I need help!

[helpmyson]

I am new here. But I am desperate for help. My 10 year came home from school on Dec 8 a different kid. He cried for over an hour as he "confessed" numerous things. I was in shock to say the least. To make a long story short, my pediatrician told me to take him to a phychitrist. I did with doubts because I felt that that there had to be a medial link to this. Because 2 years go to the month, he had his tonsils and adnods out because of unexplained fevers which occured every month almost to the day. I realize that sounds wierd but it did happen. I took us 6 months or so to realize how exact each month his fevers were. Anyways finally got his tonsils out and the fever never came back. We were thrilled. Now this. This is horrible! He knows what he is thinking is crazy but yet it seems to real to him. I finally got his pediatrician to order blood test after reading up on PANDAS. But to my disappointment, they came back negative. So now what do I do. This is unbelievable that this could come on over night like this. Any advise would be appreciated. I am scared that every day that goes by without doing something is making this worse. Is that true? He has obsessions but no complusion- other then constant talking which may just be personality. Could this plain OCD? It is amazing how quickly lives can change. What can I do?

[momaine]

I am new here. But I am desperate for help. My 10 year came home from school on Dec 8 a different kid. He cried for over an hour as he "confessed" numerous things. I was in shock to say the least. To make a long story short, my pediatrician told me to take him to a phychitrist. I did with doubts because I felt that that there had to be a medial link to this. Because 2 years go to the month, he had his tonsils and adnods out because of unexplained fevers which occured every month almost to the day. I realize that sounds wierd but it did happen. I took us 6 months or so to realize how exact each month his fevers were. Anyways finally got his tonsils out and the fever never came back. We were thrilled. Now this. This is horrible! He knows what he is thinking is crazy but yet it seems to real to him. I finally got his pediatrician to order blood test after reading up on PANDAS. But to my disappointment, they came back negative. So now what do I do. This is unbelievable that this could come on over night like this. Any advise would be appreciated. I am scared that every day that goes by without doing something is making this worse. Is that true? He has obsessions but no complusion- other then constant talking which may just be personality. Could this plain OCD? It is amazing how quickly lives can change. What can I do?

 

Where are you located and maybe someone will know a doctor in your area that can help.

Angela

[peglem]

Did you have him swabbed for strep, or just checked titers? If he wasn't swabbed, I'd get that done ASAP. Many of our children test positive when swabbed but never get high titers. Can you get the doctor to do a month long trial of full strength abx? If he shows improvement in the psychiatric symptoms on abx, that would indicate an infectious agent causing the problem. You might try pleading that the abx is less dangerous than psych meds and you'd like to try that first.

[Megs_Mom]

Regular OCD does not show up overnight. It is slow & gradual in build-up. It sounds like classic PANDAS to me. Over 37% of kids don't run positive titers. Ask your ped to try a few weeks of antibiotics - other parents here will suggest specific doses & types of ABX. We have done very well with Azithromyacin. Don't expect an immediate cure - it takes a month for some children here.

 

The compulsion, by the way, is to seek "reassurance" or to "confess". Compusions are not always physical, but can be mental or verbal. Confession OCD is called Scrupulosity. It is pretty common in OCD. Sounds like you have a clear medical cause. If your pediatrician is not receptive, there are doctors that you can travel to, who are very experienced in treating PANDAS - you want quick antibiotics - so if you get a lot of discouragement from your team of docs - call one of the experts on the permanent threads at the top of the PANDAS page. There is also great info there to take to your doctors.

 

Good luck - you are already way ahead of us by recognizing this during the first onset. Stay strong.

[thereishope]

Welcome.

 

I agree if he did not have athroat swab, to get that done. If the rapid is negative, make sure it is cultured.

 

In reference to the blood test, on the PANDAS fact sheet it states...

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

 

"A throat culture for Group A Beta-Hemolytic streptococcus (GABHS) at time of exacerbation onset is recommended to diagnose a pharyngeal streptococcal infection [swedo2004]. If the culture is negative, a blood test may be able to test for streptococcal exotoxins. A common blood test is Anti-Streptolycin O. While this test can confirm a previous strep infection, it cannot exclude a prior infection or a diagnosis of PANDAS. This test is affected by many factors and in one study over 46% of children did not have a rising ASO titer despite having colonized strep [shet2003]. "

 

 

 

Also, there are some kids that do mhave the more intrusive thoughts asscoiated with OCD. Not all OCD is excessive hand washing and fear of dirt and germs. if interested, here is anothe link to a list of OCD symptoms many here on teh forum have witnessed. Confessing is one of them...

