New to all of this and asking for help

[coco]

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.

I think that "true autism" is something genetics gives you, the kind that a physician sees maybe once in his career, prior to the 1980s. This "new" autism, ASD spectrum, pdd, blah, blah, may, in fact be all immunologically-related and may well be as common as strep gone awry...I don't mean to oversimplificate it by any means, but some of these kids, even the ones who have had developmental issues from an early age as undiagnosed Pandas can still be helped greatly, or even saved with aggressive treatment. My dd is making good progress and she's had it for 7 years and she just turned 10. I think it is great that special ed teachers and providers are beginning to talk about this and begin to question and not simply accept the "autism diagnosis" especially in the very young. Especially not now. I often think of that TV commercial that says, "The odds of a child being in a Broadway play, 1 in 10,000...the odd's of a child being diagnosed with autism, 1 in 166".... they may someday should substitute "Pandas" for "Autism."

[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.

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.

 

 

Hello Peglem,

 

Has your daughter done the antibiotics? Has it worked? I notice you're going to see this Dr. Latimer. Is there no one in Phoenix or closer who you could go to? I'm just a little confused as I'm so new to all this.

 

Can someone tell me if the CaM Kinase test is necessary, as I don't think there's any possible way we can get it done here. We will come back to the US for summer, so if I need to start making appointments for doctors there, then please let me know who you might recommend. Thanks!

[rymom]

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.

I think that "true autism" is something genetics gives you, the kind that a physician sees maybe once in his career, prior to the 1980s. This "new" autism, ASD spectrum, pdd, blah, blah, may, in fact be all immunologically-related and may well be as common as strep gone awry...I don't mean to oversimplificate it by any means, but some of these kids, even the ones who have had developmental issues from an early age as undiagnosed Pandas can still be helped greatly, or even saved with aggressive treatment. My dd is making good progress and she's had it for 7 years and she just turned 10. I think it is great that special ed teachers and providers are beginning to talk about this and begin to question and not simply accept the "autism diagnosis" especially in the very young. Especially not now. I often think of that TV commercial that says, "The odds of a child being in a Broadway play, 1 in 10,000...the odd's of a child being diagnosed with autism, 1 in 166".... they may someday should substitute "Pandas" for "Autism."

 

I am right there with peglem leaning towards PANDAS has caused the behaviors of Autism in our son. And I do believe he got it before he turned two before he started speaking more than a few words. We have had the up all night episodes for a long time in our house, just not with the intensity that caused us to finally seek out Dr. Latimer. Dr. Latimer has him on 5mg Azith two times a week. When he has been exposed to strep (in class we have it on his IEP that they have to let us know if there has been an exposure at school) we bump it to 5 mg the first night and three nights of 250 mg, then return back to 5mg two times a week. DS is also on Kyodophilus (probiotic) and Quercitin (supplement for inflammation given by DAN doctor).

[lboll]

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.

I think that "true autism" is something genetics gives you, the kind that a physician sees maybe once in his career, prior to the 1980s. This "new" autism, ASD spectrum, pdd, blah, blah, may, in fact be all immunologically-related and may well be as common as strep gone awry...I don't mean to oversimplificate it by any means, but some of these kids, even the ones who have had developmental issues from an early age as undiagnosed Pandas can still be helped greatly, or even saved with aggressive treatment. My dd is making good progress and she's had it for 7 years and she just turned 10. I think it is great that special ed teachers and providers are beginning to talk about this and begin to question and not simply accept the "autism diagnosis" especially in the very young. Especially not now. I often think of that TV commercial that says, "The odds of a child being in a Broadway play, 1 in 10,000...the odd's of a child being diagnosed with autism, 1 in 166".... they may someday should substitute "Pandas" for "Autism."

 

Coco, how long has your daughter been treated for PANDAS?

