PANDAS

[Indigo]

My daughter has been diagnosed this week with PANDAS.

 

I am wondering for those of you who have been dealing with this how treatment progressed for you and what sort of changes you saw in your child as treatment went on.

 

We started on Clarithromycin and I immediately saw a huge reduction in separation anxiety. Dd seems happier, but also she is feeling more emotional, cries more...but no rages!! I'm thrilled with the progress but am waiting on eggshells for something to fall apart again. We've been on this journey for years before we got a PANDAS dx...she's been dx with Asperger's when she was younger, ADHD, then changed to bipolar this past spring (which incidentally is when I got a strep infection and dd went completely wild)...now I can see that PANDAS has a similar wax-and-wane pattern.

 

Thanks for any help and advice on this subject which is very new to us!!

[Pudgeo]

Hello,

I wish I had the miracle cure for PANDAS!!

My son has had 3 IVIG and no improvement...we may be able to get HMO Kaiser to do one more IVIG.

He had a fever in JAN 07 and has never beent he same...after a year of mis-diagnosis I finally realized it was PANDAS. He definitely waxed & waned and his symptoms the last 6 months have been worse than ever.He is a completely different kid than before the fever. It's heartbreaking to us. He is full of anxiety/OCD and spacey.

 

Right now I am very lucky because I started to see a DAN Dr who is willing to try whatever it takes to get my kid back!

SO we are trying a month trial of azithromycin and just started spirolactone today. ALso I started him on abilify because the OCD will drive his teacher crazy at school. I'll let you know if I see any improvement...

Today he actually sat an played a little bit(something he forgot how to do since the FEVER)

 

I also did alot of anti-inflammatory supplements but now he is fighting me on taking them so I had to pare down to just what is necessary...omega-3 is a big one.

If you read alot of the old posts here on PANDAS alot of Moms had luck with azithromycin..THe biggest thing I have learned is there is no one treatment that works for everyone with this...

be in touch...Sarah

[Worried_Dad]

Hi, y'all:

 

Pudgeo, our 12-year-old son got sick at almost the exact same time as yours - in March of 07 after a high fever. He was originally diagnosed with acute rheumatic fever with Sydenham's chorea, and we were told that his brain would heal on its own eventually. We'd see steady (up and down) improvement for months, then suddenly the symptoms would resurge for no apparent reason. He missed the whole last school year and did homebound schooling, but even that didn't work very well.

 

As you said with your son, our son is a completely different person now. A week ago, he went to bed doing quite well and woke up the next morning in a total emotional meltdown with OCD symptoms far worse than ever before. We're heartbroken as well, and searching for any way to help him. Found this forum and have been reading posts voraciously to learn about others' experiences.

 

Based on the posts here, we convinced our primary doc to write a prescription for 4 weeks of zithromax, which we started a few days ago. We're praying that this will help (no improvement yet). Also thanks to info on this forum, we set up a phone consult with Dr. K from Chicago for this coming Wednesday. Nobody in our area really seems to know much about PANDAS... and, of course, a number of docs dismiss it outright as "bunk." (MAN, that infuriates us!!!)

 

I'll post to share our experience as we get further into the zithro course and after we talk with Dr. K. I've already found more useful info on this forum than from all of the docs we've seen so far, so thanks to everybody who's shared here!

 

Indigo, we share your family's pain and hope you find the right treatment to help your daughter. Hang in there, and best of luck!

[CSP]

Worried dad,

 

I just wanted to ask how your son is doing with attitude at 12yo? Our son is really testing the waters for us now at 14 almost 15yo.

 

CP

[Worried_Dad]

Hi, CP:

 

This latest flare-up is terrifying me. He was very emotionally unstable and oppositional a year+ ago when he first go sick, but that had improved dramatically until the past week's flare-up. Right now, he knows that his brain is betraying him - he recognizes that his thoughts are totally irrational - and it's completely demoralizing him. I don't think he believes he'll ever get better, and in the past few days (for the first time ever) he's said on a number of occasions that he "can't live like this" and "wants to die." My wife and I are really scared - took to hiding some of the meds just as a precaution.

 

He hasn't really copped too much teenage attitude yet, but he argues with us often and "no" or "I can't" are common phrases from him. We're more concerned about the depression.

 

I could be completely off base, but it seems to me that kids who are stricken with this when they're older face a tougher time because they understand that something is very, very wrong with their brains. Our son's brain was always a source of strength for him (did well in school... wants to be a physicist!) and now it's completely turned on him, and he knows it. I feel utterly helpless: other than trying to stay positive and reassure him that we'll find a way to get him better, I can't do anything to reduce his misery!

 

Hope you have better luck soon. Take care!

[CSP]

WD,

 

I understand, I often wonder what my son is thinking when he holds his head. He is not one to talk about his feelings, and that scares me too.

