16 years old boy with autism or PANDAS?

[pathfinder]

My son was a very good baby who met all the age appropriate milestone and beyond. I was shattered when my son then 8 years old/2nd grader started to show strange behavior like nodding his heads, humming, and blinking his eyes along with obsession that one of his class mate was staring and watching his every move, hence bad social life as well as bad school performance. At the time he had on going sore throat and a pea size lymph nod sticking out in his neck (our family Doc said not to worry for they are common). To be fair, I have to say his inattention and impulsiveness began a year prior to that particular period but he was very bright and mastered his alphabet and numbers even before preschool and never had attention problems. Now I look back, I realized that he had constant ear problems and some sensory issues ( head banging, toe walking, I had to say the exact words he wanted me to say) as young as 2 or 3 but they went away and were forgotten until this strange behavior merged. I took him see to allergist( he had constant rashes), endocronolist(hormone?), neurologist, urologist( frequent urine), psychiatrist, and after taking MRI, I final ended up in a child psychiatrist who diagnosised my son with PDD -NOS. I could not agree with him all the way for I knew my son never had problem interacting with anybody if not too much, he was always full of life and very sensitive ( in fact, too sensitive) His feelings were always hurt because he knew what others were thinking and saying yet he could not help himself. But I still followed his direction and started my son on SSRI and concerta. I accepted my son's PDD and stopped looking for answer else where. We added abilify to control his rages that came out of nowhere when he turned 12. He slept through his 8, 9, 10th grade while he was on these meds. I don't know where I got the courage to quit his meds and put him on GFCF/ sugar free diet and started to face his OCD face to face but I did jut that 3months ago. I pulled him out of high school ( half way through 11th grade) where he was not gaining anything with bad grades that did not lead him to college path and started home schooling( still through his Christian school system) I knew he was growing up and in less than 2 years he would be 18 years old which means he may not listen to me anymore. We are seeing a doctor specializing in PANDAS in a week . I don't know what tomorrow will bring but I know at least what is wrong with my son and this brings me much comport in a way that I feel peace with myself ( as well as guilt that I did not do something earlier)

I thank you for reading this and would appreciate your input if you agree with me or not for thinking he is PANDAS and not PDD

 

We (my hus, older son, I) have say exact words he wants to hear from us - he follows and bothers us until we do

We cannot touch or do it certain way with his things otherwise he gets very angry. He asks same question again and again. He gets flash back (intrusive thoughts) from something that happened months ago and become violently angry. He can not let go if something bothers him and keep saying " say sorry". He has very loud voice. He has ticks on and off. his symptoms become more severe when he urinate more often. He does not keep his thoughts to himself ( we don't want to hear but he have to say what is on his mind- mostly bad things he wants to do to if somebody did him wrong) I live in constant fear that he would do something to hurt somebody someday even though he never actually hurt or did any of those. he has frequent headaches. He is drawn to dark movies, dark songs, and dark games.

Thank you again

[thereishope]

Welcome. I can't say if I think your child has PANDAS or not, but all I can do is relay my own experience.

 

My son was 5 when PANDAS hit. For him it was sudden onset on his 5th birthday. Within the year folowing, we had 3 strep triggered exacerbations which also led us to a Asperger's screening. Luckily, my son continued to heal while waiting for the appt and by the time the appt came the psych cofidently said he did not have Asperger's. If you read the thread on social problems, you can see the list of social problems my son had. But that was just social, so many more occured within the home.

 

If this disorder were to surface when a child is 2 years old, I would think it may be hard to see if the symptoms aren't over the top. With each subsequent excaerbation, esp if they are close together, the symptoms that surface can be more intense, take harder to recvoer from. With each exacerbation, the symptoms can vary.

 

Look at the "situation" now, start with the basics, take him for a strep test. Start with the rapid, if that comes back negative,make sur ethey send it out for a culture, If that comes bcak negative have blood tests run. Also, have all family members tested.

 

I'm not really sure about the Abilify or concerta. I think we need to start a thread about Abilify. I'm, just going to outright ask...is it becoming the norm for Asperger kids and kids with PDD to go on Abilify? Do you thik the meds are helping and how often has the dosage been upped? I am not saying to stop any of those meds right now, but I have to ask since if you enterain the idea of PANDAS, PANDAS kids may not react well to SSRI's.

 

Here are some great link to print out and read. Maybe it will answer some questions or lead you to new ones.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Buster's flowchart for trying to determine diagnosis

http://www.latitudes.org/forums/index.php?...ic=6688&hl=

[MomWithOCDSon]

Hi!

 

So sorry to hear about your son's struggles as well as your own.

 

Vickie's given you all the great responses thus far. I just wanted to add that our son is on the older end of the spectrum (13) too and, no, I don't believe you're too late. It's terrific that you're seening an experienced PANDAS doc and can get some solid advice as to the correct physical/medical treatments for your son in light of his history and age. I'm sure once that treatment kicks in, you will see some relief from some of the issues he currently suffers with.

 

I will, say, though, that, in our experience at least, dealing with the PANDAS medical stuff is only part of the work to be done. Don't know if it's because, at their older ages, our son's have suffered some actual "damage" by virtue of the infectious agent having been allowed free reign too long, or if it is because they've formed behavioral coping techniques or habits during their formative years that are hard to break free of, even once the brain is given healing assistance by the PANDAS treatment.

 

So don't get discouraged, hang in there and consider going after this thing with all sorts of artillery: antibiotics and/or IVIG, exposure response prevention (ERP) therapy, cognitive behavior therapy (CBT), therapies specific to autism-spectrum disorders, etc.

 

All the best to you and your family!

[pathfinder]

Thank you so much for your advises. Internet could be truly wonderful thing.

 

My son went through 5 or 6 SSRI because they were not working or causing other symptoms in the beginning of the treatment.

He would do really well sometimes without meds so I began to explore possibility of bipolar with the doctor only to realize he did not have core symptoms of bipolar. I wanted to know why did his ocd tendency comes and goes?

Then out of nowhere, he went back to have ocd signs. Since other SSRI did not seem to work itself, his doctor added abilify with zoloft ( one of the ssri that can combine with abilify). While he was on those meds for more than 3 years, his ocd was somewhat under control but he became very restless and hyper when he was not otherwise knock out with abilify. ( even with concerta)

 

I stopped his meds completely 3 and 1/2 months ago and put him on supplements. He really seemed to do better ( more focused, reasonable)for last 3 months until he started to complain about headaches and something being stuck on his esophagus. Then about a week ago, his intrusive flash backs and rages came back in full force.

We might have to go back to some kind of medication but for now, it is good to know there are something to be done to ease his pain in deeper way than just temporal measurement.

 

Thank you again for sharing this pain with me

[thereishope]

Have you taken him for a strep test since the rages and such came back? Start there.

[dcmom]

Pathfinder-

 

Sorry you have to be here. My best advice to you is, if you really think pandas is a possibility, get to an experienced doctor asap. Can you get him to DC, New Jersey or Chicago? It really is not worth wasting time with a doc not familiar with treating pandas.....