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appt. with Dr Latimer


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With the encouragement of you all, I have made an appointment to fly to DC to see Dr. Latimer. I was thrilled by how fast we can be seen (appt Feb 2nd) as I had expected to have to wait a few months. I am determined, but also terrified that it will go the way of my phone consult with Dr. Nicolaides. Since that consult when Dr N said she wasnt convinced this was PANDAS and she didn't hear the OCDin my description, just mood swings, I am wondering how I get across that these meltdowns are anxiety/obsession based. My son has been diagnosed with OCD since he was 7 by his psychiatrist. Since that time he has seen 3 different therapists, had 2 consults at UofM, and been hospitalized twice. Everyone of these professionals diagnosed OCD (along with Depression, Panic disorder with agoraphobia and GAD). I updated my psychiatrist via phone yesterday that my son has had daily anxiety meltdowns/rages for the past week along with school refusal and recurrent illness again. His response was that he wanted to do some lab work and try Depakote. In 7 years he has never once mentioned bi-polar disorder. I am guessing this is coming from the consult with Dr. N. Today I printed off Dr.T's protocol proposal and delivered it to our psychiatrist, along with a letter directing him to this website for any research paper he'd ever want to read, and firmly told him it was time for antibiotics. My husband and I are in agreement that we will not try Depakote, unless Dr L. assesses this is not PANDAS. Again, I am terrified. Does anyone have any recommendations about how to present all this history to Dr.L in the best, clearest way? I have written a 10 page history on my son with dates of medical tests, lab results and exacerbations, medications etc. I'm wondering if it's too much? For anyone who has seen her, what is she looking for as far a presenting history? Just an aside, but I have been giving ds 400 mg Ibuprofen 3X day for the past 6 days as he complains of headache/sore throat. Each meltdown has occurred around the time you would expect the Ibuprofen to have worn off (5-6hours) or not kicked in yet (seems to take around 45 minutes or so). Do any of these docs say anything definitive about Ibuprofen's effect or is this just because the pain is coming back he's feeling more vulnerable to the anxiety?

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I think you should not write out your son's symptoms in a paragraph form, I would just list the behaviors, i.e. tics and list them, OCD, and list what you've seen, Sensory, and what you've seen, Behavioral, and what you see, etc. I think you should just have your own notes in front of you about what is going on and and rattle off his history as best you can, or at least put it in the most brief and easiest outline. my feeling is that if you make it too complicated to read, she may not really delve into it.

 

When we were there, Dr. L. did not really look at my file that I brought, altho I had a copy for her and she put it in the file, but I am not sure she actually studied it. I don't think you need to 'convince' her too much, if that's what your worried about. but I would ask all the questions you have to and make sure you are clear on her answers. don't leave the office until you are satisfied of all your concerns. she can be a little hard to pin down afterwards.

 

Good luck,

Faith

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If you've been living this for awhile, the lines of what is OCD vs "just life" becomes blurred. This is a thread about examples of OCD as seen by parents on this forum. Perhaps read through it and see if anything sounds like your son.

 

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

 

As for the Ibuprofen, when it helped my son it took about 1/2 hour to kick in and started to wear off around the 5 hour mark. It's not a diagnostic test or anything. But if the behaviors go away or lessen with the IB then that shows that there may be some inflammation going on. Regular OCD and anxiety doesn't go away w/ Ibuprofen. Inflammation on the basal ganglia is what happen with PANDAS. If Ibuprofen works, I would share that info with the doctor.

 

If Ibuprofen does not work on a child, it does not dismiss PANDAS.

 

Did someone suggest bipolar? I got that "suggestion" too. My son isn't nor that he is better would anyone suggest that again.

 

One more thing, my son was border line agoraphobia. I believe it was OCD related.

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Just an aside, but I have been giving ds 400 mg Ibuprofen 3X day for the past 6 days as he complains of headache/sore throat. Each meltdown has occurred around the time you would expect the Ibuprofen to have worn off (5-6hours) or not kicked in yet (seems to take around 45 minutes or so). Do any of these docs say anything definitive about Ibuprofen's effect or is this just because the pain is coming back he's feeling more vulnerable to the anxiety?

 

Have you had your son tested for strep because of his sore throat?

 

Dr. L told us that there isn't really any evidence that ibuprofen helps with PANDAS sympmtoms, but that was in Sept...she may have heard enough anecdotal stories to now believe that it does--many parents report that it helps their child. From reading people's various posts, it seems that she is open-minded and evolving in her treatment/beliefs about PANDAS.

