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looks like i am leaving the club...


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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...

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First HUGS! I am so sorry not that I want your son to have a definitive diagnosis of PANDAS b/c it is an ugly road but sorry that you are again let with no answers... I am not a doctor or a medical porfessional - just a mom that has seen 1st had the H** this disorder rains down on kids and their families. If it were me I would still get a second opinion... write to the other doctors - see what their opinions are... be sure to include all the details.... lab numbers - illness dates.... do I recall that your son responded to omnicef? how long was he on and when did he start raging/meltingdown again ... I wish you luck on your journey - trust your instincts - you and your family (along with everyone suffering from this illness!) are in my prayers that you find the answers and the doctors that can help you and your son -

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I am going to be the first to say "get a second opinion"....possibly Dr. K.

 

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...

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I am so sorry that this has thrown a wrench in your thoughts about your son. I know that you are looking for answers so hearing that it is not pandas can only be overwhelming and emotional. From your description it does sound pandas like though.....

 

I know that Dr. Latimer is very respected in the field, however, do you feel a second opinion would be warranted? Do you have a sense that she is right or do you still have instincts that it may be pandas? I'm sorry I can't remember what you have done so far and whether you had the Cunningham test done, I'll have to go back and read your other posts again. I hope the neurologist can give you some information. My dd7 had a seizure disorder and getting them under control did make a big difference in her outcome.

 

Good luck and hang in there.

 

Susan

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Sonebodys typing faster than I am..ok, so I'll be the "second" to tell you to get a second opinion!!!!

 

First HUGS! I am so sorry not that I want your son to have a definitive diagnosis of PANDAS b/c it is an ugly road but sorry that you are again let with no answers... I am not a doctor or a medical porfessional - just a mom that has seen 1st had the H** this disorder rains down on kids and their families. If it were me I would still get a second opinion... write to the other doctors - see what their opinions are... be sure to include all the details.... lab numbers - illness dates.... do I recall that your son responded to omnicef? how long was he on and when did he start raging/meltingdown again ... I wish you luck on your journey - trust your instincts - you and your family (along with everyone suffering from this illness!) are in my prayers that you find the answers and the doctors that can help you and your son -
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I'm so sorry! It's so hard when the doctor doesn't believe what your instincts are telling you. Did she tell you exactly what it is about your son's case that makes her suspect seizures? And why exactly she is ruling out PANDAS? Also, I'd like to say that, like autism, ADHD, etc, I don't think bipolar is a diagnosis in and of itself, I think it's a symptom of a physical problem. I know there are pharmaceuticals for it, so it's been categorized as a diagnosis, but I think some other PANDAS kids here have been diagnosed with bipolar, among other things, before being diagnosed and successfully treated for PANDAS. I think you should run the tests she's suggesting, but please don't leave the club yet! It could very well be both PANDAS and seizures. I also agree with getting a second opinion from one of the other PANDAS docs.

 

Hang in there!!

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I'll add a third, fourth or 15th suggestion for a second opinion!

 

Man, that's what makes this whole thing that much harder: that even the "experts" don't agree much of the time! Not on symptoms, on onset/periodic/timing, on treatment, etc. It just makes me want to lock them all up in one room for 48 hours and say, "FIGURE THIS THING OUT, AND THEN GET BACK TO US!" Dang! :lol:

 

"Kids with PANDAS don't seem to have good times . . . just bad and really bad"?! What the heck is THAT about?!?! Then what are all the experiences noted here about?!?! Maybe her experience is tainted by always seeing families in crisis who, because of costs, etc. step down off of coming in to see her when things improve?!

 

If there is improvement on abx, then I don't know how anyone can absolutely rule out PANDAS. I guess it makes sense to make sure that there's nothing else physically going on, but before you accept a purely "psychiatric" diagnosis (i.e., OCD and/or bi-polar), please, PLEASE get a second opinion! I'm speaking from experience here as my son was "diagnosed" as OCD for over 6 years, and then more recently with ADHD and other autism-spectrum disorders. Funny, abx seem to be taking each and every one of those "diagnoses" down for the count, slowly but surely!

 

Hang in there, don't give up, listen to your gut (I wish I had sooner), and stay in touch with us here! Sending hugs, positive energy, Light and all good things!

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Wornoutmom,

 

I'll second the previous posts, don't rule out PANDAS just yet. In fact, from looking over your old posts, it sounds like Dr. K had no doubt it was PANDAS. He recommended your son have IVIG as soon as possible. As much as I respect Dr. Latimer, she prescribed PEX for my son, I have to say that I feel that I would listen to Dr. K above all others at this point. He has treated the most patients, and he has a fantastic track record. I'd at least say make sure Dr. K has the full story, and if he still believes it is PANDAS then you have to weigh the risk of IVIG vs. the potential benefit. And the risk is proven to be extremely low with the benefit being a potential cure.

 

Alex

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Wow...really contradictory to what she told us. Get a second opinion...I don't know what is going on with her! Don't give up on PANDAS just yet..........

 

sorry wornoutmom, I know you are having a setback here, but you will find help for your child. where do you live, I may have some suggestions.

 

blessings

Faith

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Maybe she's just overworked and overwhelmed and us losing focus and good judgement. Unfortunatley it's the children who suffer...she (dr. Latimer) is going through some rough personal issues NOT that i'm making excuses...

 

 

Wow...really contradictory to what she told us. Get a second opinion...I don't know what is going on with her! Don't give up on PANDAS just yet..........

 

 

Maybe someone pisssed her off and ruined it for the rest of us..........

 

sorry wornoutmom, I know you are having a setback here, but you will find help for your child. where do you live, I may have some suggestions.

 

blessings

Faith

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I just wanted to wish you well, where ever this search may take you. I think second opinions are always wise - and I also think that exploring both paths might be wise as well. Any of the options will be difficult and sometimes heartbreaking. I'll just pray for you that you find the right answers for your son, and that I so admire you for your advocacy for your child. Seizures and Lyme are both really serious, and ruling them out as contributors is important. Sounds like you have a lot to process. Whatever you learn, you'll still be a part of this community & I hope you will still come here to share your story & to get support during your search. We'd love to hear what you do next, and many of us may learn from your decisions.

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