Ok...now what?

[trubiano]

First let me say I'm happy the bloodwork, urine and throat cultures are negative for strep! Now what??!! My son was on pcn for 4 years and the ocd, tics, hallucinations, emotional issues all came back. He ended up having perianal strep and he has been on augmentin xr and has been symptom from 2 years. Now the facial tic has started and every week something else is added to it. Example, started just a nose crunch, then nose and eye blinks, and now the neck. The only time my son has had tics is when there is strep. Any ideas what else it could be or what we should do?

[MomWithOCDSon]

Many of us have found that, unfortunately, even if strep remains the "big monster" and initiated our PANDAS/PANS journey, our kids subsequently become reactive to other triggers and can therefore flare at other immunological "events" such as exposure to strep despite not actively "catching it," myco p. ("walking pneumonia"), allergies, and/or cold and flu viruses. Any evidence of any of those potential culprits?

[beeskneesmommy]

Elevated titres do not necessarily mean you can rule out PANDAS. It is much more complex than cause/effect from active Strep. especially after time. Get him to a specialist who will test for other infections as well!

[trubiano]

Elevated titres do not necessarily mean you can rule out PANDAS. It is much more complex than cause/effect from active Strep. especially after time. Get him to a specialist who will test for other infections as well!

 

My ped has a call into Dr. Latimer, but it could be months before she calls back(two months last time we called.) I am very lucky to have a doc here in Georgia where we live that will order any tests needed, but we are her only PANDAS case. What other infections should we be looking for? The first available appointment with Latimer was Feb, so until then who should we see? Last time I just ignored the tics thinking being school he was exposed to others, it turned ugly quick!

[smartyjones]

[My ped has a call into Dr. Latimer, but it could be months before she calls back(two months last time we called.) I am very lucky to have a doc here in Georgia where we live that will order any tests needed, but we are her only PANDAS case. What other infections should we be looking for? The first available appointment with Latimer was Feb, so until then who should we see? Last time I just ignored the tics thinking being school he was exposed to others, it turned ugly quick!

 

 

i think in some of the more complicated cases with multiple causes, viruses can be a serious player -- HHV6, cytomegalovirus.i think at one of the past conferences, someone reported the role of viruses was discussed a bit.

[mompaisley]

Dr. T does not have a wait, and he can do phone consults.

[airial95]

A couple of thoughts - first off - my son has NEVER had an elevated strep titer - even in bloodwork taken on the SAME DAY as positive throat cultures with other clinical presentation of strep. So I agree with others that the lack of titers is not indicative of anyting.

 

Strep has always been our only trigger as well - although again, I agree with others, that it can morph to include other various other things.

 

Now - that being said, if strep has typically been your main culprit, as your ped considered strep hanging out in the nasal cavities? It's tough to culture, but on more than one occasion it was the culprit in a flare of my son's. We used a topical abx (muciroprin, altabax, etc...) swabbed lightly in the nasal cavity a couple of times a day for a couple of weeks - in addition to his oral abx.

 

The application of nasal abx has become a standard protocol for us for at least the first 7-10 days after another confirmed strep infection - just in case.

[Missmom]

I am just trying to put two and two together, but my son had tics which would not go completely away, then I treated a wart on his toe and got rid of it. Tics then subsided. A few weeks later tics appear again and I check and he has another wart. Start treating the wart now tics are subsiding. Not sure though as during this same time we have changed medicines and things and eventually ended up back on augmentin which seems to help my son. So still not sure if the wart thing is related, or if it is just coincidence due to the changes in abx. I will keep a note of it in my book though. Sometimes it may be something as simple as a wart though.

[trubiano]

I am just trying to put two and two together, but my son had tics which would not go completely away, then I treated a wart on his toe and got rid of it. Tics then subsided. A few weeks later tics appear again and I check and he has another wart. Start treating the wart now tics are subsiding. Not sure though as during this same time we have changed medicines and things and eventually ended up back on augmentin which seems to help my son. So still not sure if the wart thing is related, or if it is just coincidence due to the changes in abx. I will keep a note of it in my book though. Sometimes it may be something as simple as a wart though.

 

Hmm.. We have no warts, but last year he did have to have 31 little ones burned from his arms, legs, and feet. Warts do not run in our family. They said he had so many because he scratched one ane they spread. Is warts common for other pandas children?

