First PANDAS episode, need advice (and moral support)

[dcmom]

Hi everyone! Very excited to find this forum. I diagnosed my daughter with PANDAS over a week ago, and need some practical advice.

 

She is a wonderful, sweet, 5 yr old. She had two "classic" cases of strep in 2008, no behavoiral symptoms that I recall.

 

She started a few weeks ago, with frequent urination, LONG and extensive wiping rituals, worry, and out of character temper tantrums around all urination activities. The doctor diagnosed her with "vaginitis" after a UTI test was negative. Two days later, for one day, she had a low fever. By this time, it was next to impossible to get her dressed to leave the house. My little munchkin was unraveling in front of my eyes. Panties don't fit, pants not comfortable, tags bother her, hours in the bathroom, major temper tantrums. The next week, I managed to get her to school, late, a few times. Finally a parent in the class sent out an FYI that her daughter had just been diagnosed with strep with no symptoms. Could it be strep? I was desperate. I googled strep and behavoir issues and found PANDAS. I read as much as I could. It was her. Panicked (a portion of her brain is swollen?), I took her to the doctor with a printout from NIH on PANDAS.

 

The quick strep came back negative. My heart sank. The doctor sent us home with a prescription for bacterial vaginitis. I knew that was not it. My daughter's behavoir was way too extreme. After the weekend (a heart wrenching week end), the nurse called, the throat culture from the lab was positive. Vindication, a prescription for Cefadroxil, but now what?

 

Although I don't blame her, I really don't feel like dealing with that dr. again.

 

My daughter has been on the medication for 7 days. We saw some improvement in her emotional issues and eating after 5 days. There is no more urination frequency. However, it is still hard/impossible to get her to school. She still will not wear panties- and hates putting on anything other than PJs. I have an appt for Thursday with a psychologist who deals with children's anxiety disorders. I have an appt next week with Dr Perlmutter, who worked with Dr Swedo, and was recommended to me by Dr Swedo.

 

Here are some questions, but I am open to any advice:

 

1. Hope? Is there a possibility that she won't contract strep again, and therefore issues will resolve and that will be it? How frequently does your child get strep? Why does it seem (from this forum) that these kids get strep all of the time?

 

2. What do you do about school? Do you try to force them to go? Do you homeschool? How long do they typically miss for a relapse? (she has missed a total of 10 days in the last three weeks)

 

3. Should I give ibuprofin? The brain swells- this puts me in a total tailspin. Is there evidence or thoughts of lasting damage from this?

 

4. When the behavoir subsides, is it quick? Will she hang on to some of these issues, even when the biological factor is gone, because she has gotten into a rut, and is too little to understand what caused it. She does NOT like to talk about any of it. Do you feel a psychologist is helpful, or a waste?

 

5. What type of doctor will handle this long term, in the best way for us. Pediatrician, neurologist, psychiatrist? Can anyone recommend a doctor in the Washington, DC area?

 

Thank you so much for any insight you can give. This has been a very difficult month for me (with worrying about her, and using all of my patience and strength), but my heart breaks so much for these children. To go from loving, happy and sweet to overnight consumed with anguish, worry, fear, anger must be so confusing to any age, especially the little ones. Best wishes to everyone in their search to find a solution for their child.

 

Oh, and one last thing, I would love to put together a simple eye catchy postcard on PANDAS to send to pediatricians. I believe this is probably a lot more common than even the scientists think, and it is fairly simple to screen for. If my doctor knew what to look for (the urination issues are classic- and in strep season...) we could have caught it a few weeks ahead of time. Imagine those who don't make the connection to strep for much longer, maybe some never. Anyway has anyone done this? Any thoughts ? Ya know, a glossy postcard in a bright color with a cute panda on it, listing the classic signs and stressing a strep test just in case.....

[amy s]

Hi everyone! Very excited to find this forum. I diagnosed my daughter with PANDAS over a week ago, and need some practical advice.

