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My 9 yo daughter has been like a different child for about the last month. She had strep/scarlet fever about 3.5 weeks ago, then tested + for strep again on Friday. He said that she *might* have PANDAS.

 

I was trying to convey to her pediatrician how different she has become... she has always been one of the top students in her class, she's in an advanced math class, a gifted reading class and generally is an A, occasionally B student. Suddenly, she is struggling in school to the point that she is having trouble with simple subtraction, forget multiplication! Also, putting words in alphabetical order, she insists is soooo hard... she's been reading about 3-4 grade levels above her grade for about 3 years, has a very advanced vocabulary and has always been an excellent speller. Suddenly, it's all in question.

 

She's also become very defiant at home. I'll tell her to do something and she will cross her arms and say, "No!" and she is having these tantrums now that I've never before seen with her. She's had maybe 2-3 tantrums in her entire life before... now, she's having sometimes that many in one evening, with kicking and saying that she hates me and I hate her. I've never seen her like this.

 

She seems to have to go potty almost all the time, no UTI, we checked that. Occasionally, during the day, she will shake her head, hands and legs... says she feels like she needs to shake them. She's also been having trouble with focusing/attentiveness in class this year, as well as keeping her things organized... so much so that I was having her evaluated for ADD.

 

I know something is very wrong with her. I've been reading about PANDAS and it seems to make sense, but her MD said it is not definitive one way or the other, so I'm not sure if I will be able to get support for her based on that. She is also seeing a counselor and I have an appointment for me to see her alone tomorrow before my daughter's regular appointment later in the week so we can discuss all this as I want to know how on earth I can best support my child. She is really struggling with school and I am uncertain how to help her. Homework takes literally hours every night and she is not always completing all of it. There are nightly battles and she is so frustrated, anxious, worrying about so many things...

 

Getting her to school in the mornings is a whole other battle. I've decided to start having her sleep in the clothes she will wear the next day. This morning, she sat on the potty and refused to stand; grabbed the seat and would not let go. I finally got her through that and we got her clothes, then she scooted under the covers, grabbed the comforter and would not let go... said she had to go to sleep. I wound up dressing her.

 

She will sometimes refuse to eat and she has hypoglycemia so that is not an option. I emailed the nurse, her teacher and the guidance counselor about that one to see if I can bring her to school to eat so she has some transition time there as she also wants me to stay in school with her the whole day lately. I could also walk her to class, which seems to help a bit... or maybe she is just too embarrassed to make a scene in front of her classmates, I'm not sure which, but at least she is in the door by then.

 

Can anyone offer me any suggestions? We are all completely exhausted and drained over here... her included... which, as far as I can tell, only exacerbates her condition, but she's having trouble sleeping at night also.

 

Sorry this is so long... Thanks!!

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I am so sorry your family is going through this. What antibiotics has your daughter been on to treat the strep?

Azith seems to work really well for many PANDAS kids - will your doc give you some to try?

She seems to have several key PANDAS symptoms - urinate often, emotional lability, tics (if that is what the shaking is?), separation anxiety, sudden onset of symptoms along with a strep infection, lack of focus, change in personality.

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She is currently taking Amoxicillin, which I have read is also indicated for PANDAS, which I assume is why he chose that one. If she is not starting to improve at the end of this round of meds, I will probably ask that she be re-tested for strep as I also read in my research this weekend that is advised.

 

There was an incident with another girl today at school, in which my daughter says the teacher got mad at her when the girl "told" the teacher. I'm not really sure what to believe at this point... if the other child was instigating something or if my daughter was having one of her tantrum-type situations at that time. My daughter was near tears as soon as she saw me after school so I brought her back in there and we spoke with the guidance counselor, who will talk with the girls and the teacher tomorrow.

 

Oh, boy... these things have never happened with her before... gosh, it's a lot of work and I know it's a lot of confusion for her, bless her heart.

 

I am so sorry your family is going through this. What antibiotics has your daughter been on to treat the strep?

Azith seems to work really well for many PANDAS kids - will your doc give you some to try?

She seems to have several key PANDAS symptoms - urinate often, emotional lability, tics (if that is what the shaking is?), separation anxiety, sudden onset of symptoms along with a strep infection, lack of focus, change in personality.

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Hi, browneyesmom:

 

Wow - all I can say is that your daughter's symptoms and rapid progression sound eerily similar to what we've experienced with our son (now 12, first became ill at 10). It sure sounds like classic PANDAS stuff.

 

We have also struggled mightily with school. Our son was a great student until this hit; now, since his latest exacerbation after a recent sinus infection, we can't get him to do any real homework at all. Too fuzzy, can't focus, can't process what he reads. He's mostly been doing homebound instruction (if any) for the past 2 school years. I pray you have better luck for your daughter.

 

I'd keep searching until you find a doctor who believes in PANDAS and is open-minded about how to treat it (at least willing to listen to your research or do his/her own research). That's crucial. Dr. Kovacevic (www.webpediatrics.com) is excellent, especially if you're in the Midwest (he's in Chicago); he does phone consults and will work with local doctors to coordinate treatment.

