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Please help me with my son....


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My son has autism.....almost 9 years old. Was doing well. Every winter though, he has exacerbations of anxiety and need for repetition of certain words, also phrases that cause him anxiety and he must have them repeated. Also, he goes through phrases where he needs hoh to write and he hates to color. That is HOH too. This would gradually improve towards May and through the summer. Something else that rings a bell now is I had stopped his VSL 3 probiotic that does have strep in it. When I saw him going downhill in Feb. I restarted it as I had no idea this could be strep PANDAS problem. I noted he reacted to that and stopped it. So there is yet another "strep" clue.

 

He was drinking camel milk since August which has many listed benefits for immune/gut/etc. Many reported seeing good things from it. We did see positives. We also saw alot of sickness this winter where he gets sicks for 2 weeks and then takes 2 weeks to have body inflammation go down.

 

However, in Feb. I saw decrease in language. I stopped camel milk after reading about Folate antibodies and language seemed to come back atleast some. As the weeks in Feb. continued on, he continued to have anxiety, get stuck on buzz words. He would have a good day here and there. He also wanted Hand Over Hand for everything. Still to this day, he won't click the mouse button for example. He went through a phase where he wouldn't use his spoon to eat food unless you scooped it for him.

 

At the beginning of March, he started to have extreme sensory defensiveness. If we would touch his shoulders, he would connect that with the anxiety buzz phrase "sit down" and need us to sit him down adn say the word. Similar stories if you touched his back, leg, fingers....it is "fingers down" and you have to say fingers down and physically put his fingers down. So this is his OCD....it is not like OCD with cleanliness,etc. Also, he would wake at night and say HELP ME and want me to put both arms around him instead of just the one I already had around him. He also says "running" and we have to pretend we are running in between transitions and say "running".

 

About 2 1/2 weeks ago, he had a runny nose for 2 days and he was very happy. It went away. Never went to his chest like colds always do.

 

About 1 1/2 weeks ago, he had a fever only Monday night and Tuesday. Again, so happy during the fever. Was not eating. I also remember a gross booger out of his nose which I thought was unusual. he started eye squinting and then added a head back movement and when he added the tongue sticking out, I started to worry. Wed. to doc for physical and she felt no swollen lymph nodes, no fever. She didn't attempt hard enough to get throat culture.

 

On Sat. I took him back and said please culture him so I can rule out strep (as I wasn't sure he completely qualified for PANDAS). What a surprise when it came back positive on the rapid strep. test. Now I am scared to death about PANDAS.

 

He is on day 4 of Zpack (zithromycin 500mg first day and then 4 more days of 250 mg). So far, I would say Day 2 he was worse as far as phrases that produce anxiety and also about the same when it comes to touching his body and then him needing us to physically complete "sit down" or "leg down". Day 3 he is not as irritable. Still getting stuck on words, has added new behaviors of trying to squish his body into whatever he is sitting on like he is OCD'ing about being completely touching the chair. he also yesterday kept feeling his achilles tendon on both ankles and held pants up so that they didn't touch that area. And I am also seeing that he wants to be contantly beside me....this is new as I didn't see that in the beginning of this 4 week flare/subsequent strep.

 

My plan:

Reculture him Thursday before I talk to his DAN doctor via phone Thursday pm ....last day of antibotics is Wed. I am worried that because he is not better, maybe the strep he has is not sensitive to the Zithromycin. Please advise: Shouldn't he be settling down with some of the OCD/anxiety/sensory stuff by 4th day of antibiotic. I am so worried.

 

I also read that I could use OLive Leaf Extract and xylitol nose spray potentially.

Should I get all my family members tested for strep? My daughter will be going on Augmentin for teeth extraction Friday so that should take care of her.

 

What else? Should I not be scared that we are on day 4 of antibiotic and alot of PANDAS type issues remain. Please share your experiences as I am so worried. We had made so much progres and now we are going backwards.

Kim

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Sorry short on time, but I wanted to post.

 

My DD has autism and PANDAS as well. She tested positive for strep on 1-5-12 (not sure how long she had it.) She continued to retest positive until 2-29. She was on several abx, but did not clear until she had been on Zithromax for 5 weeks straight at "severe pharyngitis dosage" (250mg/day every day for a 50lb child). DD has had six visits and six tests since 1-5 :o , but she is almost back to 100% herself at this time and we are going to try to start titrating off abx one month from now.

 

Here is my first post with DD history in case you want to see if any of sounds familiar My link

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Mayzoo,

 

Thank you so much for your response and your link to your story. I am so happy your daughter is doing better and I pray we can get there too.

 

I am currently on hold at the doctor's office to schedule repeat strep test for Thursday as this is end of antibiotics.

