Could this be Pandas

[ChantalD]

Hello

I am new to this board and I hope that you all don't mind me jumping right in with my questions and concerns.. this may be long..

 

My son, currently 9 years old.. is a big old puzzle..

 

He was a very colicky infant...I had several courses of antibiotics (including a course for Strep Throat) before he was born.. shortly after birth he was placed on antibiotics again for a fever..

He was always a child who startled easily.. slept poorly and was just all around miserable..

 

As an older infant/toddler.. he would wake at night and be awake for hours.. usually talking to singing or laughing.. He never napped...

 

Around age 2.. we noticed he was very sensory sensitive.. he would startle at any loud noise not of his making.. he hated the touch of certain things.. a small bump could send him into howls of tears... and yet at other times he sought out deep sensory feedback.. crashing into walls.. hugs that could strangle you.. He had no concept of what a "gentle" touch was..

 

He was always a very active child..had little fear of things.. very daring... I always had to be a half step behind him to help prevent disasters.. it was exhausting..

 

He would have these tantrums that would just blow your mind..we called them Earth Ending tantrums.. they would be short but very intense.. over silly things..

 

The first few years were rough!

 

We got a diagnosis of Sensory Processing Disorder around when he turned 3 1/2 and he started therapy.. Our Dr suggested we see a developmental Pediatrician and he gave us a diagnosis of severe ODD and ADHD.. We were in shock.. it didn't seem to fit.. While our own Dr agreed with the ADHD she felt the ODD was wrong.. and we were given the option to try medication..which we declined.. and started 4 years of therapy..

 

Our therapist finally decided our son suffered from anxiety.. separation anxiety and general anxiety disorder.. and we felt those were a bit more accurate than any of the other Dxs we had had until this point..He often spoke, to his therapist, that his parents had died.. (we had not.. but we had added a sibling to the mix by this point)

 

Summer of his 4th year he caught Lyme Disease that was treated with 28 days of antibiotics...he seemed to recover fully. We also tried anti anxiety medication which didn't help and seemed to make things much much worse.. He became hyper anxious.. and hyper active...we discontinued the medication.

 

He starts kindergarten...and we seek out a biomedical dr to see if we can help him naturally.. He diagnosis systemic yeast overgrowth and some food sensitivities.. We treat the yeast for a year and his food sensitivities improve. To us, his behavior also improves to a degree but not in school.. where his anxiety hinders him on all fronts. Frequent urination starts.. he has to go every 15 minutes.. and he DOES have to go..

 

He starts sleeping poorly.. often finding it very difficult to fall asleep.. he needs his sound machine and a weighted blanket.. at first melatonin helps quite a bit.. but then looses it's ability to help him. These issues continue to this day...

 

We struggle through first grade.. his sensory isseus, attention issues and anxiety continue without change.. Second grade sees similar.. the school talks about his anger issues.. he is placed in a very restrictive classroom environment and eventually placed in a day treatment program run by a psychiatric center.. they want to treat him for all sorts of issues.. blame the parents.. it was pretty awful.

He was bored..scared to attend school and his behavior became worse and worse and worse..until we finally pulled him from school.

 

 

 

This improved his behavior and anxiety 1000 times.. people who see him now comment on how different he is.. but we still have some issues..

 

the frequent urination..often increasing when he feels anxious or when he is in social settings (karate class, homeschool coop etc), he can be stubborn and moody but often this is directly tied to how well he has slept. His sleeping is still awful...

 

He had strep throat about a year ago..was treated for a week on antibiotics...

I should also add that he has tics.. he clears his throat constantly.. is always picking at his nose...

 

He can be impulsive.. but at other times he isn't.. He can show a lack of focus.. and yet at other times have very good focus.. even on things he isn't interested in..

 

 

If I read through the symptoms I can say that he exhibits many of them...but none of them came on suddenly.. he wasn't "fine" and then not fine....

 

So... thoughts?

Edited May 17, 2010 by ChantalD

[dcmom]

Chantal-

 

You have been on a long journey with your son, and it sounds like you are an amazing mom- always there for him and keeping things in perspective!

 

I think there are some on this board who have had kids that have maybe had PANDAS since VERY young- so hopefully they will chime in. My daughter's both had overnight onset at elementary school age, but with both, in retrospect, I DO think there was a mild onset prior to their debilitating onset. SO- the main thing to know with pandas is THERE IS NO BLACK AND WHITE, it is all shades of gray.

 

Where do you live?

 

My suggestions would be to get to a good doc ( if you could get to Maryland, Chicago, NJ or CT- that would be great). I would certainly suggest a thorough screening including: total immune panel, thyroid, Ingenex lyme test, maybe ASO and Anti Dnase- if you haven't had these done. I would also suggest your son do a researcher's blood test- which many of us have done, which tests for pandas (it is not definative- but the best tool we have now). This will give you a starting point (especially Cunningham's test). If these things seem AT ALL to point to pandas- I would get IMMEDIATELY to a pandas doc (Dr K, Dr L ) without wasting your time with anyone else.