 

Antibiotics are crucial, too. Have to warn you: our son was originally put on Amoxil for about a year, and it never seemed to eradicate the strep. His symptoms just smoldered, never really resolved. As soon as the local doc decided we should discontinue the abx, things went downhill, and our son soon had his worst symptom explosion ever. You might ask your doc to at least consider augmentin, and others on this forum have seen best results with zithromax. (We've been on both of these at different times in the past 6 months.) There are 3 or 4 others your doc can try if those don't work well.

 

When you see the array of symptoms you described for your daughter, and they come on that fast out of nowhere, it sure sounds like PANDAS. Dr. K told us that "nothing else happens that fast with so many neuropsychiatric symptoms at once."

 

One other thing we learned the hard way: be very, very cautious about psych meds if a doc urges you to try them. Ativan and zyprexa literally drove our son over the edge and made a bad situation much worse. Some psych meds really help some kids, I've heard, but it's prudent to ask the doc to start with the lowest possible dose and ramp up very slowly.

 

Hang in there. With a good doc, good antibiotics, and some time, things should improve. There are options like IVIG and plasmapheresis if things get really rough. I think you'll find lots of good info (and lots of sympathy) on this forum! (It's been a sanity saver for my wife and me.)

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Hi Browneyesmom,

 

Your dd sure sounds like classic PANDAS. She has pretty much all the symptoms!

 

Where do you live? Maybe someone on this forum can rec. a doc who has more experience with PANDAS than your current one.

 

Our dd didn't respond to Amoxicillin. A lot of PANDAS kids don't. Other choices are Azithromycin (worked for us, 4th antibiotic we tried), Augmentin, or Keflex. Our dd (currently 8.5 years old) is still on Azith. 250mg/day. After 4 mo. of PANDAS (started with FEVER 1/08) our dd's mood improved after 4 doses of Azith, OCD/eating after 10 doses, she was about 98% better after 1 mo. She had some mild tics/movements which took 6 weeks to go away. She has had very mild recurrence of symptoms since Oct 08 (lots of strep in school, younger sister is strep carrier and often tests positive) but is overall doing well.

 

Some find Ibuprofen to be helpful. We gave that with the Azith. from mid- June until Aug...we think it helped. I think it decreases the basal ganglia/brain inflammation. Give with food if possible.

 

IMO fish oil/omega 3's are also important to help the brain heal.

 

IMO prophylactic antibiotics are critical. Some folks have also done IVIG...we are considering that.

 

I would also rec. getting other family members throat cultured to check for carriers. You should also get new toothbrushes/toothpaste 3-4 days into starting abs. Also, I don't let my kids share toothpaste tubes anymore.

 

As a note, if you culture your dd while on amoxicillin (or too soon after stopping) you can get a false negative (even though PANDAS is still full-blown). That happened to us. We don't bother to culture our PANDAS dd anymore since she is on abs, but we do culture her sister about once a month.

 

The not eating also goes along with PANDAS. Our dd ended up with full blown anorexia nervosa (at 7.5 years old!) thanks to PANDAS. She was actually in the hospital for 6 days last March for malnutrition/acute food refusal. The not eating was the worst part of PANDAS for us. She is doing well in that regard now, thank goodness.

 

Hang in there, things will get better.

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My 9 yo daughter has been like a different child for about the last month. She had strep/scarlet fever about 3.5 weeks ago, then tested + for strep again on Friday. He said that she *might* have PANDAS.

 

I was trying to convey to her pediatrician how different she has become... she has always been one of the top students in her class, she's in an advanced math class, a gifted reading class and generally is an A, occasionally B student. Suddenly, she is struggling in school to the point that she is having trouble with simple subtraction, forget multiplication! Also, putting words in alphabetical order, she insists is soooo hard... she's been reading about 3-4 grade levels above her grade for about 3 years, has a very advanced vocabulary and has always been an excellent speller. Suddenly, it's all in question.

 

She's also become very defiant at home. I'll tell her to do something and she will cross her arms and say, "No!" and she is having these tantrums now that I've never before seen with her. She's had maybe 2-3 tantrums in her entire life before... now, she's having sometimes that many in one evening, with kicking and saying that she hates me and I hate her. I've never seen her like this.

 

She seems to have to go potty almost all the time, no UTI, we checked that. Occasionally, during the day, she will shake her head, hands and legs... says she feels like she needs to shake them. She's also been having trouble with focusing/attentiveness in class this year, as well as keeping her things organized... so much so that I was having her evaluated for ADD.

 

I know something is very wrong with her. I've been reading about PANDAS and it seems to make sense, but her MD said it is not definitive one way or the other, so I'm not sure if I will be able to get support for her based on that. She is also seeing a counselor and I have an appointment for me to see her alone tomorrow before my daughter's regular appointment later in the week so we can discuss all this as I want to know how on earth I can best support my child. She is really struggling with school and I am uncertain how to help her. Homework takes literally hours every night and she is not always completing all of it. There are nightly battles and she is so frustrated, anxious, worrying about so many things...

