Jump to content
ACN Latitudes Forums

looks like i am leaving the club...


Recommended Posts

I don't have anything to add as far as advice- I agree with the advice that has already been given. Sorry you didn't get the answers and resolution you were depending on Dr.L to give. What a blow!

But, I hope you'll stay here with us, not just to get support for yourself and your son, but also to share your journey with us- whether it turns out to be PANDAS or not. One of the things that makes this "club" so powerful is the sharing of experiences and knowledge...we all learn so much from each other and get strength from each other as well.

Link to post
Share on other sites
  • Replies 91
  • Created
  • Last Reply

Top Posters In This Topic

Hey - I was thinking about you last night as your post made me feel so sad. I know how hard it is just to communicate with a doctor about what has happened - I often felt like they'd make a decision early on in the appt, and then just listen for the confirming info, especially once we started therapy. I tried so hard not to sound like "the nutty mom" - but found it hard to convey both urgency of the crisis and the logical information at the same time.

 

So we did a spreadsheet for our daugher, that covered 5 years and laid out the medical challenges, medications and the neurological/psychological issues along side. Once we did this, I was able to stop talking so much in an appt, and just let the doctors see a summary of the 12 inch thick file, and then just answer questions. This helped a ton, and also seemed to make doctors take us very seriously and stop condescending. I saw Dr. T's file, and it is similar to what we did (different format). If you'd like a copy of ours, PM me & I'll take the identifying stuff off it & forward to you. We also wrote up a 1-2 page summary and attached that to the spreadsheet.

Link to post
Share on other sites

First and foremost a big THANK YOU out to all of you who have offered advice and hope to my wife "WornOutMom" and son through this forum. :) After yesterday's events with Dr. L I am as well very confused on where to turn next. :blink: Dr K will definitely be hearing from us!

 

Quick question, is the Cunningham test and the Cam Kinase test one of the same out of OSU??

 

I still believe that our son would benefit highly from a long term dose of Zithro not Omnicef and a burst of steroids, but who and where do you turn to to get that implemented?

 

Thanks again for all of the support.

Link to post
Share on other sites

I would like to say that I am sorry you are having such a difficult time determining what is going on with your son.

 

I whole-heartily agree with the others’ sentiments that you get a second opinion—always follow your instincts. However, I think if it is feasible for your family, you should follow up with Dr. Latimer’s recommendations. As parents whose children have suffered from this, I think we can look at things with “PANDAS colored glasses”. I really want to stress that Dr. Latimer is a neurologist who treats many neurological problems…including seizures and PANDAS. She doesn’t need to be convinced that PANDAS is real…so I would definitely weigh what she has said in regards to your son’s case. It’s not like you were getting a brush-off from a doctor who won’t diagnose or treat PANDAS because they don’t believe in it or don’t want to learn to treat it. We certainly can NOT put Dr. Latimer in this category. That is why you should consider what she has observed with your son.

 

I also strongly agree that you should have your son’s blood sent to Dr. Cunningham. I am a little perplexed as to why she didn’t want to go that route with him…perhaps she was just trying to save you the $400 cost.

 

She said kids with PANDAS don’t seem to have good times - just bad and really bad

 

Okay….I am really scratching my head about that! I would love to have been a fly on the wall to hear the entire context of this…and her intonations/facial expressions.

 

As far as leaving the club…well, I think we all know that it is way too premature for you to be considering that…besides whether your son has PANDAS or not….everyone is welcome.

 

Wornoutdad,

 

Yes it is the same test...the terms can be inter-changed.

 

I think if you want a longer trial of antibiotics or steroids, then Dr. T would probably be your next step.

 

From reading this forum, and his website, I believe that Dr. K feels very strongly that IVIG is the treatment for PANDAS. I'm not sure, but I think Dr. T is more aggressive with antibiotics first.

 

I hope this helps, and I am sorry you guys are having such a hard time right now.

 

~Karen

Link to post
Share on other sites

Hello, Wornoutdad,

 

Did you see Dr T's very kind offer earlier in this thread?

