Jump to content
ACN Latitudes Forums

*might* have PANDAS ?


Recommended Posts

I should probably add that we think Azith. worked (for us) for 2 reasons.

1) Azith. gets intracellular strep. Our non-pandas younger dd is a strep carrier and we also believe our PANDAS dd is a strep carrier as she still cultured positive 2 mo. after the 1/08 FEVER. Strep carriers tend to have intracellular strep which many antibiotics can't reach.

2) Azith. is immune modulating, so it may help correct the abnormal immune response of PANDAS kids.

 

We had already tried Augmentin, Amoxicillin, and Cefuroxime (a cephalosporin, like Kelfex but stronger) by the time we "disocovered" Azith. Augmentin was the first ab we tried. It helped dd's mood but she still had lots of OCD/pandas behaviors. She regressed on amoxicillin. Also, Augmentin didn't clear her strep carrier sister of strep, but Azith. did.

 

That said, there are strains of strep that are resistant to Azith. (more common in certain parts of the country)...so some people find a cephalosporin (eg Keflex) works when Azith. doesn't.

 

We think our dd has mild symptoms (despite being on Azith.) when exposed to strep b/c the antibiotic doesn't prevent colonization, just infection. So, even small amounts of strep come in contact with her (throat etc) then her immune system responds. The Azith. does help greatly, and keeps things from getting full blown.

 

We are not aware of our dd responding to other illnessess (although she hasn't been sick with a virus/etc. all year, knock on wood!). Her sister has had a few colds, but she hasn't. Not all PANDAS kids are the same here. Some definitely respond to other illnessess. Maybe she would if she got really sick with something.

Link to comment
Share on other sites

  • Replies 34
  • Created
  • Last Reply

Top Posters In This Topic

Another thing to mention is the deterioration of handwriting during the episodes. My son has shown delays in visual, gross and fine motor skills. I am guessing this is in response to the brain/strep episodes. This was also something a PANDAS researcher T. Murphy, brought to our attention as an area to watch and treat with OT. I always new he was not very good at writing/drawing but until we had it checked out at age 5, I did not realize the extent he was affected by it. They call it hyptonia, and dysgraphia. That is one area he was able to get assistance in the school too. We do Ot twice a week. He also needed glasses for the visual processing trouble.

 

At this point in time I see fewer times he is tic/symptom free. The antibiotics are not taking the tics and the emotional liability away. He gets so caught up on certain ideas and seems hyperfocused. I would love to try the azith but have not been able to get it prescribed. Some here were lucky to get Dr's to try it others are more reluctant. It would make sense to me if it is intrecellular why it would help these kids who have brain inflammation.

 

Michele

I should probably add that we think Azith. worked (for us) for 2 reasons.

1) Azith. gets intracellular strep. Our non-pandas younger dd is a strep carrier and we also believe our PANDAS dd is a strep carrier as she still cultured positive 2 mo. after the 1/08 FEVER. Strep carriers tend to have intracellular strep which many antibiotics can't reach.

2) Azith. is immune modulating, so it may help correct the abnormal immune response of PANDAS kids.

 

We had already tried Augmentin, Amoxicillin, and Cefuroxime (a cephalosporin, like Kelfex but stronger) by the time we "disocovered" Azith. Augmentin was the first ab we tried. It helped dd's mood but she still had lots of OCD/pandas behaviors. She regressed on amoxicillin. Also, Augmentin didn't clear her strep carrier sister of strep, but Azith. did.

 

That said, there are strains of strep that are resistant to Azith. (more common in certain parts of the country)...so some people find a cephalosporin (eg Keflex) works when Azith. doesn't.

 

We think our dd has mild symptoms (despite being on Azith.) when exposed to strep b/c the antibiotic doesn't prevent colonization, just infection. So, even small amounts of strep come in contact with her (throat etc) then her immune system responds. The Azith. does help greatly, and keeps things from getting full blown.

 

We are not aware of our dd responding to other illnessess (although she hasn't been sick with a virus/etc. all year, knock on wood!). Her sister has had a few colds, but she hasn't. Not all PANDAS kids are the same here. Some definitely respond to other illnessess. Maybe she would if she got really sick with something.

