those darn tics

[chase23]

Hi everyone, we've had such a hard time with these tics. Not sure what to do. Zithromax got rid of them completely a few months ago and we had a blissful 2 months of silence. but she got like 3 viruses in a row and i have'nt been able to get rid of them since. tried motrin, she's on daily zithro now but was doing every other day. Called trifileti this morning who will up it to twice a day. wondering if the mistage i made was to take her down to once a day then every other day. she was perfect on twice a day. so couple of questions. for those who have ticers, how long do your tics last after an exacerbation. and for those on zithro, what is your normal dosage and you flare dosage. if upping it to twice a day does not work i'm wondering if we should try steriods for the first time

[BoyIowa]

Our ds had a similar experience where the Zith really helped at first bring the tics down substantially, but never completely gone. We are fighting Lyme too and have had the ticcing for about 2 years (only been treating 1 year-stupid dictors). Our regime seems to knock most everything down, but not the tics completely yet. I am very hopeful because they have gone down substantially since we started and I have read that tics are the last to go. Our ds doctor always says to me, 'it's not a marathon, be patient, his body needs time to heal'. : )

[Fixit]

Hi everyone, we've had such a hard time with these tics. Not sure what to do. Zithromax got rid of them completely a few months ago and we had a blissful 2 months of silence. but she got like 3 viruses in a row and i have'nt been able to get rid of them since. tried motrin, she's on daily zithro now but was doing every other day. Called trifileti this morning who will up it to twice a day. wondering if the mistage i made was to take her down to once a day then every other day. she was perfect on twice a day. so couple of questions. for those who have ticers, how long do your tics last after an exacerbation. and for those on zithro, what is your normal dosage and you flare dosage. if upping it to twice a day does not work i'm wondering if we should try steriods for the first time

 

When it was strep only...ds12 responded 100% standard dose abx..I was spoiled.

Ds12 is in episode 3yrs now and still trying to pursue what the he*&&^^^%!!!!!

 

Ds9 i thought was going to be non-pandas...exposed to strep and nothing..but..it was about 6 weeks later the tics started and his neck became very enlarged and found it it was mono....mono takes longer to clear...and it took a full 3 months for them to remit.

 

For my kids...strep gets quick resolve.

I believe for them and others i talk to...when it is other(ie virus, myco p. possible lymes)the road is ALOT longer.

Just what i'm putting together now. I think i' a slow learner...but to my defense i was used to getting remission within 2-4 weeks with strep.

It S*(&^554!!!!!!

[rowingmom]

Our ds had a similar experience where the Zith really helped at first bring the tics down substantially, but never completely gone. We are fighting Lyme too and have had the ticcing for about 2 years (only been treating 1 year-stupid dictors). Our regime seems to knock most everything down, but not the tics completely yet. I am very hopeful because they have gone down substantially since we started and I have read that tics are the last to go. Our ds doctor always says to me, 'it's not a marathon, be patient, his body needs time to heal'. : )

 

Our experience was similar as well. First round of Penicillin K for strep resolved ticcing after 7 days. It returned when we discontinued after day 14. Second round resolved ticcing after 7 days, but it returned after day 14 even though DD10 was still taking Abx. She has now been on Biaxin/rifampin for lyme/bart for 1 year (probably had it for at least 3 years)and her symptoms are greatly improved. Ticcing doesn't increase with viral infections, although pain/emotional symptoms sometimes do. Her ticcing remains at a level 1 out of 10. Her friends/teachers don't seem to notice and they don't really bother her. We have not tried steroids as they are contraindicatied in lyme.

Edited April 24, 2012 by rowingmom

[Godsgifts]

We've just been dx around 2 weeks ago. It's all pretty new to us. Our ds12 has had symptoms that started about 2 years ago, but more OCD rituals than tics. The tics only started a few months ago and with full force. He was put on a 10 day dose of Augmentin about 7 days ago and although he's doing better he still has tics and says that he also still has the bad thoughts. We are going back to see his doctor this week but were kind of getting discouraged and wondering if this is really PANDAS since the ax haven't helped as much as we were expecting. Is this normal with PANDAS? And could my continual colds and allergies be hindering his recovery? BTW he also has allergies and it's Springtime which is never good for allergies.Anyone have any advice, or experience with this?

[shannon aka mommy]

I'm kindof wondering the same thing. My son is positive for Myco P and Mono. He's a ticcer (motor and vocal), OCD, anxiety and sensory sensitivity to noise and light. Been on Zithro for a week. How long does it take before we see if it is helping? DS asks me everyday and I just don't know what to tell him. My understanding is that it could be months...is that true? I'm reading that some of you had success with the Zithro, but how long did it take?

[Fixit]

We've just been dx around 2 weeks ago. It's all pretty new to us. Our ds12 has had symptoms that started about 2 years ago, but more OCD rituals than tics. The tics only started a few months ago and with full force. He was put on a 10 day dose of Augmentin about 7 days ago and although he's doing better he still has tics and says that he also still has the bad thoughts. We are going back to see his doctor this week but were kind of getting discouraged and wondering if this is really PANDAS since the ax haven't helped as much as we were expecting. Is this normal with PANDAS? And could my continual colds and allergies be hindering his recovery? BTW he also has allergies and it's Springtime which is never good for allergies.Anyone have any advice, or experience with this?

 

got to run..

yes pandas.

tics are a pain.

need to check for all possibel infections

and may need to include and investigate integrative medicine as well.

Allergies are a huge problem for ds12 and his tics and his onsets...again it S*^%*(!!!!!!!

absolutely can be hindering recovery.

ds is on allergy shots. remember for these kids not one size fits all or even 10%...it is truly an individualized conditon....

[Godsgifts]

I'm kindof wondering the same thing. My son is positive for Myco P and Mono. He's a ticcer (motor and vocal), OCD, anxiety and sensory sensitivity to noise and light. Been on Zithro for a week. How long does it take before we see if it is helping? DS asks me everyday and I just don't know what to tell him. My understanding is that it could be months...is that true? I'm reading that some of you had success with the Zithro, but how long did it take?

[Godsgifts]

Ds12 was on Zithro a few months ago for an upper respiratory infection. I'm thinking he only took it for 5-6 days though. BUT it did not help his PANDAS exacerbation at all. When I talked to the doctor (who dx PANDAS) about it, he told me that many times Zithro will not penetrate deep enough into the tonsils to kill all of the strep. He explained that the tonsils had deep pockets and trenches where the strep can hide and that ds12 needed something stronger that will eradicate the strep not just stop the bacterial growth. I'm new to all of this as well, so correct me if I'm wrong but that is how I understood him.