 

I will be happy to give you a free second opinion by phone anytime you wish

 

Dr. T

First and foremost a big THANK YOU out to all of you who have offered advice and hope to my wife "WornOutMom" and son through this forum. :) After yesterday's events with Dr. L I am as well very confused on where to turn next. :blink: Dr K will definitely be hearing from us!

 

Quick question, is the Cunningham test and the Cam Kinase test one of the same out of OSU??

 

I still believe that our son would benefit highly from a long term dose of Zithro not Omnicef and a burst of steroids, but who and where do you turn to to get that implemented?

 

Thanks again for all of the support.

Link to post
Share on other sites
Hello, Wornoutdad,

 

Did you see Dr T's very kind offer earlier in this thread?

 

I will be happy to give you a free second opinion by phone anytime you wish

 

Dr. T

First and foremost a big THANK YOU out to all of you who have offered advice and hope to my wife "WornOutMom" and son through this forum. :) After yesterday's events with Dr. L I am as well very confused on where to turn next. :wacko: Dr K will definitely be hearing from us!

 

Quick question, is the Cunningham test and the Cam Kinase test one of the same out of OSU??

 

I still believe that our son would benefit highly from a long term dose of Zithro not Omnicef and a burst of steroids, but who and where do you turn to to get that implemented?

 

Thanks again for all of the support.

 

Yes I did and we will take him up on the offer.

Link to post
Share on other sites
I would like to say that I am sorry you are having such a difficult time determining what is going on with your son.

 

I whole-heartily agree with the others’ sentiments that you get a second opinion—always follow your instincts. However, I think if it is feasible for your family, you should follow up with Dr. Latimer’s recommendations. As parents whose children have suffered from this, I think we can look at things with “PANDAS colored glasses”. I really want to stress that Dr. Latimer is a neurologist who treats many neurological problems…including seizures and PANDAS. She doesn’t need to be convinced that PANDAS is real…so I would definitely weigh what she has said in regards to your son’s case. It’s not like you were getting a brush-off from a doctor who won’t diagnose or treat PANDAS because they don’t believe in it or don’t want to learn to treat it. We certainly can NOT put Dr. Latimer in this category. That is why you should consider what she has observed with your son.

 

I also strongly agree that you should have your son’s blood sent to Dr. Cunningham. I am a little perplexed as to why she didn’t want to go that route with him…perhaps she was just trying to save you the $400 cost.

 

She said kids with PANDAS don’t seem to have good times - just bad and really bad

 

Okay….I am really scratching my head about that! I would love to have been a fly on the wall to hear the entire context of this…and her intonations/facial expressions.

 

As far as leaving the club…well, I think we all know that it is way too premature for you to be considering that…besides whether your son has PANDAS or not….everyone is welcome.

 

Wornoutdad,

 

Yes it is the same test...the terms can be inter-changed.

 

I think if you want a longer trial of antibiotics or steroids, then Dr. T would probably be your next step.

 

From reading this forum, and his website, I believe that Dr. K feels very strongly that IVIG is the treatment for PANDAS. I'm not sure, but I think Dr. T is more aggressive with antibiotics first.

 

I hope this helps, and I am sorry you guys are having such a hard time right now.

 

~Karen

 

Karen, thanks for the reply. We are not going to Pooh-Pooh anything that Dr. L has said and/or recommended, in fact we have already scheduled some procedures that will investigate the possibility of seizures.

Link to post
Share on other sites

we have already scheduled some procedures that will investigate the possibility of seizures.

Can you explain a bit more about the types of seizures your son is having? Is he or are you aware of them? Do they happen at night? Cause bedwetting, jerky movements, etc? Why does Dr. L think that it's an issue?

