New to all of this and asking for help

[lboll]

Hello,

I have been reading through all of these postings after doing hours of online research on PANDAS. My son, Braden, is 10 years old and on the autism spectrum. I have been a special educator for over 15 years and have long suspected that Braden, while autistic, exhibits symptoms more related to Tourette's or OCD. He has verbal tics, and cannot get through a sentence without "clucking". He has hand shaking that is both voluntary (self-stim) and involuntary. I could go on and on.

 

At any rate, my husband recently interviewed Beth Maloney on his autism podcast. And after listening, something clicked. I had an AHA moment of "This could be it!".

 

So, we took Braden to the doctor. For many years, every time he's been given a strep test, he has tested positive. This time was no exception. He had a positive rapid strep result even though he is not showing any symptoms of being sick (with strep). We asked for the blood test. His titers level only came out to 199. The doctor told me that this is in the normal limits. Now what? I know, from reading your posts, that many of you have children with low titer numbers.

 

Since Braden isn't "typical" in either autism or Tourette's/OCD, I feel like he won't be seriously looked at by anyone.

 

Now here's the real clincher. We live in China! So finding a doctor who is willing to take this on is difficult. Therefore, I need to do all the research, etc. I want to try Braden on Augmentin, but how do I know how much? The questions could go on and on.

 

Please be honest here. Do you think I could be on the right track with PANDAS? I don't believe I'm in denial about Braden's autism. I would just love to help eliminate some of these tics so he can concentrate and function in society.

 

Thanks so much for your help. I really appreciate any of you who will take the time to answer.

 

Sincerely,

lboll

[MomWithOCDSon]

Hello,

I have been reading through all of these postings after doing hours of online research on PANDAS. My son, Braden, is 10 years old and on the autism spectrum. I have been a special educator for over 15 years and have long suspected that Braden, while autistic, exhibits symptoms more related to Tourette's or OCD. He has verbal tics, and cannot get through a sentence without "clucking". He has hand shaking that is both voluntary (self-stim) and involuntary. I could go on and on.

 

At any rate, my husband recently interviewed Beth Maloney on his autism podcast. And after listening, something clicked. I had an AHA moment of "This could be it!".

 

So, we took Braden to the doctor. For many years, every time he's been given a strep test, he has tested positive. This time was no exception. He had a positive rapid strep result even though he is not showing any symptoms of being sick (with strep). We asked for the blood test. His titers level only came out to 199. The doctor told me that this is in the normal limits. Now what? I know, from reading your posts, that many of you have children with low titer numbers.

 

Since Braden isn't "typical" in either autism or Tourette's/OCD, I feel like he won't be seriously looked at by anyone.

 

Now here's the real clincher. We live in China! So finding a doctor who is willing to take this on is difficult. Therefore, I need to do all the research, etc. I want to try Braden on Augmentin, but how do I know how much? The questions could go on and on.

 

Please be honest here. Do you think I could be on the right track with PANDAS? I don't believe I'm in denial about Braden's autism. I would just love to help eliminate some of these tics so he can concentrate and function in society.

 

Thanks so much for your help. I really appreciate any of you who will take the time to answer.

 

Sincerely,

lboll

 

Iboll --

 

I know what you mean about something just "clicking" upon hearing Beth Maloney tell her and Sammy's story. The same thing happened with me.

 

I DO think you're on the right path with PANDAS. There is parent after parent on this forum with kids who have low titers but have other classic PANDAS symptoms and are responding to PANDAS treatment. If you're doing the research, then no doubt you've seen the FAQ thread here on this forum. My son is the opposite: never tests positive for strep but has titers out the whazoo.

 

I don't have any experience with medical care in China, but from what I know of eastern medical practices, it seems to me a practioner there might be even more inclined to consider PANDAS treatment than some western docs, as they are more familiar with practices which are considered "alternative" here in the west. I would print off as many of the research articles and FAQs as possible and take them to an appointment with me.

 

As for the correct antibiotic or correct dosage, it really does seem to vary from person to person, and even from location to location. Different areas of the U.S. have different strains of Strep A which respond better to various antibiotics. So it can be hard to tell what will work best. Like you, in terms of treatment protocol, "Saving Sammy" was the documentation I had in hand when I went to see our pediatrician, so I literally gave her a copy of the book along with a timeline and list of the medications Sammy was given. So she started my 12-year-old son on Augmentin in keeping with Sammy's dosage.

