So confused

[Debbie1]

We have now been to two doctors for PANDAS with two different approaches. What they do agree on is that (1) my child's symptoms are too mild for IVIG at this point and (2) since he showed some response to amoxicillin, we should stick with that antibiotic for now.

 

One says put him on prophylactic amoxicillin and hopefully prevent infection. Then watch and see how he does without infections. Test for titer levels about once a month to see where they are. If he has symptom exacerbation go immediately for a throat culture and blood work. She would like to wait until the summertime to take him off the other medications because she would like him to have a stable, calm period through the school year.

 

The other doctor says wait one month to see if his remaining (very mild) symptoms resolve on their own. If they do not or if he gets worse before that, do another full course of amoxicillin. Only then would he consider prophylaxis depending on the outcome and symptoms at the time. He seems to prefer treatment with these single rounds of antibiotics as long as they seem to be effective. Once he is stable for a few months, we can start to slowly bring down his other meds. He does not find titer levels helpful.

 

Honestly, I just do not know which approach to go with. I just want to know that I am doing the best I can for him, with both the present and future in mind. And just to confuse things, I have the name of a doctor number three in case I decide to go for a third opinion. Any advice?

 

Thanks,

Debbie

[Dedee]

I am sorry you are so conflicted. This is such a hard decision and very individualized. Try to remember that what ever you decide isn't written in stone. If you decide at any point that you do not see the results you expected (or hoped), or if you see symptoms worsening you can always change your path. There is no shame in changing your mind. I would say we have all tried many different options before finding the one that works in each situation. We have personally chosen to use amoxicillin daily for our PANDAS son. He has done very well with this and a few other supplements for almost two years now. I have had a couple of doctors tell me how mild amoxicillin is compared to other antibiotics, which makes me feel much better. I like the idea of having something stronger to move up to if needed. However, I think I am very fortunate in that many children will not respond to amoxicillin and need something stronger. I know many have had great success with Zithromax. Keep in mind also that this is strep and flu season. I always dread the school year. It's inevitiable that someone in my family will get strep a couple of times during the winter. For that reason alone, I prefer to have my PANDAS son on antibiotics daily. I agree that changes should be made during summer months for a couple of reasons. We plan to attempt to take our son off of antibiotics for a while next summer and see how he does. We can always restart if we see symptoms coming back. If you do use antibiotics frequently or daily, make sure you add a good probiotic. I am sure you will get feed back from others here with similiar experiences. Good luck in your decision.

 

Dedee

[myrose]

OKay this is EXACTLY where I am confused and stuck on.....From what I have read on here...If Pandas is not treated the damage can turn to be unreversible. So is being on antibiotics considered the treatment to prevent this or would it be the IVIG.

Can the antibiotics act like a mask to symptoms as do meds??????

How in the world can someone make a decision and feel its the best???? I wish this Pandas research would come on strong, I wish that Pandas was just as recognized by doctors everywhere just like strep is. This is so frustrating!!!!! UGH!!!!!!

[peglem]

Antibiotics should just prevent strep episodes, not mask anything. PANDAS is not degenerative, the damage will not get worse without the strep trigger. It gets worse with strep exposure/infections.

 

In your shoes, I would keep up the ABs, at least while my child is in school. I'd also ask for an antifungal (or use a natural one if I was convinced of its efficacy).

[lss]

Antibiotics should just prevent strep episodes, not mask anything. PANDAS is not degenerative, the damage will not get worse without the strep trigger. It gets worse with strep exposure/infections.

 

In your shoes, I would keep up the ABs, at least while my child is in school. I'd also ask for an antifungal (or use a natural one if I was convinced of its efficacy).

[P_Mom]

I personally do believe antibiotic prophylaxis is important in PANDAS. For me...I do truly feel it is the best thing for my sons. Also, it was recommended to us by NIMH and dr.K......two of the well known researchers and experts on PANDAS. If strep is the known trigger that leads to the symptoms and possible damage...then preventing strep (antibiotics) seems to me to be the logical step.

 

My sons have been doing great since being on the antibiotics...no big flairs or symptoms worth worrying about.....they have also not had strep either.......it goes hand in hand.

 

Kelly

[EAMom]

One says put him on prophylactic amoxicillin and hopefully prevent infection. Then watch and see how he does without infections. Test for titer levels about once a month to see where they are. If he has symptom exacerbation go immediately for a throat culture and blood work. She would like to wait until the summertime to take him off the other medications because she would like him to have a stable, calm period through the school year.

 

1) I agree with the prophylactic antibiotics.

2) Titers can be affected by antibiotics and the strain of strep...I would take them with grain of salt. Low titers don't rule out PANDAS. (Our dd had full blown PANDAS and low titers.) Also, how does your ds feel about getting his blood drawn?

3) Throat cultures are not reliable if your child is on antibiotics. Ideally, he should be off abs 3 weeks for an accurate culture. If you do a culture too soon after stopping antibiotics (or while on antibiotics) there is a good chance you will get a false negative. (This happened to us with both our children.)

4) If you are going to take ds off abs, summer is the time to do it, although I would keep him on for trips, summer camp, or dental work.

