Jump to content
ACN Latitudes Forums

looks like i am leaving the club...


Recommended Posts

I can't comment, except on the "pandas kids don't have good times just bad or worse". In my opinion that is rubbish.... sorry. Our dd6 is definitely PAND, just possibly not the strep bit, maybe myco but ONLY gets worse with certain illnesses, that usually present with fever and gets better with abx or steroids or even just time. In 2 years we've had 2 bad epsiodes each lasting about 2-3 months and 2 minor epsiodes lasting 2-3 weeks or so. The rest of the time she is COMPLETELY symptom free.

 

I too would go for a second opinion.. how bout DR T or Dr K?

 

good luck...

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

Top Posters In This Topic

wornoutmom,

 

Your post made me so sad.

 

I'd be okay if it posted why you felt that your son had some other diagnosis, but what you posted was indicating you were largely back to a non-diagnosis. I hate to disagree with Dr. L, but I have to say that PANDAS kids absolutely have good and bad days. It is exactly the sawtooth effect that so distinguished the disease for Dr. K and Dr. Swedo.

 

Did you ever run the CaM Kinase II results? It certainly seemed you had exacerbations associated with illness and that would perfectly correlate with high auto-antibodies with some BBB imparement.

 

So did you ever have significant remission on long term antibiotics? Did you have significant remission on prednisone?

 

Sigh. I know you followed the flowchart at http://www.latitudes.org/forums/index.php?showtopic=6688

 

how did you fall out?

 

Best regards and thinking of you,

 

Buster

 

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...
Link to post
Share on other sites

Its 2 am and I cant sleep so I logged back on here and am astounded and overwhelmed by all the support and encouragement from all of you. And Dr. T! Thank you so much, I will be calling you soon to get your opinion!

 

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. She did not say why she did not think it fit "classic PANDAS" but that she believed in PANDAS and had seen over 150 cases and he did not look like it. I thinkseveral things complicate this. First, that we gave my son his first dose of Paxil at age 6, and his sudden onset of new OCD symptoms came on the next day. Positive strep 4 days later. So she felt it possible that the PAxil had activated this reaction (mind you it did not go away when we stopped the paxil after 4 days). Secondly, that when the OCD symptoms returned full out at age 8 he was not strep positive and responded to a change in ssri. Third, this has been going on so long, that when people ask me about his current symptoms I tend to focus on the extreme rage/anxiety/exorcist episodes, as that is what makes it so intolerable. The milder OCD, tics, irritability, baby talk and worry are often there, but seem managable in comparison, so I tend to not talk a lot about that and see that as him being "fine". This last round of Omnicef he did not respond in the same way he had earlier in the fall. Earlier we had seen apattern of improvement after about 5 days, then and edging up of symptoms again after 5 days off abx. This last dose started 1-8 and we saw a week of improvement after about day 5, but then it all came back again. With the worst day being last Friday. She mentioned his nocturnal enuresis as a thought in her seizure theory, in that I mentioned that he has at times fallen asleep on the couch, and then wet himself within 10-15 minutes. She said usually this would occur in deep sleep that takes 60-90 minutes to achieve.

 

The problem I have with my local docs is that this is somewhat of a 3rd opinion. We had a phone consult with Dr. N in mid Dec who also said she was not convinced it was PANDAS and recommended mood stabilizers. Two weeks later we consulted with another psychiatrist, who recommended Lamictal. And so now this is a third. I am not against trying it if it may help. I know that there are parents on this board who are still using mood stabilizers for their kids despite other PANDAS treatment. Its just, I am so sickened to continue to have my son endure all these medical appointments and tests only to have everything come back negative or inconclusive...I know it is taking its toll on him. I feel like I built this trip up for him that we would finally get the answers we needed. Instead, more tests, more questions. I think he thought Dr L was going to make him better. Now I don't know what to tell him. Or how to explain to him he needs to undergo 3 days hooked up to an EEG, only to likely find out - more nothing. Or how to come to grips with the idea it might be Bipolar.

 

In regards to Dr K telling me he needed IVIG immediately, I have to say that response was from a short email to him in October, in which I told him my son had been diagnosed with PANDAS at age 7 and the history of psychiatric treatment. It was not the full story. I guess this is how medicine works. You rule out all the "horses" until you are left with zebra. I kind of have to laugh now at my screen name - if I thought I was "wornout" before, I had no idea. And now I have a huge snowstorm, possible flight delays, lack of sleep, and my son's anxiety about returning back to "real life" to deal with tomorrow.

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

Link to post
Share on other sites
Yeah, Dr. T!!!!!!!!!!

 

 

P.Mom,

 

Since you are so confident that "faith is right", you must know something. Please elaborate/fill in the details.