 

Good luck to you!

[thereishope]

Welcome.

 

It just isn't acceptable for a doctor to say it's okay for a child to walk around with + strep tests. I would trust that swab first and fight for meds. If it is PANDAS, you won't see improvement until the infection is gone. Do the docs there simply say that a person who constantly tests + is a carrier and you don't have to do anything about it? Or is it that they'll give meds, but not sure which ones to give? I just want to know which kind of battle you will have.

 

peglem will probably check this out later. Her daughter sounds like your son. She will be a wealth of info for you.

[sf_mom]

Since you are living in China, I would suggest you try Augmentin XR 875 x 2 daily for at least 30 days to see if you experience improvement... similar to Saving Sammy dose. I am sure you can consult via e-mail or phone with one of the Dr. listed on this forum to support that recommendation. My son's friend, who had RF looked like he could have been diagnosed with Asperger's and is thankfully looking much, much better.

 

Good Luck.... I think you need to explore this possibility fully on behalf of your son.

 

-Wendy

[peglem]

Hello,

I have been reading through all of these postings after doing hours of online research on PANDAS. My son, Braden, is 10 years old and on the autism spectrum. I have been a special educator for over 15 years and have long suspected that Braden, while autistic, exhibits symptoms more related to Tourette's or OCD. He has verbal tics, and cannot get through a sentence without "clucking". He has hand shaking that is both voluntary (self-stim) and involuntary. I could go on and on.

 

At any rate, my husband recently interviewed Beth Maloney on his autism podcast. And after listening, something clicked. I had an AHA moment of "This could be it!".

 

So, we took Braden to the doctor. For many years, every time he's been given a strep test, he has tested positive. This time was no exception. He had a positive rapid strep result even though he is not showing any symptoms of being sick (with strep). We asked for the blood test. His titers level only came out to 199. The doctor told me that this is in the normal limits. Now what? I know, from reading your posts, that many of you have children with low titer numbers.

 

Since Braden isn't "typical" in either autism or Tourette's/OCD, I feel like he won't be seriously looked at by anyone.

 

Now here's the real clincher. We live in China! So finding a doctor who is willing to take this on is difficult. Therefore, I need to do all the research, etc. I want to try Braden on Augmentin, but how do I know how much? The questions could go on and on.

 

Please be honest here. Do you think I could be on the right track with PANDAS? I don't believe I'm in denial about Braden's autism. I would just love to help eliminate some of these tics so he can concentrate and function in society.

 

Thanks so much for your help. I really appreciate any of you who will take the time to answer.

 

Sincerely,

lboll

Hi! That sounds exactly like my daughter! She doesn't get any symptoms of strep other than behavior. The only times she tests neg. for strep is when she is on antibiotics, and sometimes she's tests positive even then. And my daughter has low ASO/AntiDnase titers as well. That suggests to me that your son may have intracellular strep, which means you need an antibiotic that will get at the bacteria inside the cell. Azithromycin seems to be what works best for my child.

 

My daughter has autism...I'm not in denial about that, either, but understand the disclaimer-you've had those looks from professionals too, eh? The "poor-parent-just-cannot-accept" look? Well, here's what I think about that. Autism is, in short, abnormal childhood development. But, there must be something that has or is interfering with that development. It really bothers me that autism is considered a "diagnosis", when its really just a label given to symptoms of whatever is causing the abnormal development. I think, in our case, PANDAS is what caused the autistic SYMPTOMS.

[lboll]

To all of you,

 

Thank you so much for your replies. I have learned so much from all of you. For the first time in many, many years, I have hope.

 

My husband and I are going to gather up all our info tonight and go to the doctor armed with info.

 

To Vickie: yes, the doctor said that it's normal for a child to have strep at all times. He said some kids just carry it with them. However, he says he's not opposed to trying a high dose of antibiotics if that's what we want. He says it's just his job to stop us if we're getting unreasonable. He's not the only doctor here, so I can always go to another one if this guy is not willing to go further with this.

