Nasonex?

[beeskneesmommy]

My DS5 had a dip yesterday - he has been doing very well for weeks and it was the day of his big birthday party, but he definitely awakened with some cognitive fog and incresed OCD and tics. Hard to see, after such a long run of being almost asymptomatic, and I hope he will snap out of it by tomorrow. He has forever had a stuffy, irritated nose - I can only surmise that it is allergies, but it really affects him. Dr. B has prescribed Nasonex, but we haven't started it d/t him doing so well - just did not want to add anything else to the mix yet. I am wondering - since it is a mild steroid, has anyone experienced decreased PANDAS symptoms when using it? My son is very, very sensitive to meds (cannot even take Benedryl or Zyrtec) but I am wondering if Nasonex could work in his favor? Thanks, Kath

[Familyof5]

my kids were never diagnosed with Pandas, but Nasonex had a bad effect on them: increase in their tics the most prevalent.

[kimballot]

My son has chronic sinusitis and allergic rhinitis. we use rhinacort (similar medication to nasonex) and it really helps him because it decreases the sinusitis. I don't think the fact that it is a steroid has much of an affect on his PANDAS symptoms, but the decrease in sinus symptoms is huge.

[beeskneesmommy]

Thnk you. As I mentioned, he took a dip yesterday - was very tired and anticipatin his 5th (big) birthday party. He awakened asymptomatic and back to normal today, but this nasal congestion is awful! It's been going on off and on for years, really, but has been really bad over the past year. Allergy tests are mostly inconclusive so if I can get him to try the Nasonex, maybe it will help relive these symptoms.

 

Familyof5, whne your kiddo had increased tics d/t the Nasonex, was it immediately, over a few days or over a long period of time?

 

Thanks, Kath

[kimballot]

Thnk you. As I mentioned, he took a dip yesterday - was very tired and anticipatin his 5th (big) birthday party. He awakened asymptomatic and back to normal today, but this nasal congestion is awful! It's been going on off and on for years, really, but has been really bad over the past year. Allergy tests are mostly inconclusive so if I can get him to try the Nasonex, maybe it will help relive these symptoms.

 

Familyof5, whne your kiddo had increased tics d/t the Nasonex, was it immediately, over a few days or over a long period of time?

 

Thanks, Kath

 

I just want to check to make sure your son has had a thorough sinus exam. Chronic sinusitis is a frequent trigger of PANDAS and it can be hidden. It has been my son's main trigger his entire life.

[beeskneesmommy]

Well, no, because pediatricians have been blowing us off forever over this. If you mean looking up his nose and saying that it looks slightly irritated therefor must be allergies, yes. Dr. B is aware of it and my impression is that he feels that the masive doses of abx that my son is on will take care of any bacteria that is in there...it could be allergies, but I have done the dust mite covers, etc. He may be allergic to the pets, but they are now kept downstairs and his biggest irritation is upstairs, at night - doesn't seem nearly as bad when he is downstairs playing with the dog! I have been trying to get to the bottom of it forever, because I believe that it has been a big obstacle in his recovery from PANDAS. What more can I do? I am going to try the Nasonex and hope that it adresses things. I am worried about causing an exacarbation, so I will watch him carefully and d/c if tics or other bx start. In addition, he has elevated Myco (old) that never went down from walking pneumonia last Oct. 2010. The abx are targeting this (among others), but could this "old" Myco be causing it? The congestion started in ernest right after his tonsillecomy last Aug. 2010, and never really left for more than a couple of weeks in the winter. Dr. B thinks that maybe he got a sinus infection at the surgery...

[philamom]

Chronic Sinusitis is also a trigger for my daughter. Unfortunately, my daughter reacts to ALL the medications that are prescribed, even the prescription nasal sprays. It's been like this for years. The only thing we can use is the saline nasal sprays.

[beeskneesmommy]

Phila: yes, i canot give my son benedryl, Zyrtec, any of it! There is a cold med from Whole Foods called Umka that he can tolerate - it just helps break up the mucus. However, i generally only can use "Little Noses" saline spray with him. I just filled the Nasonex in hopes that he will tolerate it well, as his PANDAS symptoms have subsided at this time, but I will watch him like a hawk! We are alos going to the beach for a week on Sun., so maybe I will just wait and see what he looks like there - different vegetation, no pets, etc.

 

Can Chronic Sinusitis survive through the constant barrage of Augmentin 2 x D and Axith 1 x D?

