PANDAS

[vermontmtngirl]

We are looking for answers. Here is a synopsis I wrote up about what has happened with my son. Before this happened he was an easy going loving kid. He's always shy around strangers and new environments but other than that no anxiety. Just normal kid behavior. He is 5 years old.

 

He had a very bad sore throat the end of May. The doctor described it as big white patches. His glands were swollen. I remember that some time around this they did a strep culture and it was negative. Then he kept getting worse and his glands got really swollen. I took him in a couple more times and then they had me take him to the lab and get a blood test done. He tested positive for mono. She said not to do antibiotics because mono is a virus. We went to the beach the first week of July and when we got back he told me his throat was really hurting and he did not feel good. He started telling me that he loved me all the time - like yelling it at me. Started being concerned about things being wet and germs. Took him back in and they said it was just the mono and it needed to run its course.

 

The obsessive behavior got worse. Became more obsessed with germs. I started working in the mornings then and I thought he was just getting stressed because of it. Then school started and we thought now that he would be in this new routine he would do better and were just hoping that all the stress he had been going through would go away. He had a horrible first week of school - major separation anxiety. We had to push in the door (literally-lots of crying). That weekend he started having to go pee like 5 times an hour. That was the weekend he learned to swim under water and I remember my husband and I just could not believe how many times he got out of the pool to go and pee.

 

Then the next week on Monday night I noticed that he was doing some counting stuff on his hands when he was going to bed(this is the only time I have ever seen him do this). His Kindergarten teacher mentioned to me that Ethan is shaking at school. It was horrible - it was like it had taken over his body.

 

I got on the computer that night and did a search for sudden ocd symptoms/dramatic change in behavior. I found all the stuff on PANDAS. I made him an appt the next morning and we went in to the pediatrician. I took in all the stuff on PANDAS and wrote down all the stuff he was doing. She did a urinalysis to see if he had an infection and it was negative and then after reading the PANDAS stuff did a throat culture and it was positive. She started him on Omniceft. Within 3 days he was 95% back to normal. It was amazing!! We were so happy. Then after day 10 when the medicine ended the next day after he started obsessive stuff again. I took him back in to dr and they did culture and it is still positive - they put him on Clindamiacyn. He was on it for about 4 days and it did nothing. Then they put him on Keflex for 3 days and did nothing. Then put him on Omniceft again and within 7 days we saw dramatic results. He was 95% better. We took him in and they did a rapid strep and it was negative. They also sent away for culture. He had a great afternoon. He then started coughing. Friday he started saying a lot of anxious things. Friday night he ran a fever of 102.5...over the weekend it got to 103...104. Took him to the dr yesterday and she says he has croop. His obsessive behaviors are back ... he is worried about things being wet, germs, things being dirty, etc. I just called the pediatrician again to see if the culture she sent away was negative or not. He also spends a lot of time on the toilet and has had an upset stomach for awhile.

 

My husband and I are trying to figure out what we should be doing. What kind of medical specialist should he go to? Should I start him in therapy? Did you all work through your pediatricians? I see that diet and omegas and probiotics are very important. He also has very bad allergies...

 

Thanks for responding. Also how do all of you handle the grief of something is wrong...I guess I am starting to accept it but also feel like this can't be happening to my baby. : (

[ad_ccl]

Hi there,

 

So sorry for what you are going through - you have come to the right place - to try and put the pieces of your puzzle together. There is a lot of info in the Tourettes/Tics Forum. Pandas - as you will know results in the sudden onset of either tics or OCD as well as other things, emotional lability, need to urinate often, ADHD type stuff. My son had a sudden onset of tics just before turning 6. We went through many antibiotics etc over the years - ultimately you will have to find what works best for your child. For us, we are now on azithromycin prophylactically, with good results. We also did some food sensitivity testing and removed those foods, gave probiotics and vitamins. Removed tv - then when we added it back used an LCD. I won't go into tons of details as you can read several of our stories on the other forum. Read all you can. There is lots of hope and as the years go by there is more info out there for new moms.

 

Good Luck.

[CarolynN]

Hello,

 

I know how heart breaking it is when you see your child go through something so difficult. I wanted to share some ideas I had regarding your situation.