 

Getting her to school in the mornings is a whole other battle. I've decided to start having her sleep in the clothes she will wear the next day. This morning, she sat on the potty and refused to stand; grabbed the seat and would not let go. I finally got her through that and we got her clothes, then she scooted under the covers, grabbed the comforter and would not let go... said she had to go to sleep. I wound up dressing her.

 

She will sometimes refuse to eat and she has hypoglycemia so that is not an option. I emailed the nurse, her teacher and the guidance counselor about that one to see if I can bring her to school to eat so she has some transition time there as she also wants me to stay in school with her the whole day lately. I could also walk her to class, which seems to help a bit... or maybe she is just too embarrassed to make a scene in front of her classmates, I'm not sure which, but at least she is in the door by then.

 

Can anyone offer me any suggestions? We are all completely exhausted and drained over here... her included... which, as far as I can tell, only exacerbates her condition, but she's having trouble sleeping at night also.

 

Sorry this is so long... Thanks!!

 

 

Her behavior is so very much like my daughter Gaby's was last year when she first started this. Since then her symptoms have changed and she has gotten better, than worse again, then better. Don't believe your daughter when she says other kids are starting trouble or that the teacher is mad at her about something. My daughter used to be completely convinced that her twin was touching her food and making it taste bad so she wouldn't eat. She also said that her twin was being mean to her. She was so convincing that if you weren't right there and saw that it wasn't true, you would definitely believe her. Your daughter believes whatever it is that she is saying, but it most likely is not true.

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Oh, gosh... to flat out not believe her at all is a huge step for me. This child has been so easy and very trustworthy up to this point. She is actually the one who has been bullied in the past. I do realize that there is that possibility now because of the current situation as I have seen some rage-like tantrums at home, so I'm not saying that I believe her no matter what at the moment and I certainly realize that her perceptions are a bit off.

 

Further... I hadn't mentioned this yet, but I'm an RN, so I really do recognize and realize that things are really not right in her brain right now. I realize she is a very sick little girl at this point... I'm just saying that it is heart-wrenching for me that it has come to this and I so wish there were something I could do to fix this for her... it was so much easier when I could just wrap my arms around her and make everything better, you know? Ok, sorry, having a moment here... it's just been really challenging and it kills me seeing her struggle with this and not being able to help and to be honest, I really miss her and have no idea if that 'her' will ever return, so I am accepting and loving my now, special needs daughter, but my heart still breaks and worries for her, if that makes sense.

 

 

My 9 yo daughter has been like a different child for about the last month. She had strep/scarlet fever about 3.5 weeks ago, then tested + for strep again on Friday. He said that she *might* have PANDAS.

 

I was trying to convey to her pediatrician how different she has become... she has always been one of the top students in her class, she's in an advanced math class, a gifted reading class and generally is an A, occasionally B student. Suddenly, she is struggling in school to the point that she is having trouble with simple subtraction, forget multiplication! Also, putting words in alphabetical order, she insists is soooo hard... she's been reading about 3-4 grade levels above her grade for about 3 years, has a very advanced vocabulary and has always been an excellent speller. Suddenly, it's all in question.

 

She's also become very defiant at home. I'll tell her to do something and she will cross her arms and say, "No!" and she is having these tantrums now that I've never before seen with her. She's had maybe 2-3 tantrums in her entire life before... now, she's having sometimes that many in one evening, with kicking and saying that she hates me and I hate her. I've never seen her like this.

 

She seems to have to go potty almost all the time, no UTI, we checked that. Occasionally, during the day, she will shake her head, hands and legs... says she feels like she needs to shake them. She's also been having trouble with focusing/attentiveness in class this year, as well as keeping her things organized... so much so that I was having her evaluated for ADD.

 

I know something is very wrong with her. I've been reading about PANDAS and it seems to make sense, but her MD said it is not definitive one way or the other, so I'm not sure if I will be able to get support for her based on that. She is also seeing a counselor and I have an appointment for me to see her alone tomorrow before my daughter's regular appointment later in the week so we can discuss all this as I want to know how on earth I can best support my child. She is really struggling with school and I am uncertain how to help her. Homework takes literally hours every night and she is not always completing all of it. There are nightly battles and she is so frustrated, anxious, worrying about so many things...

 

Getting her to school in the mornings is a whole other battle. I've decided to start having her sleep in the clothes she will wear the next day. This morning, she sat on the potty and refused to stand; grabbed the seat and would not let go. I finally got her through that and we got her clothes, then she scooted under the covers, grabbed the comforter and would not let go... said she had to go to sleep. I wound up dressing her.

 

She will sometimes refuse to eat and she has hypoglycemia so that is not an option. I emailed the nurse, her teacher and the guidance counselor about that one to see if I can bring her to school to eat so she has some transition time there as she also wants me to stay in school with her the whole day lately. I could also walk her to class, which seems to help a bit... or maybe she is just too embarrassed to make a scene in front of her classmates, I'm not sure which, but at least she is in the door by then.

 

Can anyone offer me any suggestions? We are all completely exhausted and drained over here... her included... which, as far as I can tell, only exacerbates her condition, but she's having trouble sleeping at night also.