 

 

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

 

Where do you live? Perhaps we cannot suggest a doctor to you.

 

Finally, has he had odd behaviors before, spefically coinciding with the fevers? Would you say this is his first "episode"?

[helpmyson]

So we should get a swab? I thought that the blood test were more conclusive than a swab or culture. The thing is when he had his fevers before he rarely had strep- I have to get his records for sure but maybe once or twice- so I just have my doubts that the swab or culture will come back positive. My pediatrian had said that if his blood work comes back negative then it is not "standard of care" to put him on antibiotics.

 

He did not have any unusual behavior when he had his fevers, but saying that- he is VERY talkative, active- never diagnosed with ADHD but I guess I wouldn't be surprised. But now it is ridiculous! You can tell he is purposefully keeping himself active, talking, moving, whatever.

 

I really want to try antibiotics. What do we have to loose. I can not even get myself to think that this will be a lifetime thing. It can not be. It just can't.

 

Should we have a full phycological workup to see if anything else is going on do we try to find someone who thinks it could be PANDAS? I just pray that I know when to keep searching for answers and when to say this stinks but this is life.

[Charlotte Mom]

I am new here. But I am desperate for help. My 10 year came home from school on Dec 8 a different kid. He cried for over an hour as he "confessed" numerous things. I was in shock to say the least. To make a long story short, my pediatrician told me to take him to a phychitrist. I did with doubts because I felt that that there had to be a medial link to this. Because 2 years go to the month, he had his tonsils and adnods out because of unexplained fevers which occured every month almost to the day. I realize that sounds wierd but it did happen. I took us 6 months or so to realize how exact each month his fevers were. Anyways finally got his tonsils out and the fever never came back. We were thrilled. Now this. This is horrible! He knows what he is thinking is crazy but yet it seems to real to him. I finally got his pediatrician to order blood test after reading up on PANDAS. But to my disappointment, they came back negative. So now what do I do. This is unbelievable that this could come on over night like this. Any advise would be appreciated. I am scared that every day that goes by without doing something is making this worse. Is that true? He has obsessions but no complusion- other then constant talking which may just be personality. Could this plain OCD? It is amazing how quickly lives can change. What can I do?

 

My advice is to go immediately to webpediatrics.com and contact Dr K. Set up a phone consultation. Let him lead you through this in working with you and your local physician. If your local physician won't work with Dr K, fire him and get another. Trust me, we wasted a lot of time going down bunny trails. Dr K will be able to advise you quickly. We finally found him (through this forum) last November. My daughter has already begun her treatment. She has been sick a lot longer than your son. The sooner you talk to him the better!

[thereishope]

There is research going on that is the closest things we have to a diagnostic test. You can contact a Dr Cuningham and have a blood sample sent to her, she'll run tests and get back to levels that indicate whethe or not he has probable PANDAS. But, fyi, she did lose her funding and last I heard she will still run teh test but it cost $400.

 

There are a few PANDAS experts out there. Dr K is in IL. Dr T is in NJ. Dr Latimer is in MD. Those are ones who will look beyond the numbers and see the full picture that is your child. They can diagnose, provide treatment,e tc. Are you able/willing to travel?

 

As for the psychological testing, that is up to you. Many psychologists still don't fully understand PANDAS and some I called never heard of it. They may end up labelling him with other disorders, when in fact those problems can all be the result of PANDAS. Honestly, the psych eval can be put on the back burner for now and concentrate on antibiotics and gettting things under control befroe they spiral more.

