Symptoms of PANDAS

[JuliaFaith]

After reading several posts, Iam curious about the symptoms. My son has a 'clearing of the throat', headache, muscle aches, stomach ache, 'hot/cold chills' and has had these for 3 mos. following a year of several illnesses. None of his illnesses were strep throat. He did have a bad cough during his last illness and since then a lot of flu-like symptoms. He also refuses to sleep alone anymore (this started a year ago with stomach pain). He has been through endoscopy,gluten-free diet (still is), two tries at Prednisone by his Dr., 2-weeks of antibiotics [which were treacherous on his stomache], and we just got a confirmation back on PANDAS from a University of Oaklahoma study.

 

Are these typical symptoms?

 

After a full week, still trying to get an appt. with an immunologist who is the only one who treats PANDAS, at least at that hospital in Seattle, WA. He apparently has a huge waiting list for July already. Do you know of any other immunologist in the Seattle area that treat PANDAS?

[dut]

Hi - we see Dr Cynthia Keller atRredmond Pediatrics as our ped and when we tried to see an immunologist at seattle's they saw the PANDAS dx and told us we were in the wrong place...great!

 

So we did a telephone consult with Dr Bouboulis.

 

Our ped is great and has an increasing number of PANDAS patients.. she really gets the severity of this disorder, is willing to think outside the box and learn and is very knolwedgable....if you can get to see her, if you don't already, I'd recommend her as a great local dr. She does abx steroids and ivig. and seems to be really progressive with regards to supplements, diet modifications and allergies. We've been really pleased with her response.

 

good luck...

[JuliaFaith]

Hi - we see Dr Cynthia Keller atRredmond Pediatrics as our ped and when we tried to see an immunologist at seattle's they saw the PANDAS dx and told us we were in the wrong place...great!

 

So we did a telephone consult with Dr Bouboulis.

 

Our ped is great and has an increasing number of PANDAS patients.. she really gets the severity of this disorder, is willing to think outside the box and learn and is very knolwedgable....if you can get to see her, if you don't already, I'd recommend her as a great local dr. She does abx steroids and ivig. and seems to be really progressive with regards to supplements, diet modifications and allergies. We've been really pleased with her response.

 

good luck...

 

 

We also see Dr. Keller! She is amazing! We are in the process of trying to get into Children's but the one Immunologist that treats PANDAS is really full so I am checking around in the meantime before we see Dr. again.

 

Thank you!

[dut]

Which dr are you trying to see... we never even got passed the door 'cos they seemed to balk at the pandas dx.. maybe things are changing there. We also had a bad experience with infectious diseases there..

 

dr b was good but out of pocket for us and over the phone but seems to really know his immuno stuff and was happy to talk and discuss our concerns and suggestions..

 

 

how old is your son? he certainly sounds pandas or pandas like.

 

we have a dd6 and ds2 both pand(a?). we haven't found the original trigger yet but they both now trigger to various illnesses and my dd is a classic presentation and ds becoming more that way

 

good luck in getting a good immuno...

[JuliaFaith]

Which dr are you trying to see... we never even got passed the door 'cos they seemed to balk at the pandas dx.. maybe things are changing there. We also had a bad experience with infectious diseases there..

 

dr b was good but out of pocket for us and over the phone but seems to really know his immuno stuff and was happy to talk and discuss our concerns and suggestions..

 

 

how old is your son? he certainly sounds pandas or pandas like.

 

we have a dd6 and ds2 both pand(a?). we haven't found the original trigger yet but they both now trigger to various illnesses and my dd is a classic presentation and ds becoming more that way

 

good luck in getting a good immuno...

Thank you for your input.

 

We tried to get an appt. with Dr. Torgeson but he is too full to see us. So we are waiting to see what to do next.

 

My son is 12 and was diagnosed thru the Cunningham Study just a few weeks ago.

 

I feel for you having 2 children with this. How long have they had this? Does this run in families? Do they think it is inherited? One of the questions on the Cunningham test was whether anyone in my family has had Rhuematic fever. I also have a 22 yr. old son who has never shown signs of this.