[thereishope]

I want to pose a question to you guys. It seems like I'm coming across more moms on other sites that are citing behaviors that seem PANDAS like to me. Some are also saying that they are being told their child may be autistic. However, when I read their experience, I want to tell them to at least explore PANDAS and they owe it to their child to consider it before accepting the autism label. Most of these kids seem to fall in the 5-7 year old range. I always cite my own example how my son at 5 1/2 had to be screened for Asperger's even though he never fit any criterea before. By the time I had the appt w/ the psych, his PANDAS was in the tail end of recovey and they no longer even suspected Asperger's. These parents sound interested for the first few comments back and forth, but then I can tell they think I am off track. It's so hard to explain PANDAS and all the variations to someone who never heard of it before. I feel like I failed the child when I stop hearing back from them. Any suggestions?

 

Also, lboll, the main PANDAS experts in the US will be speaking at the Autism One conference in May in Chicago. Should be very exciting and interesting.

[peglem]

Hello Peglem,

 

Has your daughter done the antibiotics? Has it worked? I notice you're going to see this Dr. Latimer. Is there no one in Phoenix or closer who you could go to? I'm just a little confused as I'm so new to all this.

 

The pediatrician has done all that he could do w/ steroids and abx. He sent us to a rheumatologist and an immunologist. After reading the research, talking to Dr.s Cunningham and Latimer, the rheumatologist was intrigued, thought it was possible we were on to something, but did not feel "comfortable" (yeah, HIS comfort is so important!) treating for this...and gave a referral to Dr. Latimer. If there is somebody local that treats this, I don't know who and neither do Allie's doctors!

The immunologist has said he will do IVIG if it is recommended by dr. Latimer. I think its really political...the rheumy is at the local children's hospital and I get the impression he doesn't think he can get it past the oversite committee.

[tantrums]

I think I was having a hard time formulating my thoughts last night on this. Still am sorftof - LOL! But I do think that this poster said it better for me. It's the "new" influx of autism diagnosis, and the spectrum disorders, that have me perplexed. The adults I see in group homes that are "autistic" are SO much more classic. However, these young kids just coming under services just do not seem to fit the bill in a classic sense. And why the sudden uprising of diagnosis? It would seem environmental to me, like the increase in severe allergies in our kids, why not an increase in auto immune? What some of the case managers around me have been saying for a long time is - what used to be called (and more so than necessary I think) ADHD is now called Autism or Autism Spectrum. And Autism Spectrum gives people a lot of possible help that ADHD diagnosis wouldn't.

 

I think my concern is that the whole spectrum tends to be overdiagnosed when symptoms are more vague or just unclear. So doctors can now just say "oh autism spectrum" without really searching for the CAUSE, which scares me now that I understand PANDAS.

 

I don't by any means mean to say Autism, Aspergers or any other spectrum doesn't exist. I just think it may be too easy to look in a DSM and pick sometimes than look for something that may have a true biochemical cause that may be treatable. That is what scares me!

 

That's what I was fearing with my son. I knew nothing of PANDAS initially but knew in my gut that something medical was going on here. I know just enough about different disorders and developmental issues to know that this wasn't fitting the bill for anything that I had seen before. Now I'm just wondering how many times I HAVE seen it!

 

I may not have the authority to challenge or change a diagnosis, but if I see a young child upon intake for services that seems to fit the bill, I surely will make a suggestion that the parents look up PANDAS!

 

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.

I think that "true autism" is something genetics gives you, the kind that a physician sees maybe once in his career, prior to the 1980s. This "new" autism, ASD spectrum, pdd, blah, blah, may, in fact be all immunologically-related and may well be as common as strep gone awry...I don't mean to oversimplificate it by any means, but some of these kids, even the ones who have had developmental issues from an early age as undiagnosed Pandas can still be helped greatly, or even saved with aggressive treatment. My dd is making good progress and she's had it for 7 years and she just turned 10. I think it is great that special ed teachers and providers are beginning to talk about this and begin to question and not simply accept the "autism diagnosis" especially in the very young. Especially not now. I often think of that TV commercial that says, "The odds of a child being in a Broadway play, 1 in 10,000...the odd's of a child being diagnosed with autism, 1 in 166".... they may someday should substitute "Pandas" for "Autism."

