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cara615
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I would say you are right. The positive reaction to antibiotics is one of the strongest indicators that your are dealing with PANDAS / PANS. As Dr. Murphy says, I have seen children turn around much more quickly on antibiotics than on any psychotropic medication. She is a very wise woman.

 

Dedee

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Need words of encouragement. How is the course of symptoms while on abx? I have seen my son go from severe ticcing to drastically reduced in just 7 days on abx. Today his tics are slightly increased again. they are very quiet so you can't tell he is ticcing but I know! And I feel that we have plateaued today. Is this the way the symptoms resolve? Is it not a steady decline but more of a bumpy one?

 

I am also suspecting yeast so I added some grapefruit seed extract to his regimen about 2 hours before i give him the abx. Maybe i am seeing die off from the yeast? Its so hard to tell and I was convinced it was PANDAS because of the drastic improvement I saw in 7 days.

 

We are only on day 9 of abx I know its probably too soon to tell. I am just not handling things well today. I am not mentally OK.

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Hi there,

I just wanted to write and give you some support and strength. I read this entire thread with much interest as my 6YO son has just recently started to display motor and verbal tics after an illness. And I am racking my brain in trying to work out what it is...Its been tough, but reading posts like yours has been inspiring and helped a lot. I was worried when I read your final post about not feeling so good, so decided to join up to tell you to hang in there. You are not alone and you are a great mum. We all have our up and down days/weeks... - even without the tics.... So stay strong and you and your family will get through this - your hard work and resilience will pay off for the better. xx

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UPDATE: First of all thank you all for your words of encouragement. They are helping me through the toughest part. My son's blood work came back yesterday and he had a positive ASO and anti dNase-B of over 700 (normal is considered to be less than 300). Dr. is convinced its PANDAS. We are speaking tonight to talk about the game plan going forward. We are almost done with the keflex and I have about 4 days left of the amoxi to add on but then we will need to talk about prophylactic abx or maybe some azith for another 10 days before we go on prophylactic. Not sure.

 

Each day he continues to improve. Its SO SLOW!!!! An dhe will have moments where he will tic for about 20 minutes and then it will stop. His tics are getting quieter thought and less noticable. As time goes on they are getting less frequent too. No OCD or ADHD behaviors.

 

I feel like I have so much to be thankful for this year. I know we have a long road a ahead but at least we know whats causing this and the steps we can take to manage it. I feel a little more in control than I was before.

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It's nice to see you are experiencing a few of the same things we are. We have been on Augmentin for almost 4 weeks. My dd will have several days on minimal ticcing and then it will increase. I get so worried and 2nd guess the thought of PANDAS. There is so little out there to see others experiences. Hoping you are able to set forth a good game plan with the dr.

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Our holistic MD is NOT on board with long term abx. Looks like I will be going to another PANDAS friendly doctor in the meantime to get my child what he needs. Her suggestions were CBT and possibly IVIG. i don't want to rush into IVIG but seriously CBT??? My son's only symptoms are tics and CBT won't do a thing for him as he is only 5 almost 6. Habit reversal therapy for tics only really helps when the child is more able to control the tics. My son is not.

 

And also, since this is not genetic TS and there is a cause for this, why not treat the cause?? I do understand that the abx are just preventing the infection, but I would rather him be protected and NOT have a flair then to manage a flair with CBT??

 

Am i right here?

 

Anyway, we have 30 days of azith (full stregth) and I will be taking my son to another doctor that agrees with my game plan for his long term treatment.

 

I thought the anxiety would go away but its still here (my anxiety) lol.

 

As for his tics - we are on day 16 of abx and his tics are still here. They are very quiet but kind of frequent still. No one one really notice unless they were told to look for them. Its wierd some days its more motors (head and sholder shrugs) and some days its more vocals (throat clearing, sucking air in). Nothing is consistent with his tics. I know that he is healing because of the inconsistency of it all.

 

A woman that literally lives down the block from me and has a son with PANDAS said that full recovery didn't happed for her son until 10-12 weeks on abx. So i am holding tight to that estimate and trudging through .

 

Can't wait for the conference in Feb!!

Edited by cara615
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I know that some would consider me IVIG crazed, and I suppose I am...Gossip on the street, and the most recent Swedo study is implying that IVIG within first 6 months of first big episode yields the best result/cure...sorry guys, I know most hate that word.....its my positive side that I just cant let go of!!!!

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I'm with you.

 

DD attended CBT for 3 years and could verbalize everything that was taught to her. But in the middle of a symptom flare she was unable to make use of any of it. When she was fine she didn't need it. We weren't dealing OCD though, just ticcing, ADHD, and sensory difficulties.

 

If at some point you change or increase abx, be aware that the result may be more die-off and increased ticcing.

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p.s...you will see wax/wane of symptoms for several weeks.....it drove me crazy...it unfortunately goes with the territory....for us, after first big episode, the waz/wane was short lived, but future episodes yielded longer total healing periods that included more wax/wane.

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I'm thrilled for you that you have seen such progress with abx! You have do e an amazing job from the beginning on this one. I wish you luck and commend you on your decision to find a new dr that will support your desire to keep your child on abx.

We have been at this a while now and see the ups and downs. We have a saying in our house I'll share with you. While we continue to do all that we can to bring healing to our two pandas kids, we celebrate the good moments and just bare the bad ones. Yes, things can change from minute to minute and certainly day to day. There are some very lucky ones that get completely cured right away. But many of us are left here to fight in any way we can to make each day better.

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qannie47 is right. I guess what i am experiencing is waxing and waning as the abx take their effect. Each day its something new and then they disappear. New tics come and then they go. Overall we are MUCH less than at the peak 20 days ago. Today he has emotional lability and some OCD about his clothing. The lability is not new but the OCD is very new to us. He has never really been bothered by his clothing.

 

Tonight we give him azith for the 1st time I am prepared for increased symptoms. Holding my breath.

Edited by cara615
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We are on Day 26 of continuous augmentin. Happy to report in the last hour I haven't seen one tic. But as we have seen in the previous 4 weeks I should see an increase of tics by the end of the week. Hopefully the increase gets smaller and smaller. We have also seen 2 'flares' Right at bedtime. Mainly emotional liability. I expect one of those too!

 

It is nice to see such positive outcomes.

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