 

 

I think Faith is right!!!

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

 

Dr. T

 

 

Well Im thinking of it like this.PANDAS or no PANDAS you have a chikd who has something neurological going on that several MDs cant exactly dx.If all of the psy meds do not help and you can help him with antibiotics and maybe IV then hey call it whatever you want just someone help.

 

i would definitly call Dr T he has changed my sons life.I would let him check some blood levels and see where that brings you.

 

I understand you heart ache and the feelings you are having .

Dr L isnt the only MD in the world.

]Remember, When one door shuts a window is opened!

 

Melanie

Link to post
Share on other sites

Does anyone know Dr Latimer's views on whether a child can have co-morbid disorders? PANDAS and something else?

 

I need to read through your revious posts and get your history again before I start giving tons of "maybe this" etc.

 

My son has awesome good times when not in an exacerbation. Even now that he is recovered, ever so often something pops up that I freak ot about, but it passes super quick. I have the mentaility now that if my son was perfect all the time, then I would also have reason to worry. Do patients revist Latimer after their children are considered recovered for a follow up?

 

Take in what was told, compile all your info and try your darndest to look at it from the "outside". I know you just spent money on latimer, but if you can, go get a second opinion. Realize their are more parents on here revisting years later saying they thought it was PANDAS. dismissed it, and now they are back. Be 100% sure in your heart and mind before you walk away.

 

And whether it's PANDAS or not, you already have a lifetime, irrevocable membership to our club:)

Link to post
Share on other sites

Please don't give up hope here. Every child is different, and on top of the PANDAS/PITANDS issues you also have to deal with puberty and the chemical changes that happen at this time.

 

My experience has taught me that every dr has an opinion, and they do differ!

 

Keep strong, pull your family and close friends together to give you some extra support and help.

 

My thoughts are with you

 

 

Jules

 

(Hug enclosed)

Link to post
Share on other sites

Wornoutmom:

 

I can so relate to your frustration. It's been 3 years for us, and an endless chain of local docs telling us why our son did not have PANDAS but instead had {fill in the blank}. Our son just gave up on believing that any of these doc appointments we dragged him to would ever help him. Several times, we felt like we were hanging on by the fingernails on one hand, about to drop into the abyss.

 

Which is why I'd strongly encourage you to do the Cunningham test. There were 2 times in the last 3 years where we felt like we needed some kind of "corroborating evidence" of PANDAS to feel comfortable that we should pursue that diagnosis "against medical advice" from all the local docs. We volunteered for a PET scan research study in 2008 with Dr. Chugani in Detroit, and this confirmed inflammation in the basal ganglia exactly as predicted for either Sydenham's chorea or PANDAS. That made us feel like we were going down the right road. Then, again in 2009 when all the local docs were telling us we were "deluding ourselves" and our son just had severe OCD / Tourette's / GAD, we did the Cunningham test, and it came back at the high end for CAMKII between PANDAS and SC. That renewed our belief in the diagnosis and our will to continue fighting against the "prevailing opinion" of the local docs.

 

We had told ourselves that if the Cunningham numbers came back completely inconsistent with PANDAS, we would pursue the traditional psychiatric diagnosis to try to help our son, and we would have been at peace with that, I think. But the Cunningham result "validated our gut instinct" and made us feel much more confident that we were doing the right thing by going down the PANDAS path. Can't tell you how much of a mental relief that was!

 

So - for your own peace of mind - do the Cunningham test. However it turns out, it should make you feel better about which direction you take next.

 

Best of luck... and this club is like the Hotel California: you can check out anytime you like, but you can never leave. :blink: We'll leave the light on for ya!

 

 

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

Link to post
Share on other sites

I am not new to this PANDAS an/blog but still behind on how you do the cunningham test. and why? My daughter has a extremely high baseline for ASO and DNaseB. although the DNase came down drastically, but still too high/ with astricks from the blood lab, over 3 month course of antibiotics. The ASO slightly dropped. We know she has PANDAS and are working to lower. Do we need to consider the Cunninham test? What does it do.

 

I love your Chart. We followed it sort of without looking but it is a great corse of action for this mystery? disorder. Still not understanding why it is a mystery?

