Do you believe in pandas

[pathfinder]

As I have mentioned on my previous post, My son16 had a major OCD, maniac episodes staring a month ago after he complained about his headaches and stomach aches along with feeling that something was stuck in his throat. He always had some rashes in his body one time or the other but this time he had a major break down of rashes on his chest.

( I can not forget to mention his cold sweat, no fever but sweating all the same)

He was dx with adhd with OCD tendency mood disorder at 8 yrs old after he developed some odd tics with very disturbing obsession followed by fever and illness ( strep throat as well but then again he had strep throats many times over with ear infection thru his young childhood) He was put on medications ( mainly ssri with concerta) and later added abilify when he turned 12. He would have been on these medication if they were working but my son was not motivated and slept through all his high school class ( so I felt) not to mention his attraction to dark things ( I confiscated his i-pod for listening some group called Insane Clown). I weened him from these medications starting last Nov and completely stopped them as of beginning of 2010. ( he was on 25 mg zoloft alone for 1 month only in Dec) I wrote journal for every day for last 5 months to document his diet, med, and behavior. He did fine for 2 months and he became very ill at the end of Feb with symptoms I described.

 

As his physical symptoms subsided he had mental breakdown. He walked around for hours in the evening or early in the morning cursing and screaming in a loud voice. He was going to revenge everyone who ever wronged him. He dented 2 doors, broke number of plates ( I placed his plate in the wrong way) his foods flew around in the kitchen(I prepared his food wrong) he spited on his father 3 times, he pushed me and gave me bruise in my arm. I could go on for hour describing how seriously wrong my son was but instead, I just tell you that we wished there was a law in California that under age kids could be hand over to government facilities with no questions asked ( they were mean to prevent child abuse in some states but I remember reading somewhere that teens were being dumped by their parents in state of Nebraska) or we had to find some placement for him. This went on for about 3 weeks.

 

About 8 days ago, out of nowhere, he stopped his OCD and rage. ( he still shows the sign but no more than usual) He became interested in life again instead of plotting revenge against a boy who neither name nor face he remembered. I could touch his books and things without his rage. He is not asking me the same questions over and over again ( maybe 3 or 4 times even 5 times but still within bearable range) He is reading Alice in the Wonderland Through looking-glass (complaining that it is most boring but still reading and caring his grade) Where am I going with this?

 

I never made connection with his various infections with his behavior because he was on medication and I looked for answers in medications. Whenever he had out break of his symptom, we thought his medication stopped working and therefore looked for different medication. By the time new medication started to work which is in 3 or 4 weeks, his symptom alway got better. So it really was not medication that was working but it was infection that was fading out of his system after it played its course in his body therefore improving his symptom ????????????? Does it explain how he became better after his major break down without medication this time around????? And if anybody is wondering, he is not bipolar. His issues have always been OCD and ADD (which I could live with) and as I mentioned he did not have ADD before he began his OCD with tic.

 

I still don't know if he has pandas but I know for sure that he had huge melt down after his illness which did come from strep ( according to blood test done last week ) and I am a little suspicious that virus might have something to do with his recent break down as well for doctor confirmed that his rashes were from viral not from allergy.( strep+ virus = perfect storm) I am also sure that this melt down did not come from discontinuation of medication as he had medication holidays( last one being just last summer) time to time without huge incidents like this.(in fact, it was never this bad) I will update my son's progress and yes with appt. with Dr. K

as soon as I can arrange as we have my son's necessary blood tests are ready. You mothers are my inspiration and I hope to give you back something in return by sharing my son's story as he is 16 yrs old and we had longer walk than most of you.

 

Thank you for reading

pathfinder from Diamond Bar

[memom]

As I have mentioned on my previous post, My son16 had a major OCD, maniac episodes staring a month ago after he complained about his headaches and stomach aches along with feeling that something was stuck in his throat. He always had some rashes in his body one time or the other but this time he had a major break down of rashes on his chest.

( I can not forget to mention his cold sweat, no fever but sweating all the same)

He was dx with adhd with OCD tendency mood disorder at 8 yrs old after he developed some odd tics with very disturbing obsession followed by fever and illness ( strep throat as well but then again he had strep throats many times over with ear infection thru his young childhood) He was put on medications ( mainly ssri with concerta) and later added abilify when he turned 12. He would have been on these medication if they were working but my son was not motivated and slept through all his high school class ( so I felt) not to mention his attraction to dark things ( I confiscated his i-pod for listening some group called Insane Clown). I weened him from these medications starting last Nov and completely stopped them as of beginning of 2010. ( he was on 25 mg zoloft alone for 1 month only in Dec) I wrote journal for every day for last 5 months to document his diet, med, and behavior. He did fine for 2 months and he became very ill at the end of Feb with symptoms I described.

