Is this PANDA's

[ARmom]

Hi,

 

I am new here to this forum but would like some advice from those in the know, about whether my 5 year old son is suffering from PANDA's.

 

In September last year my son woke up one day and was very angry he was raging at his new baby brother and was totally out of character, I remember saying to him that he is a changed person and I wanted my old son back. A few days later he started to jerk his head intermittent at first but then within 2 weeks it progressed to every second and then started to change in nature to head shakes and then body like shivers. He also did the odd leg jerk and hand jerk but these where very intermittent. He was referred to a neurologist who ordered an eeg. This came back abnormal and they promptly started him on sodium valproate, they did this on the premise of his body movements and abnormal eeg (even though he had no loss of consciousness at all). I also got a second opinion from another neurologist who said it was not epilepsy because they were too frequent and they were not stopping him from going about his day to day business. He wanted to do an 8hour veeg just to confirm this.

 

However, when my son was eventually on his maximum dose everything got better, his behavior, personality and he had no tics at all (therefore we did not pursue the veeg). We were all convinced that it was epilepsy and the medication was controlling it. Well approx 4 -6 weeks ago, I had a very bad throat infection that eventually went away with antibiotics, I am positive it was strep as I have had this in the past and suffer from tonsillitus now and again. On saturday my son started ticcing again with the head jerks and they were very frequent, practically every second. Apart from this he is exhibiting other symptoms that may well have been present before, but because the tics were so severe and with the epilepsy thing they were probably my least concern.

 

These symptoms are the constant need to be by my side, he will not play in his room alone, he keeps asking if I love him all the time. He has frequent temper tantrums and crying fits, then the next minute he will be fine. Sometimes he says he doesn't love his family and hates everyone and then 10 minutes later he loves everyone. He prays quite regular and asks god to protect everyone and that he will protect god!!. He urinates frequently even though he barely drinks anything all day. His food intake has gone down, and he said he wants to be a baby again, so won't eat sometimes so that he doesn't grow??? He has started to complain about pains underneath his knees and gets this almost daily. He does get an itchy bottom quite regularly and this has been happening even while the symptoms went away. Oh yeah and the handwriting issue, when he writes it is lower case and then upper case in the same word, then he runs out of space and squashes the letters at the end and carries on either above or below at the right margin not the left margin.

 

All this has come as a bit of a shock, because it has been 3 months with no symptoms and then all of a sudden it is back. Our clinical psychologist, however has said this is also typical of tic disorders as they will wax and wane

 

I have been reading most of the posts on this forum and the tourettes forum and a lot more of the posts here seem to relate more. The strange thing is today my husband was diagnosed with strep throat and has been given a course of penicillan.

 

My questions are basically

 

1) Could this potentially be PANDAS

2) Could I have passed the strep onto my son, (he did not really exhibit any symptoms) and then he passed it onto my husband

 

My son has been referred to the child mental health services and they are going to do a school follow up and mentioned that it might possibly be tourettes but they need to investigate further. I will mention PANDAS to them but am not hopeful they will take it seriously, my doctor has never even heard of it.

 

I would also like to know how long a typical episode of PANDAS lasts from your own personal experiences, and when do the symptoms start to wane during a typical episode. Also, from what I have read, whether treated or not treated, do they ever grow out of this condition?

 

My doctor will not even entertain the idea of doing swabs or culture testing because she has not heard of it and says it is upto the child mental health people to sort it out, she just wanted us out of the surgery asap to see her next patient! So I am pretty much on my own

 

Thanks

[amy s]

Hi,

 

I am new here to this forum but would like some advice from those in the know, about whether my 5 year old son is suffering from PANDA's.

 

In September last year my son woke up one day and was very angry he was raging at his new baby brother and was totally out of character, I remember saying to him that he is a changed person and I wanted my old son back. A few days later he started to jerk his head intermittent at first but then within 2 weeks it progressed to every second and then started to change in nature to head shakes and then body like shivers. He also did the odd leg jerk and hand jerk but these where very intermittent. He was referred to a neurologist who ordered an eeg. This came back abnormal and they promptly started him on sodium valproate, they did this on the premise of his body movements and abnormal eeg (even though he had no loss of consciousness at all). I also got a second opinion from another neurologist who said it was not epilepsy because they were too frequent and they were not stopping him from going about his day to day business. He wanted to do an 8hour veeg just to confirm this.