 

She is a wonderful, sweet, 5 yr old. She had two "classic" cases of strep in 2008, no behavoiral symptoms that I recall.

 

She started a few weeks ago, with frequent urination, LONG and extensive wiping rituals, worry, and out of character temper tantrums around all urination activities. The doctor diagnosed her with "vaginitis" after a UTI test was negative. Two days later, for one day, she had a low fever. By this time, it was next to impossible to get her dressed to leave the house. My little munchkin was unraveling in front of my eyes. Panties don't fit, pants not comfortable, tags bother her, hours in the bathroom, major temper tantrums. The next week, I managed to get her to school, late, a few times. Finally a parent in the class sent out an FYI that her daughter had just been diagnosed with strep with no symptoms. Could it be strep? I was desperate. I googled strep and behavoir issues and found PANDAS. I read as much as I could. It was her. Panicked (a portion of her brain is swollen?), I took her to the doctor with a printout from NIH on PANDAS.

 

The quick strep came back negative. My heart sank. The doctor sent us home with a prescription for bacterial vaginitis. I knew that was not it. My daughter's behavoir was way too extreme. After the weekend (a heart wrenching week end), the nurse called, the throat culture from the lab was positive. Vindication, a prescription for Cefadroxil, but now what?

 

Although I don't blame her, I really don't feel like dealing with that dr. again.

 

My daughter has been on the medication for 7 days. We saw some improvement in her emotional issues and eating after 5 days. There is no more urination frequency. However, it is still hard/impossible to get her to school. She still will not wear panties- and hates putting on anything other than PJs. I have an appt for Thursday with a psychologist who deals with children's anxiety disorders. I have an appt next week with Dr Perlmutter, who worked with Dr Swedo, and was recommended to me by Dr Swedo.

 

Here are some questions, but I am open to any advice:

 

1. Hope? Is there a possibility that she won't contract strep again, and therefore issues will resolve and that will be it? How frequently does your child get strep? Why does it seem (from this forum) that these kids get strep all of the time?

 

2. What do you do about school? Do you try to force them to go? Do you homeschool? How long do they typically miss for a relapse? (she has missed a total of 10 days in the last three weeks)

 

3. Should I give ibuprofin? The brain swells- this puts me in a total tailspin. Is there evidence or thoughts of lasting damage from this?

 

4. When the behavoir subsides, is it quick? Will she hang on to some of these issues, even when the biological factor is gone, because she has gotten into a rut, and is too little to understand what caused it. She does NOT like to talk about any of it. Do you feel a psychologist is helpful, or a waste?

 

5. What type of doctor will handle this long term, in the best way for us. Pediatrician, neurologist, psychiatrist? Can anyone recommend a doctor in the Washington, DC area?

 

Thank you so much for any insight you can give. This has been a very difficult month for me (with worrying about her, and using all of my patience and strength), but my heart breaks so much for these children. To go from loving, happy and sweet to overnight consumed with anguish, worry, fear, anger must be so confusing to any age, especially the little ones. Best wishes to everyone in their search to find a solution for their child.

 

Oh, and one last thing, I would love to put together a simple eye catchy postcard on PANDAS to send to pediatricians. I believe this is probably a lot more common than even the scientists think, and it is fairly simple to screen for. If my doctor knew what to look for (the urination issues are classic- and in strep season...) we could have caught it a few weeks ahead of time. Imagine those who don't make the connection to strep for much longer, maybe some never. Anyway has anyone done this? Any thoughts ? Ya know, a glossy postcard in a bright color with a cute panda on it, listing the classic signs and stressing a strep test just in case.....

 

DCMom,

I don't have much time but I did send you a quick PM. I will try to respond more to this tonight, but it will be late. Hang in there. Keep reading.

