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My son regressed into “autism” at 20 months old…here we are 8 years later wondering if he has PANDAS and how long has he had it. He had strep 2x before he “shut down” and lost all words and eye contact, etc. He has had strange compulsions but everybody always said it was just “stimming”.

Three years ago, age 7, he had high strep titers and the DAN doctor said he may have PANDAS but only put him on herbs. Did not seem too concerned about it. His viral titers and lyme’s were high too.

One year after that, he got really bad, raging, crying, tantrums, more withdrawn. I had him tested for a brain tumor he was so different. MRI, EEG, full gastric workup, etc. Everything was negative. Just "behavioral problems from his autism" they said.

He now “stims” all day –bangs, pounds and cries and melts down with raging tantrums, plus now he looks different… He has body grimaces and looks like his muscles are cramping up, jerking, etc.

He only has a dozen words so I really don’t know what he feels or fears. I am so confused and scared.

We just did a 5 day burst with Dr. K. My son is worse from that. Dr K said just wait at least a week and see. My son is just spiraling downhill.

Any thoughts on “autism” connection? or why worse on steroids?

 

thanks

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Hi laura_s --

 

Sorry to hear about your situation....

 

So he had high strep titers but he wasn't put on antibiotics? Did you run a throat culture?

 

Buster

 

 

My son regressed into “autism” at 20 months old…here we are 8 years later wondering if he has PANDAS and how long has he had it. He had strep 2x before he “shut down” and lost all words and eye contact, etc. He has had strange compulsions but everybody always said it was just “stimming”.

Three years ago, age 7, he had high strep titers and the DAN doctor said he may have PANDAS but only put him on herbs. Did not seem too concerned about it. His viral titers and lyme’s were high too.

One year after that, he got really bad, raging, crying, tantrums, more withdrawn. I had him tested for a brain tumor he was so different. MRI, EEG, full gastric workup, etc. Everything was negative. Just "behavioral problems from his autism" they said.

He now “stims” all day –bangs, pounds and cries and melts down with raging tantrums, plus now he looks different… He has body grimaces and looks like his muscles are cramping up, jerking, etc.

He only has a dozen words so I really don’t know what he feels or fears. I am so confused and scared.

We just did a 5 day burst with Dr. K. My son is worse from that. Dr K said just wait at least a week and see. My son is just spiraling downhill.

Any thoughts on “autism” connection? or why worse on steroids?

 

thanks

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So, his throat was never swabbed to check for strep? But, he had high ASO and/or AntiDnase titers? And your son was positive(or was it just high normal?) for Lyme but was not treated w/ antibiotics for that?

 

I have a 15 year old daughter w/ autism. I firmly believe that autism is NOT a diagnosis, but a label for a set of symptoms. Those symptoms (I think, and her pediatrician agrees) have been caused by PANDAS. But, just from the autism standpoint, this:

bangs, pounds and cries and melts down with raging tantrums
sounds to me like your son is in pain. How does he do with ibuprofin?

 

What kind of compulsions does he have that are seen by others as stims? Does he have any tics or abnormal movements?

 

Did dr. K put him on abx?

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When he was 1 year old he had strep 2x per throat culture and put on antibiotics for 1 week course. He was sick a lot his first year of life. Then he regressed, stop talking and interacting and was diagnosed and labeled "autistic" at 20 months old.

The titers and lyme tests were just part of a DAN workup 3 years ago but nobody put him on any medications for the high titers. Ibuprofen is our life saver. He is also on Seroquel for sleep 100mg and Prozac 5mg in am. We have tried every "autism" treatment possible. The ocd just has taken over. I can no longer call it a stim like I did for years. Yes, he also now has involuntary movements - jerks, flinches, grunts, tightens up. These are really bad right now. He can't even walk without jerking and stiffening. I thought it was that td (tardive...??) from the Seroquel but the doctor doesn't think so.

 

Dr. K has not put him on antibiotics yet. We just did the steroid burst last week. (no positive changes yet)

 

Thank you for your thoughts and input.

Laura

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Welcome to our group. Did Dr K mention anything about getting a Cunningham test done on your child?

 

Also, you said he had 2 strep infections. How soon after the + strep infections, did he shut down? What antibiotics and for how long was he on for to erradicate the strep. I know it was years ago, but maybe you remember?

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Laura-

 

My heart aches reading about your situation with your son. I just want to reach through the screen and help your son!!

 

What were dr. K's impressions?? I, too, am a bit confused.

 

We have a son that is 10 1/2 and just had IVIg with Dr. K. We truly believe he was an early onset case, as does Dr. K. His titers were screaming high, his CaM Kinase was 184%, and his response to the steroid burst was only so so. Too abrupt start; too abrupt stop with some good signs in between, then he crashed. I wonder how good a short burst is as an indicator. My son's mycoplasma pneumoniae IgG was extremely elevated. Dr. k says he sees so many raging kids who check out with this high titer. M. pneumoniae is known to cause encephalopathy, too. I agree that it sounds as though your son is in pain.