 

To peglem: Amazing to find someone who also has a diagnosis of autism for their child. And, your thoughts on autism are so interesting. I look forward to hearing more about your daughter and her progress. How old is she?

 

So is Azithromyacin the only antibiotic that targets the inner part of the cell? I have a lot of research to do!

 

I also have to work with that antibiotics that are available here.

 

Again, thank you all for your help.

[rymom]

Hello,

I have been reading through all of these postings after doing hours of online research on PANDAS. My son, Braden, is 10 years old and on the autism spectrum. I have been a special educator for over 15 years and have long suspected that Braden, while autistic, exhibits symptoms more related to Tourette's or OCD. He has verbal tics, and cannot get through a sentence without "clucking". He has hand shaking that is both voluntary (self-stim) and involuntary. I could go on and on.

 

At any rate, my husband recently interviewed Beth Maloney on his autism podcast. And after listening, something clicked. I had an AHA moment of "This could be it!".

 

So, we took Braden to the doctor. For many years, every time he's been given a strep test, he has tested positive. This time was no exception. He had a positive rapid strep result even though he is not showing any symptoms of being sick (with strep). We asked for the blood test. His titers level only came out to 199. The doctor told me that this is in the normal limits. Now what? I know, from reading your posts, that many of you have children with low titer numbers.

 

Since Braden isn't "typical" in either autism or Tourette's/OCD, I feel like he won't be seriously looked at by anyone.

 

Now here's the real clincher. We live in China! So finding a doctor who is willing to take this on is difficult. Therefore, I need to do all the research, etc. I want to try Braden on Augmentin, but how do I know how much? The questions could go on and on.

 

Please be honest here. Do you think I could be on the right track with PANDAS? I don't believe I'm in denial about Braden's autism. I would just love to help eliminate some of these tics so he can concentrate and function in society.

 

Thanks so much for your help. I really appreciate any of you who will take the time to answer.

 

Sincerely,

lboll

Hi! That sounds exactly like my daughter! She doesn't get any symptoms of strep other than behavior. The only times she tests neg. for strep is when she is on antibiotics, and sometimes she's tests positive even then. And my daughter has low ASO/AntiDnase titers as well. That suggests to me that your son may have intracellular strep, which means you need an antibiotic that will get at the bacteria inside the cell. Azithromycin seems to be what works best for my child.

 

My daughter has autism...I'm not in denial about that, either, but understand the disclaimer-you've had those looks from professionals too, eh? The "poor-parent-just-cannot-accept" look? Well, here's what I think about that. Autism is, in short, abnormal childhood development. But, there must be something that has or is interfering with that development. It really bothers me that autism is considered a "diagnosis", when its really just a label given to symptoms of whatever is causing the abnormal development. I think, in our case, PANDAS is what caused the autistic SYMPTOMS.

[CZL]

To all of you,

 

Thank you so much for your replies. I have learned so much from all of you. For the first time in many, many years, I have hope.

 

My husband and I are going to gather up all our info tonight and go to the doctor armed with info.

 

To Vickie: yes, the doctor said that it's normal for a child to have strep at all times. He said some kids just carry it with them. However, he says he's not opposed to trying a high dose of antibiotics if that's what we want. He says it's just his job to stop us if we're getting unreasonable. He's not the only doctor here, so I can always go to another one if this guy is not willing to go further with this.

 

To peglem: Amazing to find someone who also has a diagnosis of autism for their child. And, your thoughts on autism are so interesting. I look forward to hearing more about your daughter and her progress. How old is she?

 

So is Azithromyacin the only antibiotic that targets the inner part of the cell? I have a lot of research to do!

 

I also have to work with that antibiotics that are available here.

 

Again, thank you all for your help.

 

Hi lboll,

 

I am from China too, Beijing. Which city are you in? I don't have much suggestions as I am still struggling with this for my son, not yet figured out the way to go next. I put my son on antibiotic for about 70 days already, Sammy dose. I did see obvious improvement at begining, he had backslide after I tapered down his other psych meds.

So you said your doctor is willing to try high dose antiboitic for your kid? I was not able to find one willing try it that way. As far as I know there is regular Augmentin but is not easy to get, there is no Augmentin XR in China.

you can email me to share information.

