PANDAS MOMS

[P_Mom]

Hi!

I have one more question for you all. For those of you who have PANDAS children and they take a preventative antibiotic, how long did your doctor say they would be taking this for?? I have found a doc in Ohio who is familiar with PANDAS and will be seeing my son in JAN. I spoke to him on the phone for awhile recently ( I was so grateful..HE actually called ME to discuss this!), and from what I told him and he told me, I believe my son will be placed on a preventative antibiotic. Just curious, because I forgot to ask him.....for how long? Please, all who have input, I'd appreciate you letting me know!!

HAVE A MERRY CHRISTMAS!!

 

Kelly

 

Oh, my son is basically asymptomatic right now, so, the antibiotic isn't needed to control his symptoms, just prevent strep. What do you all think? Would Pen V be the best to start out with at this point?

[Dedee]

Well, I am not sure if I can give you the answer you are looking for but I will tell you what they told me. My son does take antibiotics to help his symptoms so my case may be a little different. Dr. Murphy said the PANDAS typically begins to subside between 17-20 years of age. So she recommended that every couple of years or so that we should do a "trial" period off of antiobiotics and see how his symptoms are. If he regresses, and everything comes back then obviously he still needs them. If he does beautifully, then it may be ok for him to stay off. This is just such a day to day experience for us, I am sure we will play it by ear and see how things are going at about age 14 or so (which will be in 2 years).

 

I am very concerned about my son today. He had a positive strep test this morning after complaing with a sore throat. This is the first time he has actually had a positive stept test in about 16 months since his tonsils were removed and we started antibiotics. He has been exposed to strep before but didn't actually get it, and he still regressed and got symptoms. So I really am scared to think what this could potentially do. Well, we started Augmentin as soon as we could, so all I can do is hope for the best. Wish us luck.

 

Dedee

[ad_ccl]

Our ID doctor suggested staying on until 18 - the same protocol that was used for rheumatic fever. We have no plans of taking him off as a trial - as the one and only time we did that it was a disaster.

[kkver]

ad_ccl

 

For how long your son is on antibiotic ?

 

DKRESmith

 

As said here so many times every case is different and so is the treatment . Some case require continues use of antibiotics where as in some cases you use it to kill the strep and then stop. There are plus and minus with going with antibiotics , like you will not see Tics/OCD but what is long term effect of antibiotics and what will happen after you stop after long term use is still under evaluation.

I try to use antibiotic for 10 days to kill the strep and then let body recover but in some cases you need continues use of antibiotics. So in end it is purely case to case bases and best thing is early detection of strep.

[ad_ccl]

He has been on antibiotics for 3 1/2 years.

[michele]

Kelly,

Good to hear the Dr. called you. What did you think of him? Will he put him on antibiotics long term when he has no symptoms presently? What did he have to say?

 

We are currently trying pen vk 250 twice a day daily. However we have been using stepped up antibiotics like augmentin and omniseph for the past month during a flare up of symptoms. We started with a three month trial of pen vk to see how it works. I personally feel it is not strong enough to control my son's symptoms. He seems much better on omniseph. Even Augmentin didn't work as well.

 

We had a school IAT today. They claim Andrew is the only case of this syndrome they have heard of at his school. Although they agree it encompasses other disorders like compulsiveness, ADHD, tics, moods etc. Basically we are now going forward with an OT evaluation. They have to prove the deficit in his handwriting will impede his eduacation. The upside is Andrew's half day teacher only notices his handwriting not the other issues. He occasionally sees him crack his knuckles, using the bathroom one time per day, no adhd, or obsessing. I know his teacher is very tolerant and patient but hard to believe he sees nothing else. This is a good sign. Although maybe the school will think it is in my head or poor parenting. I've got to admit since starting ot outpatientonce a week he is being neater at handwriting and letter formation.

 

Michele

 

He has been on antibiotics for 3 1/2 years.

[P_Mom]

Hi..Thanks to all!!

 

ad ccl... What antibiotic does your child take? Has there been a case of strep since or flair up of symptoms? How old is your child? Sorry, I know, so many questions.

 

Dedee.. First, I will pray for you and your son that he stays stable, believe me, we are all very hopeful for good news. Second, what antibiotic was he on when he contracted strep?

