Relapse while treated with amoxicillin

[Marie22]

My daughter is 11.5 yo.

She received a diagnosis of PANDAS last May after beeing sick for 1 year. At this moment she was positive for strep at culture and her ASO where 800-1600. She did improve by 75% after 3 weeks of antibiotics (Cephalexin for 10 days and then Amoxicillin on maintenance for 1 year). Almost no more compulsions (we could see them melt) , just some irritability left but very manageable.

Compulsions came back sightly the 5th week and within few hours relapsed before our eyes one afternoon (intense tics and compulsions).

Now she is stable in that situation. She is really better than before antibiotics (in November she was so sick) but stays at a 50% improvement. We are in Montreal and it is very difficult to find a doctor who is experienced with this condition.

Did anybody experienced similar situation or have any suggestions?

(Present medication: amoxil 500 mg twice a day, vitaminD, escitalopram (SSRI)15 mg once a day).

 

Thank you so much for your help.

Marie22

[Chemar]

Hello

I am bumping up your first post so others can respond

[rowingmom]

DD (then 10) originally did well on PenVK for strep, all symptoms resolved. But on the second round they started coming back.

 

We subsequently found out that her underlying infection (bartonella) was supressing her immune response and allowing other infections full rein. PenVK wasn't sufficient to treat bartonella. Treatment of bartonella/babesia (both tick-borne infections) has brought her to excellent recovery.

[Marie22]

Hi everybody,

 

 

Few days after my last message, things started to get very bad: compulsions, tics, aggression, hyperactivity came back as severe as during the worst period.

 

Her family doctor changed antibiotics from amoxil to Augmentin 500 (Clavulin in Canada).

 

Within 3 days, she started improving. We also started Omega 3, multivitamins, Turmeric plus probiotics and Vit D (she is currently on escitalopram an SSRI).

 

As many said, amoxil is not enough for some kids with chronic tonsillitis.

 

Five weeks later, she is now almost 80-85% back but irritability, hypersensitivity to criticism and rigid thinking are still there plus some compulsions and tics. It seems to be stable. I wonder if we can hope to get more improvement only with antibiotics or if we will have to go through other treatments, tonsillectomy or maybe increase the dosage of antibiotics? I still miss my DD.

 

We have an appointment with Dr.Williams at MGH in October. It will be a relief to have doctors who can guide us through this.

 

I feel so sorry for all the kids who can't get correct diagnosis and treatment because of the lack of knowledge of this disease (fortunately, 2 residents told us that they study the disease in medical school now). But we miss experienced doctors here in Montreal.

 

This forum helped us so much to understand what is going on. Experienced pandas moms and dads who share their knowledge are a source of light in that nightmare. Thanks for sharing your experience !

 

 

Marie