[matis_mom]

I am new here. But I am desperate for help. My 10 year came home from school on Dec 8 a different kid. He cried for over an hour as he "confessed" numerous things. I was in shock to say the least. To make a long story short, my pediatrician told me to take him to a phychitrist. I did with doubts because I felt that that there had to be a medial link to this. Because 2 years go to the month, he had his tonsils and adnods out because of unexplained fevers which occured every month almost to the day. I realize that sounds wierd but it did happen. I took us 6 months or so to realize how exact each month his fevers were. Anyways finally got his tonsils out and the fever never came back. We were thrilled. Now this. This is horrible! He knows what he is thinking is crazy but yet it seems to real to him. I finally got his pediatrician to order blood test after reading up on PANDAS. But to my disappointment, they came back negative. So now what do I do. This is unbelievable that this could come on over night like this. Any advise would be appreciated. I am scared that every day that goes by without doing something is making this worse. Is that true? He has obsessions but no complusion- other then constant talking which may just be personality. Could this plain OCD? It is amazing how quickly lives can change. What can I do?

Helpmyson,

My son also has the "scrupulosity" when he is going through an exacerbation. I think you definitely need to keep looking into PANDAS. It is interesting that your son had the fevers a month apart... I am dealing with a younger daughter now that seems to get some kind of strep-related problem at the beginning of each month, I wonder what that's all about.

About your son's current problems, maybe he was exposed to strep at school and is reacting to it without being "infected" Or, it could be that you took him in too early, I would have him tested again. Anyway, even if the swab is negative and the titers are low, he could still have it, strep can hide in different places and it's hard to catch sometimes. My son's was discovered through a stool test (he had a lot of GI issues).

I would say start keeping a journal of his symptoms and behaviors (along with anything else that's going on like someone sick in the house or reports of strep at school)

Maybe you could find a sympathetic pediatrician who will give you a short course of antibiotics just to see if it makes any difference.

But if that doesn't work, you might have to see a PANDAS specialist, even if it's just through a phone consultation.

[Charlotte Mom]

There is research going on that is the closest things we have to a diagnostic test. You can contact a Dr Cuningham and have a blood sample sent to her, she'll run tests and get back to levels that indicate whethe or not he has probable PANDAS. But, fyi, she did lose her funding and last I heard she will still run teh test but it cost $400.

 

There are a few PANDAS experts out there. Dr K is in IL. Dr T is in NJ. Dr Latimer is in MD. Those are ones who will look beyond the numbers and see the full picture that is your child. They can diagnose, provide treatment,e tc. Are you able/willing to travel?

 

As for the psychological testing, that is up to you. Many psychologists still don't fully understand PANDAS and some I called never heard of it. They may end up labelling him with other disorders, when in fact those problems can all be the result of PANDAS. Honestly, the psych eval can be put on the back burner for now and concentrate on antibiotics and gettting things under control befroe they spiral more.

 

I completely agree with Vickie - I would definitely back-burner the psych testing until you get the PANDAS answered. The psych testing opens up another whole path that (in my opinion) you don't want to go down UNTIL PANDAS is RULED OUT. Below is a post I did on OCD parenting - just an example for you of the significant amount of pain and suffering that can occur if you don't stay the course to rule out PANDAS - I sure wish I had. FYI, in the post below, I was responding to a discussion about whether or not a sudden onset was necessary to diagnose PANDAS. I think sudden onsets are more apparent in older children and often missed or seen as developmental behavioral (psychologial) issues vs. sudden uncharacteristic behavior in younger children. I hope this helps give you confidence/reassurance as you fight to get the medical community to get to the root of your son's issue versus pigeon-hole him down the psychological path.

 

It's my opinion that the sudden change is even less apparent in younger children - and more likely to be misunderstood as a behavioral issue. Parents/Doctors/ Friends tend to think..."oh this must be terrible threes instead of terrible twos; it's because we had another child; it's because I am working; it's because daddy is traveling; it's because the teacher is being too rough on her; it's because the other kids are being mean to her; it's because she's spoiled... we let her get away with too much… we need to be tougher on her.... "

 

