Did anyone's child develop autism after PANDAS?

[cab40]

Any supps helpful?

Edited March 23, 2012 by cab40

[peglem]

Sorry, I'm in a kind of doom and gloom situation today. Didn't mean to bum anybody out.

 

Here's the hopeful piece:

People's brains continue learning (building new pathways and connections) all of their lives and there is a program out there that specifically addresses missed development. We started down that path but can no longer afford it. Once Allie is 18 we should be able to start again.

[cab40]

thank you!

Edited March 23, 2012 by cab40

[Ozimum]

Sent you a PM. Also, the improvements we've seen have come slowly but steadily. We've done Biomed for over a year now and we are still seeing improvement.

Edited October 31, 2011 by Ozimum

[PhillyPA]

Wow. I see my post from a year ago has been resurrected. When my son got sick at age 5, CHOP said it could not be autism. They diagnosed him with childhood onset schizophrenia. They admitted that this was an unheard of diagnosis in a 5 year old but said that they did not know what else it could be. They said that it was not autism. However, I agree with Peg. Autism is a cluster of symptoms.

[beeskneesmommy]

God help our children! When I read this thread I have such a visceral fear response that I am going to attempt to not visit it anymore. Warm wishes and goodness to you all! -Kath

[JAG10]

I feel like with autism, you don't turn out okay with pandas maybe its possible...thats why I don't think the two should be mixed together......plus auism is a developmental disorder... pandas just autoimmune.....unless it interferes with critical development and other circuits don't form correctly....like peglem suggested

 

I think I know what you are getting at..... There are just too many unknowns right now as to how the pieces to the neuro-psych-cognitive-motor/tic picture fits together.....like trying to figure out a puzzle with only 25% of the pieces connected.

 

I am an SLP. Of the 60 kids on my caseload, 20 of them are officially diagnosed with an ASD. 7 years ago, it may have been 4 kids for the same district/schools. Lots of reasons for that spike, not one single reason. Those 20 kids' function ranges from gifted and accelerated programing to MR/life skills.....they are all over the map, but usually very high or very low....not as much average.

 

All of this is my opinion/observations/speculation:

 

I would say of those 20 kids, 7 CLEARLY exhibit marked decrease in their specific level of functioning when sick or recently sick in the past. I'm not usually given the specifics about "what type of sick", but these 7 kids get way worse with the social and communication pieces. Most notably (and hardest to "therapy through") they become internally preoccupied and it is very difficult for them to be present, in the moment, with us.....regardless of the activity. I can also see increases in tics, self-stim behaviors, echolalia and stuttering.

 

I would say there is another large portion of the 20, another 8 who are very consistent in the presentation of their symptoms. Now that I think about it....those students do not seem to get sick much, hmmm. I'll have to look up their attend recds. The remaining students are ones I would have difficulty saying one way or another because their parents are trying different psych meds, so who knows what is changing what.

 

Another question for researchers to determine....the relationship between age of onset, timeliness of treatment (medical and therapuetic) and presentation of symptom set. I remember Dr. K telling me symptom set depended where/when development was interrupted.

 

I think those of you with children with ASDs need to do every available therapy to minimize the impact of "interruption of development." Hit the brain-attacking beast from every possible angle {including prayer if you are faithful.}

But the answer, cure, healing, whatever, will come from medicine.

Edited October 31, 2011 by JAG10

[Johnsmom]

I was just thinking about this post on my way to work and was hoping JAG10 would comment.

 

Ive been trying so hard lately to stay focused on moving ahead instead of saying I should've done this or that or intervened earlier. My sons development was always just one step behind and I always got the excuse that he's a boy. He's also my only child so no other siblings to compare to. It wasn't until pre- kindergarten started that things really went wrong. He was always clinging to me but I've seen other clingy kids. There's a lot more but I won't go on.I really don't know what happened nor will I ever. He ended up being diagnosed PDD-NOS and I remember it taking the neurologist a long time to come to her decision.. Years later we met Dr K and he told me that it was a BS diagnosis. After reviewing family history and having rheumatic fever on both mom and dads side, it became clear. When DS is in a good spot, he's never 100%, but I have seen the miracle of the steroid burst and IVIG and that's what keeps me going.

 

Thanks for listening!

 

Ann

 

 

 

I feel like with autism, you don't turn out okay with pandas maybe its possible...thats why I don't think the two should be mixed together......plus auism is a developmental disorder... pandas just autoimmune.....unless it interferes with critical development and other circuits don't form correctly....like peglem suggested

 

I think I know what you are getting at..... There are just too many unknowns right now as to how the pieces to the neuro-psych-cognitive-motor/tic picture fits together.....like trying to figure out a puzzle with only 25% of the pieces connected.