 

I also want to ask them if they did a sensitivity on the throat culture that was sent out. Atleast I hope that they sent it out even though it rapid tested positive.

 

I appreciate any information that anyone can share.

 

Today, he has continued to have some of the same issues....not leaving my side, stuck on some words with anxiety and need for repetition, some head movements, repeating one phrase over and over on occasion, as well as squishing his body in teh seat when he thinks h e is not sitting good enough. So this is on day 4 of antibiotic. I am nervous.

 

Kim

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Mayzoo,

 

Thank you so much for your response and your link to your story. I am so happy your daughter is doing better and I pray we can get there too.

 

I am currently on hold at the doctor's office to schedule repeat strep test for Thursday as this is end of antibiotics.

 

I also want to ask them if they did a sensitivity on the throat culture that was sent out. Atleast I hope that they sent it out even though it rapid tested positive.

 

I appreciate any information that anyone can share.

 

Today, he has continued to have some of the same issues....not leaving my side, stuck on some words with anxiety and need for repetition, some head movements, repeating one phrase over and over on occasion, as well as squishing his body in teh seat when he thinks h e is not sitting good enough. So this is on day 4 of antibiotic. I am nervous.

 

Kim

 

Keep a log during his entire antibiotic therapy of any improvements or worsening symptoms. I noted night time, food, and restroom behaviours along with attitude towards going outside and general mood. Pick your key symptoms and follow them daily with a log you and the doc can look back over. I also logged if I had given her Ibuprofen or not so we could relate that to her behaviours.

 

I did not really begin to see any steady improvements in DD until around ten days. Her abx is like this:

 

Amox 500 two times a day x 10 days, Saw improvements on day 6-7 then lost them on days 8-10 (how I knew she was going to still be strep +).

 

Augmentin 1050mg two times a day x 10 days (saw minor improvements on about day ten, then no further improvements until day 6 on zithromax. Still strep + after the augmentin.

 

Zithromax 250mg daily for 5 days, no major improvements but no ground lost. Still strep +.

 

Zithromax 250mg daily for 30 days and improvements were slow but steady. She was strep - after this. We are still on the Zithromax now and will be for the next month then I will try titrating her down.

 

I was fortunate in that her pedi has been very helpful despite never having heard of PANDAS until I came in and requested blood work. Now they are definitely believers after closely following my DD and seeing her improvements. Initially, the office felt no need to even retest her and they were reluctant to schedule the appointment for the retest after the 10 days of amoxicillin. Now, they are conferring with me about her course of therapy rather than just deciding on their own what they feel is best, since I have proven well read on the subject. On the first visit, I took a typed list of all the personality changes I had seen since our journey began and PANDAS articles from NIMH, Medscape, etc. Then I took in the logs of behaviour changes on the second visit. I always took in articles from medically approved (not anecdotal if at all possible) sources as reference for what I was saying or requesting.

 

I hope you see improvements soon.

Edited by Mayzoo
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KimFlow --

 

My DS is not autistic, but he was reported as being on the autistic spectrum at points during his PANDAS illness because of the behaviors . . . some repetitive, some not . . . and processing problems he displayed during the height of the illness. Now, after more than 2 years of treatment, most of that has become a thing of the past and the doctors and psychiatrists have dropped any reference to ASD.

 

That being said, the dramatic difference in my DS in terms of his executive functioning, speech processing, communication skills, etc. before and after antibiotic treatment was so profound, I can't help but feel instinctively that similar treatment may help kids even much deeper into the spectrum.

 

I wonder if you've seen this site? Someone posted it here on the forum a couple of years ago, and I've never been able to forget it . . . the family's story, the positive impact of medical treatment for their son, etc. I thought I'd post it here for you in case you hadn't come across it before.

 

Stop Calling It Autism

 

I agree with Mayzoo . . . keep a journal and hold fast. Some kids respond more quickly and some respond more slowly to abx, and if there are extenuating circumstances, successful treatment for your child may require some more investigating and tweaking. But a journal may be one of your and your doctor's best tools for being able to identify even the slightest, most subtle responses. What is your kid doing today that he couldn't/wouldn't do yesterday? What has he stopped doing today that he was doing yesterday? Stuff like that.

 

All the best to you!

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KimFlow --

 

My DS is not autistic, but he was reported as being on the autistic spectrum at points during his PANDAS illness because of the behaviors . . . some repetitive, some not . . . and processing problems he displayed during the height of the illness. Now, after more than 2 years of treatment, most of that has become a thing of the past and the doctors and psychiatrists have dropped any reference to ASD.

 

That being said, the dramatic difference in my DS in terms of his executive functioning, speech processing, communication skills, etc. before and after antibiotic treatment was so profound, I can't help but feel instinctively that similar treatment may help kids even much deeper into the spectrum.

