Only dx'd for 1 week

[Perfect4y_o]

1 1/2 wks ago my 4yo son was diagnosed w/pandas.The weekend before was the worst of our lives. A perfect boy went into cleanliness overload -washing hands,brushing teeth, changing underwear 12 times a day,not wanting to sit or lay down for fear of messing up his hair that he had just brushed for the 15th time. Not bad things just WAY too many times. It made me so uncomfortable to watch him cry and worry! I started looking online for symptoms of OCD and found that the rapid onset just didn't fit. I stayed up all nite reading of pandas and was convinced he had it when I called my pediatrician on Monday.He had no idea what I was talking about-but upon reading online sent us to the ER for a titer /strep test ?.they didn't know anything either. Next day he sent us to a phychiatrist who immediately said it was pandas brought on by strep. He had an ear infection 14 days before and had been off antibiotics for 4 days(cephalexin). She said it would it would go awamonody likely never return-no worries-and she would probably never see us again (indeed it was already 70%better then). It has been a week since that diagnosis and he is 98% himself again but what I have been reading is mortifying!!! Can it not be a one time thing? If it does recur does he get worse everytime ? Can the effects be permanent even if you treat with antibiotics right away? I asked my dr this and he informed me he was trying to find a specialist for us because he didn't feel comfortable treating something he knows nothing about. So Now we are at square one. Don't get me wrong--we are sooo blessed that he is back to near perfect... I'm just so scared I will miss something or not do something that makes"next time" worse. Sorry so long. I just need answers.

[EAMom]

). She said it would it would go awamonody likely never return-no worries-and she would probably never see us again (indeed it was already 70%better then). It has been a week since that diagnosis and he is 98% himself again but what I have been reading is mortifying!!! Can it not be a one time thing?

 

PANDAS is very unlikely to be a 1 time thing.

 

Where do you live? Maybe someone can rec. a doc.

 

Here is a link to helpful threads. http://www.latitudes.org/forums/index.php?showtopic=3928

"Frequently Asked Questions" is a good place to start http://www.latitudes.org/forums/index.php?showtopic=6266 .

Edited March 25, 2010 by EAMom

[Perfect4y_o]

Sorry that was go away-- most likely not to return. She seemed to think that since it was his first time ..we caught it in time. I'm getting the feeling here that isn't so.

I live in memphis,tn.

[EAMom]

Sorry that was go away-- most likely not to return. She seemed to think that since it was his first time ..we caught it in time. I'm getting the feeling here that isn't so.

I live in memphis,tn.

 

there's 1 tn doc on our list http://www.latitudes.org/forums/index.php?showtopic=6428 Maybe someone will post more info. on that?

[sf_mom]

You 'seem to have caught it early' but I would definitely talk with a Dr. experienced in PANDAS and treat aggressively to ensure the best outcome for your son.

 

The reason I highlighted 'seem to have caught it early' is only after our son's sudden on-set last June did we realize he was probably sick for 1 1/2 years prior to that date with low level symptoms.

 

Hang in there...

 

 

 

Sorry that was go away-- most likely not to return. She seemed to think that since it was his first time ..we caught it in time. I'm getting the feeling here that isn't so.

I live in memphis,tn.

[thereishope]

Welcome. Unfortunately, you have to look at PANDAS with the assumption that it will happen again.Not to drive yourself crazy but to keep your guard up. I mean, I suppose there's a chance it won't surface again, if he never contracts strep and a very long time goes without illness. But the odds are against that. That ear infection could have been caused by strep. No one knows that.

 

Right now, I say go into preventive mode. Check every single person in your house for strep. This will help revent reinfection and help prevent backsliding from exposure. Even if people do not have symptoms, get them tested. If the rapid test comes back negative, make sure they send out a culture on everyone.

 

Make sure you do basic cleaning in the house. Change toothbrushes, rinse and spit cups, etc.

 

Contact the school, reschool, daycare, etc Tell them you need to be notified if strep hits the room.

 

Also, discuss with your doctor about keeping him antibiotics in hopes of preventing a strep infection (prophylactic antibiotics).

