Does this sounds like PANS / PANDAS?

[lilsmom]

Hi. I'm a new member who has been scouring your postings for the last couple days. I'm hoping some of you with experience might chime in here with thoughts or comments.

 

My daughter has an ASD diagnosis, she is in 1st grade, pretty high functioning and verbal. What brings me here is I'm wondering about a PANDAS/ PANS type disorder, because DD had tremendous improvement after a course of antibiotics (for an infected tick bite.) The difference was akin to turning on a light switch. The improvements began at the 10 days, and after a week or so she returned to her normal self. She also runs a low grade fever pretty much all the time. There are a bunch of other things, but it was mainly her response to antibiotics that made me wonder...I saw with my own eyes that she could get better under the right circumstances. She is also one of these kids that improves when she is sick with a fever.

 

Does it sounds like a PANDAS doctor might be able to help us? I'm not even sure PANDAS would apply to her, but I believe there is a huge immune component. Am I headed in the right direction here? We are fairly close to Dr. Latimer in Maryland...would that be a good place to start?

 

About a year ago DD broke out with a ferocious grimacing tic that she did several times a minute. It subsided quickly over the course of a couple days. Our DAN did send up for Strep antibodies test immediately, but the results did not show anything. I don't think she has any other issues with tics. She does not seem to have a lot of OCD, but she is pretty rigid (especially about things being "right", though that goes along with ASD.)

 

Thank you for reading. Any suggestions will be appreciated.

[Chemar]

Hi and welcome to the forum

Just bumping up your new post so others can see it and respond

[pr40]

if abx changes her asd symptoms, I would run to Latimer.

I would NOT however, introduce my child as ASD with possible pandas. I would start with grimacing and the effect abx had on her, with a recent tick bite. If you start with ASD, you might seem like yet another mother too hopeful for her child with autism -- I am quoting what I heard from two PANDAS drs, said with a very disparaging tone.

Edited February 22, 2014 by pr40

[lilsmom]

if abx changes her asd symptoms, I would run to Latimer.

I would NOT however, introduce my child as ASD with possible pandas. I would start with grimacing and the effect abx had on her, with a recent tick bite. If you start with ASD, you might seem like yet another mother too hopeful for her child with autism -- I am quoting what I heard from two PANDAS drs, said with a very disparaging tone.

 

 

Thank you for the input, I didn't realize/expect there would be that kind of attitude, and considering many ASD kids also suffer from PANDAS/PANS, surprising. And very disappointing to hear. Sounds like finding the right doctor for us is going to be paramount. We already have a DAN who could not be less interested in exploring this.

 

I'm not saying DD is not ASD. However, I need to find someone or someway to explain why she improved after ABX.

 

Thank you for the response and input, I will definitely take that information to heart.

[mama2alex]

Hi, It's great you're here asking questions! Can you tell more about the "infected tick bite?" I ask because many PANDAS/PANS kids have been diagnosed with Lyme and some have seen great improvement with Lyme treatment (that's been our experience). Also, some ASD kids see great improvement or recovery from autism with Lyme treatment. There's a website called Lyme Induced Autism you might want to peek at.

 

Why did they think the bite was infected? How long a course of antibiotics was she given? Did they look for Lyme and other tick-born illnesses?

[rowingmom]

I would try to find and ILADS trained LLMD (Lyme Literate Medical Doctor) with history of a tic bite. Ours knew right away that our daughter's PANS/PANDAS/Aspergers symptoms would resolve with treatment for her infections. They have.

[qannie47]

You have nothing to lose and everything to gain by checking into the immune component. If I had listened to others with regards to both my children, age 8, they are twins, both my boys would be off the deep end by now. BTW, both are doing great for different reasons.... Follow your gut. For starters, you are in the right place. I think Dr. L is a GREAT start.....Best of luck

Edited February 23, 2014 by qannie47

[lilsmom]

Hi, It's great you're here asking questions! Can you tell more about the "infected tick bite?" I ask because many PANDAS/PANS kids have been diagnosed with Lyme and some have seen great improvement with Lyme treatment (that's been our experience). Also, some ASD kids see great improvement or recovery from autism with Lyme treatment. There's a website called Lyme Induced Autism you might want to peek at.

 

Why did they think the bite was infected? How long a course of antibiotics was she given? Did they look for Lyme and other tick-born illnesses?

 

 

 

About the tick bite. I probably didn't explain that well. Her ASD diagnosis came way before the tick bite. She had a small tick on her neck, we removed it. Over the next week or so the skin at the site of the bite was getting redder, inflamed...in general looking worse, instead of better. I don't think she had any neurologic symptoms, or at least that I noticed ( I should go back and check her ABA charts, which kept pretty meticulous detail of her daily status.) Anyway, we ended up taking her in, and the doctor was concerned it was infected, hence the abx (10 days.) At the end of 10 days she was walking up to random kids and initiating whole conversations, which she didn't do before then and has not done since.

 

Also, DD was treated with ABA therapy (behavioral therapy where they keep very detailed records of the child's behaviors and responses.) Our ABA therapist brought to my attention that on two separate occasions, DD improved with abx treatment for strep. The first time the therapist chalked it up to a coincidence, but after the second time she thought there was a correlation and mentioned the idea of PANDAS to me. This was two years ago, and we have since stopped ABA, and aside from the tick-bite, DD has not been sick with strep or anything else since. So I have not had any other experiences to compare to.

 

So, I'm not really sold on the whole PANDAS thing for DD, but that is why I am here asking for opinions. I think there are some things going on that need to be looked at, and I don't feel our current DAN is interested. So, I've ended up researching if a PANDAS doctor could help us.

 

I really thank you all for the input. This is a group that understands how hard it can be to find the help we need for our kids.

[Mommy2MCL]

My thoughts would be if you had one tick bite, what's to stop you from having one years before that went unnoticed? If you see improvement on antibiotics and have a known tick bite, then go with your gut and get to a doctor who knows about lyme and PANDAS...

 

Good luck and keep us updated.

[T_Anna]

Illsmom, welcome.

It definitely sounds like it could also
Be PANDAs. I think that Dr.T has spoken a ton about PANDAS and ASD and PDD-NoS.

T.Anna

[qannie47]

Have you considered a longer round of abx to see if improvement is repeated? I would even go as far as a 30 day round. This could be a real eye opener to you.

[LexMom]

My son never had elevated titers, even during a bout of strep. Does she have stomach problems? We have seen remarkable improvement after our son was treated for h.pylori.

[riffleshell]

Just tossing this out there: My understanding is that antibiotics also have an anti-inflammatory effect. Perhaps that is what is helping your daughter?

 

I don't know Dr. L except by reputation on this board but I would try to see her or someone who can help. Even it if is not PANDAS per se, it could be autoimmune. I'd keep investigating.