 

Sorry this is so long... Thanks!!

 

 

Her behavior is so very much like my daughter Gaby's was last year when she first started this. Since then her symptoms have changed and she has gotten better, than worse again, then better. Don't believe your daughter when she says other kids are starting trouble or that the teacher is mad at her about something. My daughter used to be completely convinced that her twin was touching her food and making it taste bad so she wouldn't eat. She also said that her twin was being mean to her. She was so convincing that if you weren't right there and saw that it wasn't true, you would definitely believe her. Your daughter believes whatever it is that she is saying, but it most likely is not true.

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We live in southeastern Virginia. Is a counselor able to diagnose PANDAS or must an MD diagnose it? She has been seeing a LCSW since beginning of August and I am meeting with her tomorrow alone to discuss this, so I am wondering if she might be able to help us here. I am just reaching out anywhere and everywhere I can right now... MD, counselor, school, etc.

 

I just called to check what antibiotic she took for the strep/scarlet fever... it was Omnicef. I don't recall reading in any of the literature about that being used to treat PANDAS, but we did not suspect that at the time.

 

You guys are probably going to think I am nuts, but we had the dog tested on Saturday to be sure she is not a carrier. Other than my daughter, my husband and I are the only other two in the household. It may sound crazy, but sometimes, pets can be strep carriers also so I want to rule out that possibility.

 

Thanks for the Ibuprofen and Omegas tip... those both make sense to me. Where do you find information about how much of the Omegas to give her? Did her MD provide that? I would not want to overdo as I know it can cause bleeding risk. Thanks! I am an RN, I might be able to find it in one of my drug guides, so I will check there as well.

 

I just changed her toothbrush and toothpaste (NO ONE will share her watermelon toothpaste - lol) and have a ready supply for future needs.

 

I am actually starting to suspect that she may have had this since around June of last year as she had a night-time bedwetting incident at that time, which she had never had since toddler-hood. She has had one or two more since then, as well as some during the day, although not many. Is it possible for them to have symptoms that change? Certainly nothing has been as severe as this past month, but there have been definite changes since late spring/early summer of 2008.... those were more inattentiveness and refusal to eat, convinced that she was "fat"... her BMI at the time was actually below normal healthy weight, so I was getting a bit concerned. She has since put on some weight and is at a good weight for her growth curve now, so I think we are past that, but she has retained a lot of the negative thoughts and the defiance has exploded.

 

Thanks for your input; I have so much to learn.

 

 

 

Hi Browneyesmom,

 

Your dd sure sounds like classic PANDAS. She has pretty much all the symptoms!

 

Where do you live? Maybe someone on this forum can rec. a doc who has more experience with PANDAS than your current one.

 

Our dd didn't respond to Amoxicillin. A lot of PANDAS kids don't. Other choices are Azithromycin (worked for us, 4th antibiotic we tried), Augmentin, or Keflex. Our dd (currently 8.5 years old) is still on Azith. 250mg/day. After 4 mo. of PANDAS (started with FEVER 1/08) our dd's mood improved after 4 doses of Azith, OCD/eating after 10 doses, she was about 98% better after 1 mo. She had some mild tics/movements which took 6 weeks to go away. She has had very mild recurrence of symptoms since Oct 08 (lots of strep in school, younger sister is strep carrier and often tests positive) but is overall doing well.

 

Some find Ibuprofen to be helpful. We gave that with the Azith. from mid- June until Aug...we think it helped. I think it decreases the basal ganglia/brain inflammation. Give with food if possible.

 

IMO fish oil/omega 3's are also important to help the brain heal.

 

IMO prophylactic antibiotics are critical. Some folks have also done IVIG...we are considering that.

 

I would also rec. getting other family members throat cultured to check for carriers. You should also get new toothbrushes/toothpaste 3-4 days into starting abs. Also, I don't let my kids share toothpaste tubes anymore.

 

As a note, if you culture your dd while on amoxicillin (or too soon after stopping) you can get a false negative (even though PANDAS is still full-blown). That happened to us. We don't bother to culture our PANDAS dd anymore since she is on abs, but we do culture her sister about once a month.

 

The not eating also goes along with PANDAS. Our dd ended up with full blown anorexia nervosa (at 7.5 years old!) thanks to PANDAS. She was actually in the hospital for 6 days last March for malnutrition/acute food refusal. The not eating was the worst part of PANDAS for us. She is doing well in that regard now, thank goodness.

 

Hang in there, things will get better.

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Yes, I'm aware of the IVIG and plasmpheresis. I'm hoping it doesn't come to that for her, but I am certainly thankful that research is continuing in this area. It so happens that she gets migraines and has been on 10 mg of Prozac (Fluoxetine) for about 10 months now. I read that is often what is suggested in PANDAS cases, so I'm hoping it will have some + effect, although I feel like I don't know much of anything at the moment, having only just learned the condition existed on Friday. I'm learning all I can as quickly as possible so I can so whatever I can to help her as this has been such a huge struggle for her, both at school and at home.