[lboll]

To all of you,

 

Thank you so much for your replies. I have learned so much from all of you. For the first time in many, many years, I have hope.

 

My husband and I are going to gather up all our info tonight and go to the doctor armed with info.

 

To Vickie: yes, the doctor said that it's normal for a child to have strep at all times. He said some kids just carry it with them. However, he says he's not opposed to trying a high dose of antibiotics if that's what we want. He says it's just his job to stop us if we're getting unreasonable. He's not the only doctor here, so I can always go to another one if this guy is not willing to go further with this.

 

To peglem: Amazing to find someone who also has a diagnosis of autism for their child. And, your thoughts on autism are so interesting. I look forward to hearing more about your daughter and her progress. How old is she?

 

So is Azithromyacin the only antibiotic that targets the inner part of the cell? I have a lot of research to do!

 

I also have to work with that antibiotics that are available here.

 

Again, thank you all for your help.

 

Hi lboll,

 

I am from China too, Beijing. Which city are you in? I don't have much suggestions as I am still struggling with this for my son, not yet figured out the way to go next. I put my son on antibiotic for about 70 days already, Sammy dose. I did see obvious improvement at begining, he had backslide after I tapered down his other psych meds.

So you said your doctor is willing to try high dose antiboitic for your kid? I was not able to find one willing try it that way. As far as I know there is regular Augmentin but is not easy to get, there is no Augmentin XR in China.

you can email me to share information.

 

 

Hi CZL: We live in Shanghai. I'm going to Parkway Health right now.

[rymom]

I have a 7 year old son who was diagnosed with PDD-NOS at 2 yrs 2 mos and then with Autism at 6 years. He is considered verbal but has apraxia and communicating is a difficult task he is working hard at. He has been on a gluten free/casein free diet since five years old, which had worked wonders for his digestive tract but had not improved his communciation skills. In the last week of April 2009 he started having out of nowhere uncontrollable rage tantrums that lasted for up to 1 hour. He also started waking up in the middle of the night, pupils dialated, in rage tantrums, kicking his legs crazy. He also would pee every 10-20 minutes (we realize now he has had many rounds of this throughout his little life.) He then started sticking his fingers in his mouth and would make circles with his spit on everything. He also tore apart all of my plants outside for hours. We took him to seven Ped's in all, all tests types of tests done, nothing turned up. I was told by two Ped's that this is "autism", one even told me sometimes a trigger flips and this happens. In one week?...I didn't believe it. I finally ended up at our DAN doctor who recommended we get a CAT scan, again nothing turned up. Then our DAN doctor sent us to Dr. Latimer (we live in DC area.)

We were in the office for 30 minutes and Dr. Latimer said, "I think he has PANDAS." (June 2009) I had never heard of it. She had us get him tested, he came back at the time with CaM Kinase of 147. He went on Predisone and he finally slept and laughed for the first time in 4 months..we were dumbfounded. He tapered off Prednisone and all of his symptoms came back. He got IVIG in Sept 2009. He has been sleeping (knock on tons of wood) since Oct 15th. My husband and I realize that this is the first time in his whole life since he was maybe a year old that he has slept through the night for this long. It is a miracle so far for us. We continue to see improvement everyday. It is slow but we will take it.

[lboll]

I have a 7 year old son who was diagnosed with PDD-NOS at 2 yrs 2 mos and then with Autism at 6 years. He is considered verbal but has apraxia and communicating is a difficult task he is working hard at. He has been on a gluten free/casein free diet since five years old, which had worked wonders for his digestive tract but had not improved his communciation skills. In the last week of April 2009 he started having out of nowhere uncontrollable rage tantrums that lasted for up to 1 hour. He also started waking up in the middle of the night, pupils dialated, in rage tantrums, kicking his legs crazy. He also would pee every 10-20 minutes (we realize now he has had many rounds of this throughout his little life.) He then started sticking his fingers in his mouth and would make circles with his spit on everything. He also tore apart all of my plants outside for hours. We took him to seven Ped's in all, all tests types of tests done, nothing turned up. I was told by two Ped's that this is "autism", one even told me sometimes a trigger flips and this happens. In one week?...I didn't believe it. I finally ended up at our DAN doctor who recommended we get a CAT scan, again nothing turned up. Then our DAN doctor sent us to Dr. Latimer (we live in DC area.)