 

First, have you read in the Tourettes section of this forum the posts about PANDAS. There is one that is on page one and was the top topic a few minutes ago. There is another one that has great information at http://www.latitudes.org/forums/index.php?showtopic=2446 .

 

I am wondering if your son does not have the variation of PANDAS called PITANDS. Basically, from what I understand, is it is viruses in general, rather then just strep, that bring out symptoms. It would certainly be something to research.

 

Also, for what it is worth, my middle son had a severe case of something called perianal strep over a year ago. Basically it is where strep starts growing in your intestional area and then comes out on your bottom. It is VERY uncomfortable. We had him on several anti-biotics to no avail. I started doing research on the internet and found out about a product called colloidal silver. It was amazing how quickly it worked. I sprayed it on his bottom and gave it to him internally and it went a way within days. Now with that said, it did come back a few weeks later. I then spoke to my naturopathic doctor and she told me to give him grapefruit seed extract, a probiotic, and colloidal silver two times a day for 10 days. It cleared up and never came back. The three products together are extremely effective against strep. I tested it out again about two months ago when, the same son, came down with strep throat. I did the exact same remedy with the exact same results.

 

So with all that said, I wonder if this would be a way for you to naturally help your son get over the strep. I certainly know it was effective for my son.

 

In regard to the colloidal silver, I use a product called Sovereign Silver because it is supposed to be the "safest" silver product because of the size of its particals. You can do tones of research on colloidal silver on the internet. From what I have learned it seems to be safe, but I would not use it on a long term basis. I know I read one website where a doctor was concerned about it building up as a heavy metal within the body. I think you would have to just do a lot of research to feel comfortable. I did and I use it on my children.

 

I also wanted to mention that colloidal silver has been around for years and years. The way they USE to make it, to sell it, was if you took it in very high levels your skin could actually turn a silver shade. People today actually make collodial silver from home but I would NEVER do this because you could run the risk of the silver discoloration of the skin. But the way they process, when you purchase it from a health food store, takes this risk out of it. If you do the reading and testimonials on the internet I think you will be surprised at how effective it seems to be in combating many things including strep.

 

The grapefruit seed exact is also very powerful in fighting bacterial infections such as strep. It is also very effective in getting rid of candida in the body. If your son has an allergy to citrus, then you might want to research whether this product can be used for him.

 

Speaking of candida PLEASE, PLEASE make sure that while your son is on anti-biotics that you keep a really good pro-biotic going in his body. I wouldn't just rely on yogurt type of products but an actual pro-biotic from the health food stores. If you don't you could be setting your son up for candida and this in and of itself can cause OCD behavior. My Naturopathic doctor told me when you give a pro-biotic you always want to make sure it is taken at least two hours before or two hours after the antibiotic is given. Otherwise the antibiotic kills off the probiotic.

 

Well I hope this helps some. I will be praying for your son!

 

Carolyn N.

[JLB-1_]

Hello,

 

I know how heart breaking it is when you see your child go through something so difficult. I wanted to share some ideas I had regarding your situation.

 

First, have you read in the Tourettes section of this forum the posts about PANDAS. There is one that is on page one and was the top topic a few minutes ago. There is another one that has great information at http://www.latitudes.org/forums/index.php?showtopic=2446 .

 

I am wondering if your son does not have the variation of PANDAS called PITANDS. Basically, from what I understand, is it is viruses in general, rather then just strep, that bring out symptoms. It would certainly be something to research.

 

Also, for what it is worth, my middle son had a severe case of something called perianal strep over a year ago. Basically it is where strep starts growing in your intestional area and then comes out on your bottom. It is VERY uncomfortable. We had him on several anti-biotics to no avail. I started doing research on the internet and found out about a product called colloidal silver. It was amazing how quickly it worked. I sprayed it on his bottom and gave it to him internally and it went a way within days. Now with that said, it did come back a few weeks later. I then spoke to my naturopathic doctor and she told me to give him grapefruit seed extract, a probiotic, and colloidal silver two times a day for 10 days. It cleared up and never came back. The three products together are extremely effective against strep. I tested it out again about two months ago when, the same son, came down with strep throat. I did the exact same remedy with the exact same results.

