Maybe PANDAS??

[Nire]

HI,

Let me begin by saying both my kids had chronic ear infection almost from birth and had tubes each around their first birthdays and it seems like infections moved from their ears to their throat.

I'm questioning if my almost 5 yr old might have PANDAS. I first came across this diagnosis when my daughter was developing really odd ticks and behavioural meltdowns (normally a pretty chill child). It seemed to correlate to her complaining of a soar throat going to the drs them looking and saying no way don't see anything and no other symptoms. They would take swab and to their shock she would be positive! We went to a neurologist who said he doesn't really think it's PANDAS. 3 years later now and we don't see ticks or behaviour change anymore but when she gets strep we actually see symptoms now (fever, soar throat etc) and she is feeling better within 24hrs.

Now my son has always been an active child who pushes boundries etc. Last November  (just after he turned 4) he suddenly began have rages saying he hates things and screaming and yelling and melting down. I am a behaviour therapist by profession and was baffled by the behaviour change. These behaviours lasted for about 3 months and I don't think we took him for any testing because he had no strep symptoms. After 3 months his behaviour improved and while still a tough kid no more outbursts for 5 months. 3 Weeks ago things changed. He was eventually kicked out of camp for behaviours (I do blame the camp for many of them as he wasn't aggressive or having outbursts just trouble listening). On a whim I took him for a strep test and to the Dr's utter shock it was positive. He was on Amoxicillan and I took him back to his ped for a follow up and still positive so was on zithromax for 5 days and took him back for another swab today if positive said she would put him on another med and then may rule him a strep carrier if still positive.

I am definitely seeing anxiety in him, he's scared what others will think of him, scared about the dr's, today mad his cousins birthday is before his, scared of the dark, stressed at decision making. But the part that scares me most is when in a rage screams "I wish I was never born, I wish I wasn't in this world anymore". He's not even 5 it breaks my heart. 

The reason I question PANDAS is due to the 3 months rage 5months nothing now start again. As a Behaviour therapist we look at all reasons for behaviour to change and I can't find much else besides this strep result....

Sorry for the long post I'm just at a loss...I don't know if our ped believes in PANDAS and she may not agree considering we already went through this with our daughter (who is doing amazing now that we are seeing the strep symptoms).

[ejh]

This does sound like PANDAS to me. My son also told me he wanted to kill himself when he was 5 years old. It was heartbreaking and it made no sense. He also had rages, was anxious, and had a number of other symptoms. He was diagnosed and treated when he was 12. He is now 14 and no longer is anxious, is catching up in math and never thinks about killing himself anymore. He is still on antibiotics because I do not want to take the risk of him getting strep again. 

[PANS-mom]

This sounds like PANDAS to me for sure. It is genetic so it makes sense that both kid have it. All 3 of my children have PANS (although my girls didn't have a sudden onset) are on Zithromax as their mycoplasma levels are high, and Zithromax works best for them over Amoxacillin. Anyway, find a pediatrician who will help...asap!!! Mama is usually right.

I Worte this blog about our journey with our son's PANS which is now treated and he is happy and back in school and doing well again. https://10-year-oldwithpanic.blogspot.com

 

Edited August 16, 2017 by PANS-mom

[qannie47]

Your 5 year old sounds very similar to my son whom was dx with Pandas at age 6.  I would find a Panda's doctor.  Some advice: Do not take him off the abx until he is symptom free of behavioral issues.  This could take several weeks.  There is a high co morbidity between Pandas and ADHD.  My son is doing well for a handful of years now.  He does have ADHD.  Recently I have decided to put him on Vayarin; an Omega 3 type supplement that is shown to help with emotional control that is typical with ADHD.  Even if your son does not have ADHD, I am thinking this could support the anger/rage issues that you are seeing.  Hope this helps.  

[bobh]

I ditto the above opinions, that PANS/PANDAS should be high on your "likely list".

Take care to find a doctor that knows and believes PANS/PANDAS.  The worst kind is the one that won't tell you straight up if he/she thinks its bunk, and pretends to play along, not having the guts to confront what he/she thinks is an overzealous/misguided parent.  If you can take it, the confrontation is better because it saves you wasting your time.  Of course, you can't tell a doctor that they are underzealous and misguided - you just have to move on and find the right one.