PANDAS and Nasal Corticosteriods (Nasonex,Veramyst)

[Betty04]

Hi,

 

We have been investigating whether my son may have a PANDAS component to his tics. We thought this last year and preventatively removed his tonsils. He was great for 2 months post surgery but then they returned. We decided to try a trial of Clindamycin starting 2 weeks ago since he responded to it before the surgery and he seemed to have an increase in tics a couple weeks ago when we think he was exposed to strep. He was looking great on the Clindamycin but at day 6 caught a bad cold. He still looked improved on the antibotic but was very congested and not draining his sinuses. (His sinuses are what we are thinking is the source of the bacteria- his ENT suspects chronic sinusitis/bacterial infection). My question to PANDAs parents is, in your experience is it okay to give a nasal corticosteriod? I read the info and I know it is an immune-suppressant. The ENT gave him Veramyst on Monday to try and shrink his nasal swelling and help him drain to prevent continued infection. On this e-pandas.com website I read this mom's story and she was advising against certain meds for PANDAs kids and steriods was one of them? Any advice/reassurance would be great... I am so nervous that any gains with the Clindamycin will be negated by the addition of the nasal spray! Thanks for all the help, Betty

[EAMom]

Is this like flonase? I would think it would be fine.

[Betty04]

Is this like flonase? I would think it would be fine.

 

Yes it is the same thing as Flonase. Thanks for the quick reply... have you had a positive experience with Flonase?

[EAMom]

I've used it myself for seasonal allergies. Works pretty good. No side effects for me. I would think the amount of steroid that gets absorbed systemically would be minimal (if any).

 

Plus, I'm reassured that your son is also on antibiotics...

[familyof4]

My 5 year old son, who we think has PANDAS, takes Nasonex for sinus issues and it doesn't seem to have any negative effects with regards to his tics and behaviors. He was on Nasonex daily for over a year and now we only use it if he has a cold.

 

I wondered if you are doing daily nasel washes using a Nettipot or Neilmed bottle? My son had cronic sinus infection issues as a toddler and the only way to keep him healthy are these daily washes. It was a fight at first (Age 18months) but now he even askes for extra nasel washes if he has a cold. They have been a life saver for us.

 

Heather

[patty]

I would stay away from steriod medication when possible, even if it does not effect your child's tics or behavior because it is suppressive in nature. It may drive the condition deeper and possibly manifest into something worst.

 

My son used to use Xclear and it seems to help some. You may also want to consider allergy desensitization if he has food and/or environmental allergies. Also, try consulting a NP for allergy relieve.

 

Pat

[Betty04]

Thanks for the responses. I agree that steroids is the last thing I want to give because of its immunosuppressant effect. I just am stuck... his ENT says that the swelling/congestion in his opinion has a bacterial component and is not allergic or not solely allergic. He has been on antibiotics for 2 weeks and the congestion is not draining. Saline sprays and an antibiotic nasal spray has had no effect. The ENT feels short of a CT scan of his sinuses to see if he is a candidate for surgery, the nasal corticosteriods are the only option. He is very young (not yet 4) for sinus surgery and we already had 2 surgeries last year (adnoids removal; tubes in ears and then tonsils removed and turbinoids in nose reduced)! I feel I may have to have the tics temporarily increase and keep him on the spray for at least until the congestion clears, otherwise it is just a vicious cycle and we will not rid him of the bacteria in his sinuses that we think is the root of the tics? Any thoughts/feedback are always welcomed. Thanks, Betty

[patty]

Betty,

 

I understand your concerns. If you consult an allopathic dr., that is your typical response and your options would be steriod or surgery. In my opinion, unless you get to the root of the problem, allopathic measures is just a bandaide. I would urge you to talk to a NP, homeopath, NAET practitioner... to get a different perspective then you may find more options.

 

Pat

[Betty04]

Betty,

 

I understand your concerns. If you consult an allopathic dr., that is your typical response and your options would be steriod or surgery. In my opinion, unless you get to the root of the problem, allopathic measures is just a bandaide. I would urge you to talk to a NP, homeopath, NAET practitioner... to get a different perspective then you may find more options.

 

Pat

 

 

Sorry I should have clarified. We see a DAN doctor. We are working to improve his gut and immune functioning but even she has suggested incorporating traditional medicine to rid him of the bacteria in his sinuses. I am seeing her tomorrow so I will discuss my concerns, though previously she was supportive of using the nasal steriod spray.

[patty]

Betty,

 

I have not dealt with a DAN dr., so i am not sure what is their philiosphy of healing. But i can tell you, if you talk to a NP, homeopath, NAET & Bioset practitioner, which i have dealt with in the past couple of years, their answers are very different to your DAN. Just my two cents.

 

Ever consider a second opinion?

 

Pat

[guy123]

I was given Flonase by my allergy doctor around the time I was getting allergy shots around the time I developed my blinking tic.

 

Hmm...

[Betty04]

Betty,

 

I have not dealt with a DAN dr., so i am not sure what is their philiosphy of healing. But i can tell you, if you talk to a NP, homeopath, NAET & Bioset practitioner, which i have dealt with in the past couple of years, their answers are very different to your DAN. Just my two cents.

 

Ever consider a second opinion?

 

Pat

 

I did not realize there would be a difference. I would certainly consider another opinion - we are way beyond 2nd opinion

I am moving to Northern CA and posted a couple weeks ago asking for referrals... I was given names of psychiatrists and DAN docs but none in the area you mentioned. Maybe I will repost asking for these alternatives? Thanks for your help, Betty

[EAMom]

Betty, if it makes you feel any better, several people who post on this website (Worried Dad, Diana, Indigo are the ones I can think of off the top of my head) have had oral steroids at pretty high doses (for various reasons, usually steroid burst test pre IVIG) and they have found that steroids help the PANDAS symptoms.

 

Steroids are anti-inflammatory so it makes sense they would dampen the inappropriate immune response of PANDAS kids. Oral steroids just have lots of nasty side effects so you don't want to use them long term to actually treat PANDAS.

 

Nasal steroids don't have the side effects of oral steroids since the work locally. I also wouldn't expect them to help PANDAS symptoms, although they will very likely have the benefit your ENT intends.

[Chemar]

I have posted before on the danger of oral steroids for anyone with Tourette Syndrome

 

where I agree that a nasal spray will not have the same effect as an oral or injected dose

 

Just do be careful IF your child has TS as any steroid with systemic effect can have a very negative reaction

[EAMom]

Yes, just to clarify, the kids how had improved symptoms on oral steroids had PANDAS, not tourettes.