Link to post
Share on other sites

Worn out Mom,

I have been in the same position where you are. Some doctors saying it isn't PANDAS, some saying it is, and one saying it is Tourettes and PANDAS. It is frustrating and I figured that I would have to go the distance on the PANDAS issue. We had the same response to antibiotics. At first he would respond to it well within 5 days and then worsen after 5 days of discontinue. Then antibiotics stopped working. Even after doing a round of Zithromax long term he wasn't responding to it. I think that maybe he had been hit too many times and yo-yo'd. We did IVIG and he was better. Also, high dose Augmentin helped him. The Cunningham test finally became available and we tested him. Turns out we were right and he tested in the PANDAS range. I am glad we followed the path! Good luck. I wish there was only one path, but unfortunately there are a lot of stops and turns along the way!

Link to post
Share on other sites

Here's a more complete history on wornoutmom's son (original post) http://www.latitudes.org/forums/index.php?...ic=6464&hl=

 

Wornoutmom/dad...I completely agree with everyone else, get a 2nd opinion, call Dr. T. and do the Cunningham tests.

 

From reading your son's history, I think it is interesting that the only antibiotic he's been on has been has been Omnicef ( is that right?). No high dose Augmentin or Azith...could this be correct? How could Dr. L. so confidently rule out PANDAS without a decent antibiotic trial, a steroid burst, or the Cunningham tests??? eeek. If it's worth anything, I think it absolutely sounds like your son has PANDAS. Our dd was also on a cephalosporin (ceftiofur--which is is the same class of abs as Omnicef)...it did zilch for her as well.

 

BTW...I don't consider Dr. N. to be a PANDAS expert by any means. Just my opinion, from what I have heard from other sources.

 

Have you noticed any improvement on Advil?

Link to post
Share on other sites
Just saw dr latimer a few hours ago and she does not believe my son has PANDAS. I am feeling so overwhelmed and confused right now. Its not that I wanted to hear that he does have PANDAS, its that so much of what I've read from you all matches our

t experience with our son, being here on this forum is the first time I've felt like others really understood all we have gone through. And of course, I'm still wondering if somehow I did a horrible job describing it all. She sent us for bloodwork to rule out lyme, heavy metals etc., which is the first time anyone has done this for us. She also referred us to a neurologist in Michigan she knows for an MRI, petscan and 72 hour EEG. She suspects this may be some sort of seizure type problem. Or if not, then bi-polar disorder. Either way, the meds would be the same (lamictal, depakote etc). But if we rule all this out, then were left with OCD and bipolar, and that means a life time.... when I asked about the fact that his syptoms get worse with illness and get better with antibiotics, she said that seizures can be brought on by illness, and in turn mental illness can get worse with illness as well. She said kids with PANDAS dont seem to have good times - just bad and really bad...and of course the neuro exam was all fine. She said she didn't want to go down the PANDAS road with him thinking there may be something else going on. So I suppose we have a new direction to follow, albeit not one that I'm entirely comfortable with. Thank you all for all your support through this. I am keeping your children in my thoughts...

DO NOT LEAVE THIS CLUB, I REPEAT DO NOT LEAVE THIS CLUB. OK, sorry for that. But really. I read your post. I am NOT an expert. But I work in healthcare; I am not a physician but I do see patients. And I can tell you a few things I have learned over the years. Dr. T if you are reading this you may know what I am talking about. First, sometimes doctors talk out loud what is buzzing around in their heads. Many differential diagnoses may be spinning around their brain and they come out their mouth. That is not always a good thing. For example, I went to see my doctor years ago for dizziness. My doc did a neuro exam and I did sway a bit with my eyes closed. He started saying how I needed all these tests to rule out neuroma (tumor) and multiple sclerosis, ect. After all was said and done I had fluid in my inner ear, but I was a wreck for a few weeks. In addition, although I work in OBGYN, I work in a clinic and we have a VERY large mental health population. I have seen many patients over the years with bipolar disorder. Many of these patients have anxiety and sometimes OCD as a comorbid condition. Most patients I have seen with bipolar disorder that are severe will stay awake for days at a time and not sleep talk really fast, try to buy a bunch of stuff even though they have no money, then have other times where all they do is sleep. They do have anger issues and rages, they frequently get mad at me for no reason and storm out of the clinic. Most of these are pregnant older teens and adults though. Dr. T don't feel bad when I say this but I feel a neurologist can suspect a patient may have bipolar, but I feel that diagnosis should come from a darned good psychiatriast. I don't see a correlation with the neuro exam being normal. Five years ago when my ds9 was four and had a severe, debilitating flare, most likely PANDAS or at least PANDAS LIKE, the neurologist we saw charted a normal neuro exam- I have those old records. But I will tell you- he had staring spells and all kind of bizarre movements. But it came and went. That is why Buster said in a prior post that even Susan Swedo has never seen the "onset of Pandas" herself...I think that is was Buster said so sorry if I misquoted that. The EEG is most likely long overdue. Get all the testing you can. Get all the opinions you can. Good luck!!

