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Did anyone's child develop autism after PANDAS?


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My child was happy and healthy up until age 5 when he developed autism after a PANDAS explosion. It was overnight. He had a severe headache. Lots of chorea. Mutism. Anyone else's child develop autism or autistic like symptoms after PANDAS? What was your child's age?

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Well, my son had to be screened for autism or Aspergers because if all the issues that were present. By the time the appt came up, he had recovered more and many of the issues had self-resolved and it was no longer a concern on the part of the doctors. I always knew the issues were due to PANDAS since they developed during an exacerbation. He was age 5.

Edited by Vickie
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Yes my son had his first episode at age one with tics and chorea but then went on to develop on time with talking and walking. However after shots at age 3 he started to regress and developed ADHD and impulse issues. Then he started having compulsions and tantrums that looked autistic when we did not go along with him. So yes I would say with each exacerbation his symptoms have gotten worse and his baseline has gotten back to a little less then typical. He now on a daily basis has motor delays, propriosensory issues and ADHD along with moods. When he is in exacerbation he is worse and more compulsions and tics and anxiety, however on a daily basis he still has small tics and attention trouble and moods. He could be considered aspergers but it is very slight and getting a diagnosis has been difficult on some tests like the ADOS. Some social delays but he is friendly and outgoing. It is his feelings that are easily hurt and sensitive and he overreacts. I have him in social skills group and OT weekly and therapy. I think he is improving but we are using meds for the meltdowns and ADHD and compulsions. Still the meltdowns do occasionally come through as he did last week when he refused to go to school when I wouldn't give him money for a bookfair. He is on an IEP for OHI and I work very closely with the school with his learning delays. A psychiatrist did diagnose him with aspergers and tourettes and adhd and ocd and pandas. It helps for school purposes to have them in writing.

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As an OT who specializes in working with autistic kids, I will go on record as saying that your child may have autistic-like symptoms, but it is not autism. I'm sure they are symptoms related to PANDAS, which causes inflammation in the basal ganglia, and who knows...maybe some other areas as well (honestly, I think that Autism as a whole is probably an inflammatory process in the brain, but that's another issue.) The fact that it came on at 5 years old indicates that the symptoms are being caused by something else...in his case an infection.

 

As you know, my son has also developed speech problems off and on during his rounds of PANDAS (starting at 8 years old)...slurred speech, mutism, etc. Luckily, he has always come out of them within a few hours, but it's very scary. He also has chorea, tics, OCD, and all the other symptoms. He's been described by his psychologist as having "Autistic-like" social skills problems.

 

My other son is diagnosed with Asperger's (came way before we figured out he had PANDAS,) but also not really identified until 4th grade, and officially diagnosed in 7th grade (but he was "different" from as long as I can remember).. Once we get the PANDAS symptoms under control (and hopefully we will be able to, because they are much older teens), we'll see what happens to those Asperger's symptoms. But, both my boys do present very differently...mostly in terms of social communication and socialization (even though they both have social skills problems...they're just "different" social skills problems), and I do believe that he probably really does have a co-dx of Asperger's. Their PANDAS symptoms are also quite different, as one has more chorea, speech involvement that comes and goes, tics, OCD, anxiety, rages, while the other has more depressive type behavior,rages, anxiety, OCD, breaking walls, and suicidal ideation.

 

Both my kids are on IEP for OHI, and it really gets them all the services they need.

 

Look up the diagnosis of post-infectious encephalitis, and see if that matches more of what you're seeing. I think Dr. L. sometimes uses that diagnosis for these kids. If you PM me, I'll send you an easy link to an article about it. I saw it, and there was no question it matched my guys.

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As an OT who specializes in working with autistic kids, I will go on record as saying that your child may have autistic-like symptoms, but it is not autism. I'm sure they are symptoms related to PANDAS, which causes inflammation in the basal ganglia, and who knows...maybe some other areas as well (honestly, I think that Autism as a whole is probably an inflammatory process in the brain, but that's another issue.) The fact that it came on at 5 years old indicates that the symptoms are being caused by something else...in his case an infection.

