How many here also have an Autism diagnosis?

[Kaki]

Reading the question about how many have tics, made me wonder about Austim. So many of the behaviors I read about here sound like Autism. My daughter was dx with both. She has stimmed since she was a baby. But, I would attribute that to Austim and not the PANDAS. The PANDAS dx came with the sudden onset of OCD/anxiety and Strep.

[peglem]

Reading the question about how many have tics, made me wonder about Austim. So many of the behaviors I read about here sound like Autism. My daughter was dx with both. She has stimmed since she was a baby. But, I would attribute that to Austim and not the PANDAS. The PANDAS dx came with the sudden onset of OCD/anxiety and Strep.

My daughter has both, but I think it was the PANDAS that caused the autism characteristics. How do you tell the difference, especially in a baby, between stims and tics and/or compulsions or obsessions?

[NancyD]

ASD, colitis, PANDAS, and Lyme. However, DD14 no longer meets diagnostic criteria for ASD and colitis is gone. PANDAS seems to be in remission. Just starting to treat Lyme.

[momcap]

I questioned Aspergers in my son and the specialist could neither diagnose it, nor rule it out (gee thanks for the help). He is becoming less and less Aspie-like as he ages. I no longer think he is on the spectrum, although in his last exacerbation he was spinning and hand flapping (never saw hand flapping from him before). Who knows? If he is on the spectrum he would be VERY mild and much less so than a year ago.

[Stephanie2]

Both of my boys were somewhere on the spectrum at one point (my 5 yo still visits it frequently ). Neither has been evaluated. DH is very much against it and I don't want to spend the money on a good eval. We just took them to the DAN doctor...that's where all of our money goes now

 

For us, there is more going on than just pandas (although pandas has been the hardest to manage). They both have gut issues right from the start that make them look autistic (yeast, clostridia, leaky gut, klebsiella, etc...). We finally have pandas under control and are currently pursuing the SCD to take care of the gut. I am hopeful/optimistic that this will get us where I want them to be...

 

All the other supps have helped with other things such as mitochondrial dysfunction and methylation issues and decreased immunity, etc. etc...

[PhillyPA]

My son was perfectly normal and healthy up until age five. That's right - FIVE. He got pandas overnight. Lost his language. Became autistic.

[nicklemama]

My DS6 was also perfectly fine until last fall when he was 5 when we believe he had his first PANDAS symptoms of raging, ocds, severe separation anxiety. He had an exacerbation in March. Sometime over the insuing months, he began to display autistic behaviors and had a very transient head turning tic that disappeared by the end of the summer. A couple of weeks ago, he was diagnosed Aspergers the same day as he began throat clearing and eye blinking tics. This boy was not on the spectrum several months ago. He has only tentatively been diagnosed w/ PANDAS. Blood work came back normal this week but Dr still feels its PANDAS and he's been on biaxin for 12 days.

 

Cindy

[ForyouCG]

My son has both and I agree with peglem, I believe it was PANDAS all along that caused the autism. My son was diagnosed with PANDAS at 14, his present age and has regressed quite a bit. Looking back, I can see many PANDAS symptoms that were taken for autism as both of these symptoms may overlap.

I was always puzzled as to why my son when very young and diagnosed with autism would improve dramatically with autism symptoms when on steroids, antibiotics or when he had a fever.

 

Was it really autism...or was it PANDAS all along?

[tired mom]

My daughter in not autistic but when she had her first exacerbation at the age of 10 I remember thinking (did not know of pandas then)her behavior was very similar to autism. I do believe that Pandas resembles autism.

[Joan Pandas Mom]

I had the same experience with my son. When he first developed symptoms (within 24-48 hrs and 9 years old) I didn't know about PANDAS then either. I thought it was Autism. Someone told me that kids can't just turn Autistic. I am wondering it lately. He started a new compulsion where he can't finish his words or sentences. He barely talks. He use to be very outgoing. Can PANDAS cause Autism in a 9 year old?

[jjl]

Great question. Our two sons were dx with autism at 2.5 yrs. The symptoms do overlap and it makes you wonder.

 

I hate the term autism because it is not a treatable term unless you believe the psychiatrists.

 

If you believe symptoms are similar, then the term PANDAS is easier to understand because it gives you an illness to focus on instead of a generic term.

 

Our boys have also done well on abx and of course over the yrs noone has ever been able to explain the symptoms other than the standard "that's just autism". And we have never seen any treatments (autism or otherwise) that were successful at addressing these symptoms. GERD for spitting...NOT, over active bladder meds for frequent urination...NOT, possible seizures, chiari, high testosterone, etc. to explain these symptoms...NOT.

 

So, now here we all are on this forum, with very similar symptoms, and amazingly there are kids without autism that are getting better with PANDAS treatments. Is it possible that our kids with autism will get better with PANDAS treatments? What will happen with all the labels. I guess time will tell.

 

Sorry for the rant, but it is bitter sweet to think an illness like PANDAS that has a label tied to a medical problem could resolve what many people in the autism community call symptoms of autism. We are fortunate that this forum is here and I would love to find out how all the autism kids are doing on PANDAS treatments. John L

[Priscilla]

I believe my dd has had PANDAS since about 1 yr old (now 8). There were several times over the years when I looked up Autism to see if it fit because of things she was doing. Never quite fit, but I do think alot of Autism Diagnosis could actually be infection/virus/autoimmune related.

[matis_mom]

We just took them to the DAN doctor...that's where all of our money goes now

Stephanie, you crack me up!

We finally have pandas under control and are currently pursuing the SCD to take care of the gut. I am hopeful/optimistic that this will get us where I want them to be...

From now on you'll have to split for money between the DAN doc and the grocery store and/or special order items, and most of your time will be spent in the kitchen! Have fun with it, it's kind of neat, and there are tons of delicious recipes. Glad to hear you are giving it a try

[matis_mom]

My DS6 was also perfectly fine until last fall when he was 5 when we believe he had his first PANDAS symptoms of raging, ocds, severe separation anxiety. He had an exacerbation in March. Sometime over the insuing months, he began to display autistic behaviors and had a very transient head turning tic that disappeared by the end of the summer. A couple of weeks ago, he was diagnosed Aspergers the same day as he began throat clearing and eye blinking tics. This boy was not on the spectrum several months ago. He has only tentatively been diagnosed w/ PANDAS. Blood work came back normal this week but Dr still feels its PANDAS and he's been on biaxin for 12 days.

 

Cindy

Breaks my heart to hear these stories! I hope and pray every mom here gets their child back 100%

Keep hoping, keep praying, keep treating, keep trying.

 

Cindy,

Have you seen any improvement since starting abxs?

Edited October 29, 2010 by mati's mom

[T_Mom]

My two daughters are not on the spectrum. I can attest however, that when my oldest was in her worst exacerbation she presented as having severe autism (non-verbal for a month, holding painful positions, spitting, eyes closed, gone.) It was clear to me that at that time she could have been identified as having autism. There has got to be a connection.