 

So with all that said, I wonder if this would be a way for you to naturally help your son get over the strep. I certainly know it was effective for my son.

 

In regard to the colloidal silver, I use a product called Sovereign Silver because it is supposed to be the "safest" silver product because of the size of its particals. You can do tones of research on colloidal silver on the internet. From what I have learned it seems to be safe, but I would not use it on a long term basis. I know I read one website where a doctor was concerned about it building up as a heavy metal within the body. I think you would have to just do a lot of research to feel comfortable. I did and I use it on my children.

 

I also wanted to mention that colloidal silver has been around for years and years. The way they USE to make it, to sell it, was if you took it in very high levels your skin could actually turn a silver shade. People today actually make collodial silver from home but I would NEVER do this because you could run the risk of the silver discoloration of the skin. But the way they process, when you purchase it from a health food store, takes this risk out of it. If you do the reading and testimonials on the internet I think you will be surprised at how effective it seems to be in combating many things including strep.

 

The grapefruit seed exact is also very powerful in fighting bacterial infections such as strep. It is also very effective in getting rid of candida in the body. If your son has an allergy to citrus, then you might want to research whether this product can be used for him.

 

Speaking of candida PLEASE, PLEASE make sure that while your son is on anti-biotics that you keep a really good pro-biotic going in his body. I wouldn't just rely on yogurt type of products but an actual pro-biotic from the health food stores. If you don't you could be setting your son up for candida and this in and of itself can cause OCD behavior. My Naturopathic doctor told me when you give a pro-biotic you always want to make sure it is taken at least two hours before or two hours after the antibiotic is given. Otherwise the antibiotic kills off the probiotic.

 

Well I hope this helps some. I will be praying for your son!

 

Carolyn N.

[vermontmtngirl]

We have our infectious disease dr appt next week for my son with PANDAS/OCD. What should I be asking them?

 

 

Also - after we finally got strep to go away he now has walking pneumonia. They put him on azithromicyn and all his OCD symptoms came back...any body else experience this...

 

 

Thanks

[michele]

Honey I am just sick reading your story. I am right here with you on this and feel the desperation to help your little guy. Mine is five also and just strated school. We have been at this tic with illness thing for awhile though. He started at one year with strep. However, for some reason, possibly the flu shot and k-vaccines my guy got much worse in the last year. I notice alot of kids around five get the OCD symptoms. We have the compulsiveness to urinate as a first sign of infection. That is like a warning flag to get to the Dr. for a stronger dose of antibiotics. So you are saying the OCD is worse on the omniseph? Maybe if they could try another like Augmentin. I am giving Andrew Omniseph for three weeks. His tics are down and he is much better emotionally while on it. However, I notice the ADHD really is not going away. In fact with age the ADHD symptoms come out stonger. I am trying GABA calm with him daily too. Also probiotics and Coremega. I also give him digestive enzymes and Monolaurin. I am trying to get his immune system to get better. I guess with age and time it can happen. Just be careful about giving the flu shot. Mercury or thermosol can make this much worse. How is your son's handwriting/coordination? Mine is at a lower age then it should be. We are in the process of getting help for OT. I was just reading in Mitzy Walsh's book Tics and Tourettes some explanation for PANDAS. It mentions that the symptoms often reoccur with other infections not just strep. My son gets it even when around colds and flu. It is very hard to understand but for some reason their brain has been attacked and keeps being attacked by a foreign invader. It is at war with itself. We see a DAN Dr. for natural healing, and a neurologist and an immunolgist and our pediatrician. It takes alot of work on the mom or dads part to get the Dr.'s to follow up. I don't know why. We recently went to Florida to see the PANDAS specialist Dr. Murphy. It really helped to talk to her because she sees over 100 PANDAS cases. You can do phone consults with her I believe. She is at the UF Shands Medical Plaza. Check the tics and tourettes board because it is much more active and there is a group of PANDAS parents there. God bless and keep me informed.

Michele

 

We have our infectious disease dr appt next week for my son with PANDAS/OCD. What should I be asking them?

 

 

Also - after we finally got strep to go away he now has walking pneumonia. They put him on azithromicyn and all his OCD symptoms came back...any body else experience this...