 

Have you tried tryptophan or 5-htp?

 

I'll keep you all in my prayers,

CP

[Indigo]

Our doctor also told us to put our daughter on oregano supplements and then we'll add in bitter orange if necessary. Not sure if any of you have tried those, but they might be worth a try.

[EAMom]

Hi Worried Dad,

 

My 8 year old daughter was also extremely depressed and made *many* suicidal statements during her PANDAS episode (duration 5-6mo.). That is one symptom that that does not get written about much but I think it is common, esp. in severe cases. Her teacher saw such a change in dd's behavior that she was sure dd had been abused or molested...she wouldn't play, she barely ate or slept, she was completely withdrawn, a very different child from her "real" non-PANDAS self.

 

I don't know if it better or worse for a child to be older and be more "aware" that this disease is causing the problem. My dd didn't seem to have a lot of awareness of her dz at the time and it was still *really* awful...she is starting to develop an awareness that now that she is normal again.

 

I'm really keeping my fingers crossed that antibiotics help your son.

 

I don't know if the younger kids (7-8) "bounce back" faster than the older kids (11-12)? In anycase, it takes a while for the inflamation to go down and for their brains to heal.

 

Also, I may have already told you, but we did find Advil to help with the Azithromycin. Would you be up for adding Advil onto your son's antibiotics for a few days and report back whether it was helpful or not? No pressure, just a thought. My husband and I think it decreases some of the brain/basal ganglia inflamation.

 

EAMom

[Indigo]

Also, I may have already told you, but we did find Advil to help with the Azithromycin. Would you be up for adding Advil onto your son's antibiotics for a few days and report back whether it was helpful or not? No pressure, just a thought. My husband and I think it decreases some of the brain/basal ganglia inflamation.

 

That is interesting, I haven't heard of that before. Thanks!

[Dedee]

Hey everyone...

 

I just wanted to add my input on the issue of our kids who get so emotional that they discuss wishing they were dead. I know how extremely upsetting this can be. In fact, it will completely knock you out of your shoes the first time you hear those words. My son was at his worst when he was around nine yrs old and we had him seeing a therapist to try to help with the every day anxieties and OCD issues. This was his worst year in school also. He would cry every night when we tried to help with homework. It was a nightmare. At that time he told his therapist that he sometimes wished he was dead. I swear when I heard that I nearly came unglued. I cried horribly in his office. However, as he explained to me, it is very different to wish you were dead than to have suicidal thoughts or tendencies. The key is to make sure they have not actually thought about how they would carry that out or tried to make a plan. The whole thing was so horrific I could hardly comprehend for a while. But of course with everything else in PANDAS we pull ourselves up and do what is best for our child. The great news is that my son did move through this phase and now at age 13 seems so happy that I can't even imagine he is that same child. We had several very difficult years, but now with the right treatment plan my child is finally happy and thriving. It just takes time to find what is right for each individual situation. Hang in there and be strong. You are all great parents and it will pay off in the end. Prayers..

 

Dedee

[EAMom]

Hi Indigo,

 

let me know if the Advil helps, it's worth a try.

 

Do you think your daughter has Asperger's in addition to PANDAS or was it just PANDAS all along getting mis-diagnosed as aspergers?

[Betty04]

You may find this book very helpful... it is not primarily about tics but it does link together the diagnoses you have been givenand mentions PANDAS. I find it very helpful to read regarding my son...

 

Healing the New Childhood Epidemics Autism, ADHD, Asthma and Allergies

 

http://www.amazon.com/Healing-New-Childhoo...g/dp/0345494504

 

Take care, Betty

[guy123]

Wait, am I reading this right?

 

If someone has PANDAS, even if they've had it for a while, it can still be treated with antibiotics?

[Indigo]

You may find this book very helpful... it is not primarily about tics but it does link together the diagnoses you have been givenand mentions PANDAS. I find it very helpful to read regarding my son...

 

Healing the New Childhood Epidemics Autism, ADHD, Asthma and Allergies

 

Yes, this is how I found the PANDAS in the first place....my dd sounded so much like Alisa that I called my doctor right away to request a blood test. My doctor had recommended the book at her first appt with him so that we could be on the same page. I emailed a huge thank you to Dr. Bock...I am so grateful to him for his work. My daughter is doing incredibly well.

 

EAmom...at this point, I think the PANDAS was diagnosed as Asperger's when she was four...just like Alisa in that book...then as they got older the dx went to bipolar. I even heard "possible schizophrenia" at the point that I got strep in May and my daughter was completely wild. I will never forget the wild look in her eyes that scared me so much.

[P_Mom]

you can give the antibiotics a shot, but, unfortunately, the longer you have been dealing with PANDAS, the less effective antibiotics become.