[TracyRee]

please don't cover all this in PM's!! I'm watching this thread closely as I'm in the same situation and hoping to get answers to the same questions. Thanks

 

 

DCMom,

I don't have much time but I did send you a quick PM. I will try to respond more to this tonight, but it will be late. Hang in there. Keep reading.

[amy s]

Here are some questions, but I am open to any advice:

 

1. Hope? Is there a possibility that she won't contract strep again, and therefore issues will resolve and that will be it? How frequently does your child get strep? Why does it seem (from this forum) that these kids get strep all of the time?

 

2. What do you do about school? Do you try to force them to go? Do you homeschool? How long do they typically miss for a relapse? (she has missed a total of 10 days in the last three weeks)

 

3. Should I give ibuprofin? The brain swells- this puts me in a total tailspin. Is there evidence or thoughts of lasting damage from this?

 

4. When the behavoir subsides, is it quick? Will she hang on to some of these issues, even when the biological factor is gone, because she has gotten into a rut, and is too little to understand what caused it. She does NOT like to talk about any of it. Do you feel a psychologist is helpful, or a waste?

 

5. What type of doctor will handle this long term, in the best way for us. Pediatrician, neurologist, psychiatrist? Can anyone recommend a doctor in the Washington, DC area?

 

Thank you so much for any insight you can give. This has been a very difficult month for me (with worrying about her, and using all of my patience and strength), but my heart breaks so much for these children. To go from loving, happy and sweet to overnight consumed with anguish, worry, fear, anger must be so confusing to any age, especially the little ones. Best wishes to everyone in their search to find a solution for their child.

 

Oh, and one last thing, I would love to put together a simple eye catchy postcard on PANDAS to send to pediatricians. I believe this is probably a lot more common than even the scientists think, and it is fairly simple to screen for. If my doctor knew what to look for (the urination issues are classic- and in strep season...) we could have caught it a few weeks ahead of time. Imagine those who don't make the connection to strep for much longer, maybe some never. Anyway has anyone done this? Any thoughts ? Ya know, a glossy postcard in a bright color with a cute panda on it, listing the classic signs and stressing a strep test just in case.....

 

 

Hi DcMom et al,

I don't know that anyone can for sure answer your questions. All of the parents on this board feel for you and others like you. We are all very exhausted, having gone through months and months, some years....many people on here are going through this on a daily basis and are just to exhausted to post. The best thing for you is to go back and read the older ongoing discussions and you will find a lot of info.

 

The main thing I can tell you is that while our children with pandas seem to share many striking similarities, all the symptom relapses seem to present differently even in the same child.

 

1. I don't know why these kids seem to get strep a lot. One thing for sure,,,,we sure notice it more and it makes a HUGE impact on lives when they do get strep and so we talk more about...live in fear of it...whereas maybe to other parents it is a minor annoyance, typical childhood illness. Hope? Uh, well, in my opinion yes, there is hope but it seems that once these kids get strep and have a pandas situation, it is more likely that they will get ill (I mean, like PANDAS ill) with other bacteria and viruses. So big advice on this one is to get a doc to give prophylactic antibiotics. Many here use Augmentin and Zithromax...but other antibiotics can work with these kids too. I don't put much stock into Penicillin though. And there is hope that your child will be ok. I believe that these kids will all be ok. My child finally is after IVIg, but I still live in fear of a strep or other infection. I think there are still some things with IVIg that need to be ironed out.

 

2. School...depending on what the child's particular issue is. I think several here have done homeschooling. My child had to have 'homebound' services from the school for a couple months. Get ready to go through the IEP process, bringing documentation from a physician if possible. A teacher came to our house for an hour - 3 times per week to give the tests and otherwise I stayed home and worked with my child on lessons. There were some things we just could not get to due to symptoms and since the school saw how hard we were working at getting things done, they did end up calculating the grade without those certain things we couldn't get to.