[JuliaFaith]

A couple of thoughts - first off - my son has NEVER had an elevated strep titer - even in bloodwork taken on the SAME DAY as positive throat cultures with other clinical presentation of strep. So I agree with others that the lack of titers is not indicative of anyting.

 

Strep has always been our only trigger as well - although again, I agree with others, that it can morph to include other various other things.

 

Now - that being said, if strep has typically been your main culprit, as your ped considered strep hanging out in the nasal cavities? It's tough to culture, but on more than one occasion it was the culprit in a flare of my son's. We used a topical abx (muciroprin, altabax, etc...) swabbed lightly in the nasal cavity a couple of times a day for a couple of weeks - in addition to his oral abx.

 

The application of nasal abx has become a standard protocol for us for at least the first 7-10 days after another confirmed strep infection - just in case.

So glad you found out about this! Nasal abx-resistant staph (MaRCONS) is also something to look for and is fairly common. A deep nasal swab (ouch!) can test for this.

[trubiano]

A couple of thoughts - first off - my son has NEVER had an elevated strep titer - even in bloodwork taken on the SAME DAY as positive throat cultures with other clinical presentation of strep. So I agree with others that the lack of titers is not indicative of anyting.

 

Strep has always been our only trigger as well - although again, I agree with others, that it can morph to include other various other things.

 

Now - that being said, if strep has typically been your main culprit, as your ped considered strep hanging out in the nasal cavities? It's tough to culture, but on more than one occasion it was the culprit in a flare of my son's. We used a topical abx (muciroprin, altabax, etc...) swabbed lightly in the nasal cavity a couple of times a day for a couple of weeks - in addition to his oral abx.

 

Nasal!!! The only place I didn't think about! Thank you!! Strep has always been our issue. No symptoms around others who are sick. You said its hard to culture. Should I skip my ped and go to an ent to swab? Thanks again!!

[JuliaFaith]

I am just trying to put two and two together, but my son had tics which would not go completely away, then I treated a wart on his toe and got rid of it. Tics then subsided. A few weeks later tics appear again and I check and he has another wart. Start treating the wart now tics are subsiding. Not sure though as during this same time we have changed medicines and things and eventually ended up back on augmentin which seems to help my son. So still not sure if the wart thing is related, or if it is just coincidence due to the changes in abx. I will keep a note of it in my book though. Sometimes it may be something as simple as a wart though.

Have heard that warts are viral. Have you had viral blood panels done on him?

[Missmom]

I am just trying to put two and two together, but my son had tics which would not go completely away, then I treated a wart on his toe and got rid of it. Tics then subsided. A few weeks later tics appear again and I check and he has another wart. Start treating the wart now tics are subsiding. Not sure though as during this same time we have changed medicines and things and eventually ended up back on augmentin which seems to help my son. So still not sure if the wart thing is related, or if it is just coincidence due to the changes in abx. I will keep a note of it in my book though. Sometimes it may be something as simple as a wart though.

 

Hmm.. We have no warts, but last year he did have to have 31 little ones burned from his arms, legs, and feet. Warts do not run in our family. They said he had so many because he scratched one ane they spread. Is warts common for other pandas children?

I don't know, I am just trying to figure out if there is any connection. I think warts are viral, and not sure the virus stays in his system all the time. I am sorry, but I have not had much time lately to research it, just making a mental note of it. Thirty or so warts sounds pretty severe, maybe others can chime in if they have noticed any connection.

[trubiano]

I am just trying to put two and two together, but my son had tics which would not go completely away, then I treated a wart on his toe and got rid of it. Tics then subsided. A few weeks later tics appear again and I check and he has another wart. Start treating the wart now tics are subsiding. Not sure though as during this same time we have changed medicines and things and eventually ended up back on augmentin which seems to help my son. So still not sure if the wart thing is related, or if it is just coincidence due to the changes in abx. I will keep a note of it in my book though. Sometimes it may be something as simple as a wart though.

Have heard that warts are viral. Have you had viral blood panels done on him?

We have been lucky that all Dr. Latimer had to do is to change antibiotic and last strep symptoms went away. Maybe I should be seeing a different type of doc too? I would love to hear what type of doc I might need to add to our list!

[airial95]

Nasal!!! The only place I didn't think about! Thank you!! Strep has always been our issue. No symptoms around others who are sick. You said its hard to culture. Should I skip my ped and go to an ent to swab? Thanks again!!

 

It depends on how PANDAS friendly your ped is. Ours has skipped swabbing entirely, and just added that as a standard of care whenever we have a flare...