For us, we just learned (after 8 years) that our daughter's PANDAS began when she was three years old. She is 11 now. How I wish I could have back all those years where we felt like we were failing as parents and she felt like we thought she was misbehaving/ a bad girl. We did it all: every kind of reward system you could dream up, timeouts, taking away/earning back toys, Dr Greene's The Explosive Child basket approach. Oh how I rue the day we stumbled upon Dr Rosmond on TV talking about how it is necessary to spank children - we tried that for a couple of weeks, and it traumatized all of us - me and my husband still feel guilty about that. Now we understand how she simply could not help it. Anyone who has had a sweet child who seemed to uncharacteristicall y change over night or even over months - tread lightly; look for autoimmune symptoms before just deciding they need a stricter approach. Sometimes we just don't see it. In the midst of everything else we tend to excuse it as stress or this or that - - especially when they are younger. If you have read Saving Sammy, consider some of the things he did...while an extraordinary contrast in behavior for a adolescent boy - would it seem so extraordinary in a three year old to spin in circles, hop up the walk, need to go in and out the same door, not want to sleep in their room, want to wear the same clothes, not want to bathe? In younger children, I believe you need to:

 

Look for tantrums that seem to be over nothing or situations that are just illogical - why on earth would this upset her so much. Look for a child who was totally dry and then suddenly had nighttime wetness again. Uncharacteristic aggressive behavior and severe shame and remorse following the aggressive behavior; extreme fear that you will be mad at them or think they are bad; inability to sit still or focus, and joint pains (we just dismissed as growing pains). Our daughter had all of these. Another huge sign to watch for is if they know what they are doing is strange, but they just can't not do it.

 

Either our daughter couldn't communicate this to us until she was six… or we weren't listening to her – we were probably too busy listening to all the other people who wanted to tell us it was behavioral. One day, when she was six, her sister had messed up something she was playing with and she was hysterical. Exhausted from her meltdown, she collapsed in my arms and told me through her tears… "Mommy, I know this shouldn't upset me this much, and I don't know why it does, but I just can't help it." Finally, I got it and her doctor got it: OCD (not PANDAS). Unfortunately, this just saddled her with another whole realm of unrealistic expectations to deal with. She was supposed to take SSRIs and do ERP and she would get better. Instead we had five years of failed "standard OCD treatments" that simply didn't work and made her worse. All the while the doctors told her - you are not trying hard enough - and told us (her parents) you have to really make her want it... you need a better reward system… you are not being consistent. This just further reinforced her feeling that she was failing, and our feeling that we were too. Thank God we finally have a clear answer now, so she and we can understand how to help her. Unfortunately, all that wasted time just makes her recovery that much more of an uphill battle. It breaks my heart to think of all those lost years - how painful and lonely that must have been for her….if I only knew then what I know now.

[helpmyson]

Thank you to all who responded. It helps to talk to people to seem like they understand. It is so strange- these symptoms that sometimes I think that I am loosing it. This forum has been very helpful. Thank you.

[matis_mom]

Thank you to all who responded. It helps to talk to people to seem like they understand. It is so strange- these symptoms that sometimes I think that I am loosing it. This forum has been very helpful. Thank you.

It is interesting how one is a lot more able to deal with the behaviors when you see that it is not your child beeing strong-willed, or you being a "bad parent"... it's just that their little brains are swollen and they really can't help themselves. Hang in there and keep asking any questions you may have. Hope you find a good doctor to help you work through this soon!

 

Isabel

[LaraM]

Hi! I am new too. My five year old son literally went to sleep one child and woke up another child. He started with these incredibly loooongg crying jags and just had to tell me these "bad, bad things" he had done (one of them was brushing up against a wall as he walked past it). About a week later the compulsions started (waking in the middle of the night to wash his hands, pacing), nightmares started, and just incredible worry and sadness constantly. His doctor reluctantly put him on antibiotics over Christmas when it turned out my older son had strep throat. My five year old tested negative for strep and his blood work came back within the normal range. His behaviors improved dramatically while on the antibiotic, but his doctor wouldn't put him back on the antibiotic because his blood work was normal. I ended up contacting Dr. Tanya Murphy in St. Petersburg, FL (as we live about 2 1/2 hrs. from there). She placed my son in her Cedfinir -- Omnicef I think (sp) vs. Placebo study. He goes next week for his first visit. I am hopeful he'll get the antibiotic, not the placebo. Right now his behaviors are in an upswing and low and behold he was exposed to strep last week. Ugh. You are not alone!! I am so thankful for this site because I feel very isolated. It helps to see others know exactly what you are going through. Hang in there!!!