 

Finally, it's been what...almost 2 weeks? if you see a back slide occurring soon, don't hold off contacting the dr to switch antibiotics. What was your son put on? It has been written on here before that arond teh 2 week mark, parents see a backsliding of symptoms because the antibiotics start to not work. I am not saying this will happen, but if it does don't hold off too long.

Edited March 25, 2010 by Vickie

[Perfect4y_o]

Welcome. Unfortunately, you have to look at PANDAS with the assumption that it will happen again.Not to drive yourself crazy but to keep your guard up. I mean, I suppose there's a chance it won't surface again, if he never contracts strep and a very long time goes without illness. But the odds are against that. That ear infection could have been caused by strep. No one knows that.

 

Right now, I say go into preventive mode. Check every single person in your house for strep. This will help revent reinfection and help prevent backsliding from exposure. Even if people do not have symptoms, get them tested. If the rapid test comes back negative, make sure they send out a culture on everyone.

 

Make sure you do basic cleaning in the house. Change toothbrushes, rinse and spit cups, etc.

 

Contact the school, reschool, daycare, etc Tell them you need to be notified if strep hits the room.

 

Also, discuss with your doctor about keeping him antibiotics in hopes of preventing a strep infection (prophylactic antibiotics).

 

Finally, it's been what...almost 2 weeks? if you see a back slide occurring soon, don't hold off contacting the dr to switch antibiotics. What was your son put on? It has been written on here before that arond teh 2 week mark, parents see a backsliding of symptoms because the antibiotics start to not work. I am not saying this will happen, but if it does don't hold off too long.

[Perfect4y_o]

Welcome. Unfortunately, you have to look at PANDAS with the assumption that it will happen again.Not to drive yourself crazy but to keep your guard up. I mean, I suppose there's a chance it won't surface again, if he never contracts strep and a very long time goes without illness. But the odds are against that. That ear infection could have been caused by strep. No one knows that.

 

Right now, I say go into preventive mode. Check every single person in your house for strep. This will help revent reinfection and help prevent backsliding from exposure. Even if people do not have symptoms, get them tested. If the rapid test comes back negative, make sure they send out a culture on everyone.

 

Make sure you do basic cleaning in the house. Change toothbrushes, rinse and spit cups, etc.

 

Contact the school, reschool, daycare, etc Tell them you need to be notified if strep hits the room.

 

Also, discuss with your doctor about keeping him antibiotics in hopes of preventing a strep infection (prophylactic antibiotics).

 

Finally, it's been what...almost 2 weeks? if you see a back slide occurring soon, don't hold off contacting the dr to switch antibiotics. What was your son put on? It has been written on here before that arond teh 2 week mark, parents see a backsliding of symptoms because the antibiotics start to not work. I am not saying this will happen, but if it does don't hold off too long.

[Perfect4y_o]

Thank you so much for the practical insite. We are all going in the morning for strep cultures. How did that not even dawn on me? general sanitizing ..yes. New toothbrushes?? I didn't even think of that. I am so dumb.

I'm calling around for a new dr. The one treating us now won't give anymore antibiotics.( He will culture

my 4y.o.tomorrow too though and will give more if Positive.) I read to get upper resp. culture not just throat to show

more strains-any other advice? Thanks so much. I'm obviously ignorant in all of this.

[thereishope]

Remind the doctor that your son can get a false negative strep test while being on antibiotics and up to 3 weeks of being off antibiotics. yes, it's sad we need to remind doctors about these things, but that's how it is.

[colleenrn]

Make sure they vigourously swab both tonsils and sides of throat. There is a 20% one tonsil will swab positive and the other not, so very important they get both. Grow it for a full 72 hours. Good luck!

 

AND, you are not dumb! This disorder can be overwhelming, so it is impossible to think of everything. That is why I love this forum!!

Colleen

[zazuk2010]

On the contrary, you are so on top of this. I can not tell you how many parents I have now met whose children should be checked for PANDAS and they just don't want to deal with it unless it gets worse. You are way ahead of the game. That will help your child no matter what happens.

 

My boys were just turning 5 when they had their first symptoms. We got to a diagnosis fast, treated it aggressivly and while it did take a while for us to get to the exact treatments that worked for them, at this point, they are doing much much better. Now they are about to turn 6 in May and short of a few minor symptoms they are happy, healthy and thriving.

 

Best,

Kari