Anitbiotic/Augmentin - How long should treatment last?

[SEAMom]

My 14 year son had his first PANDAS symptoms March 7th. He was put on a 14 day course of Augmentin. He improved significantly. Within 48 hours of stopping the antibiotics his symptoms came back. It took me 5 days to get his pediatrician to give him more Augmentin. She gave him 30 day Rx - 875 mg 2x a day. Can anyone help me with next step after that? Is 30 more days long enough? Should it be longer or should he go on a smaller dose for a while afterwards? I really need help with antibiotic doses and treatment guidelines.

 

I am in Seattle and there are very few doctors who treat PANDAS here. I have an appointment with a specialist but we don't have an appointment until the end July. My pediatrician has been very cooperative in working with us and I think she actually believes that my son has PANDAS now after his symptoms came back after going off the Augmentin. But she does not really now how to treat PANDAS. She has just been going off of my recommendation. Unfortunately it has been 5 days since he went back on the Augmentin and we have seen little improvement.

 

Any help with this is greatly appreciated!

 

[Chemar]

Welcome SEAMom

 

Just bumping up this new post for others to respond

[kmacdonald34]

My dd's PANDAS onset was Christmas Eve. We finally got into see a PANDAS dr around mid February and she was put on antibiotics, after about a month, her symptoms were gone. She is still on them so she has been on them for about 3 months. The plan is to keep her on them till she gets out of school, try to go off of them for the summer when the risk of infection is lower. I will meet with her infectious disease dr. in August and decide if she should go back on in the Fall. His thinking is she might need to. He says more often than not PANDAS children need a year or so on antibiotics. He also said she could still have flares on the antibiotics which we did see once the pollen started but she is better now that she takes Zyrtec too. Glad your son has improved!

[pr40]

you may want to think about how to convince your dr to prescribe long term abx. first, NIH pandas site, should be helpful.

then, you may also want to mention rheumatic fever and heart problems caused by strep both of which have long term abx as standard procedure.

we are talking about years of abx, not months. rule is a year w/out syptoms before discontinuing abx. you may want to inform yourself why this is the case before you try to convince your dr.

[Mom23boys]

There is a website actually created by top PANDAS doctors for doctors. There is an area you can request to become a member if you are a medical professional. If she is interested in learning about PANDAS this is a great place for her to start. There is also a helpful flowchart that goes through a standardized treatment protocol.

 

https://www.pandasppn.org

[nicklemama]

My son has been on abx for 4.5 years.

[4Nikki]

Hi seamom, Sorry sorry to read your sons troubles. For us, it was a very long road to get confirmation that DD actually has PANS/PANDAS. With so many similarities of symptoms to PANS/PANDAS and traditional doctors turning their heads the other way, we needed to rule everything else out. As it turned out, ruling out PANS/PANDAS would have saved us time, money and emotional turmoil. Unfortunately, we didn't have a doctor who knew what to do or what PANDAS was. This site helped guide us.

 

4 months from the onset, DD had a 10 day course of Amoxicillin and it stopped the major symptoms almost immediately. The symptoms came back after 2 months and 10 days of Augmentin for bacteria infections made her symptoms seem worse and on a cycle. Some people on this forum, told me DD might be having a hexing reaction due to the Augmentin and that it was actually a confirmation sign, because when the bacteria die off, they release toxins that cause the symptoms to exacerbate. Meaning it was working.

 

Pandasnetwork.org List of Physicians

 

After getting the Cunningham panel results, Dr. French at Seattle Children's helped connect us with VitalKids Dr. G. We did the Cunningham panel though Children's because the lab is out of network, but since Children's is in network, the insurance covered 80% of $1202 ($240 Cost) rather than us paying out of pocket $925 direct to the lab. Moleculera Labs has gotten better working with network organizations and now know how to save patients money providing specialty services. So your in-network doctor can order Cunningham panel through the in-network lab and they send the sample to Moculera Labs as a specialty service and all of this should happen without you getting involved with the details, which is the way it should be.

 

I added the last paragraph, because had we done this first, during the initial onset, we would have had a better direction of what to do and the Doctors would have available tangible evidence to support treatment.

[SEAMom]

This is really helpful. My ds after 11 days of augmentin started improving immensely for 3 days ( almost symptom free like before on his the 1st round of antibiotics) and then his symptom have come back and his anxiety is sky high - the only symptom that has not come back is his separation anxiety. Right now he wants to be by himself and he keeps pushing me away. So is this common for them to get better than worse and they detox on the abx?

 

We have an appointment with Immunology at Children's in two weeks and my pediatrician thinks they will do the Cunningham panel then. I will be sure to push for it. We also have an appointment with Dr. G but it is not until the 3rd week in July! We are on the cancellation list so I hope something opens up soon. I am just so tired of waiting. It has been 11 weeks since the onset and we still don't have a diagnosis and I feel so helpless and my ds is just miserable.

[MissionMama]

4Nikki and SEAmom, I am in the Seattle area as well.

 

Neuro typical DS12 dx PANS sudden onset 10/13. (official dx autoimmune encephalitis, post infection) Months of h*ll took us through abx, 3 rounds steroids and finally IVIG. (We also did Cunningham Panel which was very helpful.). Coasting now on low dose SSRI, but ups and downs with exposure to typical cold/flu viruses. I feel we must still be missing something during these times of flares...so the Vital Kids philosophy is very intriguing to me. We have a very supportive pediatrician, neurologist, and credit the immunologist for supporting us through IVIG.

 

SEAmom, who are you seeing at SCH? 4Nikki, curious to hear more about your experience at Vital Kids....

 

PM me if it is more comfortable.

 

Kristi

[4Nikki]

We are still working through a treatment plan. We have been able to manage most of DD symptoms with Advil Cold & Sinus which is 200 mg Ibuprofen and 30 mg Pseudoephedrine HCI for over a year, but we relied on it too much and DD Autoimmune system started attacking her organs, the first attach was her Thyroid followed by her liver, so we stopped using Advil for a few months and her numbers went back to normal.

 

So now we are trying more natural anti-inflammatory and use the Advil sparingly with a couple of low doze SSRI's. I've also been using baby aspirin and it's been helping. Now Dr. G has give us some more natural stuff to start using while we await some blood test results before we start on longer term antibiotics. The people at VitalKids are professional as well as beaming with care and thoughtfulness, but the building kind of sucks. Some bad odors outside on the ground floor. The landlord needs a kick in the butt.