PANDAS Experience - Delurking to Tell our Story

[New to PANDAS]

Hello all -

 

I first want to thank each and every person on this forum. Unknowingly, you have been an invaluable resource over the past two months. I am hoping that I can "pay it forward" by telling our story that may help someone down the road.

 

The story begins on July 7 of this year. I received an email mid-morning from the daycare director at my 4 year old's school asking if he had a bad weekend, because he was behaving very uncharacteristically for him - he had hit both of his teachers that morning, something he had never done before. The rest of the week, things only got worse. He was having raging tantrums and lashing out at friends, teachers, the director, etc. A common theme that he kept repeating was "I don't want anyone to talk to me". Up until then, he had been a social typical 4 year old and had loved school and his friends. I went through a rundown with the director, teachers and other parents to try to find out if anything had changed in the classroom - new routine, new student, new anything. Nothing had changed. The daycare director was starting to go down the path of getting a child behavior psychologist involved. I had a hard time believing, however, that my son woke up on July 7 and decided to turn into Satan's child. I truly believed it had to be something medical, so I called our pediatricians office on July 10 and desperately asked to get in the next day for a consult. I think the receptionist felt sorry for me, because I was so upset by this whole situation. When I told the daycare director that I was taking him to his pediatrician, she looked at me like I had 3 heads, because he wasn't "sick" at all.

 

So, on July 11 we saw our pediatrician for a consult. One thing I remember about that visit is that our normally calm and somewhat well behaved son was bouncing off the walls in his office. He couldn't sit still for anything. Our doctor went through the exact line of questioning I had gone through - changes in school, changes at home, etc. He examined him for any signs of sexual abuse (very creepy!). After everything was fine from that, the very first thing he says to us is "has your son been exposed to anyone with strep throat". My first thought was 'I'm telling you that my son has turned into Satan's child over the past few days and you are asking me if he has a sore throat???" I thought he was nuts. He went on to tell us about PANDAS and the overnight behavior change that can occur. He then went out to talk about lyme disease (we have an open wetlands area behind us with ticks) and several other medical conditions, including seizures, that can cause behavior changes. So, he ordered a whole slew of blood tests and an EEG. In addition, he did the throat swab in his office, but it came back negative.

 

It was a long weekend and his behavior didn't get any better. To top it off, I got very sick that weekend and felt horrible. That Monday, I went to the doctor and found out I had strep throat (throat swab tested positive). When I came home from the doctor, I had a message from the pediatrician that the throat swab they had done on Friday had cultured over the weekend (not sure that is the correct terminology) and it was positive. He prescribed omnicef for him and wanted to see him again in a few days. He started the omnicef along with a probiotic and the very first day was scary. He normally sleeps like a log, but work up twice that night screaming. He also developed a fever and had a few episodes of needing to go to the bathroom to urinate soon after urinating, but nothing came out. His behavior improved tremendously, though. When we went to the doctor again, he told us the results of the blood work were all normal except for the strep. He had strep antibodies in his blood. He was fairly certain this was PANDAS and put him on omnicef for two months.

 

I should mention that during this time, my son had started making a clucking noise with his tongue that he never made before. He definitely wasn't doing it to get attention - I would observe him and he would just be making this noise almost unconsciously while going about his day. After reading information online about PANDAS, I realized that this was probably a tic. My husband disagreed with me and said it was just a 4 year old making a new sound, but I know when he makes a sound to get a reaction from us and this was completely different. Interestingly, the tic went away about a month after it started.

 

I began to research PANDAS like a crazy lady. I wanted to learn everything about it. This helped, because within a week after starting the omnicef, I observed that he turned extremely hyper after having some grapes one afternoon. This led me to learn all about the stomach issues and "leaky gut" that can occur from the antibiotics and strep that lives in your stomach (who knew strep was in the stomach??!!). My son was definitely reacting to salicylates, so we had to change his diet to take out high salicylate foods. I found the Feingold organization and their information has been extremely helpful. I wouldn't say we are 100% Feingold, but we use it as a reference.

 

I was very concerned about damage to my son's brain from the PANDAS and also concerned about his hyperness, which hadn't been a part of his personality before. So, I started him on Kid's Calm and fish oil. The fish oil seemed to make an immediate difference in calming him down.