 

chodnett

Link to post
Share on other sites

Wornoutmom -- Please do not leave this club!! Listen, my kid was MISdiagnosed with pddnos and co-morbid anxiety disorder at age 5, with symptoms long before then. HOWEVER, she never met all the criteria for pddnos, but we had to go with it in the absence of anything else, and believe me we never gave up searching and trying and hoping EVER because in our gut it never felt right. Then, out of the blue her allergist went to a med conference where Swedo was a speaker and then said to us, "Hmmmm, maybe we should run some Pandas strep stuff on her, I doubt that's what it is, but let's just rule it out." Low and behold, DNASE and ASO were way high and we were not even in the middle of an exasberation! I was afraid to hope in my heart that this all really was pandas after all...and we ABSOLUTELY did the Cunningham test, just as another indicator, one way or the other, if we were on the right track. I still remember pacing up and down the driveway waiting for that envelope to come from OSU, heart pounding, almost afraid to open the results. Her CamK was 188 and all the other levels were at the very least 4x, often 16x, above normal controls! We did ivig with Dr. K in August and almost right away many of the most horrible symptoms went away. Yes, it is a horrible journey and it is certainly not over for us by any means, but I just wanted you to give you additional encouragement just like all the rest of us. My late mother used to say, "What seems so far could be so near." Please don't give up, we're not giving up on you!

Link to post
Share on other sites

I strongly agree with what the others have said about getting the Cam Kinase test done. I would hang in there and not rule out PANDAS. I am really glad you will be consulting with Dr. T. I remember my phone conversation with you last month, and I did feel that your son's story and his symptoms shared many similarities with my PANDAS son, who has made significant improvements from PANDAS treatments such as full strength Zithromax and plasmapheresis. Also, please keep in mind the improvements you have seen over the years when your son has gone on antibiotics. That's telling you something. Go with your gut. I think I mentioned this to you before, but it is worth repeating. Omnicef did not seem to do anything for my son even at the full strength dose, but the full strength Zith is making a huge positive difference. I hope you will have a chance to try this some time soon. Please do not give up on this club. I do feel you belong here and we are here to offer support and help. Call any time if you want to talk again.

 

Ellen

 

Its 2 am and I cant sleep so I logged back on here and am astounded and overwhelmed by all the support and encouragement from all of you. And Dr. T! Thank you so much, I will be calling you soon to get your opinion!

 

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. She did not say why she did not think it fit "classic PANDAS" but that she believed in PANDAS and had seen over 150 cases and he did not look like it. I thinkseveral things complicate this. First, that we gave my son his first dose of Paxil at age 6, and his sudden onset of new OCD symptoms came on the next day. Positive strep 4 days later. So she felt it possible that the PAxil had activated this reaction (mind you it did not go away when we stopped the paxil after 4 days). Secondly, that when the OCD symptoms returned full out at age 8 he was not strep positive and responded to a change in ssri. Third, this has been going on so long, that when people ask me about his current symptoms I tend to focus on the extreme rage/anxiety/exorcist episodes, as that is what makes it so intolerable. The milder OCD, tics, irritability, baby talk and worry are often there, but seem managable in comparison, so I tend to not talk a lot about that and see that as him being "fine". This last round of Omnicef he did not respond in the same way he had earlier in the fall. Earlier we had seen apattern of improvement after about 5 days, then and edging up of symptoms again after 5 days off abx. This last dose started 1-8 and we saw a week of improvement after about day 5, but then it all came back again. With the worst day being last Friday. She mentioned his nocturnal enuresis as a thought in her seizure theory, in that I mentioned that he has at times fallen asleep on the couch, and then wet himself within 10-15 minutes. She said usually this would occur in deep sleep that takes 60-90 minutes to achieve.

 

The problem I have with my local docs is that this is somewhat of a 3rd opinion. We had a phone consult with Dr. N in mid Dec who also said she was not convinced it was PANDAS and recommended mood stabilizers. Two weeks later we consulted with another psychiatrist, who recommended Lamictal. And so now this is a third. I am not against trying it if it may help. I know that there are parents on this board who are still using mood stabilizers for their kids despite other PANDAS treatment. Its just, I am so sickened to continue to have my son endure all these medical appointments and tests only to have everything come back negative or inconclusive...I know it is taking its toll on him. I feel like I built this trip up for him that we would finally get the answers we needed. Instead, more tests, more questions. I think he thought Dr L was going to make him better. Now I don't know what to tell him. Or how to explain to him he needs to undergo 3 days hooked up to an EEG, only to likely find out - more nothing. Or how to come to grips with the idea it might be Bipolar.

 

In regards to Dr K telling me he needed IVIG immediately, I have to say that response was from a short email to him in October, in which I told him my son had been diagnosed with PANDAS at age 7 and the history of psychiatric treatment. It was not the full story. I guess this is how medicine works. You rule out all the "horses" until you are left with zebra. I kind of have to laugh now at my screen name - if I thought I was "wornout" before, I had no idea. And now I have a huge snowstorm, possible flight delays, lack of sleep, and my son's anxiety about returning back to "real life" to deal with tomorrow.

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...