 

I don't think you need to convince her. Just bring your file, timeline as it pertains to strep infections and PANDAS symptoms, any lab results you may have. She asked us about family history too...anxiety, autoimmune diseases, Rhuematic Fever. In our case, she asked me to tell her the story, and that is what I did. It sounds to me that you have already gathered what you need. I also had a typed timeline, and she just had me go over that...she made her own notes on the computer.

 

Something that we brought, which she found interesting (and told us to hold onto) were examples of our daughter's daily journal in Kindergarten...there was a definate difference in the quality/quantity of her writing and drawing, and she felt that was helpful.

 

I know this is really scary, but Dr. L is very kind and caring, she will put you at ease...I think you have made the right choice to see her.

I applaud your courage in stopping any more psych meds until you have some answers in regards to PANDAS.

 

I hope this help.

 

~Karen

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we've not seen dr. L but something that has helped me recently with drs visit - especially the psychologist -- i've typed out in outline form what i want her to know and what i want to know from her. i've given her a copy - she's looked it over as we've talked and drawn out what she thinks is most important to focus on. she can get a good idea in 5 minutes why i'm there where previously i would have spent the whole time going off on tangents, stories, etc and not been able to get to everything.

 

it's a good idea too to actually check off with a pen your points on your paper so you're sure you've gotten to them.

 

good luck.

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my sons' recent strep throat culture was negative and ASO /AntiDnase titers were normal. The last positive strep we had was in June of 2007. 2 months later, following vaccines and severe g.i. pain, began his worst exacerbation since his initial diagnosis of strep and PANDAS in 2003. The ENT did a nasal swab this morning, so we may know what bacteria is hiding out in there (if any) by Monday. I really like the idea of an outline form. Guess I have a project for next week. Told my son about the trip to see Dr. L. I thought he would be anxious, but he is more excited to see the White House than anything else. Asked if he could stay for the whole week :) I'm going to see if I can dig up the change in his handwriting from his initial strep recovery as well. It happened almost "overnight" in 2nd grade about 6 months after his Clyndamyacin/T&A treatment. Thanks for all your suggestions!

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I think the idea of a time line vs a paragraph format is a great idea. When my son saw her she went through ours and asked questions about anything was not clear. I also took copies of handwriting before, during and after an exacerbation. Also, does your son do any sports? My son does karate. I had noticed a change in his balance during class one day. I went back to look at old videos of him at karate events that were taken before a strep infection last winter, during an active infection last spring and after 3 weeks of antibiotics this fall. There were obvious variations in his balance. I played the videos for her and she was able to point out the chorea movements that were affecting his balance. I knew his balance was off but did not see the underlying reason until she pointed it out in the videos.

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I think the idea of a time line vs a paragraph format is a great idea. When my son saw her she went through ours and asked questions about anything was not clear. I also took copies of handwriting before, during and after an exacerbation. Also, does your son do any sports? My son does karate. I had noticed a change in his balance during class one day. I went back to look at old videos of him at karate events that were taken before a strep infection last winter, during an active infection last spring and after 3 weeks of antibiotics this fall. There were obvious variations in his balance. I played the videos for her and she was able to point out the chorea movements that were affecting his balance. I knew his balance was off but did not see the underlying reason until she pointed it out in the videos.

 

 

WOW! I have heard the chorea movements are often difficult for the "lay person" to see unless they are very pronounced. Last night towards the end of his meltdown, by son asked me to hold his legs down because he couldn't stop them from moving. I held onto him for at least 10 minutes and his feet continued to twitch even as the rest of his body settled down. It just all seems so neurological...

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I think the idea of a time line vs a paragraph format is a great idea. When my son saw her she went through ours and asked questions about anything was not clear. I also took copies of handwriting before, during and after an exacerbation. Also, does your son do any sports? My son does karate. I had noticed a change in his balance during class one day. I went back to look at old videos of him at karate events that were taken before a strep infection last winter, during an active infection last spring and after 3 weeks of antibiotics this fall. There were obvious variations in his balance. I played the videos for her and she was able to point out the chorea movements that were affecting his balance. I knew his balance was off but did not see the underlying reason until she pointed it out in the videos.

 

 

WOW! I have heard the chorea movements are often difficult for the "lay person" to see unless they are very pronounced. Last night towards the end of his meltdown, by son asked me to hold his legs down because he couldn't stop them from moving. I held onto him for at least 10 minutes and his feet continued to twitch even as the rest of his body settled down. It just all seems so neurological...