Link to post
Share on other sites

Out of curiousity, I did a quick search on bipolar disorder in children. Here is a link http://bipolar.about.com/cs/kids_diag/a/red_flags4.htm

 

Holy guacamole...they sound just like PANDAS symptoms. I am in the camp that lots of "bipolar" kids are actually undiagnosed PANDAS. My dd had many many of these "bipolar" symptoms (along with anorexia nervosa) in the height of her worst PANDAS episode (Spring 08). I should also add that some of these symptoms (eg aggressive behavior) were made worse with psych. meds (serotonin syndrome) in May 08.

 

Very Common Symptoms of Early-Onset Bipolar Disorder

 

Separation anxiety

 

Rages & explosive temper tantrums (lasting up to several hours)

 

Marked irritability

 

Oppositional behavior

 

Frequent mood swings

 

Distractibility

 

Hyperactivity

 

Impulsivity

 

Restlessness/ fidgetiness

 

Silliness, goofiness, giddiness

 

Racing thoughts

 

Aggressive behavior

 

Grandiosity

 

Carbohydrate cravings

 

Risk-taking behaviors

 

Depressed mood

 

Lethargy

 

Low self-esteem

 

Difficulty getting up in the morning

 

Social anxiety

 

Oversensitivity to emotional or environmental triggers

 

Common Symptoms of Early-Onset Bipolar Disorder

 

Bed-wetting (especially in boys)

 

Night terrors

 

Rapid or pressured speech

 

Obsessional behavior

 

Excessive daydreaming

 

Compulsive behavior

 

Motor & vocal tics

 

Learning disabilities

 

Poor short-term memory

 

Lack of organization

 

Fascination with gore or morbid topics

 

Hypersexuality

 

Manipulative behavior

 

Bossiness

 

Lying

 

Suicidal thoughts

 

Destruction of property

 

Paranoia

 

Hallucinations & delusions

Link to post
Share on other sites
Buster, I was not able to get the Cam Kinase done before this appt. as the kit got lost in the fed ex mail. I was supposed to have Dr L do it today at our appt but she told me she felt it would be a waste of money.

Wow, I most assuredly don't agree with her there. If I can nudge you in any way, I'd really encourage you to do the test. It's essentially the only lab test that at least indicates a direction (given all the problems with GABHS cultures and blood work). Otherwise you are just left with the clinical symptoms (which are really tough in your son's case). Yes, the research test might come back negative, but wow, wouldn't that help your comfort one way or the other?

 

It is totally possible that it isn't PANDAS, but it seems you'd want to rule out the others. What I think you've indicated is that SSRIs did not seem to stabilize mood. This seems really consistent with other reports on this panel and in Murphy's report where they saw greater activation on SSRI's -- I don't think it is exactly the dose, but rather that if the antibodies are interfering with dopamine receptors, then that SSRI is acting like turning up the volume on your TV show and then the antibody comes along like a loud commercial. What I'm getting at is it's like the body can't quite get the dopamine regulated because there is actually something interfering with the receptors (not with the dopamine itself). This, in my opinion, is why there is activation on SSRIs -- you're adding dopamine to an unregulated baseline -- you'll still get the peaks and valleys but with higher peaks (and higher valleys) -- meaning disinhibition occurs.