 

So many ideas have crossed my mind... homeschooling is one of them; however her dad and I are divorced (I am remarried, he is not) and at the moment, he does not believe she has PANDAS at all. His understanding is that the doc said he does NOT think she has it, while I understood he thinks she might have it. When I called to confirm today, I was told it is not definitive either way, but he thinks it is a possibility she might have it and he offered to write a note for school if that would help. I think it is very unlikely that her father would agree to homebound schooling right now, although I do see some benefits to it for the short-term. She has been having a great deal of separation anxiety as well as anxiety about attending school, which is very unusual for her.

 

How has your son done with homebound instruction? Do you think that has been the best option for him? Are there other options I might consider?

 

Should I consider a neurologist for her, rather than a pediatrician... we have an excellent group in town... or should she be seeing a psychiatrist for this? Exactly WHO makes the diagnosis of PANDAS? What specialist do we need to see to find out if she has this or not and get her the help she needs?

 

Thanks so much!!

 

 

Hi, browneyesmom:

 

Wow - all I can say is that your daughter's symptoms and rapid progression sound eerily similar to what we've experienced with our son (now 12, first became ill at 10). It sure sounds like classic PANDAS stuff.

 

We have also struggled mightily with school. Our son was a great student until this hit; now, since his latest exacerbation after a recent sinus infection, we can't get him to do any real homework at all. Too fuzzy, can't focus, can't process what he reads. He's mostly been doing homebound instruction (if any) for the past 2 school years. I pray you have better luck for your daughter.

 

I'd keep searching until you find a doctor who believes in PANDAS and is open-minded about how to treat it (at least willing to listen to your research or do his/her own research). That's crucial. Dr. Kovacevic (www.webpediatrics.com) is excellent, especially if you're in the Midwest (he's in Chicago); he does phone consults and will work with local doctors to coordinate treatment.

 

Antibiotics are crucial, too. Have to warn you: our son was originally put on Amoxil for about a year, and it never seemed to eradicate the strep. His symptoms just smoldered, never really resolved. As soon as the local doc decided we should discontinue the abx, things went downhill, and our son soon had his worst symptom explosion ever. You might ask your doc to at least consider augmentin, and others on this forum have seen best results with zithromax. (We've been on both of these at different times in the past 6 months.) There are 3 or 4 others your doc can try if those don't work well.

 

When you see the array of symptoms you described for your daughter, and they come on that fast out of nowhere, it sure sounds like PANDAS. Dr. K told us that "nothing else happens that fast with so many neuropsychiatric symptoms at once."

 

One other thing we learned the hard way: be very, very cautious about psych meds if a doc urges you to try them. Ativan and zyprexa literally drove our son over the edge and made a bad situation much worse. Some psych meds really help some kids, I've heard, but it's prudent to ask the doc to start with the lowest possible dose and ramp up very slowly.

 

Hang in there. With a good doc, good antibiotics, and some time, things should improve. There are options like IVIG and plasmapheresis if things get really rough. I think you'll find lots of good info (and lots of sympathy) on this forum! (It's been a sanity saver for my wife and me.)

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Hi Browneyesmom:

I am sorry to hear what you and your daughter are going through. I just wanted to comment after reading your posts. What you have described with your daughter definitely sounds like PANDAS and very similiar to my daughter, who is now 12 1/2, but diagnosed at age 5 with PANDAS. Amoxicillin was extremely ineffective for strep in my daughter's case. I would get a throat culture on her a few days after completing ten days of Amoxicillin and she would still be positive. We then switched to Augmentin, which was effective for a while. She had a T & A when she was 6, after which time she did not get strep for 1 1/2 years. Since then we have found Keflex to be effective , but Azithromycin more effective. I think alot of PANDAS kids have intracellular strep and that is why Zith works better. There are lots of supplements that can help alot, BUT the bottom line is doing whatever you can to keep them from getting strep, which means prophylactic antibiotics. I read that you said you are an RN- I am also. I think it is shamefully disgusting what some parents (a lot of PANDAS parents) have to go through to get antibiotics for their children. Maybe the fact that you are an RN will help you in your quest, it has defintiely helped me to get doctors to listen. I made the mistake about not being agressive enough about her antibiotics. We did not do prophylactic antibiotics for a long time and I am really afraid she may have some lasting damage from that. My doctor at the time would give me antibiotics when she had strep, but that was just not enough.

Colleen

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Dear BrowneyesMom--

 

I cannot tell you how my own heart sank when I read your post--and I am sure I am not alone...

 

I am so sorry you have been going through this trial. Hang in there--

The good news is that there is "some" information that holds potential for helping--

I suggest carefully reading Dr. K.'s site, and find a doctor as soon as possible (start calling offices if you have to) that has treated someone with PANDAS issues in the past...and then start looking for a second opinion if you need to.

 

Our best helpers have been in the neurology field. Take the articles in with you, and be strong. You will not know conclusively until you see a reaction or two over time, at least that was our experience. After you have seen your child's OCD issues, etc. go away with antibiotics--well, it is hard to think otherwise.

 

There is much useful information on this forum...and people with a great deal of insight and experience.