 

I think, the good news would be, that if he does have pandas, you should be able to get some relief....

 

Hang in there....

Edited May 17, 2010 by dcmom

[MomWithOCDSon]

Chantal --

 

Like so many on this board, your son and mine might be "twin sons of different mothers." My DS did not, so far as we can recall have an "overnight onset," either, and he's always been "different" from his peer set, too. He began with anxiety and sensory issues, we believe, at about 3, and it seems to have ramped up from there. At 6 he was diagnosed with OCD. He also has some ADD or ADHD behaviors, but rather than tics, he's now dealing with OCD behaviors. We had to pull him out of school last fall because of overwhelming anxiety issues, separation and otherwise.

 

Long story made short, we've had him on antibiotics since last October, and he is slowly but surely improving. He has setbacks, and we are constantly questioning ourselves, but he is 80% better than he was a year ago now, and because of several cut-out-the antibiotics trials we've done on our own, it seems irrefutable that it is the antibiotics that have turned him around and continue to help him, and that he does, in fact, have PANDAS, despite being entirely asymptomatic for strep or any other significant illness. Just 2 weeks ago we finally sought out the advice of one of the doctors with a broad basis of experience treating PANDAS -- Dr. Kovacevic -- and we are moving forward with some immune testing, etc. to confirm the PANDAS diagnosis.

 

Since your DS has a documented history of both Lyme and strep, PANDAS/PITANDS seems like a distinct possibility, and I would explore it further. Seek out one of the doctors noted here on the board with experience in PANDAS, or perhaps your biomedical doctor is in "the loop" and can at least help you get started. Testing again for Lyme, ASO titers, AntiDnase-B and a standard immune panel might be one place to start. It might also be interesting to see if, given a weight-appropriate dose of an over-the-counter anti-inflammatory like Ibuprofen, your DS's behavior might improve for a short window.

 

Good luck to you! This board has been such a wealth of opportunity, advice, solace and comfort to my family for the last 7 months, so I'm certain you will learn much here and have doors open before you that will make your journey a bit easier.

[ChantalD]

where do I find a Dr who has experience with PANDAS? We are in New York State in the Mid Hudson Valley region..

[fuelforall]

Rhinebeck Health Center, Rhinebeck, NY 845 876 7082

Dr.s Bock, Bock and Compain are all familiar with PANDAS. Ken is a big name so don't expect to get a first appointment with him for some months, go to his brother or Dr. Mike.

But you could take the train down to Stamford Connecticut and talk to Dr. Denis Bouboulis, whom we write about around here. He knows the story, can get you immune testings (as can the others I mentioned) and put your child on the proper antibiotics, etc. Unlike the Bock group, he takes insurance. Probably worth the trip.

It does read like PANDAS.

 

That said, I would investigate a birth brain injury. THis is why I am taking my ds9 to a neurofeedback specialist in NYC, where I live. She has helped kids with these symptoms and usually finds it's due to something that happened in the child's brain before he came out of the womb. They use something called a QEEG, founded by Margaret Ayers, to help people with brain malfunctions. Sure sounds like my son and yours. No insurance of course but I'll pay money if it leads to a brain fix.

 

You should write to me directly. Your son sounds a lot like mine. His sensory processing disorder at nine has spiked and I think it's due to Pandas.

 

Best of luck.

Michael

[thereishope]

Welcome. Has he had a strep test since that + one a year ago? there are a few things you can do now while you are searching for a PANDAS educated doctor.

 

-Take your child for a strep test. I say start w/ a rapid. That comes back neg, have them run a culture. If that's negative, do blood tests as suggested above.

-Rule out strep in all family members

-Can he take Ibuprofen? For some kids that have PANDAS, that will ease symptoms. It's something to try.

 

Does your son have a history of ear infections or sinus infections?

 

Here's a list of very helpful threads. I suggest printing them out and reading them.

 

PANDAS Fact Sheet

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

 

PANDAS FAQ

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

 

PANDAS Flowchart

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

 

Also, here is a list of OCD symptoms as seen by PANDAS parents. Look through it. He may have OCD and you don't even realize it.

 

Signs of OCD in a young child

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

 

Doctors by State

http://www.latitudes.org/forums/index.php?showtopic=6428

 

These are the names of the docs that most on here consider specialists.

Dr B - Dr Bouboulis

Dr K - Dr. Kovacevic

Dr L - Dr Latimer

Dr T - Dr Triffileti

Edited May 17, 2010 by Vickie

[thereishope]

I wanted to add that if you had strep while pregnant and your child already had the "foundation" for PANDAS to surface later in life, I believe those antibodies that you produced would have been passed on baby in utero. Not that it is your fault. Don't ever think that. But it would explain those behaviors so early in life. But it is time to move forward and get him better.

[Stephanie2]

Sounds very much like my 5 yo. His pandas episodes began at the age of 18 months. My 2yo started with pandas at age 15 months. Before that he was a little colicky due to reflux, which looking back I wonder if he just had pandas from birth, since he was pretty much exposed to strep right out of the womb from my older son.