Link to comment
Share on other sites

browneyesmom-

I just wanted to offer some support and echo what everyone here is saying. I feel so bad reading these posts sometimes that I have no words and don't know how to respond.

I find it hard to get an actual 'diagnosis' of PANDAS, and my child has even had IVIg because of it. The closest thing we have is 'autoimmune disorder'. As far as healthcare providers, Dr. K and a pediatric rheumatolgist were the biggest sources of help for my child. Also a pediatrician who specialized in Lyme disease was helpful, believed it was PANDAS and ordered TONS of labs for us. But in the end our (eventual) pediatrician is who I credit with saving my dd's life by basically listening to the advice, thinking outside the box (RISKS VS POSSIBLE BENEFITS really isn't outside the box but getting some doctors to think that way can be hard at times) and like someone else said finding that doc who wants to be an angel, not a God. But I will tell you we literally travelled all over Italy and Germany and eventually had to make our way back to the states until we could find some help. (we were living in Italy at the time when my dd got sick)

In addition to prophylactic antibiotics and antivirals, I give my dd 1200mg of OMEGA 3 twice daily, also probiotics from Klaire labs, Mastica, Immudyne immune support Macroforce PLUS Ip6, and Ola Loa multivitamin drinks. I did give ibuprofen for about 2 months but we stopped that after IVIg. IF things get worse for my child I am going to try Transfer Factors, but am waiting on that for now. We did homebound school for a while but that was because school eventually just wasn't possible for my child until just recently. But for a long while my dd was able to maintain at school, sorta.

My thoughts are with you and all the rest of us. Hang in there. I'm glad you found this board; I know, it's been extremely helpful to me.

Link to comment
Share on other sites

Browneyesmom,

I live in central Virginia. Where in SW VA do you live? Something that has been essential for some of the parents on this forum is having their physician call Dr. James Leckman at Yale, who will set them staight as to treating PANDAS with antibiotics. I would highly encourage you to do this as antibiotics are so crucial in PANDAS. In fact, my sister's daughter was just diagnosed with PANDAS and the only thing that FINALLY got her to give them Zithromax, was calling Dr. Leckman. My sister's doctor has been aware of PANDAS for years b/c of my children (my sister let her doctor know about what my kids were going through) and she STILL would not completely "buy into" the fact that my niece has PANDAS. One short phone call with Dr. Leckamn changed all of that.

Colleen

Link to comment
Share on other sites

I just heard about your post from a group of parents that I found out about this week! My son has been having problems since 2nd grade...5 years ago! It started with behavioral problems, which were diagnosed as seizures (he does have abnormal brain waves, that indicate frontotemporal lobe seizures). Then he had the tics and OCD. The behavior was horrible...just like you describe, but no one could get to the bottom of it. School-wise has been a nightmare. My former A student is now getting D's and F's, and the school district is fighting us (we do have a lawyer). We got the diagnosis of PANDAS last year, but everytime he stops taking antibiotics it gets worse. He was even hospitalized over New Years vacation for 4 days, with possible Rhematic Fever at a MAJOR children's hospital, where the neurologist told us that PANDAS doesn't exist. After I argued with him, he said that even if it is PANDA (no "S") no one at this major hospital treats it (turns out there is a doctor that we have an emergency appointment with tomorrow.) He now has choreiform movements (may explain your child's symptoms of needing to move...he needs to all the time...it is different than his tics).

 

My point is...don't mess around with this. Get on it now. There is a Dr. Leckman at Yale University who is doing a study. He is legitimate. Call him. There is also a doctor in the Psychiatric Department at CHOP (Children's Hospital of Philadelphia) if that is closer or easier for you (Dr. Elia). Call her if it's easier. But, again, we had no choice but to wait this long...we didn't know what it was for many years, because we thought it was only seizures and anxiety, and none of our doctors ever mentioned the word: PANDAS.

 

Good luck.