 

I know this is getting long, so I will try to wrap up! After the two months on omnicef, we had a decision to make - whether to leave him on daily antibiotics or not. I had strong concerns about that and so did his pediatrician. So, what we are trying is taking him off the antibiotics and having him come in once a month to have his blood tested for strep antibodies - in between visits, watch for behavior changes. After we stopped the antibiotics, I started him on Lauricidin. I figure that "natures antibiotic" may help to keep him off the need to take daily meds.

 

Incidently, when he went for his EEG in August, it came back with a slight abnormality - nothing to worry about. But, when we met with the neurologyst, the first thing he said to me was that we have an extremely smart pediatrician. He said most doctors wouldn't have thought PANDAS and wouldn't have ordered all the tests he did. After reading other PANDAS stories, I am SO thankful for him - it was literally the first thing that came to his mind.

 

So, my son is doing extremely well now. He started Pre-K at his school and is doing wonderfully. His teachers and the daycare director are amazed by PANDAS - nobody had ever heard of it before, but now they are very much aware, as well as other parents. Our only remaining "issue" is his food sensitivity. I'm hoping that improves over time, but we are able to control it with diet.

 

In summary, he is taking the following each day:

KidZyme - 2 capsules before breakfast and dinner (probiotic and enzymes to help heal stomach)

Kid's Calm - 1/2 tsp in morning and 1/4 tsp at night

Carlson's Fish Oil for Kids - 1/2 tsp in morning and 1/4 tsp at night

Lauricidin - 5-6 pellets in morning and at night

Freeda Children's Chewable Multivitamin - 1 at night

 

Again, many thanks to all of the wonderful people on this forum. I know for a fact my son would not be doing as well as he is today without your stories and experiences. I always tell people that our pediatrician pointed us in the right direction and was a lifesaver, but the internet and people's stories completed the picture and enabled us to steer ahead.

 

Karen

[bmom]

Yes, as I was reading your post, I was thinking- if only my son's pediatrician was like yours, maybe I wouldn't have had to go through fighting for antibiotics etc. Be thankful for the pediatrician for not only being so smart, but thorough!!!!

[michele]

Boy were you lucky to find a ped who had information and a belief in PANDAS. Also it is rare to find a neurologist who believes in PANDAS. We have to had to have separate Dr.'s for each part of the disorder. A neurologist for the tics/TS and neurological side effects like ADHD. An immunologist who will prescribe the antibiotics for the immune issue of the strep reaction, a ped who just refers us because she has little knowledge of the PANDAS, immune reaction or TS. It would be so much easier to find a Dr. who would address all the issues. How did your Dr. ped know about PANDAS? Had they treated it before? I am glad you are doing well off the antibiotics. We did go without the antibiotics for several years except when he tested positive to strep. However the repeat strep infections and PANDAS OCD became worse with every repeat infection. It got to the point that we needed him to not get the strep anymore. However he still gets the episodes from exposure to strep. Right today he is home with a fever and sore throat. His tonsils are enlarged. I am trying to keep him hydrated and giving Motrin every six hours. It is strange that about a week ago I started to notice him cracking his knuckles, and standing up on his tip toes to crack his toes again. He does it in a rhythmic pattern. I wonder if he was exposed to strep again. We have had the urination too and the moods. He is on daily Omnicef for the strep and Abilify for the tics/emotional liability. So far his behaviors have been good during this illness. He had a good weekend as far as moods go. I always wonder if we will need to find another Dr. to prescribe the azith in the future and or IVIG. If so I have been to so many Dr's around NE OH and I would probably have to go to Chicago Dr. K to find the nearest Dr. to treat PANDAS. Where are you from? Did your Dr. have a knowledge of what to do if your child continued the PANDAS behaviors? I am glad things have worked out for you. The people here are awesome about sharing their experiences. It really helps to have support!

 

Michele

 

Yes, as I was reading your post, I was thinking- if only my son's pediatrician was like yours, maybe I wouldn't have had to go through fighting for antibiotics etc. Be thankful for the pediatrician for not only being so smart, but thorough!!!!

[hopefulinsc]

That sounds very similar to what we went through with our daughter in July. However, we couldn't get anyone to listen to us or even believe in the remote possibility of P.A.N.D.A.s The doctors weren't even remotely concerned about the behavior change. Do you happen to live near Charlotte, North Carolina? We would love to get to a doctor that knows something about this.

