Prophylactic antibiotics

[cdnmom]

Hello all, ds8 has been doing well on treatement dose zith for Myco P but is nearing the end of the 1 month dose given by Dr. T. I have a follow up consult on Mon and he mentioned putting him on a prophylactic dose going forward but I get the feeling he is conservative in his treatments....mentioned something like zith twice a week (maybe this is the norm). I understand every child is different but I just wanted to get a general feel for what other children are taking as a prophylactic dose. Ds is also immune deficient (just under the low end of the norm).

[blakes_mom]

My ds age 11 65 lbs is on a prophylactic dose of zithromax 250 three times a week. I quess if he is doing well it might be worth a trial. I would make sure you have a plan if symptoms start to worsen.

[landamom]

Hi, we are also working with Dr. T. He IS conservative when it comes to medication, but he will also kind of do what you feel is best, so if you said you wanted another month of Zithromax, I bet he would give you a refill. How is your son doing - have you seen all symptoms resolve on Zithromax? We have been on it for a while because my dd also has Myco P, however we had to add Augmentin to the mix before seeing any real improvement. I would say she is probably at 80% now and Dr. T is already talking about prophylactic dose for her, too. I think it's too soon as I don't think that should be done until the child is 100% symptom free, otherwise there is still either infection or inflammation going on.

 

We have also been to Dr. B and they advised at least 4 months of abx treatment at full strength. We are still hoping to get to 100% otherwise we will consider IvIg. BTW, my daughter is also immune deficient based on some of Dr. T's tests... what kind of deficiency does your Ds have? Best of luck to you!!

[MomWithOCDSon]

The theory behind zithromax only a couple of times a week or some other not-every-day schedule is that it has a long half-life, so, in theory, it is active in your child's system longer; if I recall correctly, its half-life is in the range of 68 hours, and it can apparently remain in the tissues for a couple of weeks, even. So if your child has responded well to treatment dose zith, this sort of prophylactic schedule is probably reasonable.

 

Just be aware that most abx don't have that long a half-life, so a dose of some other med, like Augmentin, for instance, every three days or so is not likely to keep your kiddo adequately protected.

[cdnmom]

landamom - my ds is NOT completely recovered. Like your dd, he has motor and vocal tics - the vocal tics are gone and the motor tics are 80% better but I still see him ticcing everyday. He is still touching his ear to shoulder and doing arm pumps every day and occasionally I will see an eye roll. We also have an appt scheduled to see Dr. B. and Deb McCabe, not until December though and I'm not sure I will keep both appts - there just isn't enough money to go around. I think I will ask for another month of treatment dose or ask for Augmentin.

 

Ds's total IGG is 523 (norm is 673-1734) and IGG 1 subclass is 345 (norm 432-1020). The other subclasses are also low but within the reference range. Dr. T. said we have to keep an eye on these numbers and if they drop, he will probably need ivig. I don't know what subclass 1 means specifically, will need to ask tomorrow.

[Missmom]

landamom - my ds is NOT completely recovered. Like your dd, he has motor and vocal tics - the vocal tics are gone and the motor tics are 80% better but I still see him ticcing everyday. He is still touching his ear to shoulder and doing arm pumps every day and occasionally I will see an eye roll. We also have an appt scheduled to see Dr. B. and Deb McCabe, not until December though and I'm not sure I will keep both appts - there just isn't enough money to go around. I think I will ask for another month of treatment dose or ask for Augmentin.

 

Ds's total IGG is 523 (norm is 673-1734) and IGG 1 subclass is 345 (norm 432-1020). The other subclasses are also low but within the reference range. Dr. T. said we have to keep an eye on these numbers and if they drop, he will probably need ivig. I don't know what subclass 1 means specifically, will need to ask tomorrow.

My son is on a treatment dose of aug and is currently at about 95%. He is still ticcing but it is not very noticeable, except to my husband and I. We have tried to transition to a prophylactic dose three times now and each time we reduce the dose the pandas symptoms start to increase. It is so frusterating. We have an appt. in the morning with the neurologist who is treating my son. I am praying she will have a plan for us. I literally have no more augmentin refills left and he will take the last dose tonight. After the previous 28 day dose we tried he was at 100%. That lasted two weeks so I thought maybe reducing the dose would be ok. I was sickened then after two days to see the symptoms return. He has not returned to that 100% again. At least I know that it is possible to get back to 100%. Just need a good plan. I would advise you to get as many refills as you can and if your child gets to 100% make sure that they are there for at least a month before trying to reduce the dose. Apparently two weeks was not long enough for us.

[landamom]

It is just so frustrating, isn't it? My dd did great for almost 4 weeks and then started to backslide and now seems to be doing better... But who knows how long it will last. I know they say recovery is saw toothed, but I just wish I knew why. Are they being exposed to a virus and then getting better once that passes? Or could it be that whatever bacteria that triggered the PANS in the first place has a life cycle it has to go through before completely going away?

 

Ash- our kids sound so similar ... My dd is also in the low 500s for total IgG and her subclass 1 and 2 are both low outside range. Subclass 3 and 4 are low but within range. We were also told we need to watch and recheck by the end of the year and possibly consider IvIg. Makes me wonder if it could be due to the chronic MycoP? Also, I was wondering if your DS has had any low WBC on any labs? My dd has had that. I have read it could be due to MycoP.

[cdnmom]

It is just so frustrating, isn't it? My dd did great for almost 4 weeks and then started to backslide and now seems to be doing better... But who knows how long it will last. I know they say recovery is saw toothed, but I just wish I knew why. Are they being exposed to a virus and then getting better once that passes? Or could it be that whatever bacteria that triggered the PANS in the first place has a life cycle it has to go through before completely going away?

 

Ash- our kids sound so similar ... My dd is also in the low 500s for total IgG and her subclass 1 and 2 are both low outside range. Subclass 3 and 4 are low but within range. We were also told we need to watch and recheck by the end of the year and possibly consider IvIg. Makes me wonder if it could be due to the chronic MycoP? Also, I was wondering if your DS has had any low WBC on any labs? My dd has had that. I have read it could be due to MycoP.

 

landamom - our children do sound very similar....I just noticed your signature line...my ds may also have lyme and he also has a chronic cough...very mild but there nevertheless (I wonder if this is because of the Myco P). His wbc is low but within the reference range. Dr. T. said that his immune function may be low because of the myco p infection...we will have to re-test the IGG numbers and go from there...and yes, I have also read that low WBC could be due to infection.

[AmySLP]

After years of high dose antibiotics by dr. B my daughter was well controlled on them, but not off. For her, it has always worked to go with clindamycin for 10 days. And then resume prophylaxis. We saw dr. T and are going to try this starting this week with the zith 2x/ week & and I hope afte r nearly 4 years if abx. This will be the answer. I worry so much about her liver with all these abx. For so long at such high doses.

[dcmom]

Unfortunately, it seems like dosing needs to be tailored for each child.

 

I would not consider lessening antibiotics until your child is stable for a month plus, at 90 to 95%. At that point, I would wean down slowly to your desired prophylactic dose. Start by dosing every other day for two weeks, then lowering to 3x per week for two weeks, etc.

 

You should expect to see a minor bump in symptoms when lowering the dose, but as long as that subsides and you are back to your 90-95% within a couple of weeks, I would continue.

 

My two pandas kids have been off of antibiotics (except during flare ups) for 1.5 years. However, they were on daily treatment dose antibiotics for two years.

 

Good luck. Just remember - go slow- expect some minor bumps- and maybe even use a little advil the first few days of weaning down.