 

I am an SLP. Of the 60 kids on my caseload, 20 of them are officially diagnosed with an ASD. 7 years ago, it may have been 4 kids for the same district/schools. Lots of reasons for that spike, not one single reason. Those 20 kids' function ranges from gifted and accelerated programing to MR/life skills.....they are all over the map, but usually very high or very low....not as much average.

 

All of this is my opinion/observations/speculation:

 

I would say of those 20 kids, 7 CLEARLY exhibit marked decrease in their specific level of functioning when sick or recently sick in the past. I'm not usually given the specifics about "what type of sick", but these 7 kids get way worse with the social and communication pieces. Most notably (and hardest to "therapy through") they become internally preoccupied and it is very difficult for them to be present, in the moment, with us.....regardless of the activity. I can also see increases in tics, self-stim behaviors, echolalia and stuttering.

 

I would say there is another large portion of the 20, another 8 who are very consistent in the presentation of their symptoms. Now that I think about it....those students do not seem to get sick much, hmmm. I'll have to look up their attend recds. The remaining students are ones I would have difficulty saying one way or another because their parents are trying different psych meds, so who knows what is changing what.

 

Another question for researchers to determine....the relationship between age of onset, timeliness of treatment (medical and therapuetic) and presentation of symptom set. I remember Dr. K telling me symptom set depended where/when development was interrupted.

 

I think those of you with children with ASDs need to do every available therapy to minimize the impact of "interruption of development." Hit the brain-attacking beast from every possible angle {including prayer if you are faithful.}

But the answer, cure, healing, whatever, will come from medicine.

[airial95]

My son got the strep infection that triggered his PANDAS at 20 months old. Prior to that he was very verbally and developmentally advanced (full gramatically correct sentences by 18 months, recognizing classmates written names prior to 2). With the onset of PANDAS, it was the tantrums that we noticed first - raging terrible fits of violence. We got the typical "terrible twos", "boys are harder" BS from everyone around us. After 6 months, we couldn't ignore that something was wrong. He regressed verbally so significantly - to only 1-2 word replies (if you could get him to reply at all), drop off at day care took over an hour every day, bedtime was a nightmare, and we could barely leave the house with him at all.

 

Our pediatrician immediately connected the strep infection to his regression (a unknowningly

well timed email to him asking about a sudden biting/aggression problem 2 weeks after the infection helped!). But he did tell us that our son, if he hadn't seen his developmental milestones himself previously, was exhibiting all of the classic signs of Autism. He still worried about potential Aspbergers at that point, but said that Aspbergers can't be properly dx until they're a bit older (the social aspects of it I guess?).

 

Once my son started PANDAS treatments ALL symptoms of autism went away. When we can get him healthy, he's back to his normal self. If we didn't have such an astute pediatrician, I'm fairly certain we would've been given an Autism dx and sent on our way. We would be on a much different path today if that happened.

 

I think that's the reason there's so much seeming overlap between the two on this forum. Until recently, even Swedo's criteria listed 3 as the minimum age of onset. So even well versed Dr's might not make the connection in kids so young. Dr. Murphy told us that our son was the youngest documented case she'd ever seen (he was pretty classic sudden onset as well) and did a case study on him.

 

If the young ones with PANDAS are mislabeled early on, it may take years for parents to find the right answers.

 

As for the "new normal", that's something we are constantly fighting with our son. His OCD rituals become standard practice for him - like washing your hands after using the restroom. It's just something you "do". The therapy works for him - when he's not actively figthing a strep infection - but we push through even when he is - just for consistency.

[cab40]

My son got the strep infection that triggered his PANDAS at 20 months old. Prior to that he was very verbally and developmentally advanced (full gramatically correct sentences by 18 months, recognizing classmates written names prior to 2). With the onset of PANDAS, it was the tantrums that we noticed first - raging terrible fits of violence. We got the typical "terrible twos", "boys are harder" BS from everyone around us. After 6 months, we couldn't ignore that something was wrong. He regressed verbally so significantly - to only 1-2 word replies (if you could get him to reply at all), drop off at day care took over an hour every day, bedtime was a nightmare, and we could barely leave the house with him at all.

 

Our pediatrician immediately connected the strep infection to his regression (a unknowningly

well timed email to him asking about a sudden biting/aggression problem 2 weeks after the infection helped!). But he did tell us that our son, if he hadn't seen his developmental milestones himself previously, was exhibiting all of the classic signs of Autism. He still worried about potential Aspbergers at that point, but said that Aspbergers can't be properly dx until they're a bit older (the social aspects of it I guess?).