 

Thanks again ALL of you. Michele, I do believe he is going to put him on antibiotics even without many symptoms right now, we are trying to keep it that way. He said you need to weigh the damage caused by strep to the use of long term antibiotics, and in this case, the strep damage, severe ocd/tics, seem to outweigh the risk of long term antibiotic use. That is what I gathered from our discussion, I'll let you know more after we see him in Jan.

[Dedee]

My son is taking Amoxicillin 250mg twice daily. He has been on this for a little over a year now. The strep that is going around his school is really a strong strain. Two children that I know have been treated for the strep then progressed on to pneumonia. My niece got strep and was treated with amoxicillin but after 8 days of treatment had to be switched to Augmentin because she continued to run fever. So evidently this is a strong strain of strep that is going through the community. Of course, I am sure that my other two children will get it now and I worry that he will continue to have this exposure untill we get everyone well in the house. I may try to get more augmentin and keep him on that until all is clear house wide so to speak. So far, he has not shown any neurologic symptoms, but it usually takes about 24-48 hours. Holding my breath...

 

Dedee

[michele]

Dedee,

I can't believe he got the strep while on the daily antibiotic. What made you take him in for a culture? I was so hoping they would be protected while on it.

 

I myself have had the cold and sore throat for about six days. I have started penicillin last night. Andrew now has the cold too. I hope everyone gets well for the holidays. Iknow it always goes through us all. My daughter is complaining of a stomach ache. I had better have her checked for strep. Last time she was the carrier. I pray your son does well.

 

Michele

My son is taking Amoxicillin 250mg twice daily. He has been on this for a little over a year now. The strep that is going around his school is really a strong strain. Two children that I know have been treated for the strep then progressed on to pneumonia. My niece got strep and was treated with amoxicillin but after 8 days of treatment had to be switched to Augmentin because she continued to run fever. So evidently this is a strong strain of strep that is going through the community. Of course, I am sure that my other two children will get it now and I worry that he will continue to have this exposure untill we get everyone well in the house. I may try to get more augmentin and keep him on that until all is clear house wide so to speak. So far, he has not shown any neurologic symptoms, but it usually takes about 24-48 hours. Holding my breath...

 

Dedee

[emma1]

At our house, it's not Christmas until we all get sick! We have two different illnesses going right now, but my daughter is still OK.

 

I cannot comment on the "how long" question. We are "different" as strep caused my daughter's symptoms but she was 16 when this started!! My doctor found a research article that said there are cases of this happening (PANDAS-like illness with older child). He is following a rheumatic fever type protocal -- Pen VK twice a day, but hasn't indicated any time limits. (My biggest concern is that the doctor is a pediatrician, and so in a couple of years, I will need to find a new doctor, and I've read here what a struggle it is to find one willing to prescribe antibiotics.) We use it because my daughter improves so very much on antibiotics.

 

But I am shocked that your child got strep while on antibiotics, Dedee -- I thought that was one thing we didn't need to worry about!!!!!!!

[Dedee]

Yep, I was very suprised as well. But he never complains of a sore throat and he woke up saying that it was KILLING him. I had some home strep tests and I tested him at home and it was positive. I was afraid that maybe I did it wrong so I just took him on in to the pediatrician and he was positive there as well. But really, everyone in this area that has had strep has been so extremely sick from it and literally no one has gotten better on just the amoxicillin alone. I think this must be some super strain that is immune to the "cillin" family alone. I think we have been very lucky in general though, because last year both my daughter and my other son had strep and he did not have a positive result after living in the same house with them. So I am hoping this is just some fluke. So far he is still doing well, I saw some tics emerging last night, mostly head bobbing and neck stretching. I had him take an epsom salt bath and that helped some. I gave him an extra calcium/mag this morning, and I will probably add another tonight and keep up the baths through the week. I don't know if that is just the beginning or if that is all we will see. Time will tell. Thanks for the good wishes.

 

Dedee

[kkver]

Dedee

this so strange to be tested +ve and seeing Tics while still on antibiotics. How much dosage of antibiotic are you giving him in and have you seen any reduction in tics . Now this is what i am always afraid of a person getting strep while still on preventive.