[helpmyson]

Hi! I am new too. My five year old son literally went to sleep one child and woke up another child. He started with these incredibly loooongg crying jags and just had to tell me these "bad, bad things" he had done (one of them was brushing up against a wall as he walked past it). About a week later the compulsions started (waking in the middle of the night to wash his hands, pacing), nightmares started, and just incredible worry and sadness constantly. His doctor reluctantly put him on antibiotics over Christmas when it turned out my older son had strep throat. My five year old tested negative for strep and his blood work came back within the normal range. His behaviors improved dramatically while on the antibiotic, but his doctor wouldn't put him back on the antibiotic because his blood work was normal. I ended up contacting Dr. Tanya Murphy in St. Petersburg, FL (as we live about 2 1/2 hrs. from there). She placed my son in her Cedfinir -- Omnicef I think (sp) vs. Placebo study. He goes next week for his first visit. I am hopeful he'll get the antibiotic, not the placebo. Right now his behaviors are in an upswing and low and behold he was exposed to strep last week. Ugh. You are not alone!! I am so thankful for this site because I feel very isolated. It helps to see others know exactly what you are going through. Hang in there!!!

 

 

It does help to know that we are not alone. My son is doing "decent" right now. Not horrible but still not himself. We have a phone consult scheduled with Dr. K in Chicago next week. I am soo praying that we get some answers and hope from him. But in the meantime really appreciating the "good days" that we have. I know now how I truely took for granted having healthy kids. I hope for the best for your son as well. You are very fortunate that your doctor would put him on antibiotics. Our pediatrian would not do that. I agree - this site is wonderful. A ton of info to learn from other peoples experiences. Thanks!

[EAMom]

I am new here. But I am desperate for help. My 10 year came home from school on Dec 8 a different kid.

 

Classic PANDAS.

 

So we should get a swab? I thought that the blood test were more conclusive than a swab or culture.

Definitely culture your son as well as family members (to check for carriers). A good percentage of PANDAS kids will have negative strep titers (I know Beth Maloney believes otherwise) and ASO/anti-dnase b are not a "test for PANDAS". My dd had negative titers 2mo. after FEVER/onset of behavior changes but her throat culture was positive, as was a perianal culture. Her younger sister was also positive on the rapid. In other words, she had negative titers despite PANDAS severe enough to require hospitalization and positive cultures (which had likely been positive for 2mo.). Some kids just don't make the titers.

 

IMO it is also CRITICAL to check family members for strep (definitely cultures, possibly blood tests later if those are neg). If you have an untreated carrier in the family your son will NOT get 100% better despite appropriate treatment (abs, IVIG, etc.).

 

 

The thing is when he had his fevers before he rarely had strep- I have to get his records for sure but maybe once or twice- so I just have my doubts that the swab or culture will come back positive.

 

It's still worthwhile doing the throat cultures....something to do while waiting for your Dr. K. phone consult. If they are negative, then it's still possible strep is hiding out elsewhere (sinuses etc). If it's positive you have some "evidence" for your ped, another piece of the puzzle, and he should be obligated to start you on abs.

 

My pediatrian had said that if his blood work comes back negative then it is not "standard of care" to put him on antibiotics.

ASO/anti-dnase b is not a blood test for PANDAS. (Anyway, how can he say this without even doing cultures??? Banging my head against the wall.) In Dr. K.'s radio-interview he said these titers should be give 5-10% weight (ie not a lot of weight) in diagnosis. History and symptoms are what is most important.

 

He did not have any unusual behavior when he had his fevers,

 

A lot of PANDAS kids don't have much in the way of symptoms while they have a fever...it is afterwards (or sometimes a bit b-4) that symtpoms show up.

 

 

I really want to try antibiotics. What do we have to loose. I can not even get myself to think that this will be a lifetime thing. It can not be. It just can't.

You could try advil while you are waiting for the cultures/Dr. K. consult.

 

Should we have a full phycological workup to see if anything else is going on do we try to find someone who thinks it could be PANDAS? I just pray that I know when to keep searching for answers and when to say this stinks but this is life.

 

Consult with Dr. K.