We were in the office for 30 minutes and Dr. Latimer said, "I think he has PANDAS." (June 2009) I had never heard of it. She had us get him tested, he came back at the time with CaM Kinase of 147. He went on Predisone and he finally slept and laughed for the first time in 4 months..we were dumbfounded. He tapered off Prednisone and all of his symptoms came back. He got IVIG in Sept 2009. He has been sleeping (knock on tons of wood) since Oct 15th. My husband and I realize that this is the first time in his whole life since he was maybe a year old that he has slept through the night for this long. It is a miracle so far for us. We continue to see improvement everyday. It is slow but we will take it.

 

 

Such an inspiring story! Has your son been on any antibiotics yet? Are you considering that as well? How was the IVIG treatment? Was he able to sit through the entire thing? I read somewhere that it takes 3-4 hours. Thank goodness you found that doctor! I hope I can find one that's willing to help.

[peglem]

To peglem: Amazing to find someone who also has a diagnosis of autism for their child. And, your thoughts on autism are so interesting. I look forward to hearing more about your daughter and her progress. How old is she?

 

So is Azithromyacin the only antibiotic that targets the inner part of the cell? I have a lot of research to do!

 

My daughter is 15.

 

I don't know if zith is the only abx that gets inside cells. Last month her doctor prescribed a 10 day course of rifampin, along with augmentin. Rifampin is an antibiotic that goes intracellular and is usually used in conjunction with another abx, to treat tuberculosis. The results were good, but not something the pediatrician wanted to do long term, because it can be pretty quickly toxic to the liver. Although, tuberculosis patients are usually on it for several months. (with frequent liver enzymes checks).

I'm not sure about augmentin...hopefully others will chime in about that.

[tantrums]

I couldn't agree more! I don't have an autistic child, but I am a state case manager for people with developmental disabilities - both adults and children. A friend of mine who is also a case manager and has a secondary job as a child behaviorist have been discussing this ALOT lately. How many children out there may not be truly autistic? I don't think it's a denial, I think it's a truly valid question. I think it could certainly be PANDAS in severe form.

 

I have been seeing so many things in my child these past few months, and this is his FIRST episode, that would be indicators for something on the spectrum. In fact, at our first visit with the doctor to discuss these issues, she began asking questions about social skills, etc... I specifically said "had I not known this child for the past 6 years, if I were at work and had been just given a social summary based on the hear and now, my first thought would be autism related." One of the most specific things he is doing is being VERY literal! And everything at face value. We can no longer make a joke or even slightly sarcastic statement around him. If a TV show is not on at the time he expected it to be - he believes he was "lied to", etc... I see many similarities.

 

In fact, I think back to so many cases that I have been involved in, where I went to visit a family with a child around this age for the first time and left there thinking "this isn't right. He doesn't seem autistic (or more often really Aspergers) to me." But of course, not knowing about PANDAS, it was never something I could put my finger on and I don't have the authority to question a diagnosis at that point, only to assist with services.

 

The most important thing is - YOU know your child. And I certainly see no harm in trying a PANDAS protocol, especially with repeated positive strep results! I'm glad you have one doctor at least willing to try. That is wonderful

 

 

Hello,

I have been reading through all of these postings after doing hours of online research on PANDAS. My son, Braden, is 10 years old and on the autism spectrum. I have been a special educator for over 15 years and have long suspected that Braden, while autistic, exhibits symptoms more related to Tourette's or OCD. He has verbal tics, and cannot get through a sentence without "clucking". He has hand shaking that is both voluntary (self-stim) and involuntary. I could go on and on.

 

At any rate, my husband recently interviewed Beth Maloney on his autism podcast. And after listening, something clicked. I had an AHA moment of "This could be it!".

 

So, we took Braden to the doctor. For many years, every time he's been given a strep test, he has tested positive. This time was no exception. He had a positive rapid strep result even though he is not showing any symptoms of being sick (with strep). We asked for the blood test. His titers level only came out to 199. The doctor told me that this is in the normal limits. Now what? I know, from reading your posts, that many of you have children with low titer numbers.