 

However, when my son was eventually on his maximum dose everything got better, his behavior, personality and he had no tics at all (therefore we did not pursue the veeg). We were all convinced that it was epilepsy and the medication was controlling it. Well approx 4 -6 weeks ago, I had a very bad throat infection that eventually went away with antibiotics, I am positive it was strep as I have had this in the past and suffer from tonsillitus now and again. On saturday my son started ticcing again with the head jerks and they were very frequent, practically every second. Apart from this he is exhibiting other symptoms that may well have been present before, but because the tics were so severe and with the epilepsy thing they were probably my least concern.

 

These symptoms are the constant need to be by my side, he will not play in his room alone, he keeps asking if I love him all the time. He has frequent temper tantrums and crying fits, then the next minute he will be fine. Sometimes he says he doesn't love his family and hates everyone and then 10 minutes later he loves everyone. He prays quite regular and asks god to protect everyone and that he will protect god!!. He urinates frequently even though he barely drinks anything all day. His food intake has gone down, and he said he wants to be a baby again, so won't eat sometimes so that he doesn't grow??? He has started to complain about pains underneath his knees and gets this almost daily. He does get an itchy bottom quite regularly and this has been happening even while the symptoms went away. Oh yeah and the handwriting issue, when he writes it is lower case and then upper case in the same word, then he runs out of space and squashes the letters at the end and carries on either above or below at the right margin not the left margin.

 

All this has come as a bit of a shock, because it has been 3 months with no symptoms and then all of a sudden it is back. Our clinical psychologist, however has said this is also typical of tic disorders as they will wax and wane

 

I have been reading most of the posts on this forum and the tourettes forum and a lot more of the posts here seem to relate more. The strange thing is today my husband was diagnosed with strep throat and has been given a course of penicillan.

 

My questions are basically

 

1) Could this potentially be PANDAS

2) Could I have passed the strep onto my son, (he did not really exhibit any symptoms) and then he passed it onto my husband

 

My son has been referred to the child mental health services and they are going to do a school follow up and mentioned that it might possibly be tourettes but they need to investigate further. I will mention PANDAS to them but am not hopeful they will take it seriously, my doctor has never even heard of it.

 

I would also like to know how long a typical episode of PANDAS lasts from your own personal experiences, and when do the symptoms start to wane during a typical episode. Also, from what I have read, whether treated or not treated, do they ever grow out of this condition?

 

My doctor will not even entertain the idea of doing swabs or culture testing because she has not heard of it and says it is upto the child mental health people to sort it out, she just wanted us out of the surgery asap to see her next patient! So I am pretty much on my own

 

Thanks

 

 

Yes it does sound like it could be pandas, if you ask me. I don't have time to respond much right now but my best advice is find a physician willing to at least check for strep. He could have strep right now and won't be treated to get rid of it! Much less it could be making the pandas symptoms worse. Do tons of research on your own including reading everything you can find on this board and other places on the net. Also, a good web site is www.webpediatrics.com

Good luck to your family.

[colleenrn]

ARMom,

Yes, it definitely sounds to me like PANDAS. He needs to have a throat culture done asap and antibiotics if positive. That is terrible that your physician will not do a simple swab- in my opinion that is the epitome of medical negligence. I would insist they do a throat culture and be very, very assertive about it. If they still refuse, I would find another physician asap who will at least do a culture. If they do a rapid culture (Results in 10 minutes) and it is negative, make sure they do a longer culture (48-72 hrs.).

Yes, anyone in your family could have passed strep to each other. It is not a coincidence that your husband has strep right now. Given that your husband tested positive for strep, your physician should be willing to test ANYONE in the house as strep is very contagious. A lot of PANDAS children do NOT show ANY physical symptoims of strep- just behavioral, so that is not unusual.

All of the symptoms you desribed fit with PANDAS- the clinginess, frequent urination, rages, all of it.

 

Check ou the webpediatrics site in the previous post.

Good luck.