 

I wonder if you've seen this site? Someone posted it here on the forum a couple of years ago, and I've never been able to forget it . . . the family's story, the positive impact of medical treatment for their son, etc. I thought I'd post it here for you in case you hadn't come across it before.

 

Stop Calling It Autism

 

I agree with Mayzoo . . . keep a journal and hold fast. Some kids respond more quickly and some respond more slowly to abx, and if there are extenuating circumstances, successful treatment for your child may require some more investigating and tweaking. But a journal may be one of your and your doctor's best tools for being able to identify even the slightest, most subtle responses. What is your kid doing today that he couldn't/wouldn't do yesterday? What has he stopped doing today that he was doing yesterday? Stuff like that.

 

All the best to you!

 

I want to say thanks for the site, though I suspect my kiddos autism is caused by her Arnold Chiari I which was caused by a birth trauma--I still search for something "concrete" that may help her in her life. I will read it over and see if anything there can help us, so sincerely thanks :).

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KimFlow --

 

My DS is not autistic, but he was reported as being on the autistic spectrum at points during his PANDAS illness because of the behaviors . . . some repetitive, some not . . . and processing problems he displayed during the height of the illness. Now, after more than 2 years of treatment, most of that has become a thing of the past and the doctors and psychiatrists have dropped any reference to ASD.

 

That being said, the dramatic difference in my DS in terms of his executive functioning, speech processing, communication skills, etc. before and after antibiotic treatment was so profound, I can't help but feel instinctively that similar treatment may help kids even much deeper into the spectrum.

My child is much deeper into the spectrum- and I do believe it is due to PANDAS during early childhood development. I don't know if we'll ever get rid of my daughter's OCD since those are the (now) deep seated patterns of thinking/processing that were laid down during her critical times of development. But, the really huge, huge difference we see w/ treatment is the anxiety level- when she is in a flare we get constant meltdowns, SIBs and aggression. She spends most of her day just getting through episodes of fight or flight. She gets flash migrains. When she gets treatment- the OCD is still there, but low or no anxiety. She is able to recognize when she is fixated or stuck and can get out of it herself. She becomes much more flexible, communicative, cooperative and social- and that wonderful, spontaneous smile returns. The difference is very dramatic!

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I am not sure if anyone has mentioned this yet, but for many of us, PANDAS symptoms (anxiety, ocd, fine motor problems, agitation, etc) do not immediately stop after strep infection is cleared. That was tbe initial reported pattern of PANDAS (acute onset with improvement with abx)--we see some improvement once we treat the strep, but for us it takes a good 4-6 weeks at least to see my son get back to his old self...on the conservative side. I have explained this to our doc, because I think this is a misperception--that once the strep is gone, the symptoms are immediately gone. For us, the worse the exposure, the longer it takes for the inflammation to go away/symptoms to subside...meg

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I am not sure if anyone has mentioned this yet, but for many of us, PANDAS symptoms (anxiety, ocd, fine motor problems, agitation, etc) do not immediately stop after strep infection is cleared. That was tbe initial reported pattern of PANDAS (acute onset with improvement with abx)--we see some improvement once we treat the strep, but for us it takes a good 4-6 weeks at least to see my son get back to his old self...on the conservative side. I have explained this to our doc, because I think this is a misperception--that once the strep is gone, the symptoms are immediately gone. For us, the worse the exposure, the longer it takes for the inflammation to go away/symptoms to subside...meg

Absolutely- the treatment I was talking about was PANDAS treatment, not strep treatment, although treating the infection is obviously essential, its the anti-inflammatories, steroids and IVIG that ultimately bring results. We do see slight improvements w/ just abx, but stopping the autoimmune reaction is the biggy.

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I am not sure if anyone has mentioned this yet, but for many of us, PANDAS symptoms (anxiety, ocd, fine motor problems, agitation, etc) do not immediately stop after strep infection is cleared. That was tbe initial reported pattern of PANDAS (acute onset with improvement with abx)--we see some improvement once we treat the strep, but for us it takes a good 4-6 weeks at least to see my son get back to his old self...on the conservative side. I have explained this to our doc, because I think this is a misperception--that once the strep is gone, the symptoms are immediately gone. For us, the worse the exposure, the longer it takes for the inflammation to go away/symptoms to subside...meg

Absolutely- the treatment I was talking about was PANDAS treatment, not strep treatment, although treating the infection is obviously essential, its the anti-inflammatories, steroids and IVIG that ultimately bring results. We do see slight improvements w/ just abx, but stopping the autoimmune reaction is the biggy.

 

I'll second that (or is it "third it"? :P ). We've been on the "PANDAS path" for going on 3 years now, and the improvements continue to emerge. Sometimes very slowly, sometimes very subtly, but they do continue.

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