 

As you know, my son has also developed speech problems off and on during his rounds of PANDAS (starting at 8 years old)...slurred speech, mutism, etc. Luckily, he has always come out of them within a few hours, but it's very scary. He also has chorea, tics, OCD, and all the other symptoms. He's been described by his psychologist as having "Autistic-like" social skills problems.

 

My other son is diagnosed with Asperger's (came way before we figured out he had PANDAS,) but also not really identified until 4th grade, and officially diagnosed in 7th grade (but he was "different" from as long as I can remember).. Once we get the PANDAS symptoms under control (and hopefully we will be able to, because they are much older teens), we'll see what happens to those Asperger's symptoms. But, both my boys do present very differently...mostly in terms of social communication and socialization (even though they both have social skills problems...they're just "different" social skills problems), and I do believe that he probably really does have a co-dx of Asperger's. Their PANDAS symptoms are also quite different, as one has more chorea, speech involvement that comes and goes, tics, OCD, anxiety, rages, while the other has more depressive type behavior,rages, anxiety, OCD, breaking walls, and suicidal ideation.

 

Both my kids are on IEP for OHI, and it really gets them all the services they need.

 

Look up the diagnosis of post-infectious encephalitis, and see if that matches more of what you're seeing. I think Dr. L. sometimes uses that diagnosis for these kids. If you PM me, I'll send you an easy link to an article about it. I saw it, and there was no question it matched my guys.

TPotter--Your mail box is full, would you mind sending me the link to the article as well? Thanks!!!

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His PANDAS doctor explained to me that what happened to my son has nothing to do with autism, although it looks just like it. She said he is showing autistic symptoms. She said that autism does not come on overnight in 5 year olds.

Edited by PhillyPA
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For my son, some of qualities that they considered "autistic like" (at least enough to warrant a screening according to them) started to really fade and go away maybe around 3 months into recovery. Makes one wonder if it's an age thing correlated with their onset. Again, my son was 5 also.

 

His PANDAS doctor explained to me that what happened to Benjamin has nothing to do with autism, although it looks just like it. She said he is showing autistic symptoms. She said that autism does not come on overnight in 5 year olds.

Edited by Vickie
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Vickie it seems like you got help for your son pretty quickly. We went from specialist to specialist who knew nothing. They called it the strangest case they had ever seen. He didn't start treatment for PANDAS until 2 1/2 years later. He had three ivig's this summer and is on a high dose of augmentin. The autistic symptoms are slowly fading. He had autistic features with a twist. He was completely aware of the change and depressed by it. He would cry and say, "I want to talk." It was so hard to go through for so long. He is doing so much better but he is still not back to himself.

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Yes, we were lucky to catch it quickly and then identify each subsequent exacerbation pretty much on day of onset. My son was the opposite of yours in that he wasn't aware what was going on. Oddly, it was only a little over a year ago and he has no memory at all of those feelings, mannerisms, etc. every so oftn he'll recall me saying something to him during that time, but not much. Just a little over a week ago I sat and talked to him about it and explained how he gets if he contracts strep. I thought this was important so he understands he needs to come to me if he feel different or has odd thoughts. He needs to know I may be able to help. He really had no memory.He remembers the good things that happened during that time like trick or treating but doesn't remember how "lost" he was while we "guided" him trick or treating or what we had to go through in decisions about costumes or just getting him out the door.I guess you can say he has a selective memory of that time.

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My daughter looked autistic when in her PANDAS episode.

 

No social interaction, no speaking, vacant stares, defensive posture, startled at soft sounds. She went from, a completely independant 6 yr old to a child that I had to do everything for...

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YES!!!!!!!!!! My son was diagnosed Aspergers this past Monday after a full neuropsychological evaluation. I asked the dr over and over how he could have been normally developing for 5y9m and then suddenly go downhill. He felt there were signs all along. This all started last Oct after receiving the seasonal FluMist. We've had the typical wax and wane symptoms. Better in Dec, Jan, Feb, explosion in Mar. Better this summer. A little over a week ago I told my husband it was starting up again. Right now, he has all the signs and symptoms of Aspergers. Tics and ocd's. Talking in circles. Well, I could go on and on but I know you all have the same experiences.