 

Once my son started PANDAS treatments ALL symptoms of autism went away. When we can get him healthy, he's back to his normal self. If we didn't have such an astute pediatrician, I'm fairly certain we would've been given an Autism dx and sent on our way. We would be on a much different path today if that happened.

 

I think that's the reason there's so much seeming overlap between the two on this forum. Until recently, even Swedo's criteria listed 3 as the minimum age of onset. So even well versed Dr's might not make the connection in kids so young. Dr. Murphy told us that our son was the youngest documented case she'd ever seen (he was pretty classic sudden onset as well) and did a case study on him.

 

If the young ones with PANDAS are mislabeled early on, it may take years for parents to find the right answers.

 

As for the "new normal", that's something we are constantly fighting with our son. His OCD rituals become standard practice for him - like washing your hands after using the restroom. It's just something you "do". The therapy works for him - when he's not actively figthing a strep infection - but we push through even when he is - just for consistency.

[cab40]

Arial95, what PANDAS treatments did you do?

Edited March 23, 2012 by cab40

[cab40]

Sorry, I'm in a kind of doom and gloom situation today. Didn't mean to bum anybody out.

 

Here's the hopeful piece:

People's brains continue learning (building new pathways and connections) all of their lives and there is a program out there that specifically addresses missed development. We started down that path but can no longer afford it. Once Allie is 18 we should be able to start again.

[cab40]

Dear P,

 

What therapy are you referring to? I would like to hear about it...

Edited March 23, 2012 by cab40

[cab40]

I was just thinking about this post on my way to work and was hoping JAG10 would comment.

 

Ive been trying so hard lately to stay focused on moving ahead instead of saying I should've done this or that or intervened earlier. My sons development was always just one step behind and I always got the excuse that he's a boy. He's also my only child so no other siblings to compare to. It wasn't until pre- kindergarten started that things really went wrong. He was always clinging to me but I've seen other clingy kids. There's a lot more but I won't go on.I really don't know what happened nor will I ever. He ended up being diagnosed PDD-NOS and I remember it taking the neurologist a long time to come to her decision.. Years later we met Dr K and he told me that it was a BS diagnosis. After reviewing family history and having rheumatic fever on both mom and dads side, it became clear. When DS is in a good spot, he's never 100%, but I have seen the miracle of the steroid burst and IVIG and that's what keeps me going.

 

Thanks for listening!

 

Ann

 

 

 

I feel like with autism, you don't turn out okay with pandas maybe its possible...thats why I don't think the two should be mixed together......plus auism is a developmental disorder... pandas just autoimmune.....unless it interferes with critical development and other circuits don't form correctly....like peglem suggested

 

I think I know what you are getting at..... There are just too many unknowns right now as to how the pieces to the neuro-psych-cognitive-motor/tic picture fits together.....like trying to figure out a puzzle with only 25% of the pieces connected.

 

I am an SLP. Of the 60 kids on my caseload, 20 of them are officially diagnosed with an ASD. 7 years ago, it may have been 4 kids for the same district/schools. Lots of reasons for that spike, not one single reason. Those 20 kids' function ranges from gifted and accelerated programing to MR/life skills.....they are all over the map, but usually very high or very low....not as much average.

 

All of this is my opinion/observations/speculation:

 

I would say of those 20 kids, 7 CLEARLY exhibit marked decrease in their specific level of functioning when sick or recently sick in the past. I'm not usually given the specifics about "what type of sick", but these 7 kids get way worse with the social and communication pieces. Most notably (and hardest to "therapy through") they become internally preoccupied and it is very difficult for them to be present, in the moment, with us.....regardless of the activity. I can also see increases in tics, self-stim behaviors, echolalia and stuttering.

 

I would say there is another large portion of the 20, another 8 who are very consistent in the presentation of their symptoms. Now that I think about it....those students do not seem to get sick much, hmmm. I'll have to look up their attend recds. The remaining students are ones I would have difficulty saying one way or another because their parents are trying different psych meds, so who knows what is changing what.

 

Another question for researchers to determine....the relationship between age of onset, timeliness of treatment (medical and therapuetic) and presentation of symptom set. I remember Dr. K telling me symptom set depended where/when development was interrupted.

 

I think those of you with children with ASDs need to do every available therapy to minimize the impact of "interruption of development." Hit the brain-attacking beast from every possible angle {including prayer if you are faithful.}

But the answer, cure, healing, whatever, will come from medicine.

Edited March 23, 2012 by cab40

[peglem]

Dear Peggy,

 

What therapy are you referring to? I would like to hear about it....C

RDI, Relationship Development Intervention rdiconnect.com

 

A coach teaches you how to very deliberately guide development in your child in a natural developmental progression and monitors progress.

Edited October 31, 2011 by peglem