Babesia & Co-infections, PANS

[colcronin]

Hi 

Been reading these forums for over a year which has been so helpful.  My son has had on and off tics for three years, not ever really bad.  He has had mild anxiety, but this fall, after being sick, his tics became very pronounced and then his anxiety skyrocketed and he developed panic and OCD-like behaviors.  He was then diagnosed by a naturopath with PANS due to several tick-borne infections.  He is currently on Bactrim, Arithromycin and Atovaquone.  I have so many questions, but right now I can't reach my naturopath and have a more urgent question.  We are on day 8 of meds and overnight my son developed what looks like chicken pox all over his body after being very itchy.  Benadryl calmed it down but it has actually worsened over the day.  Is this a die-off reaction or a reaction to meds? I know noone can say for sure but I am wondering if anyone else has dealt with this.  

As an aside, after the 1st dose of the atovaquone he developed itchiness and small bumps on his chin but those went away without any medications.  No rash/bumps since then but he is itchy before bed.  Itchiness was one of his symptoms right before bed even before starting treatment.

 

[Cmac]

Yes, this happened to my son twice. Once after 5 weeks of Clindamycin and once after 8 days of Augmentin. It took about a week to clear each time and we had to use Zyrtec and a steroid. So sorry you’re dealing with this and I hope he feels better soon.

[colcronin]

I did end up talking to the doctor and she said she has to treat it as an allergic reaction likely to the Bactrim but possibly the arithromycin.  She wanted to keep him on the atovaquone so we did that but the rash worsened over night.  Did your son’s rash improve once you stopped the meds or did you not stop them and just start steroids? 

[Cmac]

We stopped all antibiotics and for the second time (which was worse than the first) the pediatrician had us do a double dose of Zyrtec (once in the morning and once in the evening even though the dose is for 24 hours) for a few days and also a double dose of steroids for 2 days. The second rash lasted a solid week and spread everywhere! I thought it was a penicillin allergy but now I think it was actually a “serum like sickness” (googling rashes/allergies on this board gave me that idea) because of the way the symptoms unfolded. At the end of the week the rash looked like fading bruises. 

[colcronin]

CMac so sorry that happened to your son  no need to reply if this is too many questions- but did he have Lyme Co-infections also? Did you get resolution? 

[Cmac]

He didn’t have Lyme—but he had strep and myco p—those were his two triggers!

He’s doing great now!

[colcronin]

That's awesome!!! Glad to hear it.  Thank you so much for replying!

 

[Cmac]

Anytime—good luck!
 

Just about a year ago I was crying along with my son who was covered in hives and making horrible noises every time he had intrusive thoughts.

Now he’s happy and healthy so there is definitely hope.

[LordChallen]

On 1/12/2020 at 8:24 AM, Cmac said:

Anytime—good luck!
 

Just about a year ago I was crying along with my son who was covered in hives and making horrible noises every time he had intrusive thoughts.

Now he’s happy and healthy so there is definitely hope.

And just for the record, what do you think the formula for this success was? My DD (16) is functional, but barely. She goes to school about 1 day a week, but maintains honor-roll grades. But she wouldn't go on cloudy days, or if one of her friends were sick. She has really bad sleep issues. She cannot go to sleep on her own until she is exhausted. But once asleep, you cannot wake her up. The only times she goes to school without drama is if she stays up all night. She does great at school that day, but then it so exhausted and she practically passes out at the door.

Most of the time, no tics. But somedays they are so bad it breaks my heart. A normally beautiful girl reduced to fetal position rocking, whistling in rhyme to her finger snaps and face slapping and ear pulling. I have her on some fairly functional supplements and one anti-OCD med. But it's hard to get her to take them consistently. Her defiance can get intense, so we offer and recommended. New drugs are hopeless.

Thanks