 

Incidentally, our daughter also tested negative on the quick strep test, but positive on the culture. However, this test was only done because we requested it (after I had gone on line and done some research as to what could cause such abrupt behavioral changes). The pediatrician didn't put 2 and 2 together that there might be some asosciation between strep and her behavior. We had a complete 2 week remission and then she got her HEP A booster shot and now we are in another episode (less severe than the first). We have a neurologist appointment on Thursday and we are hoping someone can give us some definitive answers on how to go about treating this.

 

I'm glad to hear that you have direction as to how to handle your son.

 

 

Hello all -

 

I first want to thank each and every person on this forum. Unknowingly, you have been an invaluable resource over the past two months. I am hoping that I can "pay it forward" by telling our story that may help someone down the road.

 

The story begins on July 7 of this year. I received an email mid-morning from the daycare director at my 4 year old's school asking if he had a bad weekend, because he was behaving very uncharacteristically for him - he had hit both of his teachers that morning, something he had never done before. The rest of the week, things only got worse. He was having raging tantrums and lashing out at friends, teachers, the director, etc. A common theme that he kept repeating was "I don't want anyone to talk to me". Up until then, he had been a social typical 4 year old and had loved school and his friends. I went through a rundown with the director, teachers and other parents to try to find out if anything had changed in the classroom - new routine, new student, new anything. Nothing had changed. The daycare director was starting to go down the path of getting a child behavior psychologist involved. I had a hard time believing, however, that my son woke up on July 7 and decided to turn into Satan's child. I truly believed it had to be something medical, so I called our pediatricians office on July 10 and desperately asked to get in the next day for a consult. I think the receptionist felt sorry for me, because I was so upset by this whole situation. When I told the daycare director that I was taking him to his pediatrician, she looked at me like I had 3 heads, because he wasn't "sick" at all.

 

So, on July 11 we saw our pediatrician for a consult. One thing I remember about that visit is that our normally calm and somewhat well behaved son was bouncing off the walls in his office. He couldn't sit still for anything. Our doctor went through the exact line of questioning I had gone through - changes in school, changes at home, etc. He examined him for any signs of sexual abuse (very creepy!). After everything was fine from that, the very first thing he says to us is "has your son been exposed to anyone with strep throat". My first thought was 'I'm telling you that my son has turned into Satan's child over the past few days and you are asking me if he has a sore throat???" I thought he was nuts. He went on to tell us about PANDAS and the overnight behavior change that can occur. He then went out to talk about lyme disease (we have an open wetlands area behind us with ticks) and several other medical conditions, including seizures, that can cause behavior changes. So, he ordered a whole slew of blood tests and an EEG. In addition, he did the throat swab in his office, but it came back negative.

 

It was a long weekend and his behavior didn't get any better. To top it off, I got very sick that weekend and felt horrible. That Monday, I went to the doctor and found out I had strep throat (throat swab tested positive). When I came home from the doctor, I had a message from the pediatrician that the throat swab they had done on Friday had cultured over the weekend (not sure that is the correct terminology) and it was positive. He prescribed omnicef for him and wanted to see him again in a few days. He started the omnicef along with a probiotic and the very first day was scary. He normally sleeps like a log, but work up twice that night screaming. He also developed a fever and had a few episodes of needing to go to the bathroom to urinate soon after urinating, but nothing came out. His behavior improved tremendously, though. When we went to the doctor again, he told us the results of the blood work were all normal except for the strep. He had strep antibodies in his blood. He was fairly certain this was PANDAS and put him on omnicef for two months.

 

I should mention that during this time, my son had started making a clucking noise with his tongue that he never made before. He definitely wasn't doing it to get attention - I would observe him and he would just be making this noise almost unconsciously while going about his day. After reading information online about PANDAS, I realized that this was probably a tic. My husband disagreed with me and said it was just a 4 year old making a new sound, but I know when he makes a sound to get a reaction from us and this was completely different. Interestingly, the tic went away about a month after it started.

 

I began to research PANDAS like a crazy lady. I wanted to learn everything about it. This helped, because within a week after starting the omnicef, I observed that he turned extremely hyper after having some grapes one afternoon. This led me to learn all about the stomach issues and "leaky gut" that can occur from the antibiotics and strep that lives in your stomach (who knew strep was in the stomach??!!). My son was definitely reacting to salicylates, so we had to change his diet to take out high salicylate foods. I found the Feingold organization and their information has been extremely helpful. I wouldn't say we are 100% Feingold, but we use it as a reference.