 

Anyway, my 5yo had VERY bad sensory processing disorder. Just like you said, very tactile defensive, but then would be very sensory seeking at the same time. Hates loud noise, but then makes lots of noise.

 

Now that we have his pandas more managed, his sensory defensiveness is next to nothing which is HUGE! However, he is still quite sensory seeking and I 'm still trying to figure that out.

 

Some other things that disappeared: ODD, anxiety, depression, irritability, separation anxiety, urinary frequency, anxiety around bowel movements (he was in pullups until age 4 yrs. 10 months).

 

If your son does have pandas and you are able to get it under control, I would bet that 90% of the symptoms/problems that you are describing will disappear. My son is SOOO much better and I am pretty sure he will manage in a mainstream classroom this fall when he starts kindergarten.

 

BTW, you said that you went to a biomedical doctor, are you referring to a DAN doc? Our first DAN doc did not pick up on my son's pandas and when I picked up on it, he did not know how to treat it/refused to treat it. I found one who did and we are so much better.

 

Best of luck to you!

Stephanie

Hello

I am new to this board and I hope that you all don't mind me jumping right in with my questions and concerns.. this may be long..

 

My son, currently 9 years old.. is a big old puzzle..

 

He was a very colicky infant...I had several courses of antibiotics (including a course for Strep Throat) before he was born.. shortly after birth he was placed on antibiotics again for a fever..

He was always a child who startled easily.. slept poorly and was just all around miserable..

 

As an older infant/toddler.. he would wake at night and be awake for hours.. usually talking to singing or laughing.. He never napped...

 

Around age 2.. we noticed he was very sensory sensitive.. he would startle at any loud noise not of his making.. he hated the touch of certain things.. a small bump could send him into howls of tears... and yet at other times he sought out deep sensory feedback.. crashing into walls.. hugs that could strangle you.. He had no concept of what a "gentle" touch was..

 

He was always a very active child..had little fear of things.. very daring... I always had to be a half step behind him to help prevent disasters.. it was exhausting..

 

He would have these tantrums that would just blow your mind..we called them Earth Ending tantrums.. they would be short but very intense.. over silly things..

 

The first few years were rough!

 

We got a diagnosis of Sensory Processing Disorder around when he turned 3 1/2 and he started therapy.. Our Dr suggested we see a developmental Pediatrician and he gave us a diagnosis of severe ODD and ADHD.. We were in shock.. it didn't seem to fit.. While our own Dr agreed with the ADHD she felt the ODD was wrong.. and we were given the option to try medication..which we declined.. and started 4 years of therapy..

 

Our therapist finally decided our son suffered from anxiety.. separation anxiety and general anxiety disorder.. and we felt those were a bit more accurate than any of the other Dxs we had had until this point..He often spoke, to his therapist, that his parents had died.. (we had not.. but we had added a sibling to the mix by this point)

 

Summer of his 4th year he caught Lyme Disease that was treated with 28 days of antibiotics...he seemed to recover fully. We also tried anti anxiety medication which didn't help and seemed to make things much much worse.. He became hyper anxious.. and hyper active...we discontinued the medication.

 

He starts kindergarten...and we seek out a biomedical dr to see if we can help him naturally.. He diagnosis systemic yeast overgrowth and some food sensitivities.. We treat the yeast for a year and his food sensitivities improve. To us, his behavior also improves to a degree but not in school.. where his anxiety hinders him on all fronts. Frequent urination starts.. he has to go every 15 minutes.. and he DOES have to go..

 

He starts sleeping poorly.. often finding it very difficult to fall asleep.. he needs his sound machine and a weighted blanket.. at first melatonin helps quite a bit.. but then looses it's ability to help him. These issues continue to this day...

 

We struggle through first grade.. his sensory isseus, attention issues and anxiety continue without change.. Second grade sees similar.. the school talks about his anger issues.. he is placed in a very restrictive classroom environment and eventually placed in a day treatment program run by a psychiatric center.. they want to treat him for all sorts of issues.. blame the parents.. it was pretty awful.

He was bored..scared to attend school and his behavior became worse and worse and worse..until we finally pulled him from school.

 

 

 

This improved his behavior and anxiety 1000 times.. people who see him now comment on how different he is.. but we still have some issues..

 

the frequent urination..often increasing when he feels anxious or when he is in social settings (karate class, homeschool coop etc), he can be stubborn and moody but often this is directly tied to how well he has slept. His sleeping is still awful...

 

He had strep throat about a year ago..was treated for a week on antibiotics...

I should also add that he has tics.. he clears his throat constantly.. is always picking at his nose...

 

He can be impulsive.. but at other times he isn't.. He can show a lack of focus.. and yet at other times have very good focus.. even on things he isn't interested in..

 

 

If I read through the symptoms I can say that he exhibits many of them...but none of them came on suddenly.. he wasn't "fine" and then not fine....

 

So... thoughts?