PANDAS and Nasal Corticosteriods (Nasonex,Veramyst)

[patty]

Betty,

 

I had previously PM you on the dr. that we have seen in Palo Alto. Let me know if you want the info. again.

 

Pat

[familyof4]

Hi - I know you said you have used saline sprays....but have you actually done the washes or rinses? They are very different. Try watching this video: http://www.neilmed.com/usa/sinusrinse_video.php. They also have a video on nettipot use. We have done CT scans 3 times on my son due to his sinus issues. The first was after a scary seizure that revealed the sinus infection (he was 18months and had been symptomless) another one to prove that the infection had been cleared up and a third to rule his sinuses out as a problem when he was having health issues that couldn't be tracked down to a specific cause.

 

Good luck!

 

Heather

[Betty04]

Just wanted to add an update. Thanks for everyone's replies and I think a separate forum for PANDAS is great!

 

We have continued to give my son Veramyst. His tics definately worsened. However he has not been able to breathe so well in months! We are keeping him on it for at least 2 weeks. We are one week into the trial and I think his tics are now starting to improve again. He has continued on the Clindamycin for sinusitis. The DAN doc hypothesizes that he had worsened on the Veramyst due to it causing dysbiosis and says she has seen this happen before. That may be the case although another part of me wonders if there is all this bacteria in his sinuses and it is finally draining, maybe that process somehow works to agitate things? I will keep updating as we are looking at my son's tics as possible PANDAS related but not with the typical strep presentation as his titers have never been elevated nor has had a positive culture. I will post more details as we are looking into Brown's research from the 50's (cited in Buster's articles about PANDAS) that initially hypothesized sinusitis as the cause of tics. If you read my previous posts you can see my son's history that includes an immune component - an acute exaccerbation after last year's flu shot and chronic sinus infections with tonsil removal. Let me know if you have any questions, Betty

[momin houston]

Betty04 - Did the removal of tonsils help the sinusitis?

[EmilyK]

Do they have any idea what the allergy trigger for all the nasal swelling might be and can the trigger be avoided or treated via allergy shots? I use flonase and it does work great without all the side effects that come with an oral predinose burst (which I have had in the past for asthma). However, I do much better and need less flonase when I can successfully avoid and reduce exposure to my allergic triggers.

[cobbiemommy]

The nasal steroid spray stays within the nasal and sinus cavity if used correctly. I think it is more important to get the sinuses opened up and draining than risk chronic sinusitis. We are having a lot of sinus problems here and always have had them. DS, 13, is on steroid taper and waiting for results of CT scan. He is also getting allergy shots, taking allergy meds, flonase, and antibiotics.

 

Soemtimes the reason for blockage can be functional, such as deviated septum or enlarged turbinates. IMO, no amount of steroids, homeopathic or allopathic meds are going to correct those things. So, you need a good ENT in your corner.

 

I know oral steroids are not great, but he is having the best days both mentally and physically because his sinuses are draining and he can finally breathe.

 

Cobbie

Edited September 19, 2012 by cobbiemommy

[momin houston]

Do they have any idea what the allergy trigger for all the nasal swelling might be and can the trigger be avoided or treated via allergy shots? I use flonase and it does work great without all the side effects that come with an oral predinose burst (which I have had in the past for asthma). However, I do much better and need less flonase when I can successfully avoid and reduce exposure to my allergic triggers.

My daughter does not have allergies to my knowledge. We only tried the Veramyst because they thought she had allergies; but, it might be PANDAS or Tourette's causing her to snort.

[momin houston]

My daughter was tested for 33 allergens and none of the allergy medications helped at all. The Veramyst may have triggered the snorting actually.

We were trying to resolve a clearing of the throat, coughing which has since gone away and she developed the snorting/gulping which are tics.

[momin houston]

The nasal steroid spray stays within the nasal and sinus cavity if used correctly. I think it is more important to get the sinuses opened up and draining than risk chronic sinusitis. We are having a lot of sinus problems here and always have had them. DS, 13, is on steroid taper and waiting for results of CT scan. He is also getting allergy shots, taking allergy meds, flonase, and antibiotics.

 

Soemtimes the reason for blockage can be functional, such as deviated septum or enlarged turbinates. IMO, no amount of steroids, homeopathic or allopathic meds are going to correct those things. So, you need a good ENT in your corner.

 

I know oral steroids are not great, but he is having the best days both mentally and physically because his sinuses are draining and he can finally breathe.

 

Cobbie

TWO ENTs have already said nothing is wrong with her so we are thinking they are tics from PANDAS or Tourette's and not sinusitus related.

We even traveled to California and there was no change in her vocal tics.

[EmilyK]

TWO ENTs have already said nothing is wrong with her so we are thinking they are tics from PANDAS or Tourette's and not sinusitus related.

We even traveled to California and there was no change in her vocal tics.

 

So I wonder how a nasal steroid spray would help at all? They do stay localized to the nose but it seems that her nose really isn't the issue. Good luck - I hope you can get her some relief!