 

I was very concerned about damage to my son's brain from the PANDAS and also concerned about his hyperness, which hadn't been a part of his personality before. So, I started him on Kid's Calm and fish oil. The fish oil seemed to make an immediate difference in calming him down.

 

I know this is getting long, so I will try to wrap up! After the two months on omnicef, we had a decision to make - whether to leave him on daily antibiotics or not. I had strong concerns about that and so did his pediatrician. So, what we are trying is taking him off the antibiotics and having him come in once a month to have his blood tested for strep antibodies - in between visits, watch for behavior changes. After we stopped the antibiotics, I started him on Lauricidin. I figure that "natures antibiotic" may help to keep him off the need to take daily meds.

 

Incidently, when he went for his EEG in August, it came back with a slight abnormality - nothing to worry about. But, when we met with the neurologyst, the first thing he said to me was that we have an extremely smart pediatrician. He said most doctors wouldn't have thought PANDAS and wouldn't have ordered all the tests he did. After reading other PANDAS stories, I am SO thankful for him - it was literally the first thing that came to his mind.

 

So, my son is doing extremely well now. He started Pre-K at his school and is doing wonderfully. His teachers and the daycare director are amazed by PANDAS - nobody had ever heard of it before, but now they are very much aware, as well as other parents. Our only remaining "issue" is his food sensitivity. I'm hoping that improves over time, but we are able to control it with diet.

 

In summary, he is taking the following each day:

KidZyme - 2 capsules before breakfast and dinner (probiotic and enzymes to help heal stomach)

Kid's Calm - 1/2 tsp in morning and 1/4 tsp at night

Carlson's Fish Oil for Kids - 1/2 tsp in morning and 1/4 tsp at night

Lauricidin - 5-6 pellets in morning and at night

Freeda Children's Chewable Multivitamin - 1 at night

 

Again, many thanks to all of the wonderful people on this forum. I know for a fact my son would not be doing as well as he is today without your stories and experiences. I always tell people that our pediatrician pointed us in the right direction and was a lifesaver, but the internet and people's stories completed the picture and enabled us to steer ahead.

 

Karen

[Diana]

Dear Karen,

 

My son (8 yr) has recovered from PANDAS - we ended up needing to do IVIG just last week. It has been 100% effective. Your work is wonderful and I hope you will keep us all posted on his continued good health. As a word of caution - re-infection with strep could re-exacerbate the PANDAS. BUT MAYBE NOT? Each child/person is different and some may be stronger than others. I have heard several cases of cessation of PANDAS and then several months later a new attack - hence the reason prophylactic antiobiotics can be helpful.

 

May I ask where you are located and the name of your doctor? Thank you. diana

 

 

we saw our pediatrician for a consult. One thing I remember about that visit is that our normally calm and somewhat well behaved son was bouncing off the walls in his office. He couldn't sit still for anything. Our doctor went through the exact line of questioning I had gone through - changes in school, changes at home, etc. He examined him for any signs of sexual abuse (very creepy!). After everything was fine from that, the very first thing he says to us is "has your son been exposed to anyone with strep throat". My first thought was 'I'm telling you that my son has turned into Satan's child over the past few days and you are asking me if he has a sore throat???" I thought he was nuts. He went on to tell us about PANDAS and the overnight behavior change that can occur. He then went out to talk about lyme disease (we have an open wetlands area behind us with ticks) and several other medical conditions, including seizures, that can cause behavior changes. So, he ordered a whole slew of blood tests and an EEG. In addition, he did the throat swab in his office, but it came back negative.

 

It was a long weekend and his behavior didn't get any better. To top it off, I got very sick that weekend and felt horrible. That Monday, I went to the doctor and found out I had strep throat (throat swab tested positive). When I came home from the doctor, I had a message from the pediatrician that the throat swab they had done on Friday had cultured over the weekend (not sure that is the correct terminology) and it was positive. He prescribed omnicef for him and wanted to see him again in a few days. He started the omnicef along with a probiotic and the very first day was scary. He normally sleeps like a log, but work up twice that night screaming. He also developed a fever and had a few episodes of needing to go to the bathroom to urinate soon after urinating, but nothing came out. His behavior improved tremendously, though. When we went to the doctor again, he told us the results of the blood work were all normal except for the strep. He had strep antibodies in his blood. He was fairly certain this was PANDAS and put him on omnicef for two months.