 

T.Mom

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Our dd is also on 10mg prozac/day. When she was in the hosp. last March (inpatient eating disorder clinic) they started her on Lexapro. We had to discontinue the Lexapro due to serotonin syndrome (akathesia, increased irritibility/defiance, agressiveness, dilated pupils) in May. Unfortunately, when we stopped the Lexapro her anorexia nervosa came back in full force (her only food some days were 2 pieces of bread /24 hour period) and she also had severe withdrawals (headache, flu-like symptoms) so we started the prozac to ease that. She is tolerating that dose well and it seems to help with some pre-existing social anxiety.

 

Funny you mention your dd being on Prozac for migraines...I was just thinking of trying 5 HTP myself for my migraines.

 

Our dd's first PANDAS episode was (we think) urinary as well. When she was 4.5 years she suddenly started acting like she had a bladder infection. Urinalysis, urine culture was all neg. A few days later she came down with a high fever, which in hindsight we think may have been strep. Or course, nobody did a throat culture so we'll never know for sure!

 

Re: docs we've seen.

 

Psychiatrist: Our child psychiatrist (OCD specialist with PANDAS experience) was probably the most helpful in that she really believed in the PANDAS diagnosis and prophylactic abs when all the other docs (our ped and eating disorder docs) were saying nay to the prophylactic abs. On the downside, there are many psychiatrists that don't know much about PANDAS and many won't rx the antibiotics (but like to rx the psych. drugs!).

 

Neurologist: Be aware that many neurologists "don't believe" in PANDAS. Ours was okay. We didn't find her particularly knowledgeable. She said we were the 2nd case she'd felt was truly PANDAS in 10 years. It was helpful though, that she agreed we should stay on the Azith, which our ped was nervous about. A neurologist is also useful if you want to do any imaging (eg. MRI). Dr. Trifiletti (NJ) is very PANDAS knowledgeable http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm although that is still far for you.

 

Rheumatologist: The pediatric rheumatologist also agreed with continuing the Azith. She didn't know a lot about PANDAS either...she asked my husband why he was there b/c he already knew so much! Basically, we needed a couple of specialists to confirm our use of Azith. (which was making our ped nervous).

 

Beware of any doc that says "they know all about PANDAS" (often they don't) or says PANDAS should be treated "just like any other case of OCD" (or anorexia, or tics, or whatever!).

 

Re Omega 3's: I like Carlson's lemon flavor fish oil for Omega 3's. I would aim for 1000-2000mg /day. I don't know if others are giving more? (I know some people do flax seed oil instead. That doesn't have the DHA, so I don't know if it quite the same thing.) I also buy the eggs (in California they have them at Whole Foods) that have Omega 3 DHA in them.

 

I should also mention that many (most?) of us who have kids on antibiotics also give them probiotics.

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Should I consider a neurologist for her, rather than a pediatrician... we have an excellent group in town... or should she be seeing a psychiatrist for this? Exactly WHO makes the diagnosis of PANDAS? What specialist do we need to see to find out if she has this or not and get her the help she needs?

 

Thanks so much!!

 

I think the right doctor/specialist to dx PANDAS is one who believes in it, 1st of all, and eithe knows what treatments to try or will look in to finding out. You want a doctor who has an angel complex, rather than a God complex.

My experience with my daughter (she already had an autism dx, which greatly complicated things):

 

At age 10, I found an angel pediatrician who was willing to try to find what was causing her "autistic" behaviors. I had done some reading about PANDAS and asked him for a strep test just to check. He thought it highly unlikely-she had no classic strep symptoms-but, he complied and lo and behold, it was positive. We then spent a year or so trying to eradicate the strep, which promptly returned 3 to 4 days after finishing a course of abx (we tried almost all of them). He had heard of PANDAS, and did some research on his own, but lets face it, there is a lot of info out there and so many of the studies on what to do are inconclusive- Swedo's own recommendation was to treat the OCD psychiatrically, as you would any OCD. Without an RF, SC, or (I forget)-the kidney problem from the strep, the pediatrician could not justify to his superiors (or the insurance co.), the profilactic antibiotics. So, he sent us for back-up, first to an ENT, who agreed to a tonsilectomy, which didn't get rid of the strep, but has greatly reduced her sinus problems. The ENT did not believe in PANDAS, thought we should see a psychiatrist...Next we were sent to an immunologist, who had never heardof PANDAS, but we wanted to see if he could find a reason why my daughter's immune system was not fighting this off, and possibly get a recommendation for IVIG. The immune testing included a pneumovax challenge, which showed only a weak immune response. It was repeated with a stronger response the 2nd time. They claimed to have fixed her immune system by stimulating it to an adequate response. She was pronounced a strep "carrier" and we continued with bouts of chronic strep with the only symptoms being behavioral. Recommendation for IVIG was denied, saying it would just be giving her back what she already had. Next we saw a rheumatologist, who basically thought I was making everything up, had never heard of PANDAS and thought I should spend less time on the internet and just accept that my daughter is autistic and get over it. He did order some testing, but I refused to go back and see him again, so, picked up the test results and was referred to a pediatric rheumatologist (new, the only one in town). He'd sort of heard of PANDAS, but really seemed to be checking her out more for Rheumatoid arthritis (she has had some strange joint pains several years earlier). She doesn't have RA (I knew that) and he thought PANDAS was so rare that it would be some kind of once in a lifetime experience to actually find a case. He said it wasn't PANDAS because her ASO and antiDnase titers were not elevated. I just finally told him, "I don't care if you call it PANDAS or not, what we know for sure is she has something that causes these bizarre behaviors and whatever it is seems to respond to antibiotics." So, he said he was willing to prescibe a 6 month trial of prophilactic abx. (penVK). So that was all the regular pediatrician needed was the back up of a specialist to put my daughter on proph. abx. We started with the penvk, but while on that the streppy behaviors came back and a rapid strep came back with a weak positive. So, I was given zith and told to resume the penVK when that was finished. Her improvement on zith was drastic! So, back we went to the pediatrician and he agreed to use zith prophilactically. My daughter still doesn't have an official dx of PANDAS, but the treatment is helping so I don't care.

