Jump to content
ACN Latitudes Forums

Advice for ENT visit


faith

Recommended Posts

Faith,

 

It is my understanding it is a parasite that loves to make love to strep. I've asked this question of Dr. T. I've read a little about it as it is also found with kids who have had Kawasaki's. I know of one other child who is now fully recovered who is PANDAs and had similar findings.

 

-Wendy

 

Further update on tonsil culture:

 

I mentioned here that I was going to ask our ENT to culture the tonsils and that I would update the finding.

 

To remind those not familar, my son has strep in the past, but not in recent years, and all swabs, cultures and titer testing that we've had have been negative. Altho the reason for the tonsilectomy was because of enlarged tonsils, breathing/apnea, and not necessarily for PANDAS issues, our ENT did agree to culture the tonsils in the hopes of laying rest the idea of strep hiding in the tonsils.

 

Strep was not found. What was found in both tonsils was a bacterial called Haemophilus Influenzae. At present, we are not sure what exactly this means. ENT is not sure as he has not cultured tonsils before. I've consulted with Dr. T. on this. Since he's not seen this before, we are just looking at it as another peice of the puzzle.

 

What could it mean? To me, I wonder if, since it is a bacteria (gram negative), could it be the culprit for us, in that my son is a carrier, similar to if someone had strep in thier tonsils? My son shows no sign of any active infection or symptoms now or in the past of h.influenzae. Could this be natural flora in a majority of population? maybe. Even so, could it be acting similar to strep in the way of keeping my son's antibodies active? again, we don't really know. Dr. T. has prescribed a course of antiboitics to treat it as an active infection in the hopes of eradicating anything that might be circulating inside him. The treatment was 4 days of Rifampin along with a 10 day course of Augmentin. my son was not on abx right prior to this, altho we did give him a few days of Augmentin before the surgery, but had to stop midway due to vomiting, which I think was viral.

 

Since, Dr. T. has posted on the board about this finding and apparently, a couple other patients are reporting this as well. I don't know what it means. I am just wondering if this is a bacteria, and it was in fact harbored inside my son's tonsils, could this be our smoking gun? :lol:

 

any thoughts? does anybody have any info about h. influenzae with respect to how it may play into PANDAS or autoimmune?

 

thanks,

Faith

Link to comment
Share on other sites

  • Replies 67
  • Created
  • Last Reply

Top Posters In This Topic

Faith,

My son is one of the other patients.

Strep viridans was present in the tonsils as well.

 

Heavy hitter clindamycin seems to have the most effect. Unfortunately, I had to stop it because my son would only take liquid abx post surgery and that meant omnicef, which seemed to set him back again, lots of issues and behaviors more prominent. Back on clindamycin again and at least he's going to school now, he wouldn't before. Anxiety, anxiety.

 

I can write you in more detail.

 

UNITED HEALTH CARE APPROVED TREATMENT FOR PANDAS!

 

Michael

Link to comment
Share on other sites

michael, I had a feeling it was you, :lol: What were you treating with the clindamycin? the strep v. or the h.influ.? he is doing better now? yes, please let me know more...

 

wendy,

do you mean parasite or bacteria? I'm under impression it is bacteria, and I've pulled so much from the internet and do see that it seems to be a pathogen of some sort, just can't figure if it means anything if we don't seem to have an active infection. What do you make of this, in light of strep not 'seeming' to be the culprit for us? I guess what I'm trying to figure is if having this harbored in there could cause a similar antibody response as being a strep carrier?

Link to comment
Share on other sites

faith - just curious b/c i like to keep up with your story -- is this a new abx that you've never tried before?

 

on a different line, you did naet for quite some time with your son, right? but didn't feel it was so helpful?

 

 

The rifampin is new, but we have done a month of augmentin before. Naet did not seem to have any effect on his tics so far and we treated a good number of things for about 6 months. I'm not against trying again and treating some things that I hadn't got to yet, but just have so much on the plate right now. If that ever happens, you know I'll update.

Link to comment
Share on other sites

Faith,

My son is one of the other patients.

Strep viridans was present in the tonsils as well.

 

Heavy hitter clindamycin seems to have the most effect. Unfortunately, I had to stop it because my son would only take liquid abx post surgery and that meant omnicef, which seemed to set him back again, lots of issues and behaviors more prominent. Back on clindamycin again and at least he's going to school now, he wouldn't before. Anxiety, anxiety.

 

I can write you in more detail.

 

UNITED HEALTH CARE APPROVED TREATMENT FOR PANDAS!

 

Michael

What treatment was approved by UHC? And was it approved under a PANDAS dx code or something else?

Link to comment
Share on other sites

Further update on tonsil culture:

 

I mentioned here that I was going to ask our ENT to culture the tonsils and that I would update the finding.

 

To remind those not familar, my son has strep in the past, but not in recent years, and all swabs, cultures and titer testing that we've had have been negative. Altho the reason for the tonsilectomy was because of enlarged tonsils, breathing/apnea, possible failure to thrive (underweight), and not necessarily for PANDAS issues, our ENT did agree to culture the tonsils in the hopes of laying rest the idea of strep hiding in the tonsils.

 

Strep was not found. What was found in both tonsils was a bacterial called Haemophilus Influenzae (non type) the worst is type B, as in the HIB vaccine given to babies, but it is not the type B here). At present, we are not sure what exactly this means. ENT is not sure as he has not cultured tonsils before. I've consulted with Dr. T. on this. Since he's not seen this before, we are just looking at it as another peice of the puzzle.

 

What could it mean? To me, I wonder if, since it is a bacteria (gram negative), could it be the culprit for us, in that my son is a carrier, similar to if someone had strep in thier tonsils? My son shows no sign of any active infection or symptoms now or in the past of h.influenzae (this is a bacteria, not the virus that causes flu, it is not flu.) Could this be natural flora in a majority of population? maybe. Even so, could it be acting similar to strep in the way of keeping my son's antibodies active? again, we don't really know. Dr. T. has prescribed a course of antiboitics to treat it as an active infection in the hopes of eradicating anything that might be circulating inside him. The treatment was 4 days of Rifampin along with a 10 day course of Augmentin. my son was not on abx right prior to this, altho we did give him a few days of Augmentin before the surgery, but had to stop midway due to vomiting, which I think was viral.

 

Since, Dr. T. has posted on the board about this finding and apparently, a couple other patients are reporting this as well. I don't know what it means. I am just wondering if this is a bacteria, and it was in fact harbored inside my son's tonsils, could this be our smoking gun? :blink:

 

any thoughts? does anybody have any info about h. influenzae with respect to how it may play into PANDAS or autoimmune?

 

thanks,

Faith

Hi Faith:

 

This may not be related to your tonsil issue, but per my ds9's old records, he was seen in urgent care in 2008 for pneumonia and was placed on antibiotics. The doc did a throat culure because I asked him to (I always do) and it was positve for h flu as above no type specified. He had already had a tonsillectomy about a year and a half before that happened.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...