 

I'm presuming you've had the MRI for ADEM and checked for demylination. Have you had a functional MRI -- such as during an episode so that can see what is triggering?

 

I can see that Dr. L might have a profile now for PANDAS kids.... I just was listening though to Dr. K talking about the spectrum from Autism on one side to chorea on the other. Yes, it might be something else, but wow, I'm really surprised that she's pointing you in a new direction rather than completing the few tests that might help.

 

Did you ever run a prednisone burst ?

 

 

You also mentioned Omnicef -- did you ever try the other macrolides such as azith. Not recommending just wondering how you ended up on Omnicef and how you ended up on the oscillation pattern (i.e., 5 on 5 off). I know you are seeking some closure and direction and I'm probably just adding more weight, but I just don't know understand which of the symptoms has given Dr. L the confidence to redirect you as it's definitely not obvious from what you wrote.

 

Best regards

 

Buster

 

 

Buster: We have not had an MRI, so Dr L pointing us in that direction is useful I suppose. What is ADEM? Functional MRI during an episode would not be possible, as they are triggered by obsession to know what is happening or what he will be doing. In an MRI he'd be "doing" something...Its not so much an episode and a giant out of control terror attack brought on by inability to perform a compulsion. We have not run a prednisone burst - no one willing to prescribe this so far. He was on a 5 day course of steroids for poison ivy a year and a half ago and remember him being unusually calm during this time. I thought it was the Benadryl, but now truly wonder. We ended up on Omnicef from the pediatrician for sinus infection and then re prescribed by the ENT. The doctors switched to Omnicef for him some years ago for infections, and I don't know exactly why other than they thought it was stonger for him. They'd prescribe my younger son with Zith for strep but dose Carter on Omnicef. Guess I never asked why...

Link to post
Share on other sites
Out of curiousity, I did a quick search on bipolar disorder in children. Here is a link http://bipolar.about.com/cs/kids_diag/a/red_flags4.htm

 

Holy guacamole...they sound just like PANDAS symptoms. I am in the camp that lots of "bipolar" kids are actually undiagnosed PANDAS. My dd had many many of these "bipolar" symptoms (along with anorexia nervosa) in the height of her worst PANDAS episode (Spring 08). I should also add that some of these symptoms (eg aggressive behavior) were made worse with psych. meds (serotonin syndrome) in May 08.

 

Very Common Symptoms of Early-Onset Bipolar Disorder

 

Separation anxiety

 

Rages & explosive temper tantrums (lasting up to several hours)

 

Marked irritability

 

Oppositional behavior

 

Frequent mood swings

 

Distractibility

 

Hyperactivity

 

Impulsivity

 

Restlessness/ fidgetiness

 

Silliness, goofiness, giddiness

 

Racing thoughts

 

Aggressive behavior

 

Grandiosity

 

Carbohydrate cravings

 

Risk-taking behaviors

 

Depressed mood

 

Lethargy

 

Low self-esteem

 

Difficulty getting up in the morning

 

Social anxiety

 

Oversensitivity to emotional or environmental triggers

 

Common Symptoms of Early-Onset Bipolar Disorder

 

Bed-wetting (especially in boys)

 

Night terrors

 

Rapid or pressured speech

 

Obsessional behavior

 

Excessive daydreaming

 

Compulsive behavior

 

Motor & vocal tics

 

Learning disabilities

 

Poor short-term memory

 

Lack of organization

 

Fascination with gore or morbid topics

 

Hypersexuality

 

Manipulative behavior

 

Bossiness

 

Lying

 

Suicidal thoughts

 

Destruction of property

 

Paranoia

 

Hallucinations & delusions

 

 

I am not forum-sophisticated enough to know how to operate a "poll" on this. But I am VERY interested to know how many parents of kids with diagnosed and/or treated PANDAS have/had these symptoms. My son has exhibited all but 8 over the years. Does anyone know how to start a thread with this as a poll where we could track this?

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

×
×
  • Create New...