 

The other doctor says wait one month to see if his remaining (very mild) symptoms resolve on their own. If they do not or if he gets worse before that, do another full course of amoxicillin. Only then would he consider prophylaxis depending on the outcome and symptoms at the time. He seems to prefer treatment with these single rounds of antibiotics as long as they seem to be effective. Once he is stable for a few months, we can start to slowly bring down his other meds. He does not find titer levels helpful.

 

1) The problem with this approach is that subsequent PANDAS episodes can be more severe and difficult to control with antibiotics.

[Dedee]

Myrose,

 

Let me go over what I have understood about PANDAS. I have also read / been told that continued strep exposures resulting in flare ups can cause irreversable damage if not addressed. That is why daily antibiotics were recommended for our son. The antibiotics will (hopefully) keep away further infection, and in theory, decrease current antibody levels to decrease the damage to the brain. My sons antibody levels were through the roof, although this is not always the case. Furthermore, antibiotics are certainly not the answer alone. That is why Dr. Murphy suggested to us that we use fish oil for my son. This will help with healing the portions of the brain that have been damaged and it has antinflammatory properties as well. I am personally a believer in antibiotics. However, it isn't the answer in and of itself, nor is it the only answer. I think that is why so many of us use several different supplements to get the desired result. Unfortunately, it is often a case of trial and error. Please don't beat yourself up. This is a very complicated illness. So much so that even the majority of the health care profession do not understand it. We are all just feeling our way through dark, unchartered territory. It's good we have each other to lean on.

 

Dedee

[P_Mom]

I just wanted to share my experience with strep and the summer months. My kids have both had strep twice in their lives...both strep infections occurred in the summer months. I am home with my kids, they never attended any summer camps, daycare, etc.

I think if you are at a point where your child is older and perhaps passed the vunerable stage...going off antibiotics is worth a try. For us...I won't take them off at any time of the year until they are through puberty..it is too risky. (given our experience)

I am aware that strep is much more prevelant in the fall/winter....however, it can happen any time of the year. We have never had strep here at any time of the year other than summer!

[EAMom]

I've got to agree with Kelly that the risk of taking a PANDAS child off abs (even in the summer) outweighs the benefit.

[Dedee]

The only reason we are considering a trial without antibiotics is because it was something that Dr. Murphy said we should try every couple of years. In the summer it will be two years for us. Of course we will take into consideration what is going on in his life. If there are any outside stressors, we will simply delay it. I am certainly happy where we are now and don't want to rock the boat. On the other hand if he could be off and still do well, that would be great also. I always leave the door open to change our course of action because any little thing can cause relapses. I may chicken out when the time comes or, if I am feeling at peace and he is peaceful we will see. Things can change so quickly with this illness.

 

Dedee

[EAMom]

Deedee,

 

what was dr. Murphy's rational for taking the break with antibiotics? Also, I wonder if this cycling on/off abs promotes (or prevents?) the development of drug/antibiotic allergies.

 

The reason I'm asking is that my friend's mother (elderly) was on Azithromycin for 1 year due to severe dental infections. Then she went off for a while. When they wanted to use Azithromycin on her again they couldn't because they found she had become allergic to Azithromycin. So, I always wondered how/why this allergy developed. And so I'm worried that a similar thing might happen to dd if she is on for a year and then we take her off...and whether it is better just to keep her on it. Maybe the thing with my friend's mother was a fluke...but it was concerning nonetheless.

[Pezmom]

When our son was diagnosed with PANDAS 2 1/2 years ago, we weren't offered the option of continued antibiotics. Our doctor prescribed zithromax whenever we had symptoms. The symptoms which were relatively mild would subside with the short round of antibiotics. Our son had zithro about 12 times in 2 1/2 years. In early September, we had a severe PANDAS reaction. I call it PANDAS from ###### and the zithro would no longer work. Our son has been out of school for 6 weeks. He's 7 years old and his life has been stolen from him. We switched to a new antibiotic, Ceftin which has worked wonders along with a steriod burst. We are now considering IVIG therapy for him. I can't help but wonder if this could all have been avoided had he been prescribed continuous antibiotics. Even now, on daily Ceftin, his PANDAS symptoms surged back on Friday. I took he and our 1 year old in to the doc and against the doctors wishes had them both cultured for strep. My son came up negative, but our daughter was positive. This thing is a bear and shouldn't be taken lightly.

[heveritt1]

I just took my son off his daily dose of amox in the beginning of Sept. He has been good for 6-8 months (seemed so long, I can not remember). I thought things were good. Well, I brought home strep in my sinus's, put him right back on his anitobics and it was to late. He is having such a bad episond right now I am so mad at myself for trying this. Once I get it under control again, we will keep him on a daily dose for a long time.

[Dedee]

In response to the question about why the recommendation to try to take my son off antibiotics. At our visit with Dr. Murphy when we were discussing the whole antibiotic issue and I just asked her if this was something he needed to take until he was an adult or how do you determine the apporpriate stopping point. Her answer was that most PANDAS kids start to improve at around age 17 or 18 with complete resolution in the early twenties. She said that if he were COMPLETELY symptom free after two years we could see how he does without them. However if this was a time of hormonal surges or other changes to wait until those have leveled out. Some children will begin to improve a little earlier (around 16), and no longer need the antibiotics. Just like everything else with this illness, I am sure it is trial and error. We just take it day by day. I am just so thankful we have him on them and he is doing so well. It is different for each situation.

 

Dedee