Link to comment
Share on other sites

I suppose you meant this in part, as something said in jest... but you are seriously onto something here. If the news media were to start reporting on this, it would be enormously helpful! What is Dr. Sanjay Gupta up to these days? I just sent an email to CNN asking them to ask him to consider investigating and reporting on this. I hope it goes somewhere... if anyone wants to follow up and send more emails to CNN on this, please be my guest! The more we can increase awareness, the more it may help! What a great idea, Pat!!!

 

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?)

 

Pat

Link to comment
Share on other sites

I have to tell you that the brain inflammation has me really concerned in all this and I want it arrested before it does any long-term damage. I did start her on ibuprofen and I am communicating with someone else who may be able to help me.

 

Her handwriting has not been so great and before I knew about PANDAS, I would have her re-write things, but I decided to let that go for the moment due to the severity of the other issues.

 

When I met with her counselor on Tuesday, she said that she does not see the repetitive compulsive behaviors, so she questions if she really has PANDAS. Sigh... ok... fine... if it is not PANDAS, I don't want to treat for the wrong thing, but *something* is wrong with my daughter.

 

I did inquire if it is possible to have PANDAS and not have the compulsions of OCD, but have so many of the other symptoms, but she said she does not know as she is not that familiar with it.

 

 

 

Another thing to mention is the deterioration of handwriting during the episodes. My son has shown delays in visual, gross and fine motor skills. I am guessing this is in response to the brain/strep episodes. This was also something a PANDAS researcher T. Murphy, brought to our attention as an area to watch and treat with OT. I always new he was not very good at writing/drawing but until we had it checked out at age 5, I did not realize the extent he was affected by it. They call it hyptonia, and dysgraphia. That is one area he was able to get assistance in the school too. We do Ot twice a week. He also needed glasses for the visual processing trouble.

 

At this point in time I see fewer times he is tic/symptom free. The antibiotics are not taking the tics and the emotional liability away. He gets so caught up on certain ideas and seems hyperfocused. I would love to try the azith but have not been able to get it prescribed. Some here were lucky to get Dr's to try it others are more reluctant. It would make sense to me if it is intrecellular why it would help these kids who have brain inflammation.

 

Michele

I should probably add that we think Azith. worked (for us) for 2 reasons.

1) Azith. gets intracellular strep. Our non-pandas younger dd is a strep carrier and we also believe our PANDAS dd is a strep carrier as she still cultured positive 2 mo. after the 1/08 FEVER. Strep carriers tend to have intracellular strep which many antibiotics can't reach.

2) Azith. is immune modulating, so it may help correct the abnormal immune response of PANDAS kids.

 

We had already tried Augmentin, Amoxicillin, and Cefuroxime (a cephalosporin, like Kelfex but stronger) by the time we "disocovered" Azith. Augmentin was the first ab we tried. It helped dd's mood but she still had lots of OCD/pandas behaviors. She regressed on amoxicillin. Also, Augmentin didn't clear her strep carrier sister of strep, but Azith. did.

 

That said, there are strains of strep that are resistant to Azith. (more common in certain parts of the country)...so some people find a cephalosporin (eg Keflex) works when Azith. doesn't.

 

We think our dd has mild symptoms (despite being on Azith.) when exposed to strep b/c the antibiotic doesn't prevent colonization, just infection. So, even small amounts of strep come in contact with her (throat etc) then her immune system responds. The Azith. does help greatly, and keeps things from getting full blown.

 

We are not aware of our dd responding to other illnessess (although she hasn't been sick with a virus/etc. all year, knock on wood!). Her sister has had a few colds, but she hasn't. Not all PANDAS kids are the same here. Some definitely respond to other illnessess. Maybe she would if she got really sick with something.

Link to comment
Share on other sites

Actually, that is who I am working with... someone who works with him, who is working on the study he is directing at Yale. I understand he is unavailable right now, but will be back early next week, so I am hoping that will help.

 

Thanks for the mention though... I would have wanted to know if someone had not already told me - you guys are AWESOME here - thank you so very much for all the information and support!!!

