Titer Counts

[Mike]

So our son has had another titer count and after (I would guess) being a about a month strep free has had his titer count drop from 310 to 270 (200 being normal range) . He still tics and it waxes and wanes. He is off anti-biotics. Has anyone else had tics go down once titer count goes back to normal or does it take a little longer since the brain may not have fully recovered. I have always heard it takes months for the count to go down so this seems normal as far as I know. I have had someone else tell me their child took about 4 months for symptoms to go away. I have decided to give him 1 Keflex a week to help with anything since he has a few left and it's a pretty low dosage (500mg). Normal dosage a day was 1500 mg. I just feel like I am in the waiting stage and trying to refrain from smothering him with supplements. I guess my question would be for those who are fairly sure the strep (antibodies) was the cause of the tics in their child. I am interested in the correlation of titers/tics or OCD behaviors.

[Dedee]

Mike,

 

I assume you are talking about ASO titers. That is great that his titers have droped so quickly. I wonder though, was he tic free while on the antibiotics? Generally speaking giving Keflex only once a week will not make a significant difference in tics. It needs to be given daily. Zithromax can be given weekly to see changes in tics but Keflex and Amoxicillin are daily.

 

My son has PANDAS and his ASO titers were 1200 one month after his last strept infection. We retested him last week and they were only down to 1040, that is a little over 5 months after his last strept infection and he has also had his tonsils and adnoids removed. His tics only respond to antibiotics, not changes in titers. We have challenged this theory several times by taking him off the antibiotics and watching the results. It never fails that around 48 hrs later his tics start to return. When we start them back, they go away. We have done this at the doctors request three times with the same results. He has always been cultured negative as well. It seems to baffle them for some reason. Like they can't believe us that this happened before. By the way, my son does not realize that we give him antibiotics to treat his tics. We do not want him making that association and having pre-concieved ideas. He takes so many meds / supplements that he just takes what I give him without question, which makes things easy. We also have him on Cal / mag, Flax seed, Probiotics, and a multivitamin.

 

IMHO, if your son's titers are that low and he is still having tics he may benefit from daily antibiotic therapy unless you are just really opposed to that. It just depends on how much his tics interfere with his life and if they really bother him. Many times the more time that passes from the strept infection the less the tic severity regardless of the titers. (From what I have read) You may want to wait this out or try just some simple supplements. There are options out there for you. Good luck in whatever you choose.

 

Dedee

[Mike]

Mike,

 

I assume you are talking about ASO titers. That is great that his titers have droped so quickly. I wonder though, was he tic free while on the antibiotics? Generally speaking giving Keflex only once a week will not make a significant difference in tics. It needs to be given daily. Zithromax can be given weekly to see changes in tics but Keflex and Amoxicillin are daily.

 

My son has PANDAS and his ASO titers were 1200 one month after his last strept infection. We retested him last week and they were only down to 1040, that is a little over 5 months after his last strept infection and he has also had his tonsils and adnoids removed. His tics only respond to antibiotics, not changes in titers. We have challenged this theory several times by taking him off the antibiotics and watching the results. It never fails that around 48 hrs later his tics start to return. When we start them back, they go away. We have done this at the doctors request three times with the same results. He has always been cultured negative as well. It seems to baffle them for some reason. Like they can't believe us that this happened before. By the way, my son does not realize that we give him antibiotics to treat his tics. We do not want him making that association and having pre-concieved ideas. He takes so many meds / supplements that he just takes what I give him without question, which makes things easy. We also have him on Cal / mag, Flax seed, Probiotics, and a multivitamin.

 

IMHO, if your son's titers are that low and he is still having tics he may benefit from daily antibiotic therapy unless you are just really opposed to that. It just depends on how much his tics interfere with his life and if they really bother him. Many times the more time that passes from the strept infection the less the tic severity regardless of the titers. (From what I have read) You may want to wait this out or try just some simple supplements. There are options out there for you. Good luck in whatever you choose.

 

Dedee

 

I am open to giving him antibiotics to see if the tics reduce. I thought that those who did so would give a lower dosage than if he still had the strep. He was on 1500 mg / day of Keflex to fight the strep. Do you think 500 mg / day would be what it might take?

[Dedee]

I am not really sure about Keflex dosage. Someone else here may have more information on that than I do. My son takes Amoxicillin. He takes half the normal dose for his weight, so he is on 250 mg twice daily which works for him. I think what is important is that you use the lowest amount possible and still see a reduction in tics. We tried to go to only once a day on my sons but the tics started to come back so we had to increase it again. I would like to try Ziththromax which can be given weekly, but I have to wait until I see the PANDAS specialist that we have an appointment with in May to see if that is what we need. I remember that someone here has used Keflex but I am not sure who it was. Maybe they will respond for you. It is best to find a physician to work with you through this. I know how hard that is. You may have to do some traveling but it would be worth it in the end. Good Luck.

 

Dedee

[Chemar]

i think Ronna used Keflex for a while for her son, but since switching to prophylactic zithromax, she has seen an enormous improvement

 

I also believe Alison has found the azithromycin/zithromax best so far for her child

 

I really do think tho that dosing should be done under physician supervision and carefully, as with antibiotics one shouldnt try to guess doseage

[kkver]

mike how's ur kid doing . When did he had strep infection and how much time has passed. I am thinking about blood test for my kid who had strep around 20th march and got tics later. Will post the titers count when i get it.

[ad_ccl]

Hi Mike,

 

As Chemar said, dosages of prophylactic use should be made by a doctor. Azith is given once a week as it's half life is really long - so it continues to work in the system for days after being given - when my son was on amoxycillin it was given once a day as it has a short half life. The dosages changed as he got bigger - from 5 ml a day to 7ml a day. I would ask you doctor for the appropriate dose to work. Good Luck.

[Mike]

mike how's ur kid doing . When did he had strep infection and how much time has passed. I am thinking about blood test for my kid who had strep around 20th march and got tics later. Will post the titers count when i get it.

 

He started ticcing (with a neck tic) for the first time in his life on about March 7th. I had him checked for strep on about the 12th after doing some reading on PANDAS and he was potitive even though he showed no other signs (no sore throat). We started giving him antibiotics on the 13th and I would imagine the strep was gone near the end of March after the full round of antibiotics. We actually started with Keflex for 5 days and then hearing so much about Azith switched over. We did another culture early April and it was negative and was negative again a week ago. He still tics and it waxes and wanes. Usually less in the mornings and increases the later it gets and when he plays baseball. All I can hope for is that he needs time to recover from the attack as the antibodies go down.