 

I should mention that during this time, my son had started making a clucking noise with his tongue that he never made before. He definitely wasn't doing it to get attention - I would observe him and he would just be making this noise almost unconsciously while going about his day. After reading information online about PANDAS, I realized that this was probably a tic. My husband disagreed with me and said it was just a 4 year old making a new sound, but I know when he makes a sound to get a reaction from us and this was completely different. Interestingly, the tic went away about a month after it started.

 

I began to research PANDAS like a crazy lady. I wanted to learn everything about it. This helped, because within a week after starting the omnicef, I observed that he turned extremely hyper after having some grapes one afternoon. This led me to learn all about the stomach issues and "leaky gut" that can occur from the antibiotics and strep that lives in your stomach (who knew strep was in the stomach??!!). My son was definitely reacting to salicylates, so we had to change his diet to take out high salicylate foods. I found the Feingold organization and their information has been extremely helpful. I wouldn't say we are 100% Feingold, but we use it as a reference.

 

I was very concerned about damage to my son's brain from the PANDAS and also concerned about his hyperness, which hadn't been a part of his personality before. So, I started him on Kid's Calm and fish oil. The fish oil seemed to make an immediate difference in calming him down.

 

I know this is getting long, so I will try to wrap up! After the two months on omnicef, we had a decision to make - whether to leave him on daily antibiotics or not. I had strong concerns about that and so did his pediatrician. So, what we are trying is taking him off the antibiotics and having him come in once a month to have his blood tested for strep antibodies - in between visits, watch for behavior changes. After we stopped the antibiotics, I started him on Lauricidin. I figure that "natures antibiotic" may help to keep him off the need to take daily meds.

 

Incidently, when he went for his EEG in August, it came back with a slight abnormality - nothing to worry about. But, when we met with the neurologyst, the first thing he said to me was that we have an extremely smart pediatrician. He said most doctors wouldn't have thought PANDAS and wouldn't have ordered all the tests he did. After reading other PANDAS stories, I am SO thankful for him - it was literally the first thing that came to his mind.

 

So, my son is doing extremely well now. He started Pre-K at his school and is doing wonderfully. His teachers and the daycare director are amazed by PANDAS - nobody had ever heard of it before, but now they are very much aware, as well as other parents. Our only remaining "issue" is his food sensitivity. I'm hoping that improves over time, but we are able to control it with diet.

 

In summary, he is taking the following each day:

KidZyme - 2 capsules before breakfast and dinner (probiotic and enzymes to help heal stomach)

Kid's Calm - 1/2 tsp in morning and 1/4 tsp at night

Carlson's Fish Oil for Kids - 1/2 tsp in morning and 1/4 tsp at night

Lauricidin - 5-6 pellets in morning and at night

Freeda Children's Chewable Multivitamin - 1 at night

 

Again, many thanks to all of the wonderful people on this forum. I know for a fact my son would not be doing as well as he is today without your stories and experiences. I always tell people that our pediatrician pointed us in the right direction and was a lifesaver, but the internet and people's stories completed the picture and enabled us to steer ahead.

 

Karen

[New to PANDAS]

Hi all -

 

We are located in the Chicagoland area. Honestly, it was just "dumb luck" that our pediatrician knew about PANDAS. We have been going to him for 4 years - he was recommended to me by a coworker who has used him for her two daughters. He is a teaching pediatrician and he always has interns working with him, so I think that forces him to be up to speed on the current literature. He also mentioned that he has two other PANDAS patients, both with severe tics, not the behavior issues our son had.

 

As to long term treatment - right now we are taking it one day at a time. He has only been off the antibiotics for a little over 2 weeks. I dread of course the next time he is exposed to strep. I fully realize that we may end up putting him on daily antibiotics - we just want to try this for now and see what happens.

 

Make no mistake, though, our pediatrician was no help when it came to dealing with the secondary issues, like food sensitivity. So, all of that we had to figure out and take care of on our own. Antibiotics were only part of the answer.

 

Michele - interesting about the behavior that started last week with the cracking knuckles that you noticed. I think we put our kids behavior under a microscope now! When my son was in the midst of his PANDAS episode, he kept asking us what time it was - over and over again. Keep in mind, he is only 4, so prior to that he never had been all too concerned about what time it was! It was very weird. He scared me half to death over the weekend when he asked me in the car what time it was! Turns out I think he really just wanted to know what time it was - LOL.

 

Karen

[bmom]

Just to let you know, there is a doctor right there in Chicago that seems very knowledgeable in the PANDAS. It might be worth it to meet with him. It is Dr. Kovecevic. Website is www.webpediatrics.com.