 

3. Ibuprofen- I did give ibuprofen for a couple months, after reading EAMom's report that it seemed to help. I did want to minimize the time that my child was on this because NSAIDS are not good for the tummy but I was more concerned with getting the inflammation out of the brain at that time.

 

Oh the question about the lasting effects...I'm assuming the question was about lasting effects of the brain inflammation... some kids do not regain their previous level in between spikes (during an infectious period). In retrospect, I believe that my child had many many spikes with little improvement in between...but then again my child was misdiagnosed for a long time and then when the possibility of pandas was raised WAS put on penicillin but it was such a small dose it did no good.

 

4. I can't really answer regarding the behavior subsiding quick... from what I have read when the child has an exacerbation of symptoms the process is slow in getting back to optimal health. The only time I saw very definitive improvement was when my child had a steroid burst and after IVIg. Otherwise we had basically ONE period of time when she snapped out of it, albeit slowly. In my child's case she started having this issue August 2007...it pretty much continued until April and May 2008 (was back to normal for no reason that I knew of) with a drastic decline in June 2008 which lasted until she got a steroid burst and IVIg in November 2008.

 

5. I can't recommend anyone in DC, good luck with that. Some of us have travelled all over to find the right doc to help. I have found little help from well meaning psychiatrists, psychologists, or neurologists (except for the fact that they can order some much needed tests that rule out other things!). A child psychologist was a little helpful because they helped me deal with some of the issues but nothing that helped get rid of the problem in my child. Dr. K (www.webpediatrics.com) was very helpful because he is so knowledgable and believes that pandas does exist. A ped rheumatologist was extremely helpful, but otherwise once we found the right pediatrician for us...he was most helpful. Dr. K is good and he will email you back quickly most times. Save your money because insurance might not cover everything that you might need for your child. Many of us have spent thousands.

 

The best thing I can tell you is to start printing off peer reviewed medical research papers and other papers that you might need to refer back to...or make copies of for your doc. Make your self a binder or folder for this. Keep reading and be ready to whip out any research papers you can find to prove your point when talking with medical professionals. At the top of this forum are some good links posted by BUSTER. Make detailed notes about your child's issues.

 

Diana will probably be getting ahold of you if she hasn't already. She is a good resource of information. I'm sorry your child is sick. Hang in there. I'm sure others will come on and add info when they have a chance.

regards,

amy s

[anne]

dc mom,

I am not knowledgable in pandas, I just have a suggestion for the panties issue. When my daughter was 4 she started yanking on her panties to try and keep them away from her private areas. I took her in and they had no idea why she was doing it. Out of desperation, I found she would wear her little brothers boxer underwear, the loose kind, not the form fitting ones they have now. I have to tell you I was so relieved when they worked for her. She loved wearing dresses so there was no problem with them bunching up under pants. I still remember we went on a trip to Hawaii, and when she wore her bathing suit, she had the crotch pulled down to her knees. I felt so bad for her. Luckily she got over it, but it took quite a while.

 

Anne

[T_Mom]

Amy--Great answers all. Very helpful.

To add to the variability of symptoms/reactions:... in my daughter's case she with two exacerbations she responded remarkably well to "full strength" Amoxicillan (500mg 2xs a day for 10 days.) Within 24 to 48 hours. Virtually 100% clear until she caught another cold...

She also had a remarkable clearing with either the Steroid Burst or Amox.--was on both at the time.

 

Re: doctors. It comes down to finding someone who is able and willing to provide the support necessary.

They need to know the issues, or at least be willing to consult with someone who does. Prior clinical experience with PANDAS/PITAND children helps. I think the psych. and CBT can provide support, physical issues have been key in our own experience. Amy's suggestion on the binder of information, records, etc. is key to understanding the course and documenting your experience.

 

Best,

T.Mom

[EAMom]

Hi DCMom,

 

Ditto what Amy S. said about getting in contact with Diana Pohlman (from this forum.)

 

We think Ibuprofen helped, we did that for about 2 mo. straight with Azithromycin. Try to avoid giving it on an empty stomach.