 

Since Braden isn't "typical" in either autism or Tourette's/OCD, I feel like he won't be seriously looked at by anyone.

 

Now here's the real clincher. We live in China! So finding a doctor who is willing to take this on is difficult. Therefore, I need to do all the research, etc. I want to try Braden on Augmentin, but how do I know how much? The questions could go on and on.

 

Please be honest here. Do you think I could be on the right track with PANDAS? I don't believe I'm in denial about Braden's autism. I would just love to help eliminate some of these tics so he can concentrate and function in society.

 

Thanks so much for your help. I really appreciate any of you who will take the time to answer.

 

Sincerely,

lboll

Hi! That sounds exactly like my daughter! She doesn't get any symptoms of strep other than behavior. The only times she tests neg. for strep is when she is on antibiotics, and sometimes she's tests positive even then. And my daughter has low ASO/AntiDnase titers as well. That suggests to me that your son may have intracellular strep, which means you need an antibiotic that will get at the bacteria inside the cell. Azithromycin seems to be what works best for my child.

 

My daughter has autism...I'm not in denial about that, either, but understand the disclaimer-you've had those looks from professionals too, eh? The "poor-parent-just-cannot-accept" look? Well, here's what I think about that. Autism is, in short, abnormal childhood development. But, there must be something that has or is interfering with that development. It really bothers me that autism is considered a "diagnosis", when its really just a label given to symptoms of whatever is causing the abnormal development. I think, in our case, PANDAS is what caused the autistic SYMPTOMS.

[peglem]

How many children out there may not be truly autistic?

Oh, but I think they are truly autistic...my daughter fits all the criteria for severe autism. Its just that those criteria only identify symptoms of something! I say my daughter is autistic, its just that the autism was caused by PANDAS, which interfered with her development. Since she had it at a very young age, it interfered with her very early development. Children who get this at an older age, have completed early childhood development, so do not present as severely, and are more easily identified because its clear that they were normally developing and then something changed drastically.

But, I think you're right, many of your clients probably have PANDAS as the cause of their autism.

[peglem]

I have a 7 year old son who was diagnosed with PDD-NOS at 2 yrs 2 mos and then with Autism at 6 years. He is considered verbal but has apraxia and communicating is a difficult task he is working hard at. He has been on a gluten free/casein free diet since five years old, which had worked wonders for his digestive tract but had not improved his communciation skills. In the last week of April 2009 he started having out of nowhere uncontrollable rage tantrums that lasted for up to 1 hour. He also started waking up in the middle of the night, pupils dialated, in rage tantrums, kicking his legs crazy. He also would pee every 10-20 minutes (we realize now he has had many rounds of this throughout his little life.) He then started sticking his fingers in his mouth and would make circles with his spit on everything. He also tore apart all of my plants outside for hours. We took him to seven Ped's in all, all tests types of tests done, nothing turned up. I was told by two Ped's that this is "autism", one even told me sometimes a trigger flips and this happens. In one week?...I didn't believe it. I finally ended up at our DAN doctor who recommended we get a CAT scan, again nothing turned up. Then our DAN doctor sent us to Dr. Latimer (we live in DC area.)

We were in the office for 30 minutes and Dr. Latimer said, "I think he has PANDAS." (June 2009) I had never heard of it. She had us get him tested, he came back at the time with CaM Kinase of 147. He went on Predisone and he finally slept and laughed for the first time in 4 months..we were dumbfounded. He tapered off Prednisone and all of his symptoms came back. He got IVIG in Sept 2009. He has been sleeping (knock on tons of wood) since Oct 15th. My husband and I realize that this is the first time in his whole life since he was maybe a year old that he has slept through the night for this long. It is a miracle so far for us. We continue to see improvement everyday. It is slow but we will take it.

I'm inspired! We're seeing Dr. Latimer on Friday (gosh, all the way from Phoenix!) and I'm so hopeful that we're finally getting our miracle! I know my daughter will still be autistic, as treating PANDAS will not suddenly give her the development that didn't happen (though would be nice if she got back some of the stuff that she regressed in). But, I think if we can remove the impediment to development, she has a much better shot in life.