[michele]

You are right about "luck" we have been searching for 5 years and only found a Dr. who knew PANDAS by traveling from OH to Florida. However, she knew PANDAS but we came to find out she did not prescribe meds out of state and other then making a diagnosis could only recommend a handful of things , 1 being OT that he ended up really needing. Be cautious, my son in the beginning recovered completely after a few months of the strep infections. In, fact he would return to normal and I would think maybe it was all just my imagination that he had been so sick. However, with every recurrence, usually a few months down the line, the symptoms did return and each time got worse and improved less after the infection. Then at age five and a flu shot and boosters, he had the worse episode yet that lasted six months and required meds everyday since to be hold his attention and stop the tics. He has never been 100% better since. PANDAS is saw toothed in its course, better then worse with peaks and valleys. I think he has tourettes now from the PANDAS. This may be permanent. That is why I am interested in the treatment plan your Dr. might have. Who is the Dr. you are using? I am thinking a trip to Chicago may be in our near future plans.

How does Dr. K do the IVIG for those who know. Is it in his office? Is it covered by insurance? Thanks for sharing.

 

Michele

Hi all -

 

We are located in the Chicagoland area. Honestly, it was just "dumb luck" that our pediatrician knew about PANDAS. We have been going to him for 4 years - he was recommended to me by a coworker who has used him for her two daughters. He is a teaching pediatrician and he always has interns working with him, so I think that forces him to be up to speed on the current literature. He also mentioned that he has two other PANDAS patients, both with severe tics, not the behavior issues our son had.

 

As to long term treatment - right now we are taking it one day at a time. He has only been off the antibiotics for a little over 2 weeks. I dread of course the next time he is exposed to strep. I fully realize that we may end up putting him on daily antibiotics - we just want to try this for now and see what happens.

 

Make no mistake, though, our pediatrician was no help when it came to dealing with the secondary issues, like food sensitivity. So, all of that we had to figure out and take care of on our own. Antibiotics were only part of the answer.

 

Michele - interesting about the behavior that started last week with the cracking knuckles that you noticed. I think we put our kids behavior under a microscope now! When my son was in the midst of his PANDAS episode, he kept asking us what time it was - over and over again. Keep in mind, he is only 4, so prior to that he never had been all too concerned about what time it was! It was very weird. He scared me half to death over the weekend when he asked me in the car what time it was! Turns out I think he really just wanted to know what time it was - LOL.

 

Karen

[EAMom]

Michele,

 

the pediatric rheumatologist said it is the same with acute rheumatic fever...that subsequent episodes are more severe, hence the importance of preventing a reoccurence.

 

Heck, I would even do prophylactic antibiotics after IVIG (but I would switch to pen, which is narrow spectrum) since I wouldn't want dd to be the one rare case who relapses after IVIG when they get a new strep infection (after spending thousands and traveling to Chicago).

[EAMom]

This is totally not fair that all the good PANDAS docs are in Chicago!

 

You would think us folks in Northern CA would be in a good position...so close to Stanford...not!

[New to PANDAS]

Hi Michele -

 

OK, now you are scaring me! LOL Just out of curiousity, did you use anything like Lauricidin when your son was first off antibiotics??? I'm curious how helpful it will be to prevent new strep infections. Of course, it's one of those things where you'll never know what you don't know - if he doesn't get strep in the next month, would he have gotten it without the Lauricidin - who knows??

 

Our pediatrician is Dr. William Wittert. However, if my son's PANDAS returned and got worse, I would probably take him to a specialist, like Dr. K, at that point. Our ped. is definitely not a PANDAS expert or specialist. I will be eternally grateful to him for his quick thinking, but if things came back and got worse, it would be time to take him to a PANDAS specialist.

 

Also, just curious, have you been experiencing any of the food sensitivity issues?

 

Karen

 

 

 

You are right about "luck" we have been searching for 5 years and only found a Dr. who knew PANDAS by traveling from OH to Florida. However, she knew PANDAS but we came to find out she did not prescribe meds out of state and other then making a diagnosis could only recommend a handful of things , 1 being OT that he ended up really needing. Be cautious, my son in the beginning recovered completely after a few months of the strep infections. In, fact he would return to normal and I would think maybe it was all just my imagination that he had been so sick. However, with every recurrence, usually a few months down the line, the symptoms did return and each time got worse and improved less after the infection. Then at age five and a flu shot and boosters, he had the worse episode yet that lasted six months and required meds everyday since to be hold his attention and stop the tics. He has never been 100% better since. PANDAS is saw toothed in its course, better then worse with peaks and valleys. I think he has tourettes now from the PANDAS. This may be permanent. That is why I am interested in the treatment plan your Dr. might have. Who is the Dr. you are using? I am thinking a trip to Chicago may be in our near future plans.