[philamom]

IVIG took care of my daughter's chronic sinus issues. She really hasn't had any issues since, except the usual stuffiness with a cold. Her last "true" sinus infection that needed to be treated was in January 2010. Prior, she had numerous sinus infections since 2003. I also have evidence of this with CAT scans (before & after).

[beeskneesmommy]

At this point, we are not planning IVig as the abx seem to be doing the trick. Did you get CAT scans for the sinuses only or were they also for the PANDAS? I just do not know what else I can do - he is sleeping poorly at night but I cannot find the allergens!

[philamom]

At this point, we are not planning IVig as the abx seem to be doing the trick. Did you get CAT scans for the sinuses only or were they also for the PANDAS? I just do not know what else I can do - he is sleeping poorly at night but I cannot find the allergens!

The cat scans were ordered for the sinuses only. At one point, my daughter's ENT suggested sinus surgery, but said it might not be in her best interest if we could not pinpoint the underlying cause of inflammation.

 

Xlear saline nasal spray is what I use. They also have a kids version. It contains Xylitol, which I read may be helpful with any strep in the sinuses. Thanks for mentioning the Umka - I'll remember that next time dd has a cold.

[Familyof5]

Thnk you. As I mentioned, he took a dip yesterday - was very tired and anticipatin his 5th (big) birthday party. He awakened asymptomatic and back to normal today, but this nasal congestion is awful! It's been going on off and on for years, really, but has been really bad over the past year. Allergy tests are mostly inconclusive so if I can get him to try the Nasonex, maybe it will help relive these symptoms.

 

Familyof5, whne your kiddo had increased tics d/t the Nasonex, was it immediately, over a few days or over a long period of time?

 

Thanks, Kath

I think by the third day of taking it I realized that her blinking tic was off the charts. Always knew she had a blinking tic, so didn't associate the Nasonex with her flare until her flare didn't go away. I kept her on Nasonex for quite a while. I even kept telling the docs I thought her tics increased when I started giving her Nasonex. They all denied it could be the cause so I just bought into their line of thinking. Now I know better. My DD12 has had chronic sinusitus since she was probably six. Year after year, she was treated for two or three sinus infections and that was only when I actually thought it was bad enough to bring her to the doctor. We moved out of our "moldy" house two years ago. She hasn't had a sinus infection since then. Our mold doc says that using steroids on a "biotoxic" patient is like pouring gasoline on a fire. It sets the immune system dramatically off course. It is so nice to see my DD12 go through the fall, winter, and spring without tissues!

[LNN]

chronic sinus issues, problems greater when in one part of the house...have you explored mold or MARCONS (multiple antibiotic resistant coagulase negative staph)? http://ezinearticles.com/?Why-MARCONS-Prevent-You-From-Killing-Lyme-Bacteria-and-How-You-Can-Stop-Them&id=3662317 Not advocating the treatment in this article - it was just the first I came across to give you an overview. You can find more at www.survivingmold.com

 

It's felt by some that those with mold sensitivities have a far harder time fighting illnesses and won't/can't get better until the mold issues and resulting inflammation are addressed. Something to look into maybe.

[beeskneesmommy]

Thank you. He spends a lot of time in our bedroom and out master bathroom always seems moldy to my standards (we used to live in Santa Fe NM and then Denver, prior to NC, so we are not inclined to moist climates). I have been terribly short on time to tackle big cleaning, but I am slowly going to do the fine tooth comb thru the house and also get air purifiers for each room. I have been concerned about mold and when I lived in Seattle for 2 years in the mid '90's, I, myself had pretty strong allergies to mold. I am not really sure why neither the blood test or the scratch test did not include mold, but perhaps that is where we need to go next...

[LNN]

If your doctor is willing, you can test for C4a immune complexes to indicate possible immune response to mold. Google "C4a mold" and you'll hit on some research articles. Be careful cleaning. Bleach is not a good mold killer - it will grow back, possibly resistant to bleach in the future. Peroxide is better. You can google other ideas as well. I think I read vinegar - can't recall. If you remediate mold, you need to seal off the area you're cleaning. Mold spores can get airborne and "re-infect" new areas of the house. You may want to post on the lyme forum about air cleaners - some are better than others. From all you describe, this seems like something worth looking into. Surviving Mold and Mold Warriors by Dr Shoemaker may be helpful. You can find lots of research on mold illnesses. What's not discussed as often is how mold can also screw up the immune system and make it harder to fight other stuff. You're never going to find a research article on mold+Pandas but if you read up on mold, or mold+lyme, you may find yourself with all sorts of light bulbs going off. If you go down this path, there are some other forum families (esp on the lyme forum) who have a lot of knowledge (I'm not one of them). Good luck!