 

My son was also diagnosed as seriously depressed on Mon. A 6y9m boy! He is quite bright and he is very frustrated and unhappy w/ his loss of social skills, and coordination. His gross and fine motor skills used to developmentally ahead. In the last month or so, he has started bumping into things, tripping, stumbling and dropping things. Last week he told me he was nothing but a clumsy weirdo.

 

Today, I can happily(if you can even say that when your child has a serious illness) say that after a consult w/ Dr T, he has a tentative diagnosis of PANDAS pending a battery of blood testing and a round of Biaxin. I feel like we are finally getting somewhere.

 

Cindy

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My younger son had definite autistic/asperger qualities during acute onset. (no eye contact, social withdrawl, lining and stacking things, etc) He was 2 months shy of 5 years old.

My older son was 7 1/2 at onset and had none of these symptoms.

Edited by P.Mom
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Yes, we were lucky to catch it quickly and then identify each subsequent exacerbation pretty much on day of onset. My son was the opposite of yours in that he wasn't aware what was going on. Oddly, it was only a little over a year ago and he has no memory at all of those feelings, mannerisms, etc. every so oftn he'll recall me saying something to him during that time, but not much. Just a little over a week ago I sat and talked to him about it and explained how he gets if he contracts strep. I thought this was important so he understands he needs to come to me if he feel different or has odd thoughts. He needs to know I may be able to help. He really had no memory.He remembers the good things that happened during that time like trick or treating but doesn't remember how "lost" he was while we "guided" him trick or treating or what we had to go through in decisions about costumes or just getting him out the door.I guess you can say he has a selective memory of that time.

 

 

Vickie!

 

How very fortunate that he doesn't remember!! My older son doesn't have a clue, but, my younger son remembers it like it was yesterday! (and it was over 3 years ago!!) :(

 

He will not even talk about it ....gets very upset if I bring it up, but, I, too, felt I needed to sit the boys down and make sure they knew about strep and their "feelings". He hated every second of every word I said....my older son went with the flow. I think it really pains him to go back to those memories. He knew he was "lost" when it was happening to him........he knew something was very wrong, even at 4 years old.....double :(

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My son was diagnosed with Asperger's at 6 1/2. I kept asking the doctors how come he just started these behaviors after he turned 4. They said it just happens that way sometimes. Now I know that when you have strep deep in your sinuses that never clears, my son never cleared his PANDAS behaviors. Also, he has Lyme disease that severely compromised his immune system. Possibly that is why he could never clear the strep in his sinuses. Bicillin shots are doing wonders for his behavior (if not for his backside). My son also does not seem to remember the difficult days and hours and all of the tears. Personally, I am very thankful that he does not remember. We are having some wonderful days, and the nurses at his new pediatrician's office are stunned that anyone thought my son had Asperger's.

 

Someday, I think the diagnosis of Autism/Asperger's will be called something else and it will involve immune system disfunction. There are too many of these B###S### diagnosis of Aspergers/Autism for it to be correct. Human evolution cannot change that greatly in one generation.

 

Also, when you have an Autism or Asperger diagnosis, it seems like no one wants to look any deeper into what could possibly be wrong physically. They just send you on your way with many mind altering drugs and social therapy and tell you to have a nice life. That diagnosis of Aspergers could have killed my son if I had not looked deeper to find out what was making him act and look sicker and sicker. We wasted three years trying to help him with therapy and drugs. Then we spent another 2 1/2 years trying to get the right medical answers, while still doing social skills therapy. Now that we have the right answers, he is gaining ground at an amazing rate!!! I am very blessed.

 

While saying I am very blessed, I am also very bitter! We kept telling doctor after doctor, that this did not make sense because he was fine until he was 4 to 4 1/2. I don't know if they thought we were in denial or what, but nobody took us seriously, even the DAN doc we went to. We have used most of our savings, I have had to leave my job as a teacher, my son was asked to leave his previous school (where I had previously worked), we have lost friends, had arguments with family members, and our teenage daughter has been through heck as well with all of this. My marriage has survived because we dug in and agreed that no matter what-we'd stay together. I know I am preaching to the choir, but I just need to vent today.

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