 

 

Thanks

[littlefoot]

Hi, you mentioned something about your son having to urinate alot. Do you know what the correlation is between that and the OCD/PANDAS is??

 

 

 

We are looking for answers. Here is a synopsis I wrote up about what has happened with my son. Before this happened he was an easy going loving kid. He's always shy around strangers and new environments but other than that no anxiety. Just normal kid behavior. He is 5 years old.

 

He had a very bad sore throat the end of May. The doctor described it as big white patches. His glands were swollen. I remember that some time around this they did a strep culture and it was negative. Then he kept getting worse and his glands got really swollen. I took him in a couple more times and then they had me take him to the lab and get a blood test done. He tested positive for mono. She said not to do antibiotics because mono is a virus. We went to the beach the first week of July and when we got back he told me his throat was really hurting and he did not feel good. He started telling me that he loved me all the time - like yelling it at me. Started being concerned about things being wet and germs. Took him back in and they said it was just the mono and it needed to run its course.

 

The obsessive behavior got worse. Became more obsessed with germs. I started working in the mornings then and I thought he was just getting stressed because of it. Then school started and we thought now that he would be in this new routine he would do better and were just hoping that all the stress he had been going through would go away. He had a horrible first week of school - major separation anxiety. We had to push in the door (literally-lots of crying). That weekend he started having to go pee like 5 times an hour. That was the weekend he learned to swim under water and I remember my husband and I just could not believe how many times he got out of the pool to go and pee.

 

Then the next week on Monday night I noticed that he was doing some counting stuff on his hands when he was going to bed(this is the only time I have ever seen him do this). His Kindergarten teacher mentioned to me that Ethan is shaking at school. It was horrible - it was like it had taken over his body.

 

I got on the computer that night and did a search for sudden ocd symptoms/dramatic change in behavior. I found all the stuff on PANDAS. I made him an appt the next morning and we went in to the pediatrician. I took in all the stuff on PANDAS and wrote down all the stuff he was doing. She did a urinalysis to see if he had an infection and it was negative and then after reading the PANDAS stuff did a throat culture and it was positive. She started him on Omniceft. Within 3 days he was 95% back to normal. It was amazing!! We were so happy. Then after day 10 when the medicine ended the next day after he started obsessive stuff again. I took him back in to dr and they did culture and it is still positive - they put him on Clindamiacyn. He was on it for about 4 days and it did nothing. Then they put him on Keflex for 3 days and did nothing. Then put him on Omniceft again and within 7 days we saw dramatic results. He was 95% better. We took him in and they did a rapid strep and it was negative. They also sent away for culture. He had a great afternoon. He then started coughing. Friday he started saying a lot of anxious things. Friday night he ran a fever of 102.5...over the weekend it got to 103...104. Took him to the dr yesterday and she says he has croop. His obsessive behaviors are back ... he is worried about things being wet, germs, things being dirty, etc. I just called the pediatrician again to see if the culture she sent away was negative or not. He also spends a lot of time on the toilet and has had an upset stomach for awhile.

 

My husband and I are trying to figure out what we should be doing. What kind of medical specialist should he go to? Should I start him in therapy? Did you all work through your pediatricians? I see that diet and omegas and probiotics are very important. He also has very bad allergies...

 

Thanks for responding. Also how do all of you handle the grief of something is wrong...I guess I am starting to accept it but also feel like this can't be happening to my baby. : (

[michele]

That is from the compulsive urge to urinate we believe. My son will ask to go over and over. We have to set a timer as a reminder of when he can go again. He will run in and out of the bathroom constantly if not. Also the repeat pressing of his hands and cracking them on his face could be a compulsion. I guess it could be a tic also. Frequent urination is a very common symtom for PANDAS kids and usually one of the first symptoms of a PANDAS episode coming on or an exposure to strep.

 

Hi, you mentioned something about your son having to urinate alot. Do you know what the correlation is between that and the OCD/PANDAS is??

 

 

 

We are looking for answers. Here is a synopsis I wrote up about what has happened with my son. Before this happened he was an easy going loving kid. He's always shy around strangers and new environments but other than that no anxiety. Just normal kid behavior. He is 5 years old.

