pandas is a clinical diagnosis and the best test is response to treatment. If your daughter responds to azithromycin or another abx favorably then you are on the right path.

Not all kids mount titers to the normal gamet of tests. It's great when they do because drs' are more willing to treat and insurance is more willing to pay, but normal results does not rule out PAnS or Pandas.

Best wishes for your daughter's recovery.

Thank you everyone! I am truly blessed that I found this forum!! Since my original post, I have been in contact with Dr. Trifiletti. He has been a blessing!! He ordered a series of blood panels to be done today. Hopefully that will give us some answers. Correct me if I am wrong, but if these tests come back "normal", can this still be PANDAS? I have read alot of information, but some is conflicting! We need alot of prayers right now.


Two boys with PANDAS sudden onset 3 weeks apart in 10/2010- DS10 and DS8.


#7 minimaxwell

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Posted 06 May 2012 - 12:41 PM

just wanted to add my 2cents.. My daughter had no response to abx,motrin or prednisone. We DID get a very favorable response from lVlG!!

Yes it can still be PANDAS. Pandas is a clinical diagnosis and the best test is response to treatment. If your daughter responds to azithromycin or another abx favorably then you are on the right path.

Not all kids mount titers to the normal gamet of tests. It's great when they do because drs' are more willing to treat and insurance is more willing to pay, but normal results does not rule out PAnS or Pandas.

Best wishes for your daughter's recovery.


Thank you everyone! I am truly blessed that I found this forum!! Since my original post, I have been in contact with Dr. Trifiletti. He has been a blessing!! He ordered a series of blood panels to be done today. Hopefully that will give us some answers. Correct me if I am wrong, but if these tests come back "normal", can this still be PANDAS? I have read alot of information, but some is conflicting! We need alot of prayers right now.


DD18 undiagnosed PANS for 10yrs. Dx 1/12. Had 2 lVlG's 80% better!
DS 14 Happy and healthy but has Celiac.

#8 tpotter

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Posted 06 May 2012 - 03:34 PM

I would also contact the NIMH at the following website. http://clinicaltrial...how/NCT01281969 They have a study, and if you qualify, everything is paid for (diagnosis, treatment, etc., etc.) I would contact them tomorrow. They have specific criteria to qualify, and if you're interested in participating, you want to make certain you don't have your child take something that could disqualify her. Good luck, and I'm glad you found us. BTW...I would suggest that you post something on the PANDAS forum, since this is the OCD one. It doesn't cross reference.

#9 eamom

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Posted 06 May 2012 - 06:09 PM

Hello Everyone.

I hope that I have posted this accurately, as I am new to this forum. I am at a loss and need some advice/direction. Around 4-5 weeks ago, our 5 year old daughter literally went to bed "normal" and woke up with "OCD like symptoms". This started as an emotional meltdown, saying that she thought she had drank bleach. My first reaction was panic and I questioned her, but she couldn't remember when or how she drank it. I was immediately on the phone with the on call pediatrician and we came to the conclusion that it wasn't possible for her to have drank bleach, or there would have been obvious evidence. Over the next day or two, she started crying and asking odd questions, such as "What would happen if I stuck a worm in my nose", she watched a cartoon where the character threw a ball at another cartoon character and broke down crying, asking "what would happen if I threw a ball at someone". She was going to the bathroom every 5 minutes, so we had assumed she had an infection going on and took her to the ER. They did a urinalysis and sent us home, saying that they couldn't find anything. We then took her to the pediatrician and they did an in office strep test and sent us for bloodwork (ASO Titer was done as well as toxicology to ensure there was no bleach drinking). We took her back 2 days later for a follow up and her regular pediatrician stated that all of her bloodwork came back "normal" and he could refer us to a psychiatrist if warranted, but he thought that "she was going through a developmental stage and was questioning things around her to see where they fit in her life". Her behavior progressed with constant "confessing" to things that she had thought she might have done, saying that she was having bad thoughts and didn't want to think those things. At one point, she told me that she "thought she hated me, but really didn't and didn't know why that thought popped into her head". We don't want to take her to a psychiatrist unless that is our last resort. We reassured her repeatly and have been very caring and informing her that all of these thoughts are normal (we don't want her to think that there is something wrong with her), we have been welcoming the "confessions and bad thoughts" and explain to her that these are clouds and for her to allow them to come into her head and let them float out. With this process, her crying spells have long gone, but she is occassionally coming to us for "confessions". I put on a smile when she is awake, but break down when she is asleep. I don't want my child to have to deal with all of this. I don't know what to do and not sure where to turn without having to take her to a psychiatrist and have her FEEL as if something is wrong with her. My question is - CAN THIS BE PANDAS, EVEN THOUGH ASO, STREP CAME BACK NEGATIVE? If anyone could please point me in the right direction, I would greatly appreciate it. Thank you and God Bless!!



Your dd is a text book case of PANDAS! Did they do a throat culture, or just ASO titers? Repeat the titers in a few weeks to see if they are rising (assuming cultures are neg). Do a throat culture if that has not been done. Also check for a perianal rash... Strep can be in non throat locations (sinuses, perianal, skin).

I would also strongly encourage you to throat culture family members to check for carriers/strep in the household. But, the others are right in that it might not be strep, it could be mycoplasma or other infections. Also, be aware that many PANDAS kids with strep do not get a sore throat, just behaviour changes.

Where do you live?--oh never mind, I see you are seeing Dr. T. :)

I also agree with tpotter about contacting NIMH re the study.

Edited by EAMom, 06 May 2012 - 06:15 PM.


#10 Dean1065

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Posted 07 May 2012 - 03:41 AM

ataloss, I sent you a PM.




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