Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Recommended Posts

Its been four years.  Our DS had PANS/Bart and not sure what else.  At 10 he fell apart and after 3 years of blended treatments and many diff specialists (plus No school) his immune system is stronger and most all past Extreme PANS symptoms are gone BUT we have a belligerent, arrogant unlikeable teen who is consumed with only himself 100% of the time.  He is an clean eater and in very good physical shape now  We are beyond blessed bc healthy lifestyle helped turn him around for sure. (no dairy, GF no soy)  We r  unable instill responsibilities bc his horrific focus/ memory is way of the charts and executive skills are like a 3rd grader. His home routine is that of a toddler.  He use to be neat as a young boy.  Gentle reminders like sticky notes, alarms... any attempt at getting him to just hang a wet towel  is ignored.  He is not JUST messy he tears the house apart each day by just getting ready each morning. We are so happy he is out of bed and getting himself ready now that we are ashamed of ourselves that we are even concerned about anything else.  He looses everything IE....phones, shoes, clothes and money.  I work part time and the rest of my time is helping him function.  We live on the beach and he spends all day morning and evening in water and in the sun. He is always burned to a crisp bc refuses sun screen. Loses surfboards fishing poles etc..he has a counselor but sees no need to work w him or apply any techniques to help himself function better.  He will enter HS for a very short day this Fall bc he is so behind.  He was a Star student. Its heart breaking to watch the" post war" destruction and collapse of such a great kid.  Yes.... he is a teen but I am a teacher and have other children and this is extreme teen behavior.  No drugs or drinking as of yet and we are beyond thankful. He is however unteachable and simply goes from one drama to the next.  His arrogance and false bravado scares most kids away. We feel hopeless ! :( Started Intuniv low dose and he is also on nutritional lithium for moods and low low dose Zoloft 8mg.  He is neuro sensitive and we see the effects of most meds pretty quickly but Doc keeps it all low bc he can have negative neuro psych reactions to so many things. I might up the Intuniv to 2mg soon bc no negative reactions but no change in focus either.  ADD off the charts and OCD and now throw some ODD in there.  Sad and scared for his future.

Share this post


Link to post
Share on other sites

We have not had this experience with our PANS child, so can't really give advice from that point of view.

Just a wild thought - have you considered lowering doses, rather than upping?  I know that Zoloft dose you mention (8mg) is very low, but we were actually lower, and the first time we used it (at 2.5mg, in suspension), it had dramatic effect.  If he is sensitive as you say, going in the lower direction might have a positive effect?  Whatever the change,  slow and one at a time is what I would want to try.

Share this post


Link to post
Share on other sites

Hope --

We didn't experience this particular manifestation of the PANDAS "aftershock" either, but I can see how it might happen this way.  I'm betting, like me, you attribute much of his braggadocio and narcissism to some deep-seated insecurities he's dealing with, likely at least in part to his health battle and him having a pretty good idea of how far behind he's fallen both academically and socially as a result.

We, too, battled with how best to handle the emergence of a healthy teenager for whom truly age-appropriate behavior had been outside reach for a number of years.  But I don't think you should be, in any way, ashamed of yourselves for wanting even more for him and for yourselves; the job isn't fully done until he's ready to face the world and be a part of it, rather than proactively separating himself via boorish behavior so that he can stay "separate," "different" and not be expected to deal with real world consequences and expectations.  To me, it almost sounds like a form of OCD.  In my experience, for most kids in a similar situation (including ours), this coping mechanism took the form of avoidance, as in more quietly and meekly avoiding anything or any situation that was uncomfortable.  Perhaps your DS is practicing a more active, belligerent form of that, pushing everyone and everything away before it can ask anything of him?

In addition to monitoring and perhaps considering some changes in his medication, I would consider some therapy -- perhaps aggressive therapy.  You didn't mention this among your current protocols, so perhaps you've tried it but felt it wasn't impactful, or perhaps he puts up a stink about participating.  But I really think a good therapist could help substantively in this situation, helping you empower your DS while at the same time holding him accountable for the best behavior he's capable of.  In particular, I'm thinking of ACT therapy (Acceptance and Commitment Therapy) which, in my experience, can be very effective with bright, even manipulative, adolescents.

Also, if you haven't already, you might take a look at "The Explosive Child" by Ross Greene.  I realize your DS isn't classically "explosive," but it does sound as though a good bit of his behavior might be his way of trying to control situations in which he still feels somewhat out of control.  And that, even though he's a teenager, his behavior isn't entirely age-appropriate, either.  There are some problem-solving techniques in that book that we found very helpful in terms of our family dynamics and dealing with our DS as he was coming out of the worst of his PANDAS and wanting more independence and authority over his life. 

All the best!

Share this post


Link to post
Share on other sites

My son has similar behavioral issues. We tried different things, including the Ross Greene method. But, because of his age regression due to the PANS/PANDAS, "normal" techniques didn't work.

We ended up doing an intensive CBT program a couple of years ago and now do weekly CBT therapy. He's improved alot. It's still ongoing.

Share this post


Link to post
Share on other sites

I have found my 12 yr old daughter's executive functioning became worse on Prozac. She is currently only on 5 mg to help with OCD, anxiety, and restrictive eating (which have all been greatly helped by the Prozac). 

My doctor believes ADHD traits (poor executive functioning, impulsivity, mood changes) are a result of brain inflammation. Consider some vitamins/herbals to help with the remaining neuro-inflammation. We just started a new treatment- Synapsin. You need a prescription for it and have to order through a compounding pharmacy. After just one week, I've noticed marked improvement in her mood swings and alertness. It may be worth a try.

 

Share this post


Link to post
Share on other sites

I wish I had words of encouragement. What you described is exactly my husband. For 20 years since I met him, he exhibited odd behavior, zero executive function, cognitive deficits and arrogance and ODD through the roof. After I nearly had a nervous breakdown five years ago, he had some psych testing: extreme ADHD and NPD.  However, with his 4 PANDAS kids ( 2 from a previous marriage), I had him tested for Lyme. Lit up like a xmas tree. Also PANDAS.

His whole life is one drama to the next, yet he sees it all as something being done to HIM, while anyone he comes into contact with suffers. 

He is being treated for everything, but unfortunately with treatment for Lyme, Pandas, etc., those symtpoms have gotten better, and he regularly goes to therapy, but the NPD (arrogance, self focus, lack of empathy, etc.) Is increasing in leaps and bounds.

Edited by gpookie

Share this post


Link to post
Share on other sites

so sorry to hear about your son, my 15 daughter has similar symptoms that started in 8th grade - great student, then summer of 8th grade hearing sensitivities, cognitive decline, and regression.  We chased anxiety, Lyme, other co-infections, it turned out to be AE (autoimmune encephalitis) so inflammation was causing her symptoms.   We believe if was brought on by strep , we had IVIG, steroids - she improved enough to attend half days for two months of 8th grade.  We then had her tonsils removed and had 1 round of Rituxan.  Her memory has improved but still has not fully recovered, she should be in 10th grade but will have to redo 9th and probably part of 10th.   She does therapy twice a week - which helps with her OCD, anxiety.  We tried SSRI and it didn't really work well for her.  CBD's help her with anxiety.   Like you we worry if this will be long term, but what I've heard and believe it just takes time for the brain to heal after the inflammation.   Not sure if this is true in your son's case but either way  Wish you son a full recovery to good health - hang in there

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  



×