 

Best wishes to you and your family.

[Uma Kukathas]

My daughter was diagnosed with PANDAS two and a half years ago and had all the symptoms you describe except the chills. Some went away very quickly after the first round of antibiotics (the throat clearing and facial grimaces), but others took a LONG time to get better. She had bad joint pain for more than a year and a half and that has only recently gone away so she can run comfortably again. Her headaches persisted for a long time, but we've seen them really diminish as well. We think her headaches were a result of her balance being impaired. She was evaluated and did OT exercises that really helped with balance, and the headaches lessened and then went away. Her stomach pains have also been reduced in severity, although she still experiences discomfort. We are trying various ways to help her with that, which at this point is really her only remaining symptom of PANDAS. We see Dr. Keller as well, and she has been so wonderful. My daughter absolutely loves her. Has Dr. Keller recommended other immunologists?

 

I hope your son gets some relief - it is a lot to deal with every day. My daughter was a very cheery and easygoing girl, and after the PANDAS she was complaining about everything, I think because her entire body hurt and she felt out of sorts all the time. It took a while, but she is pretty comfortable (and cheerful again) now that much of the inflammation is down.

 

Best of luck to you.

 

Uma

[dut]

Hi - Yeh , it was Dr Torgeson that Dr keller intended for us to see but we never even got past apponitments. She didn't recommend Dr B to us but I had heard he was very good and pro PANDAS.. and even though it was via tel he was very thorough. So far my dd's blood work all looks good.. a few lowish numbers but according to the tests she's a super healthy child that has never had anything!! Go figure..

 

Luckily, we've only had both kids in a mild flare at the same time... so far. In fact only our dd has had the really off the wall epsiodes so far, our ds seems more low level and chronic and also presents differently to his sister. Seeing both of them and their presentations is giving me a feel for just how differently this can present in different kids.

 

With hindsight, our dd probably started around 3 and our ds at 7 months I believe, at the same time as his sister's first recognised episode.

 

Some believe there is a very strong genetic link as in Rheumatic Fever, whereas others (see SFMom's posts about her partially genetically related kids and others at a playdate all getting sick with post strep sequelae) think it is a particularly virulant strain of strep.

 

Did you get any relief in symptoms with the steroids? or abx? We are lucky with dd in that although she is more acute than her brother, she fully remits between epsiodes. It's a bit early to tell for our ds but I think he is going to be a more chronic case. He doesn't seem to get back to base line so well.

 

Have you been dealing with this for a long time? Do you go back to what you consider a symptom free baseline?

 

Feel free to pm me if you want to chat on the phone.. we could compare drs notes

[JuliaFaith]

My daughter was diagnosed with PANDAS two and a half years ago and had all the symptoms you describe except the chills. Some went away very quickly after the first round of antibiotics (the throat clearing and facial grimaces), but others took a LONG time to get better. She had bad joint pain for more than a year and a half and that has only recently gone away so she can run comfortably again. Her headaches persisted for a long time, but we've seen them really diminish as well. We think her headaches were a result of her balance being impaired. She was evaluated and did OT exercises that really helped with balance, and the headaches lessened and then went away. Her stomach pains have also been reduced in severity, although she still experiences discomfort. We are trying various ways to help her with that, which at this point is really her only remaining symptom of PANDAS. We see Dr. Keller as well, and she has been so wonderful. My daughter absolutely loves her. Has Dr. Keller recommended other immunologists?

 

I hope your son gets some relief - it is a lot to deal with every day. My daughter was a very cheery and easygoing girl, and after the PANDAS she was complaining about everything, I think because her entire body hurt and she felt out of sorts all the time. It took a while, but she is pretty comfortable (and cheerful again) now that much of the inflammation is down.

 

Best of luck to you.

 

Uma

 

It is good to hear your daughter is doing so well. Has she had any "reoccurrences" along the way?