 

Coco, how long has your daughter been treated for PANDAS?

[coco]

Lloll - we have been treating my dd for Pandas since July 2009. High abx, 2-day IVIG with Dr. K. in Chicago in August, and monthly ivigs with her local immuno here in Ct. She has also had 2 steroid scripts.

[thereishope]

I remembered reading this response Buster once wrote. I thought you might be interested. The whole thread can be found here...

 

http://www.latitudes.org/forums/index.php?...ic=5520&hl=

 

Quote from Buster...

 

" About 40% of children who have positive throat cultures exhibit no rise of either ASO or AntiDNAse B. See "A little bit about ASO" at http://www.latitudes.org/forums/index.php?...art=#entry25312

 

According to current research, about 5% of children are likely carriers. Thus 35% of children have infections but for reasons not known don't seem to mount ASO or anti-DNAse B responses. .."

 

 

 

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.

 

 

Sincerely,

lboll

[lboll]

I want to pose a question to you guys. It seems like I'm coming across more moms on other sites that are citing behaviors that seem PANDAS like to me. Some are also saying that they are being told their child may be autistic. However, when I read their experience, I want to tell them to at least explore PANDAS and they owe it to their child to consider it before accepting the autism label. Most of these kids seem to fall in the 5-7 year old range. I always cite my own example how my son at 5 1/2 had to be screened for Asperger's even though he never fit any criterea before. By the time I had the appt w/ the psych, his PANDAS was in the tail end of recovey and they no longer even suspected Asperger's. These parents sound interested for the first few comments back and forth, but then I can tell they think I am off track. It's so hard to explain PANDAS and all the variations to someone who never heard of it before. I feel like I failed the child when I stop hearing back from them. Any suggestions?

 

Also, lboll, the main PANDAS experts in the US will be speaking at the Autism One conference in May in Chicago. Should be very exciting and interesting.

 

 

Hi Vickie,

I'm surprised that the parents aren't jumping at the chance to explore PANDAS.

I've been a "mom" of a child with autism for a long time now. I know there seems to be a few camps- those who believe that vaccinations cause autism and those who don't. It amazes me how much these people fight. I don't really know what I believe except that I know that Braden's vaccines did not contain Thimerasol, so he didn't get it from that. Anyway, my point I'm trying to make is that many people take the side of one of these camps and are willing to explore other reasons, etc. Could that be why they are shutting down when you mention PANDAS? Does this make any sense? It's only 6 am. here in China, so I may be babbling!

[lboll]

I remembered reading this response Buster once wrote. I thought you might be interested. The whole thread can be found here...

 

http://www.latitudes.org/forums/index.php?...ic=5520&hl=

 

Quote from Buster...

 

" About 40% of children who have positive throat cultures exhibit no rise of either ASO or AntiDNAse B. See "A little bit about ASO" at http://www.latitudes.org/forums/index.php?...art=#entry25312

 

According to current research, about 5% of children are likely carriers. Thus 35% of children have infections but for reasons not known don't seem to mount ASO or anti-DNAse B responses. .."

 

 

 

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.

 

 

Sincerely,

lboll

 

 

I had an email from Dr. K this morning in Chicago. I wrote him yesterday after reading all of your postings. He said I should get the AntiDNase B titers done on B and then "I'll have something to go on".

Can someone tell me what the levels are for that one? Or does it just come out positive or negative?

[Suzan]

Hello and welcome and good luck to you. I hope you find the help you need there!

 

Susan

[matis_mom]

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.

 

lboll

Just a quick reply to this part of your post... If he is positive for strep, they should treat him, even if he has no symptoms! The titers are irrelevant, if he has strep, insist on antibiotics. At this point, I would take whatever the doctor is willing to prescribe and see what happens. Best of luck!

 

Isabel