 

 

Browneyesmom,

I live in central Virginia. Where in SW VA do you live? Something that has been essential for some of the parents on this forum is having their physician call Dr. James Leckman at Yale, who will set them staight as to treating PANDAS with antibiotics. I would highly encourage you to do this as antibiotics are so crucial in PANDAS. In fact, my sister's daughter was just diagnosed with PANDAS and the only thing that FINALLY got her to give them Zithromax, was calling Dr. Leckman. My sister's doctor has been aware of PANDAS for years b/c of my children (my sister let her doctor know about what my kids were going through) and she STILL would not completely "buy into" the fact that my niece has PANDAS. One short phone call with Dr. Leckamn changed all of that.

Colleen

Link to comment
Share on other sites

You know... the more I learn about this, I am starting to wonder more and more about if she does indeed have it AND if she has had it longer than I had any idea.

 

I don't recall if I mentioned that in late 2006, she and I both tested + for exposure to mono. Oh, we were so sick that year. She tested + for strep... I think I lost count, but I would guess it was about 8 times that year, after that. It was constant. I would have to pull her records.

 

I do not think she has any tics now, but looking back, for a while around that time, she would blink her eyes as if she had a tic. She no longer does that now. Can the symptoms change? Recently, she has been being evaluated for ADD... mostly for inattention, but some hyperactivity as well.

 

Last night's rage was so wild. She pulls on me, kicks me, pushes me, refuses to do anything we say, yells that I don't love her, yells that I hate her... it's the most horrible thing. I could not get her to take a shower without pulling her into the bathroom and telling her if she did not cooperate that I would have to call my husband in to help. She eventually calmed down toward the end of the bath and once she got dressed, she was as if nothing had ever happened - back to her normal, happy self. Is this typical??? Within just moments of that, suddenly, she could not bear for me to leave her.

 

Her grades have dropped as well. She too, is normally an A student and has dropped a bit, but not quite as much and I hope it won't go any further as she is already very upset at where the grades are now and calling herself stupid. She's at A, B and C for this quarter that just ended, but she also got 2 needs improvement, which we have never seen before and she took that pretty hard as well.

 

I am going to get off here and call my pediatrician's office also to give him Dr. Leckman's information in hopes that he will contact him about this. He is out of the office today, but I will leave a message. Perhaps if they both have each other's info (already sent my pediatrician's to them), they will reach each other soon!

 

Thanks again so much!!!

 

 

 

I just heard about your post from a group of parents that I found out about this week! My son has been having problems since 2nd grade...5 years ago! It started with behavioral problems, which were diagnosed as seizures (he does have abnormal brain waves, that indicate frontotemporal lobe seizures). Then he had the tics and OCD. The behavior was horrible...just like you describe, but no one could get to the bottom of it. School-wise has been a nightmare. My former A student is now getting D's and F's, and the school district is fighting us (we do have a lawyer). We got the diagnosis of PANDAS last year, but everytime he stops taking antibiotics it gets worse. He was even hospitalized over New Years vacation for 4 days, with possible Rhematic Fever at a MAJOR children's hospital, where the neurologist told us that PANDAS doesn't exist. After I argued with him, he said that even if it is PANDA (no "S") no one at this major hospital treats it (turns out there is a doctor that we have an emergency appointment with tomorrow.) He now has choreiform movements (may explain your child's symptoms of needing to move...he needs to all the time...it is different than his tics).

 

My point is...don't mess around with this. Get on it now. There is a Dr. Leckman at Yale University who is doing a study. He is legitimate. Call him. There is also a doctor in the Psychiatric Department at CHOP (Children's Hospital of Philadelphia) if that is closer or easier for you (Dr. Elia). Call her if it's easier. But, again, we had no choice but to wait this long...we didn't know what it was for many years, because we thought it was only seizures and anxiety, and none of our doctors ever mentioned the word: PANDAS.

 

Good luck.

Link to comment
Share on other sites

Just got the results of the Group A Strep test on our golden retriever; it's positive. How about that? Glad I had her checked!!!

 

Ok, I need some more help. It turns out that I do not have Dr. Leckman's direct phone number at Yale, only one of the people working on the study. Is this the Dr. Leckman to whom our pediatrician should be talking? http://www.med.yale.edu/chldstdy/faculty/leckman.htm

 

If anyone can please confirm this for me, I would like to call our pediatrician, give him this information and also find out what should be done to treat the dog! Oy vey!