 

He had a very bad sore throat the end of May. The doctor described it as big white patches. His glands were swollen. I remember that some time around this they did a strep culture and it was negative. Then he kept getting worse and his glands got really swollen. I took him in a couple more times and then they had me take him to the lab and get a blood test done. He tested positive for mono. She said not to do antibiotics because mono is a virus. We went to the beach the first week of July and when we got back he told me his throat was really hurting and he did not feel good. He started telling me that he loved me all the time - like yelling it at me. Started being concerned about things being wet and germs. Took him back in and they said it was just the mono and it needed to run its course.

 

The obsessive behavior got worse. Became more obsessed with germs. I started working in the mornings then and I thought he was just getting stressed because of it. Then school started and we thought now that he would be in this new routine he would do better and were just hoping that all the stress he had been going through would go away. He had a horrible first week of school - major separation anxiety. We had to push in the door (literally-lots of crying). That weekend he started having to go pee like 5 times an hour. That was the weekend he learned to swim under water and I remember my husband and I just could not believe how many times he got out of the pool to go and pee.

 

Then the next week on Monday night I noticed that he was doing some counting stuff on his hands when he was going to bed(this is the only time I have ever seen him do this). His Kindergarten teacher mentioned to me that Ethan is shaking at school. It was horrible - it was like it had taken over his body.

 

I got on the computer that night and did a search for sudden ocd symptoms/dramatic change in behavior. I found all the stuff on PANDAS. I made him an appt the next morning and we went in to the pediatrician. I took in all the stuff on PANDAS and wrote down all the stuff he was doing. She did a urinalysis to see if he had an infection and it was negative and then after reading the PANDAS stuff did a throat culture and it was positive. She started him on Omniceft. Within 3 days he was 95% back to normal. It was amazing!! We were so happy. Then after day 10 when the medicine ended the next day after he started obsessive stuff again. I took him back in to dr and they did culture and it is still positive - they put him on Clindamiacyn. He was on it for about 4 days and it did nothing. Then they put him on Keflex for 3 days and did nothing. Then put him on Omniceft again and within 7 days we saw dramatic results. He was 95% better. We took him in and they did a rapid strep and it was negative. They also sent away for culture. He had a great afternoon. He then started coughing. Friday he started saying a lot of anxious things. Friday night he ran a fever of 102.5...over the weekend it got to 103...104. Took him to the dr yesterday and she says he has croop. His obsessive behaviors are back ... he is worried about things being wet, germs, things being dirty, etc. I just called the pediatrician again to see if the culture she sent away was negative or not. He also spends a lot of time on the toilet and has had an upset stomach for awhile.

 

My husband and I are trying to figure out what we should be doing. What kind of medical specialist should he go to? Should I start him in therapy? Did you all work through your pediatricians? I see that diet and omegas and probiotics are very important. He also has very bad allergies...

 

Thanks for responding. Also how do all of you handle the grief of something is wrong...I guess I am starting to accept it but also feel like this can't be happening to my baby. : (

[trubiano]

We are all here for you! My 5 year old son(6 now) had all the same issues. ID wasn't really any help, so if you do not get any answers or help there don't get upset! I would have your Ped do the DNASE/strep titers and see how high they are. Off antibiotic even with a negative strep test my son's OCD/tics come back. If your Ped is willing to try, put him on penicillin daily and see if it helps. Although we have relapses, as PANDAS kids do, my son is 100% better since starting the antibiotic. I only wish it didn't take 5 different specialists to figure it out. This is a hard confusing time for you keep coming back to the forum! I find not only help for my son, but support when I need it!

[OCDmom]

I am new to this site, OCD and everything this entails. I could use some advice from those who have been there. History -- my 10 year old daughter began having anxiety induced headaches since first grade (waking her up at night). She always has jiggled her feet up and down upon sitting since she was old enough to sit in a high chair. Almost a year ago to the day, we notice a tic develop - uneven eye blinking, rolling her eyes. After consulting her neurologist, he sent her to a child psychologist to address her anxiety. That went well from January to July. At the end of July, she contracted Fifths Disease. Within 2-3 weeks, she became obsessive over germs, and developed hand washing rituals. Again, we addressed these in therapy. Her eye blinking stopped. Then about 4 weeks ago, she developed thoughts about Satan and began praying continually. Now, she has begun low muttering sounds. We are off to the medical doctor today to be tested for PITANDAS. She had step in first grade.... Anyone know of a correlation that takes that long? Or if Fifths and be a part of PITANDAS? This is the most helpless I've felt as a parent since she was born prematurely. Thanks for any advice you can give.