 

As his physical symptoms subsided he had mental breakdown. He walked around for hours in the evening or early in the morning cursing and screaming in a loud voice. He was going to revenge everyone who ever wronged him. He dented 2 doors, broke number of plates ( I placed his plate in the wrong way) his foods flew around in the kitchen(I prepared his food wrong) he spited on his father 3 times, he pushed me and gave me bruise in my arm. I could go on for hour describing how seriously wrong my son was but instead, I just tell you that we wished there was a law in California that under age kids could be hand over to government facilities with no questions asked ( they were mean to prevent child abuse in some states but I remember reading somewhere that teens were being dumped by their parents in state of Nebraska) or we had to find some placement for him. This went on for about 3 weeks.

 

About 8 days ago, out of nowhere, he stopped his OCD and rage. ( he still shows the sign but no more than usual) He became interested in life again instead of plotting revenge against a boy who neither name nor face he remembered. I could touch his books and things without his rage. He is not asking me the same questions over and over again ( maybe 3 or 4 times even 5 times but still within bearable range) He is reading Alice in the Wonderland Through looking-glass (complaining that it is most boring but still reading and caring his grade) Where am I going with this?

 

I never made connection with his various infections with his behavior because he was on medication and I looked for answers in medications. Whenever he had out break of his symptom, we thought his medication stopped working and therefore looked for different medication. By the time new medication started to work which is in 3 or 4 weeks, his symptom alway got better. So it really was not medication that was working but it was infection that was fading out of his system after it played its course in his body therefore improving his symptom ????????????? Does it explain how he became better after his major break down without medication this time around????? And if anybody is wondering, he is not bipolar. His issues have always been OCD and ADD (which I could live with) and as I mentioned he did not have ADD before he began his OCD with tic.

 

I still don't know if he has pandas but I know for sure that he had huge melt down after his illness which did come from strep ( according to blood test done last week ) and I am a little suspicious that virus might have something to do with his recent break down as well for doctor confirmed that his rashes were from viral not from allergy.( strep+ virus = perfect storm) I am also sure that this melt down did not come from discontinuation of medication as he had medication holidays( last one being just last summer) time to time without huge incidents like this.(in fact, it was never this bad) I will update my son's progress and yes with appt. with Dr. K

as soon as I can arrange as we have my son's necessary blood tests are ready. You mothers are my inspiration and I hope to give you back something in return by sharing my son's story as he is 16 yrs old and we had longer walk than most of you.

 

Thank you for reading

pathfinder from Diamond Bar

[memom]

As I have mentioned on my previous post, My son16 had a major OCD, maniac episodes staring a month ago after he complained about his headaches and stomach aches along with feeling that something was stuck in his throat. He always had some rashes in his body one time or the other but this time he had a major break down of rashes on his chest.

( I can not forget to mention his cold sweat, no fever but sweating all the same)

He was dx with adhd with OCD tendency mood disorder at 8 yrs old after he developed some odd tics with very disturbing obsession followed by fever and illness ( strep throat as well but then again he had strep throats many times over with ear infection thru his young childhood) He was put on medications ( mainly ssri with concerta) and later added abilify when he turned 12. He would have been on these medication if they were working but my son was not motivated and slept through all his high school class ( so I felt) not to mention his attraction to dark things ( I confiscated his i-pod for listening some group called Insane Clown). I weened him from these medications starting last Nov and completely stopped them as of beginning of 2010. ( he was on 25 mg zoloft alone for 1 month only in Dec) I wrote journal for every day for last 5 months to document his diet, med, and behavior. He did fine for 2 months and he became very ill at the end of Feb with symptoms I described.

 

As his physical symptoms subsided he had mental breakdown. He walked around for hours in the evening or early in the morning cursing and screaming in a loud voice. He was going to revenge everyone who ever wronged him. He dented 2 doors, broke number of plates ( I placed his plate in the wrong way) his foods flew around in the kitchen(I prepared his food wrong) he spited on his father 3 times, he pushed me and gave me bruise in my arm. I could go on for hour describing how seriously wrong my son was but instead, I just tell you that we wished there was a law in California that under age kids could be hand over to government facilities with no questions asked ( they were mean to prevent child abuse in some states but I remember reading somewhere that teens were being dumped by their parents in state of Nebraska) or we had to find some placement for him. This went on for about 3 weeks.

 

About 8 days ago, out of nowhere, he stopped his OCD and rage. ( he still shows the sign but no more than usual) He became interested in life again instead of plotting revenge against a boy who neither name nor face he remembered. I could touch his books and things without his rage. He is not asking me the same questions over and over again ( maybe 3 or 4 times even 5 times but still within bearable range) He is reading Alice in the Wonderland Through looking-glass (complaining that it is most boring but still reading and caring his grade) Where am I going with this?