[PANDAS_Denmark]

Hi -

 

Just wanted to add that my son (now 7 years old, diagnosed with PANDAS a year ago) has been on antibiotic for a year. As with reumatic fever it is assumed, that he will have to be on antibiotic untill he´s about 18 or 21.

 

My son has been on Penicillin V, Amoxicillin and latest on Zithromax/Azithromycin -- and has had strepinfections with them all. That is : The strep throat tests hasn´t been positive, but it has been possible to see that and when he has had strepinfections in the blodtests.

 

As such it seems that no antibiotics is completely safe ... :-(´

 

I have talked to several doctors about this. They admit, that the blodtests tell, he has had strepinfections. However they keep telling themselves and me, that it shouldn´t be possible.

That leaves us with three still ongoig questions and discussions with the doctors :

 

1) Knowing that my son keeps getting strepinfections while on Penicillin V, Amoxicillin and latest on Zithromax/Azithromycin : Is there another and better antibiotic, that should be tried ?

2) Knowing that my son keeps getting strepinfections while on antibiotics : Should he be hometeached, trying to minimize the risk to get infected ?

3) Knowing that my son keeps getting strepinfections while on antibiotics, and knowing how this affects him every time with (several months with tics and massive OCD) : Should one try to minimize the damage the infection can do/does, by giving him IVIGtreatments and/or stereoidtreatments ?

[michele]

I was just wondering if your son tests negative to the throat culture do they still run blood work after each culture that is negative? I had never thought of doing this. I am sorry that the antibiotics aren't working for your son. Are there any specialist to consult with on the IVIG or steroid treatment? I think in your case it would be in your best interest to get a hold of NIMH and see if they can give you a DR. referral in Denmark who studies infectious disease with a concentration on autoimmune disorders. At least you have found Dr's who are working with you to this point. Maybe they will even have a referral for you of a specialist. How has your son been acting since the strep?

 

This is quite alarming that you and Deedee both have kids who are getting strep while on long term antibiotics!

Michele

Hi -

 

Just wanted to add that my son (now 7 years old, diagnosed with PANDAS a year ago) has been on antibiotic for a year. As with reumatic fever it is assumed, that he will have to be on antibiotic untill he´s about 18 or 21.

 

My son has been on Penicillin V, Amoxicillin and latest on Zithromax/Azithromycin -- and has had strepinfections with them all. That is : The strep throat tests hasn´t been positive, but it has been possible to see that and when he has had strepinfections in the blodtests.

 

As such it seems that no antibiotics is completely safe ... :-(´

 

I have talked to several doctors about this. They admit, that the blodtests tell, he has had strepinfections. However they keep telling themselves and me, that it shouldn´t be possible.

That leaves us with three still ongoig questions and discussions with the doctors :

 

1) Knowing that my son keeps getting strepinfections while on Penicillin V, Amoxicillin and latest on Zithromax/Azithromycin : Is there another and better antibiotic, that should be tried ?

2) Knowing that my son keeps getting strepinfections while on antibiotics : Should he be hometeached, trying to minimize the risk to get infected ?

3) Knowing that my son keeps getting strepinfections while on antibiotics, and knowing how this affects him every time with (several months with tics and massive OCD) : Should one try to minimize the damage the infection can do/does, by giving him IVIGtreatments and/or stereoidtreatments ?

[Dedee]

Here is the thing, my son does not take what is considered a "full dose" of antibiotics daily. The amoxicillin is only 250mg twice daily. This dose is considered low dose as he is the weight of an average adult. So if you have a strong strain of strep in a weakened system (tired run down child), then all the conditions are favorable for the strep to win the battle. Nothing is 100%. Since he has started the Augmentin we have seen the few tics but nothing else really to speak of. I consider that a blessing. Yesterday both of my other children complained of a sore throat so my pediatrician called in antibiotics for them as well. I am hoping we can get everyone well by christmas.

 

I am keeping a positive mind set and feel like this is still a winning situation since he has been exposed before and stayed negative. So far the symptoms have been minimal, for sure nothing we can't deal with and stay in a good frame of mind. It doesn't seem to be bothering him at all, so again, I try to let him be my guide. Epsom salt baths seem to do the trick in the evenings and it really isn't that noticable to most people. But of course, Moms always watch. Still keeping my fingers crossed.

 

Dedee