 

Antibiotics can be tricky. Our dd was initially on Augmentin. Her mood improved but still had lots of OCD/eating disorder symptoms/tics/compulsions. She regressed on Amoxicillin. She didn't improve at all on a Cephalexin...finally improved greatly on Azithromycin. Some kids do better on Keflex (a Cephalosporin), some on Azithromycin. I think it depends on the child and the strain of strep. We think Azithromycin worked for our dd b/c her strep was intracellular and Azithromyin is immune-modulating. Our dd is still on 250mg Azith. daily.

 

Antibiotics don't work effectively for all, or they stop working after a point...and then you have to think about IVIG.

 

Many have found that Amoxicillin isn't quite strong enough. Ditto for Pennicillin. Also, with Penicillin, you also really need to give it every 12 hours...if you miss a dose your child is essentially unprotected for several days. Ughhh. I don't know if this is the same for Amoxicillin?

 

Re docs...

--Beware esp. of neurologists. Many are PANDAS non-believers. You might want to see one though if you want to get an MRI etc. Ours wasn't particularly knowledgable re PANDAS but she did agree that our dd should stay on abs (which made our nervous ped feel better). She also ordered an MRI for us. Here is an article on one neurologist (in NJ) who knows about PANDAS...http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm

--We also saw a pediatric rheumatologist who didn't know a whole lot about PANDAS (but also agreed about the abs and dosing).

--Our OCD specialist child psychiatrist was our most helpful/PANDAS knowledgeable (believed in the diagnosis when most other peds/eating disorder docs didn't) doctor. But, be careful, since a lot of psychiatrists don't know much about PANDAS either and will want to rx lots of psych. drugs.

--Our ped didn't know much but we were able to eventually get her "on board". For us, it was a matter of us contacting "experts" and doing the research...she pretty much now goes along with what we want. I think we just eventually wore her down.

--I would agree with Amy S. that Dr. K is probably the most (from a practical standpoint) PANDAS knowledgeable doc in the country.

 

Also, be sure to check family members for strep...to make sure they aren't carriers. Do change toothbrushes/toothpaste while your dd is on abs. Also don't let her share toothpaste with other family members...

 

Hang in there!

[Diana]

Hi everyone! Very excited to find this forum. I diagnosed my daughter with PANDAS over a week ago, and need some practical advice.

 

She is a wonderful, sweet, 5 yr old. She had two "classic" cases of strep in 2008, no behavoiral symptoms that I recall.

 

She started a few weeks ago, with frequent urination, LONG and extensive wiping rituals, worry, and out of character temper tantrums around all urination activities. The doctor diagnosed her with "vaginitis" after a UTI test was negative. Two days later, for one day, she had a low fever. By this time, it was next to impossible to get her dressed to leave the house. My little munchkin was unraveling in front of my eyes. Panties don't fit, pants not comfortable, tags bother her, hours in the bathroom, major temper tantrums. The next week, I managed to get her to school, late, a few times. Finally a parent in the class sent out an FYI that her daughter had just been diagnosed with strep with no symptoms. Could it be strep? I was desperate. I googled strep and behavoir issues and found PANDAS. I read as much as I could. It was her. Panicked (a portion of her brain is swollen?), I took her to the doctor with a printout from NIH on PANDAS.

 

The quick strep came back negative. My heart sank. The doctor sent us home with a prescription for bacterial vaginitis. I knew that was not it. My daughter's behavoir was way too extreme. After the weekend (a heart wrenching week end), the nurse called, the throat culture from the lab was positive. Vindication, a prescription for Cefadroxil, but now what?

 

Although I don't blame her, I really don't feel like dealing with that dr. again.