 

 

 

WE have the same leg issue He hates it I know its neurological I found that when he runs on the treadmill or does any leg exercises he seems better I will have danny do jumping jacks.

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Yeah, this is how it all started for our son. After complaining of arthritis-like pain in his joints, he started having "seizure-like episodes." Don't know if it would really fit the classic description of chorea - his arms and legs jerked rapidly and uncontrollably for up to 90 minutes, on and off. At the ER, he would literally rattle the exam table violently.

 

I'm very grateful that those symptoms have not reappeared during exacerbations!

 

 

I think the idea of a time line vs a paragraph format is a great idea. When my son saw her she went through ours and asked questions about anything was not clear. I also took copies of handwriting before, during and after an exacerbation. Also, does your son do any sports? My son does karate. I had noticed a change in his balance during class one day. I went back to look at old videos of him at karate events that were taken before a strep infection last winter, during an active infection last spring and after 3 weeks of antibiotics this fall. There were obvious variations in his balance. I played the videos for her and she was able to point out the chorea movements that were affecting his balance. I knew his balance was off but did not see the underlying reason until she pointed it out in the videos.

 

 

WOW! I have heard the chorea movements are often difficult for the "lay person" to see unless they are very pronounced. Last night towards the end of his meltdown, by son asked me to hold his legs down because he couldn't stop them from moving. I held onto him for at least 10 minutes and his feet continued to twitch even as the rest of his body settled down. It just all seems so neurological...

 

 

 

WE have the same leg issue He hates it I know its neurological I found that when he runs on the treadmill or does any leg exercises he seems better I will have danny do jumping jacks.

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Yeah, this is how it all started for our son. After complaining of arthritis-like pain in his joints, he started having "seizure-like episodes." Don't know if it would really fit the classic description of chorea - his arms and legs jerked rapidly and uncontrollably for up to 90 minutes, on and off. At the ER, he would literally rattle the exam table violently.

 

I'm very grateful that those symptoms have not reappeared during exacerbations!

 

 

I think the idea of a time line vs a paragraph format is a great idea. When my son saw her she went through ours and asked questions about anything was not clear. I also took copies of handwriting before, during and after an exacerbation. Also, does your son do any sports? My son does karate. I had noticed a change in his balance during class one day. I went back to look at old videos of him at karate events that were taken before a strep infection last winter, during an active infection last spring and after 3 weeks of antibiotics this fall. There were obvious variations in his balance. I played the videos for her and she was able to point out the chorea movements that were affecting his balance. I knew his balance was off but did not see the underlying reason until she pointed it out in the videos.

 

 

WOW! I have heard the chorea movements are often difficult for the "lay person" to see unless they are very pronounced. Last night towards the end of his meltdown, by son asked me to hold his legs down because he couldn't stop them from moving. I held onto him for at least 10 minutes and his feet continued to twitch even as the rest of his body settled down. It just all seems so neurological...

 

 

 

WE have the same leg issue He hates it I know its neurological I found that when he runs on the treadmill or does any leg exercises he seems better I will have danny do jumping jacks.

 

Last night was the first time he ever asked be to hold his legs, but he always ends up thrashing his body around during a meltdown as well. Now that I think of it, I have also seen him where he is sitting down during a meltdown and his legs shake uncontrollably. Going back through medical records, there was point when he was younger I called the ped because he was complaining of all his joints/bones hurting for an unknown reason. Hmmm.....Knowing I am not the only one seeing this I will be sure to mention this to Dr. L when I see her!

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Last night was the first time he ever asked be to hold his legs, but he always ends up thrashing his body around during a meltdown as well. Now that I think of it, I have also seen him where he is sitting down during a meltdown and his legs shake uncontrollably. Going back through medical records, there was point when he was younger I called the ped because he was complaining of all his joints/bones hurting for an unknown reason. Hmmm.....Knowing I am not the only one seeing this I will be sure to mention this to Dr. L when I see her!

Do mention it to Dr. L, along with the joint pains (my son had those too), but her trained eye will pick it up... she saw more tics than I had ever recognized he had!

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I think that Dr. L will listen to you patiently! I would not worry about your presentation. From what I have read, it sounds pretty certain. I would put your energy into taking care of you so that you can make the trip. If it makes you feel better, just make a short list of symptoms.

Hang in there!

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