 

Thanks!

Link to comment
Share on other sites

Last night's rage was so wild. She pulls on me, kicks me, pushes me, refuses to do anything we say, yells that I don't love her, yells that I hate her... it's the most horrible thing. I could not get her to take a shower without pulling her into the bathroom and telling her if she did not cooperate that I would have to call my husband in to help. She eventually calmed down toward the end of the bath and once she got dressed, she was as if nothing had ever happened - back to her normal, happy self. Is this typical??? Within just moments of that, suddenly, she could not bear for me to leave her.

 

This is typical for my child, and she has the chronic strep that I believe started years before we knew what was going on. When my daughter rages, I get her to a safe place (we have a nice soft piece of furniture that works great) and hold her (yes, she beats on me,but seems to try not to-just can't help the impulse) until it subsides. Before I started doing this, I talked to her about it (following a rage) and told her that I understand this happens to her w/o her wanting it and I was going to try to help her be safe. When I'm holding her (usually have to straddle her and hold her head-pin her upper arms with my elbows beside them.) she beats on my upper arms and shoulders. But If I quietly ask her to put her arms down, she'll do it. Seconds later it happens again. But she always tries to stop when i ask her. It took me a long time to figure out that she can't stop this from happening to her. Its not a temper tantrum just to get her own way. It may have been triggered by anxiety over not getting her own way, but once it gets to the rage stage-its not about that at all anymore. Her sympathetic nervous system has gone into overdrive and there's nothing she can do until the chemicals subside.

Link to comment
Share on other sites

I have to tell you that the brain inflammation has me really concerned in all this and I want it arrested before it does any long-term damage. I did start her on ibuprofen and I am communicating with someone else who may be able to help me.

 

Her handwriting has not been so great and before I knew about PANDAS, I would have her re-write things, but I decided to let that go for the moment due to the severity of the other issues.

 

When I met with her counselor on Tuesday, she said that she does not see the repetitive compulsive behaviors, so she questions if she really has PANDAS. Sigh... ok... fine... if it is not PANDAS, I don't want to treat for the wrong thing, but *something* is wrong with my daughter.

 

I did inquire if it is possible to have PANDAS and not have the compulsions of OCD, but have so many of the other symptoms, but she said she does not know as she is not that familiar with it.

 

 

Hi, browneyesmom:

 

OCD is not required to establish a diagnosis of PANDAS. My son was originally diagnosed with ARF with Sydenham's chorea in Summer 2007 because he had polyarthritis, motor tics / choreiform movements, and emotional lability but no OCD at all. Then he had a 2nd symptom explosion on 8/17/08 (after abx were discontinued per local doc) and overnight developed violent OCD contamination fears, suicidal talk, rages, crying jags, anorexia, urinary frequency, many of the "classic" PANDAS symptoms. It was totally different from the first go-round.

 

I've since learned that this is not at all unusual for these kids. Each round of brain inflammation can attack a different portion of the basal ganglia, producing very different symptoms. That definitely does not rule out PANDAS!

 

There's so much misinformation (and garbled info) about PANDAS out there. Don't let anybody tell you it's "not PANDAS" because of one "missing symptom"... and don't let anybody tell you that "PANDAS is bunk." Everyone on this forum can assure you otherwise.

 

Trust your instincts, and your knowledge of your own child. They'll serve you (and her) well!

Link to comment
Share on other sites

When my daughter's symptoms began , they were primarily tics, night terrors, and separation anxiety. It was not until we were a month-two months into it when she started any OCD behaviors. As far as the behaviors and/or tics changing, I saw that all the time. Even within one PANDAS episode, her tics would sometimes change daily. One day she was blinking her eyes, 2 days later the eye blinking stopped and it would be throat clearing, etc... There ia a wealth of misinformation and even more ignorance on the part of the medical community when it comes to PANDAS. Just keep educating yourself as much as you can about it so you will know if you are given the wrong info about it. You will soon be the expert, not your doctor .One of the many tricky things about PANDAS is the HUGE range of symptoms.