[OCDmom]

Well, the doctor just called and the specific strep test she ran on my daughter last week (anti dnase-b anitbody) was off the chart. So my daughter's OCD is resulting from PANDA. I am not sure what happens from here, but I am overjoyed to have a specific answer. We were days away from Prozac being perscribed. Thought I'd share with you all - anyone knows what we are in store for next!!!

[michele]

I notice more ocd in my son when he has yeas overgrowth in his gut. We have recently put him on a prescription called nystatin. Also we make sure he gets probiotics Primodophilus daily. Be careful taking antidepressants with tic disorders. It can sometimes make them worse. Have you tried natural supplements for the ocd? How bad is the ocd? You have to weigh the compulsiveness to how it interferes with daily life. Dr. Murphy told me of a drug she sometimes has to prescribe for the ocd called tennex. It helps with ADHD too. We have never tried this though. I am glad you got diagnosis.

Michele

Well, the doctor just called and the specific strep test she ran on my daughter last week (anti dnase-b anitbody) was off the chart. So my daughter's OCD is resulting from PANDA. I am not sure what happens from here, but I am overjoyed to have a specific answer. We were days away from Prozac being perscribed. Thought I'd share with you all - anyone knows what we are in store for next!!!

[OCDmom]

I notice more ocd in my son when he has yeas overgrowth in his gut. We have recently put him on a prescription called nystatin. Also we make sure he gets probiotics Primodophilus daily. Be careful taking antidepressants with tic disorders. It can sometimes make them worse. Have you tried natural supplements for the ocd? How bad is the ocd? You have to weigh the compulsiveness to how it interferes with daily life. Dr. Murphy told me of a drug she sometimes has to prescribe for the ocd called tennex. It helps with ADHD too. We have never tried this though. I am glad you got diagnosis.

Michele

Well, the doctor just called and the specific strep test she ran on my daughter last week (anti dnase-b anitbody) was off the chart. So my daughter's OCD is resulting from PANDA. I am not sure what happens from here, but I am overjoyed to have a specific answer. We were days away from Prozac being perscribed. Thought I'd share with you all - anyone knows what we are in store for next!!!

[OCDmom]

Thanks for your encouragement. I am learning more and more each day. According to the doctor, my daughter most likily be a PITANDS - as her Fifths Disease started this intense OCD stint. From the reserach on PANDAS and PITANDS, it is the strep antibody that is interfering in the basil ganglia. So, where do we go from here as her antibody is over 570 (normal is 0-170)? Our doctor is consulting the experts who are in the forefront of these two recently discovered disorders. I've read that plasma exchange is a possibility as well - to elliminate the antibodies... I really am not wanting the SSRI medications... I'll keep you updated and our doctors is waiting to hear back from a dozen or more calls out.

[michele]

I am really impressed with your doctor. Our ped was clueless she didn't even offer referrals just to go to a neurologist. She said it was out of her expertice. Please keep us informed. Possible the information you find could help many others here who are struggling because we can' find Dr's who get involved to find the best treatment plans. It is great that your Dr. knew these tests to run. Our neurologist said PITANDS is an old term that is not used anymore. I am interested where you go from here. Most of the PANDAS cases have antibodies to strep attacking the brain. How is your child behaving? How long has it been going on? I am so happy you are working so hard to get results. You are in our prayers.

Michele

Thanks for your encouragement. I am learning more and more each day. According to the doctor, my daughter most likily be a PITANDS - as her Fifths Disease started this intense OCD stint. From the reserach on PANDAS and PITANDS, it is the strep antibody that is interfering in the basil ganglia. So, where do we go from here as her antibody is over 570 (normal is 0-170)? Our doctor is consulting the experts who are in the forefront of these two recently discovered disorders. I've read that plasma exchange is a possibility as well - to elliminate the antibodies... I really am not wanting the SSRI medications... I'll keep you updated and our doctors is waiting to hear back from a dozen or more calls out.