 

I never made connection with his various infections with his behavior because he was on medication and I looked for answers in medications. Whenever he had out break of his symptom, we thought his medication stopped working and therefore looked for different medication. By the time new medication started to work which is in 3 or 4 weeks, his symptom alway got better. So it really was not medication that was working but it was infection that was fading out of his system after it played its course in his body therefore improving his symptom ????????????? Does it explain how he became better after his major break down without medication this time around????? And if anybody is wondering, he is not bipolar. His issues have always been OCD and ADD (which I could live with) and as I mentioned he did not have ADD before he began his OCD with tic.

 

I still don't know if he has pandas but I know for sure that he had huge melt down after his illness which did come from strep ( according to blood test done last week ) and I am a little suspicious that virus might have something to do with his recent break down as well for doctor confirmed that his rashes were from viral not from allergy.( strep+ virus = perfect storm) I am also sure that this melt down did not come from discontinuation of medication as he had medication holidays( last one being just last summer) time to time without huge incidents like this.(in fact, it was never this bad) I will update my son's progress and yes with appt. with Dr. K

as soon as I can arrange as we have my son's necessary blood tests are ready. You mothers are my inspiration and I hope to give you back something in return by sharing my son's story as he is 16 yrs old and we had longer walk than most of you.

 

Thank you for reading

pathfinder from Diamond Bar

 

 

 

Your story sounds like a cross between my 17yo and 20yo. I would in a heartbeat treat this as possible Pandas and move forward trying to treat it as such. If you are right, you will likely start seeing improvement with high doses antibiotics and maybe a steroid burst. I hope you are getting the Cunningham blood work done now as it takes some time to return. In theory you don't need the strep titers if you have documented strep infections in past with onset or exacerbations in symptoms after. I hope you have a local physician who is willing to help you out for prescriptions. Where do you live?

 

Ellie

[thereishope]

This is exactly one of the reasons why a correct and early diagnosis is so important! Once they are on SSRI's and such, the lines become blurred as to what is helping and docs start assuming the meds don't work, change then meds, increase them, it becomes a vicious cycle.

 

 

Also, about the bipolar comment. Just so you know, some on here have been told that about their kids..."Maybe he's just bipolar". I was told that about my son. He's not. Doctors just start grasping at straws when they don't have answers.

 

 

I never made connection with his various infections with his behavior because he was on medication and I looked for answers in medications. Whenever he had out break of his symptom, we thought his medication stopped working and therefore looked for different medication. By the time new medication started to work which is in 3 or 4 weeks, his symptom alway got better. So it really was not medication that was working but it was infection that was fading out of his system after it played its course in his body therefore improving his symptom ????????????? Does it explain how he became better after his major break down without medication this time around????? And if anybody is wondering, he is not bipolar. His issues have always been OCD and ADD (which I could live with) and as I mentioned he did not have ADD before he began his OCD with tic.

[colleenrn]

Yes, it sounds likely to be PANDAS. Given his age and severity of symptoms, I would get him on Zithromax (azithromycin) 500mg (don't mess around with a lower dose) and see about adding prednisone. I would also give him Ibuprofen 600mg every 4-6 hours around the clock for the next several days.

Dr. Trifiletti may be of help to you. This is his new web site.

 

http://pandas.yuku.com/directory

 

Dr. Kovacevic (DR. K) has www.webpediatrics.com and he is another great resource.

 

 

 

Colleen

Edited March 31, 2010 by colleenrn

[kimballot]

Your post was very good for me to read. Thank you so much for sharing. I have been hearing that we should put my son on a low dose SSRI to smooth things over, but I don't want to do it without an accurate diagnosis. I am not against psych meds, but you are reminding me why it is so important to get a dx without having symptoms masked. We are in the process of diagnosis now - Consulted with Dr. T, awaiting the Cunningham kit and an appt. with Dr. B...

Find one of the docs on the list - Dr. T, Dr. B, Dr. K, Dr L... pick one and get a good eval. Do the Cunningham test. I will look for future posts!

[FallingApart]

Your description sounds very much like PANDAS.

 

A very simple thing that you can do is to give your child curcumin. THis is the natural antiinflammatory. We hare on to someave been using this now for about a month and I am really thinking we are onto something. It seems that my DD needs to be on constant steroids which is not a viable option. We tried curcumin instead and have been happy with this.

 

I've written a bit about it and th other changes we have made at www.pandasmom.com

 

Good luck. Let us know where you live so we can help you with doctors if you need it. This is one reason why I think the curcumin is good because you can get it on your own...

[pathfinder]

Thank you very much for your replies.

 

My son is going on a medication called "Clindamycin" as per his high ASO titer.

I am a little worried as he does have frequent diarrhea histories but we do what we can.

Thank you again