BTW, I think you were very smart to test your dog for strep. When my daughter's symptoms started years ago, we had a Great Dane and we had him tested for strep as we were desparate to fing someone/anyone who may be reinfecting our daughter. He was negative, but I remember the vet saying that dogs can definitely be strep carriers. What antibiotic does your vet recommend? if your dog is a carrier, I would think a strong antibiotic would be needed and it would be best to keep your daughter away from him for a while until the antibiotics kick in. Good luck!

Colleen

Link to comment
Share on other sites

My son's symptoms began while having fevers from strep and they were blinking and finger chorea piano movements. Then he was crying alot and diffficult to deal with. As time went on and as he grew older and had repeat strep infections compiled with immunizations, his symptoms changed. He then had the seperation anxiety and the temper tantrums when exposed. After a few years the compulsive behaviors kicked in. He became obsessed on ideas and would melt down if we couldn't give into them. Then he started the urination frequency and the touching the ground compulsion. Each episode changed the symptoms. However the anxiety seemed to get worse also and go away a little less each time. Eventually the same with the attention issues. Now he is moody, anxious and has ADD all the time. Another thing to watch is the fine motor skills. My sons have been affected by this. His handwriting can be very messy and he can't fit things in the lines. His eyes also were affected and his visual motor skills. His tics do go away between episodes. They have changed too. He usually does the finger cracking and tip toe cracking. He seemed to get a little less better between each strep episode. It is a hard thing to understand but document each reoccurance it will really help you. You definately can get a pattern going over time. I kept a log over the years. Best of luck to you. I have never had my dog checked. Good thinking.

Michele

When my daughter's symptoms began , they were primarily tics, night terrors, and separation anxiety. It was not until we were a month-two months into it when she started any OCD behaviors. As far as the behaviors and/or tics changing, I saw that all the time. Even within one PANDAS episode, her tics would sometimes change daily. One day she was blinking her eyes, 2 days later the eye blinking stopped and it would be throat clearing, etc... There ia a wealth of misinformation and even more ignorance on the part of the medical community when it comes to PANDAS. Just keep educating yourself as much as you can about it so you will know if you are given the wrong info about it. You will soon be the expert, not your doctor .One of the many tricky things about PANDAS is the HUGE range of symptoms.

BTW, I think you were very smart to test your dog for strep. When my daughter's symptoms started years ago, we had a Great Dane and we had him tested for strep as we were desparate to fing someone/anyone who may be reinfecting our daughter. He was negative, but I remember the vet saying that dogs can definitely be strep carriers. What antibiotic does your vet recommend? if your dog is a carrier, I would think a strong antibiotic would be needed and it would be best to keep your daughter away from him for a while until the antibiotics kick in. Good luck!

Colleen

Link to comment
Share on other sites

Our pediatrician (who, btw, is wonderful) called me this morning to check on my daughter and see how she is doing. She told me yesterday that her throat still hurts and she still feels like she has strep. Usually 2-3 days into the antibiotic, she is reporting that she feels much better and one can see she is improved. Not so now. I also told him that the other issues are really not improved either and that my daughter is usually such a sweet child and this is SO out of character for her that if it is not PANDAS, then I don't know if she needs a neuro eval, brain scan or what, but something is very wrong here.

 

He indicated that PANDAS is hard to diagnose b/c of there not being a lab test; it's more of a clinical assessment. However, he does think it's certainly possible in her case. He wants us to bump up her Prozac from 10 mg to 20 mg and see if that helps (my ex (her dad) wants her off the prozac completely, so I hope this won't be an issue). I asked him about his thoughts about the Ibuprofen to reduce swelling in the basal ganglia area of the brain and he agreed that while he was not familiar with it specifically for this, it makes sense to him also and to keep her on 200-250 mg (based on her weight) for one week.

 

When I mentioned Dr. Leckman and his research, he perked up and asked for the spelling of his name. He also took down his phone number. I'm so glad we have a pediatrician who does not let his ego get in the way of his work and taking care of our child! This is not the first time I have felt this way about him! He wants me to keep her on the Amoxicilin until he speaks with Dr. Leckman, so I hope they will make contact very soon since I sent information both directions.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share


×
×
  • Create New...