 

She spent so many years being miserable before we even knew about the strep problem (she had never once been tested for strep before age 10, even when she did have classic symptoms). I look at pictures of her over those terrible years...she was so ill looking and so sad. She even got kicked out of a private autism school because of her "oppositional behaviors." We tried risperdal, which made her worse, though it seemed to have a placebo effect on the school people. In the final analysis, zithromax has been the best at mood stabilizing. Oh, yeah, somewhere in there we also saw a neurologist-not for the strep though, she was having terrible headaches with extreme photophobia- turns out she was also having seizures.

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Hello, you have found the right place to hear about PANDAS from a parent's perspective. I have to commend you on finding information quickly. I am sorry to hear about your recent struggles.

 

My son started with the PANDAS chorea movements and blinking after strep and fevers at the age of thirteen months. We immediately went to several neurologists. One suspected PANDAS but all of the neurologists wanted to wait and see how he responded. They did do CAT and EEG but both were negative. He blood work showed elevated titers. However after each strep infection he would repeat the same symptoms of hyperness, irritability and these tics. Then at age four he exploded in symptoms after I got him a flu shot. He was hyper and wanted to urinate every minute. Then he started the seperation anxiety and mood rages and compulsive interests. All this time we had continued with the neurologists and they had offered no treatments. In between episodes he would seem okay again. But each time he was sick these symptoms lasted for like twelve weeks. Turning five was pivitol. He got his K immunizations and it seemd to push him over the edge. It seemed he was always hyper, and moody and difficult, he started cracking his fingers and toes all the time, and had poor attention, plus fixated interests. Finally I went to an immunologist that tried the Pen VK. It didn't seem to help the urinary frequency and he wasn't getting better between episodes anymore. That immunolgist refused to try any other antibiotics. Then I found a different immunologist who would try Omnicef and it took the urge to urinate went away and helped with the tics. We then went to a psychiatrist Dr. T Murphy who studies PANDAS. She suggested Augmentin or Omnicef during episodes. Then our Neurologist finally put him on Abilify at age six for the moods and tics. He didn't believe in the PANDAS though. We even tried a DAN! that gave him supplements to take away the heavy metals and yeast overgrowth. He even went on a GF CF diet. Then the immunologist left his practice and I had to count on the pediatrician to write the Omnicef. I have been trying to get Azith but have not found a Dr. to prescribe it as of yet. I called sveral Dr's at Clev Clinic Fri and none of them wanted to treat PANDAS. I have spoken to Dr. K and he is helpful but far away and if we don't go there I have not found a Dr. to follow his advice which is a steroid burst and IVIG. Currently we are seeing a child psychiatrist and child psychologist. They have started him on Concerta now with the Abilify and Omnicef. They are treating individual symptoms. The psychiatrist will not write the script for antibiotics though. It is very tricky when so many Dr's don't believe or know how to treat PANDAS. The hardest part has been the moods and rage for us. We are currently using rewards to try to reverse neg behaviors. The school is a another issue. My son is good behaved there so they are not on board about getting help for his school work. He has trouble with his focus and does not have learning disibilities so he has not qualified for help despite his diagnosis. Everthing has been hard and this group is the best thing for support you can find!

 

Best of luck. Please keep us informed of your progress.

Michele

My 9 yo daughter has been like a different child for about the last month. She had strep/scarlet fever about 3.5 weeks ago, then tested + for strep again on Friday. He said that she *might* have PANDAS.

 

I was trying to convey to her pediatrician how different she has become... she has always been one of the top students in her class, she's in an advanced math class, a gifted reading class and generally is an A, occasionally B student. Suddenly, she is struggling in school to the point that she is having trouble with simple subtraction, forget multiplication! Also, putting words in alphabetical order, she insists is soooo hard... she's been reading about 3-4 grade levels above her grade for about 3 years, has a very advanced vocabulary and has always been an excellent speller. Suddenly, it's all in question.