Colleen

[momtotaylor]

ARMom,

 

It does sound like it could be PANDAS. It is frustrating that your son's doctor will not take you seriously or even culture him. If you cannot convince your doctor to do it, I would take him to the ER. We ended up there the first day that our daughter exhibited these behaviors. They did a culture there.

 

Hang in there. You are doing the right thing. Doing your own research and advocating for your child is what you need to do. Many doctors don't believe in the condition. It is a constant battle for us too. Don't second guess yourself.

 

Yes, you could have passed strep onto your son without him exhibiting the classic strep symptoms. My daughter has been through everthing you are describing, the tics, the clinginess, the rages and frequent urination. I think you are on the right track.

[dcmom]

ARMom,

 

It sounds a lot like pandas. My dd did not get any tics, but she showed the other behavoirs your son has. She had rages, urinary issues, separation anxiety etc. She is normally a sweet and very loving child. During her worst days she would one minute rage and say she hated me, and then crumble into tears and say she loved me too much. I can't imagine the guilt she must feel- saying anything mean is so out of character for her.

 

My doctor was not much help either, luckily though she did the culture when I asked. My daughter had NO strep symptoms- the quick test was negative, but the 48 hour culture was positive. I have read in a clinical paper that many kids with pandas present without the typical symptoms. Maybe it is a certain strain of strep that is most likely to trigger pandas.

 

All I can say is try another pediatrician, and lie. Say your child has been complaining of a sore throat and had a fever the night before, or try a CVS minute clinic or other quick clinic.

 

Let us know where you live, and maybe someone could recommend a doctor. I have found just asking the receptionist if the dr treats pandas patients gives you your answer (they either say yes, or treats what?). I know many haven't, but I have had good luck with pediatric neurologists. Antibiotics asap will be the key if this is pandas.

[EAMom]

Welcome ARmom,

 

Your son sounds like a text book case of PANDAS.

 

I would find a different pediatrician if this one isn't even willing to do a simple throat culture on your son. Your son could be culture positive right now. Many PANDAS kids will have no symptoms other than behavior changes/tics when they get strep. Do a 48-72 hour culture if the rapid is neg.

 

I would also recommend getting throat cultures on everyone else in the family (to check for carriers). Re-culture your self and your husband to make sure you have cleared. Strep in household members can be a real problem with PANDAS kids. Don't forget to culture the baby (even if they say babies don't get strep!)

 

re: whether kids outgrow PANDAS...I don't know of any good studies. Kids become less suspectable to strep as they grow up (although, even adults can get it!). There are a couple of moms on this forum who think they had PANDAS as children...symptoms improved with pregnancy. I've heard from the grapevine (3rd hand) that Sue Swedo (NIMH) said these kids do well long tem if treated (unfortunately, she didn't specify if treatment was IVIG or prophylactic antibiotics or what!).

 

Let us know were you live...maybe someone can rec. a good doc.

 

PS....this is a good handout on PANDAS to share with school personel http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

[Diana]

Hi,

 

I am new here to this forum but would like some advice from those in the know, about whether my 5 year old son is suffering from PANDA's.

 

In September last year my son woke up one day and was very angry he was raging at his new baby brother and was totally out of character, I remember saying to him that he is a changed person and I wanted my old son back. A few days later he started to jerk his head intermittent at first but then within 2 weeks it progressed to every second and then started to change in nature to head shakes and then body like shivers. He also did the odd leg jerk and hand jerk but these where very intermittent. He was referred to a neurologist who ordered an eeg. This came back abnormal and they promptly started him on sodium valproate, they did this on the premise of his body movements and abnormal eeg (even though he had no loss of consciousness at all). I also got a second opinion from another neurologist who said it was not epilepsy because they were too frequent and they were not stopping him from going about his day to day business. He wanted to do an 8hour veeg just to confirm this.

 

However, when my son was eventually on his maximum dose everything got better, his behavior, personality and he had no tics at all (therefore we did not pursue the veeg). We were all convinced that it was epilepsy and the medication was controlling it. Well approx 4 -6 weeks ago, I had a very bad throat infection that eventually went away with antibiotics, I am positive it was strep as I have had this in the past and suffer from tonsillitus now and again. On saturday my son started ticcing again with the head jerks and they were very frequent, practically every second. Apart from this he is exhibiting other symptoms that may well have been present before, but because the tics were so severe and with the epilepsy thing they were probably my least concern.