 

It is confusing to me why there has to be such a 'roller coaster ride' just to see if you can get an appt. at Children's. First, they were going to schedule, then they were going to have to see, then it was possible if my Dr. talked to the Dr. it would work out and then they called and said "we cannot schedule you." Very confusing and untimely since we just got the diagnosis a few weeks ago.

 

We do think my ds probably started this with stomache aches last year which got better after going on a gluten-free diet. He has been on a 2-week anti-biotic with no reduction in symptoms. WE have also tried 2 sessions of 5-day prednisone with no relief as well. His tests, so far, show he is healthy.

 

One of my concerns now is how to educate him with this condition. He is supposed to go to Jr. High this next year.

 

Why did you elect not to pursue IVIG? Is it only available to people who can afford to go see Dr. K or B?

 

It is interesting to hear that your daughters symptoms were similar to my sons since most all symptoms discussed are about the tic/ocd.

 

We have an appt. to see Dr. Keller next week so have not spoke to her since getting our Cunningham results back. Her nurse said something about the Dr. learning some new info. last weekend on stomach symptoms so that might be interesting for you to speak to her about (or I can let you know after we see her next week).

 

Thank you for your input, I really appreciate it.

 

Take care.

[JuliaFaith]

My daughter was diagnosed with PANDAS two and a half years ago and had all the symptoms you describe except the chills. Some went away very quickly after the first round of antibiotics (the throat clearing and facial grimaces), but others took a LONG time to get better. She had bad joint pain for more than a year and a half and that has only recently gone away so she can run comfortably again. Her headaches persisted for a long time, but we've seen them really diminish as well. We think her headaches were a result of her balance being impaired. She was evaluated and did OT exercises that really helped with balance, and the headaches lessened and then went away. Her stomach pains have also been reduced in severity, although she still experiences discomfort. We are trying various ways to help her with that, which at this point is really her only remaining symptom of PANDAS. We see Dr. Keller as well, and she has been so wonderful. My daughter absolutely loves her. Has Dr. Keller recommended other immunologists?

 

I hope your son gets some relief - it is a lot to deal with every day. My daughter was a very cheery and easygoing girl, and after the PANDAS she was complaining about everything, I think because her entire body hurt and she felt out of sorts all the time. It took a while, but she is pretty comfortable (and cheerful again) now that much of the inflammation is down.

 

Best of luck to you.

 

Uma

Oops, sorry, forget the question I asked about reoccurrences.

[JuliaFaith]

Hi - Yeh , it was Dr Torgeson that Dr keller intended for us to see but we never even got past apponitments. She didn't recommend Dr B to us but I had heard he was very good and pro PANDAS.. and even though it was via tel he was very thorough. So far my dd's blood work all looks good.. a few lowish numbers but according to the tests she's a super healthy child that has never had anything!! Go figure..

 

Luckily, we've only had both kids in a mild flare at the same time... so far. In fact only our dd has had the really off the wall epsiodes so far, our ds seems more low level and chronic and also presents differently to his sister. Seeing both of them and their presentations is giving me a feel for just how differently this can present in different kids.

 

With hindsight, our dd probably started around 3 and our ds at 7 months I believe, at the same time as his sister's first recognised episode.

 

Some believe there is a very strong genetic link as in Rheumatic Fever, whereas others (see SFMom's posts about her partially genetically related kids and others at a playdate all getting sick with post strep sequelae) think it is a particularly virulant strain of strep.

 

Did you get any relief in symptoms with the steroids? or abx? We are lucky with dd in that although she is more acute than her brother, she fully remits between epsiodes. It's a bit early to tell for our ds but I think he is going to be a more chronic case. He doesn't seem to get back to base line so well.

 

Have you been dealing with this for a long time? Do you go back to what you consider a symptom free baseline?

 

Feel free to pm me if you want to chat on the phone.. we could compare drs notes

 

How old are your children?

 

What does 'PM' mean? Not so 'shortcut' savvy.