 

Hugs. And Prayers for a road to healing.

 

Dawn

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PS after reading the posts that got in before mine. SSRI's caused disinhibition with our son. He got worse. Seroquel and Abilify didn't do a thing and probably made things worse. Namenda is the only one that I would give a thumbs up to for my boy. Of course, every child is so different. Dawn

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Hi Laura, and welcome. I am sorry you and your family are going through this. My advise is to not accept the diagnosis of ASD at all. These days it has become a garbage bucket of symptoms that has no other answer. It sounds like your son has something they have labeled "regressive autism" which is a fairly new term and now sadly all too common. I believe much of it is all immunologically related, hence pandas, not the "autism" like doctors saw maybe once in their careers. You are in good hands with Dr. K. Try to keep in mind that your little guy has been battling this a long time and it will take a long time to fix, but I believe he can improve greatly with the right treatments. You should push to get him on augmentin or azithro for at least several months to see what happens. You can also pursue the ivig option down the road, but I, personally, would be as aggressive as possible to help your little boy.

 

My dd was misdiagnosed at age 5 with pddnos, (had some symptoms since she was a 2-3 years old, although she never met the criteria fully, just glimpses and tendencies.) Then after illness after illness symtoms became much worse, with horrible new things cropping up all the time, until life in the home turned unbearable. at age 8. She is now 9. When we finally got confirmation of Pandas we immediately got 2-day ivig with Dr. K, high-dose abx and she is currently undergoing monthly ivig locally. My daughter is 6 months along since we have started to treat it. We have seen great improvement, but have rough days and a long road ahead. But given a choice I would pick healing Pandas rather than accepting the diagnosis, or misdiagnosis, of autism for my child. All the people on this forum are a great resource, I would be lost without them! Again, welcome and a big hug to you.

 

coco

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He was on antibiotics many times before his first birthday 2 x were for strep the other times for chronic ear infections. We usually used amoxicillin.

Dr. K. said it is either "classic autism" or PANDAS. He is not sure yet. We just know he was fine til 20 months old then completely became "autistic" then 6 years later he became a raging, crying, ocd mess this time labeled "autistic kid who needs risperdal and behavior management". I just can't accept that.

 

Thank you for your prayers.

 

Laura

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Hi Laura...

I'm going to be the devil's advocate and question the appropriateness of a steroid burst w/out concurrently being on anti-biotics. IMO the first and foremost line of defense/treatment against PANDAS should be 1-2 mo. of full-strength/high dose antibiotics (usually azith or augmentin).

 

Many of us have done a steroid burst, but that is while on antibiotics (and often it is after the child has already been on an extended course of antibiotics for some length of time). I wonder if the steroid might not have the desired effect if there is an active strep infection (and no abs to help fight it)...not really cutting down on inflammation and since there is nothing to kill off underlying strep (which may be hiding in small amounts in the throat, sinuses, elsewhere), might have the effect of allowing the strep infection to "take hold" all the more.

 

Has your son had a recent throat culture? Are there any siblings? I would recommend culturing all family members to check for carriers. Our younger dd turned out to be an assymptomatic carrier and our pandas dd reacts when she is positive.

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I just finished Saving Sammy. I would love to see what long term high dose antibiotics would do for Jeremy but so far, no one has prescribed them. Our DAN doctor -like most autism doctors try to avoid antibiotics because these kids usually have chronic yeast infections. The other specialists think it is just behavior. That is the problem with already having an autism diagnosis. Everybody acts like this behavior is to be expected and accepted.

 

I don't know if and when Dr. K. will put him on antibiotics. We are supposed to update him on our steroid burst results next week.

 

Thanks again!

Laura

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Has your son had a recent throat culture? Are there any siblings? I would recommend culturing all family members to check for carriers. Our younger dd turned out to be an assymptomatic carrier and our pandas dd reacts when she is positive.

Hi Laura,

I am sorry your family is going through all this! I was just going to say the same thing as EAMom, was anyone else in the family sick when your son started with the rages/OCD? That would be a great piece of info to have. And do take everyone in and have them checked for strep. I would even run those titers again and see where he is standing (although not all PANDAS kids show elevated antibodies) Best to you and keep asking, someone in this forum will have the answer!

 

Isabel

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I'd go to the regular pediatrician and ask for a strep culture. If they won't do it, take him to urgent care and say he's complaining of a sore throat. Does he get frequent sinus infections? Are there any teeth coming in, or were there teeth coming in when this started getting really bad? Seems like that's about the age when kids are still losing teeth and new ones coming in.

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