 

She's also become very defiant at home. I'll tell her to do something and she will cross her arms and say, "No!" and she is having these tantrums now that I've never before seen with her. She's had maybe 2-3 tantrums in her entire life before... now, she's having sometimes that many in one evening, with kicking and saying that she hates me and I hate her. I've never seen her like this.

 

She seems to have to go potty almost all the time, no UTI, we checked that. Occasionally, during the day, she will shake her head, hands and legs... says she feels like she needs to shake them. She's also been having trouble with focusing/attentiveness in class this year, as well as keeping her things organized... so much so that I was having her evaluated for ADD.

 

I know something is very wrong with her. I've been reading about PANDAS and it seems to make sense, but her MD said it is not definitive one way or the other, so I'm not sure if I will be able to get support for her based on that. She is also seeing a counselor and I have an appointment for me to see her alone tomorrow before my daughter's regular appointment later in the week so we can discuss all this as I want to know how on earth I can best support my child. She is really struggling with school and I am uncertain how to help her. Homework takes literally hours every night and she is not always completing all of it. There are nightly battles and she is so frustrated, anxious, worrying about so many things...

 

Getting her to school in the mornings is a whole other battle. I've decided to start having her sleep in the clothes she will wear the next day. This morning, she sat on the potty and refused to stand; grabbed the seat and would not let go. I finally got her through that and we got her clothes, then she scooted under the covers, grabbed the comforter and would not let go... said she had to go to sleep. I wound up dressing her.

 

She will sometimes refuse to eat and she has hypoglycemia so that is not an option. I emailed the nurse, her teacher and the guidance counselor about that one to see if I can bring her to school to eat so she has some transition time there as she also wants me to stay in school with her the whole day lately. I could also walk her to class, which seems to help a bit... or maybe she is just too embarrassed to make a scene in front of her classmates, I'm not sure which, but at least she is in the door by then.

 

Can anyone offer me any suggestions? We are all completely exhausted and drained over here... her included... which, as far as I can tell, only exacerbates her condition, but she's having trouble sleeping at night also.

 

Sorry this is so long... Thanks!!

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The thing that all of these kids have in common is a sudden onset of odd behaviors and symptoms which vary among the kids and can change at various times in even the same child. During one episode you might see more tics and compulsive behaviors, the next time less of that and more raging or mood swings.

 

What they do not have in common is what works to diffuse these behaviors. If you look at some of the old posts here, you will see that everyone has their own version of which antibiotic helps their child and which one definitely doesn't. It's never the same. The reason is that not all of the children react to the same antigen. Some react only to strep (and sometimes to specific strains of strep) and so they seem to do better on zithro. Some (like my daughter) react more to the herpes simplex virus, but can also react to strep and some other minor viruses. Parents have had good luck with keflex, penVk, some with augmentin, zithro, etc. Because each child is so different in that respect, it's almost like a trial and error. If one abx doesn't work, you try another one. Unfortunately if the child reacts to more than strep, then you will see the behaviors even when they're on abx, and then you have to guess at what the trigger is at that time.

 

Since almost anything that produces an inflammatory response in the immune system can trigger this, it is really hard to narrow it down. As the body's defenses are stimulated to attack the antigen, they also attack self - in other words neurons (primarily in the basal ganglia, but also in a few other structures of the brain). Depending on what area of the brain is attacked - will determine what kind of behavior changes you will see at that time - whether its movement related (tics), OCD behavior, or mood swings. Sleep seems to be compromised in most of the kids.

 

None of the doctors (even those very familiar with PANDAS) will tell you that there is a cure for it. IVIG helps some kids (and a lot of it is dose dependent), plasmaphoresis has been helpful, but is more invasive. Many kids outgrow it by puberty, but I have read accounts where it goes beyond that into the teens and early adulthood. I pray that there will be more research on this in the near future to come up with something that definitely will cure this, but I think that not enough people are even aware of how prevalent this is becoming. Everyone still talks about it as if it were so rare and there's apparently not enough interest among researchers to do anything about it. If the general public were educated about this, more parents who have not had the good luck to find these forums might come forward and if all were heard, it could bring about some change in how we are treated by the health care community. (anybody know how to get in touch with Oprah?)

 

In the meantime, while we are waiting for the immune system to fix itself, we have to deal with the symptoms. Most of the mainstream docs will simply point you towards a psychiatrist because if they don't have a cure - they say it's psychosomatic.

You will see from earlier posts here that most of the psych drugs will have an opposite effect on these kids. In other words - those meds designed to tranquilize or calm an individual actually get these kids agitated (I've had that personal experience with several of those drugs with my daughter). In desperation you may find yourself trying some of them and hopefully you might find one that gives you some relief with your child - some people here have done that. I always worry about long term effects and try to find something that will do the same thing without all the negative feedback. The DAN doctor that has been very supportive throughout all this recommends a combination of 5HTP (for the first 2 weeks), then adding inositol. 5HTP helps the body to make more serotonin, then inositol helps the body to utilize it more effectively (it lifts it off the platelets where it is stored). The combination of these two is supposed to help with sleep, OCD and anxiety. Ultimately that might help with moodswings and anger too. In this respect it works a lot like prozac but without the side effects. Pat

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