 

These symptoms are the constant need to be by my side, he will not play in his room alone, he keeps asking if I love him all the time. He has frequent temper tantrums and crying fits, then the next minute he will be fine. Sometimes he says he doesn't love his family and hates everyone and then 10 minutes later he loves everyone. He prays quite regular and asks god to protect everyone and that he will protect god!!. He urinates frequently even though he barely drinks anything all day. His food intake has gone down, and he said he wants to be a baby again, so won't eat sometimes so that he doesn't grow??? He has started to complain about pains underneath his knees and gets this almost daily. He does get an itchy bottom quite regularly and this has been happening even while the symptoms went away. Oh yeah and the handwriting issue, when he writes it is lower case and then upper case in the same word, then he runs out of space and squashes the letters at the end and carries on either above or below at the right margin not the left margin.

 

All this has come as a bit of a shock, because it has been 3 months with no symptoms and then all of a sudden it is back. Our clinical psychologist, however has said this is also typical of tic disorders as they will wax and wane

 

I have been reading most of the posts on this forum and the tourettes forum and a lot more of the posts here seem to relate more. The strange thing is today my husband was diagnosed with strep throat and has been given a course of penicillan.

 

My questions are basically

 

1) Could this potentially be PANDAS

2) Could I have passed the strep onto my son, (he did not really exhibit any symptoms) and then he passed it onto my husband

 

My son has been referred to the child mental health services and they are going to do a school follow up and mentioned that it might possibly be tourettes but they need to investigate further. I will mention PANDAS to them but am not hopeful they will take it seriously, my doctor has never even heard of it.

 

I would also like to know how long a typical episode of PANDAS lasts from your own personal experiences, and when do the symptoms start to wane during a typical episode. Also, from what I have read, whether treated or not treated, do they ever grow out of this condition?

 

My doctor will not even entertain the idea of doing swabs or culture testing because she has not heard of it and says it is upto the child mental health people to sort it out, she just wanted us out of the surgery asap to see her next patient! So I am pretty much on my own

 

Thanks

[Diana]

Yes, ARMom - this sounds like a clear case of PANDAS. I have posted with Sandree here as well. My name is Diana Pohlman, I am working with YALE and Susan Swedo to create a new study on IVIG and PANDAS. Dr. Miro Kovacevic in Chicago - has been following her protocal for PANDAS over the past decade. It is largely working.

 

Yes, your son when exposed to strep will have symptom exacerbation. Penicillin does not always clear the strep so your husband should be rechecked. Many of us have found Azithroymcin to be the best help with PANDAS - but sometimes - especially with East Coast strains of strep? - the penicillin is fine.

 

I would very much like to help you with phone numbers the doctors have given me for you to contact them if you need help in influencing/explaining this "new illness" to your doctors. Dr. Leckman is a highly acclaimed doctor and has world-wide respect - Dir. of Child Psych at Yale. He will call your doctor or he/she can call him.

 

There is too much to explain only on this forum. I am TRYING to finish up a website with all the parents and docs info - the best I can as I'm not a doc but am a holder of everyone's info! - but my son had an unhappy relapse first of March post-ivig 6 months. He is unusual in his extreme sensitivity to strep. Most kids post-ivig seem to fair better than he.

 

Anyways, the rages, the tics, the mean comments, etc - this is all brain inflammation. You MUST get your child on antibiotics asap and then follow perhaps with prednisone to quell the inflammation. It is the same for any brain inflammation (like the more extreme encephalytis) - you will get your child back. And then see how he improves, perhaps eventually considering IVIG for him. It is very individual for each child.

 

There is a whole network of parents here to help you - not just me - I am sorry I am slow getting up the website. Yale will be hiring me in the Summer to track everyone a bit better and help a bit better - but this is the best we have for now. Best regards, Do email me back thru the forum - I don't often log onto the latitudes Q&A - but check my email daily. Thanks - and say a prayer for me too.........this is one ###### of an illness. diana