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Well it's been a year...and this was my original post...7/2013

 

About 2 weeks ago I started noticing my 4 1/2 year old son was doing some blinking. Nothing terrible just noticed by me and my husband. About 5 days later my daughter came down with what we thought was hand foot and mouth...she was sick for a few days. Three days after she was sick my son came home from school complaining of a headache and running a fever. The fever spiked and he had an awful awful headache. His fever wouldn't go under 103.2 with both tylenol and ibuprofen. The following day he had a fever...around 101 and then the next day it fell off. His class was exposed to hand foot and mouth and i thought "well...that is where it came from". So he was doing some blinking and that was about it and then yesterday his blinking was becoming more severe and seemed to be more frequent with a bit of a head turn. We called his ped and he said bring him in for a strep test. It was negative but he put him on 500mg of amoxicillin 3 times a day for 10 days. After one day his tic doesn't seema as severe...but it has moved from his left side of his head and to the right...tonight before bed it picked up just a little. The only other symptom I saw was yesterday he was sad. He is not showing any OCD issues yet. It is mainly the motor tic. Does this sound like PANDAS? Or is it maybe coinciding with a transient tic? Since we caught it early will his symptoms be easier to treat or should I expect things to get worse in the upcoming weeks. I feel so bad I can't help him. We are going to do BW once we are through with the ABX. But I am going crazy...

 

Cut to the past month of tics slowly getting worse...we did a strep test on 7/31/14 and it was negative and doc thought maybe it was transient (my husband had tics as a child). So we brought him home...and it sucked. He was so uncomfrtable and hard blinking and throat clearing and just agitated...I called the nurse at the ped office crying and stressed and she said that we should give abx if it woul dmake me feel better and since my son is a puzzle it could be something we check off the list. Well after 12 hours his tics decreased rapidly...it's been 4 days and he is about 95%. I find it strange that it took a year for this to happen again...does this mean I am just at the beginning of a tough road? We had titers checked...wtih no fidings and we had lyme checked with no findings. I'm confused and am trying to read all of these posts but feel so stupid. I don't understand because I am at the beginning. Is it good we have had a year between major flares? He starts kindergarten in a few weeks and I am petrified...

 

I am so so so sorry for the long post...I am just confused and scared and want my kiddo to be my kiddo again...

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Our DD had what they call soft signs prior to her dam breaking with full-on PANS. You may not be there yet if all you have are tics. If you can keep him on ABX you may be able to kick this. I would recommend calling the NIMH - Sue Swedo's group. Explain the situation to them and ask them how long you should keep him on antibiotics or what you should do.

Remember too that PANS can be caused by viruses, not just strep and lyme.

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Yeah, my son had two smaller episodes with eye blinking and throat grumbling before the bigger episode hit. We have a great doctor and are controlling it all now with abx. I advise to try get him on a prophylactic dose of abx at least through the school year to protect him from getting any worse. I know how heartbreaking it is to watch and not be able to help.

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Thanks so so much...well....tics are back...started coming back on the amoxicillin which was so helpful in the beginning. I was so hopeful. We switched from Amoxicillin to Augmentin 2 days ago and tics are coming back stronger. He is grunting blinking and deep breathing with a shoulder shrug. Ped wants to do Augmentin for 3 months. Obviously if this doesn't work we will try something else...I am so incredibly exhausted and so terrified to read anything else. I am so scared that I am going to lose my little boy. Why is this happening?

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Our son's situation sounds similar to yours. His first episode was at about 4 1/2 and it was caused by strep. After the initial episode he had future episodes with coxsackie (hand, foot, & mouth), mono, walking pneumonia etc...

 

His primary symptoms are always tics. We've only seen OCD once. Often when he gets a viral or bacterial infection the first way we know he is sick is because the tics start. When he gets strep he never gets a sore throat, but he has tics. Once the infection has passed the tics subside.

 

We are 3 years into this and he is on proph. Augmentin which works pretty well for him. For the most part he is symptom free about 9 months a year, then the winter comes and a virus wipes him out for a month or two..

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