How does Dr. K do the IVIG for those who know. Is it in his office? Is it covered by insurance? Thanks for sharing.

 

Michele

Hi all -

 

We are located in the Chicagoland area. Honestly, it was just "dumb luck" that our pediatrician knew about PANDAS. We have been going to him for 4 years - he was recommended to me by a coworker who has used him for her two daughters. He is a teaching pediatrician and he always has interns working with him, so I think that forces him to be up to speed on the current literature. He also mentioned that he has two other PANDAS patients, both with severe tics, not the behavior issues our son had.

 

As to long term treatment - right now we are taking it one day at a time. He has only been off the antibiotics for a little over 2 weeks. I dread of course the next time he is exposed to strep. I fully realize that we may end up putting him on daily antibiotics - we just want to try this for now and see what happens.

 

Make no mistake, though, our pediatrician was no help when it came to dealing with the secondary issues, like food sensitivity. So, all of that we had to figure out and take care of on our own. Antibiotics were only part of the answer.

 

Michele - interesting about the behavior that started last week with the cracking knuckles that you noticed. I think we put our kids behavior under a microscope now! When my son was in the midst of his PANDAS episode, he kept asking us what time it was - over and over again. Keep in mind, he is only 4, so prior to that he never had been all too concerned about what time it was! It was very weird. He scared me half to death over the weekend when he asked me in the car what time it was! Turns out I think he really just wanted to know what time it was - LOL.

 

Karen

[michele]

He does have some sensitivity to food coloring especially red dye. Also I notice high fructose corn syrup is another food he does not respond well with. I try to limit foods high in sugar and added preservatives too if all positive. Foods like Little Debbie snack cakes are not good for him. They cause him behaviors and tics. I try to cook from scratch and not use premade foods that have chemical additives. However, for about six months he did strictly GF no white or wheat flour only rice flour. I even tried CF. However the diet was so limited and I did not see a better change to warrant limiting him from so much. I just mainly try to eliminate dyes for now. I had allergy testing done and he was fine. I did have him on monolaurin for all last winter. I should get him back on it now. He is already sick from all the germs in the school. Also with the cracking of fingers and toes. It is obvious because he cracks them behind his back and gets up on his tip toes and cracks too. It is a pattern fingers together at the same time then toes together. He did this for about four months last year and it started around the same time of year. That is odd. It may be OCD related. I think the PANDAS tics and OCD all are intermixed. I am never sure what is a tic(other then vocal noises) and what is an compulsion. His teacher said there was strep last week in a classmate. We will go through this all winter trying to guess if he was exposed to strep. I have four kids so there is always a chance they expose him here too with something that can increase his behaviors. I hope this was your first and only battle with PANDAS.

 

Michele

Hi all -

 

We are located in the Chicagoland area. Honestly, it was just "dumb luck" that our pediatrician knew about PANDAS. We have been going to him for 4 years - he was recommended to me by a coworker who has used him for her two daughters. He is a teaching pediatrician and he always has interns working with him, so I think that forces him to be up to speed on the current literature. He also mentioned that he has two other PANDAS patients, both with severe tics, not the behavior issues our son had.

 

As to long term treatment - right now we are taking it one day at a time. He has only been off the antibiotics for a little over 2 weeks. I dread of course the next time he is exposed to strep. I fully realize that we may end up putting him on daily antibiotics - we just want to try this for now and see what happens.

 

Make no mistake, though, our pediatrician was no help when it came to dealing with the secondary issues, like food sensitivity. So, all of that we had to figure out and take care of on our own. Antibiotics were only part of the answer.

 

Michele - interesting about the behavior that started last week with the cracking knuckles that you noticed. I think we put our kids behavior under a microscope now! When my son was in the midst of his PANDAS episode, he kept asking us what time it was - over and over again. Keep in mind, he is only 4, so prior to that he never had been all too concerned about what time it was! It was very weird. He scared me half to death over the weekend when he asked me in the car what time it was! Turns out I think he really just wanted to know what time it was - LOL.

 

Karen