 

My daughter has been on the medication for 7 days. We saw some improvement in her emotional issues and eating after 5 days. There is no more urination frequency. However, it is still hard/impossible to get her to school. She still will not wear panties- and hates putting on anything other than PJs. I have an appt for Thursday with a psychologist who deals with children's anxiety disorders. I have an appt next week with Dr Perlmutter, who worked with Dr Swedo, and was recommended to me by Dr Swedo.

 

Here are some questions, but I am open to any advice:

 

1. Hope? Is there a possibility that she won't contract strep again, and therefore issues will resolve and that will be it? How frequently does your child get strep? Why does it seem (from this forum) that these kids get strep all of the time?

 

2. What do you do about school? Do you try to force them to go? Do you homeschool? How long do they typically miss for a relapse? (she has missed a total of 10 days in the last three weeks)

 

3. Should I give ibuprofin? The brain swells- this puts me in a total tailspin. Is there evidence or thoughts of lasting damage from this?

 

4. When the behavoir subsides, is it quick? Will she hang on to some of these issues, even when the biological factor is gone, because she has gotten into a rut, and is too little to understand what caused it. She does NOT like to talk about any of it. Do you feel a psychologist is helpful, or a waste?

 

5. What type of doctor will handle this long term, in the best way for us. Pediatrician, neurologist, psychiatrist? Can anyone recommend a doctor in the Washington, DC area?

 

Thank you so much for any insight you can give. This has been a very difficult month for me (with worrying about her, and using all of my patience and strength), but my heart breaks so much for these children. To go from loving, happy and sweet to overnight consumed with anguish, worry, fear, anger must be so confusing to any age, especially the little ones. Best wishes to everyone in their search to find a solution for their child.

 

Oh, and one last thing, I would love to put together a simple eye catchy postcard on PANDAS to send to pediatricians. I believe this is probably a lot more common than even the scientists think, and it is fairly simple to screen for. If my doctor knew what to look for (the urination issues are classic- and in strep season...) we could have caught it a few weeks ahead of time. Imagine those who don't make the connection to strep for much longer, maybe some never. Anyway has anyone done this? Any thoughts ? Ya know, a glossy postcard in a bright color with a cute panda on it, listing the classic signs and stressing a strep test just in case.....

[dcmom]

I just wanted to add an update on dd condition.

 

We did 14 days of cefadroxil. We saw some improvement, but OCD issues still there.

 

We saw a very helpful psychiatrist in VA. She put Julia on 10 days of therapeutic amox, followed by a daily preventative dose. She thought it could take six weeks for the symptoms to subside.

 

We saw an immunologist in DC (no help at all- doesn't really believe in pandas). We saw an infectious doctor in DC- very nice, we spoke about strep, however all of his info (by his admission) was from the pediatrician's book published 3 yrs ago. I saw two very helpful neurologists, one in MD, one in NJ.

 

The NJ neurologist was very informative and knowledgeable about all studies and theories. He was the first doctor to admit that even if one cultures negative, the strep can still be there- seems obvious- why do other doctors have such a hard time with that? He also discussed the theory that strep can go intracellular. He thought tonsil removal can help in some cases. He seemed to reserve IVIG and PEX for EXTREME cases- which I don't know if I am in agreement with. He has a patient who is 22 and hasn't grown out of pandas (although she is doing very well). He put her on a 10 day course of zithromax (we are on day 2). He took a blood test, we are awaiting the results.

 

I am REALLY hoping the Zith helps. (She is functioning much better already though- just a lot of anxiety around OCD issues). I am curious to see her blood test results.

 

I wanted to update the thread, because I have found researching everyone's stories so helpful. And if anyone needs doctor recommendations in my area, they can email me.

 

My current struggle is that I really am thinking of trying IVIG or PEX if we have another episode. Have others been successful in having insurance cover it? It just seems like if I can prevent her from a lifelong struggle with OCD, it would be worthwhile. (And from my VERY minimal research, they seem like relatively safe procedures.) How does the risk compare with a tonsillectimy? If anyone could offer insight I would appreciate it.