Chronic sinusitus as underlying infection

[PANDASmcnuggetsw/fry/coke]

My dd has had chronic phlegm or sinusitus since her excerabation in May. The abx amoxicillan and augmentim help lessen it but not KILL it. She just went off augmentim to clear her system for the Igenex lyme test and the phelgm/sinusitus is REALLY coming back strong. Remember I posted Dr K said she will have this as long as she has PANDAS.... My question is for those who have dealt with chronic sinusitus, which abx have worked for you and at what dosgae? Is there any other treatment for sinusitus?

 

We are also waiting on second myco test to see if that number has gone down.

 

Thank you~ you are all so helpful!

PANDAS McNuggets w/fry/coke

[peglem]

Zithro at full treatment dose worked for us.

[philamom]

My dd has had chronic phlegm or sinusitus since her excerabation in May. The abx amoxicillan and augmentim help lessen it but not KILL it. She just went off augmentim to clear her system for the Igenex lyme test and the phelgm/sinusitus is REALLY coming back strong. Remember I posted Dr K said she will have this as long as she has PANDAS.... My question is for those who have dealt with chronic sinusitus, which abx have worked for you and at what dosgae? Is there any other treatment for sinusitus?

 

We are also waiting on second myco test to see if that number has gone down.

 

Thank you~ you are all so helpful!

PANDAS McNuggets w/fry/coke

My dd9 had chronic sinus infections since age two. At age seven, a cat scan showed PAN sinusitis (all cavity's blocked). She was placed on Augmentin and Prednisolone for it. When we saw Dr. B in April, he said it most likey turned into chronic sinusitis because it wasn't treated aggresive enough when she was younger. Due to her failing pnneumo titers, H. influenzae and having chronic sinusitis, we were able to get ivig covered. After the second treatment, we did another cat scan and the sinusitis cleared up (She had 3 scans before that diagnosed chronic sinusitis).

[PANDASmcnuggetsw/fry/coke]

After her lyme test next Monday, I will have in hand her filled rx for azith. It is 250 mg, 2 x for the first day, then 1 x for 4 days and repeats 2 more cycles. So it's 5 days on, 5 days off for a total of three cycles. (15 days and 18 pills total)

 

Does this sound like enough for her???? She is 115 pounds and 5'5'', 12 years old. It seems puny.

 

Thanks for your help!

PANDAS McNuggets w/fry/coke

[Worried_Dad]

Wow - that fits our situation, too. From Day 1 of his PANDAS journey, our son always complained of congestion and drainage. An early MRI showed sinus infection for him. I've had chronic sinus problems for 4+ years now and am finally pursuing it medically since my ASO titer keeps going up (now 443). It was 303 back in March when 1st tested, and all I could get from the doc was 1 month of low-dose zith (250 mg daily). Seemed to help, but then the sinus congestion rebounded. Recently finished a month of treatment-dose clindamycin (whole family did this at same time to try to clear us all, since we all have elevated ASO). Again, it seemed to help considerably while I was on the abx... but now the sinus congestion has rebounded worse than ever. Sigh....

 

Saw the allergist last week and he agreed to order a CT scan of my sinuses, which I did this morning. He and I were discussing family health history, etc., and I reminded him of our son's PANDAS diagnosis. He immediately perks up: "Your son has PANDAS? What doctor is he seeing locally?" Turns out that the allergist's own nephew was just diagnosed with... PANDAS!

 

Small world, huh? And this is in a small town in SW Michigan. Maybe PANDAS isn't all that rare after all, eh?

 

Anyway, I know there were a number of threads on the forum in the past where parents repeatedly mentioned sinus infections / sinusitis accompanying their children's PANDAS flares. If anybody out there knows of a "magic bullet" for eradicating strep from sinuses, please shoot it into a post!

 

 

My dd has had chronic phlegm or sinusitus since her excerabation in May. The abx amoxicillan and augmentim help lessen it but not KILL it. She just went off augmentim to clear her system for the Igenex lyme test and the phelgm/sinusitus is REALLY coming back strong. Remember I posted Dr K said she will have this as long as she has PANDAS.... My question is for those who have dealt with chronic sinusitus, which abx have worked for you and at what dosgae? Is there any other treatment for sinusitus?

 

We are also waiting on second myco test to see if that number has gone down.

 

Thank you~ you are all so helpful!

PANDAS McNuggets w/fry/coke

[peglem]

After her lyme test next Monday, I will have in hand her filled rx for azith. It is 250 mg, 2 x for the first day, then 1 x for 4 days and repeats 2 more cycles. So it's 5 days on, 5 days off for a total of three cycles. (15 days and 18 pills total)

 

Does this sound like enough for her???? She is 115 pounds and 5'5'', 12 years old. It seems puny.

 

Thanks for your help!

PANDAS McNuggets w/fry/coke

Last year, before our Cunningham test, the pediatrician had my daughter on a 5on/5off regimen...strep came back on the off days. I think you'd be better off starting with the loading dose, then going every other day...maintain tissue levels. I know my pediatrician wanted to give time for the zith to get completely out of her system to make sure her liver stays healthy. He has since checked with a specialist who says that 500mg/day is a safe dose- but we do check liver function every 6 months anyway. We did a 3 day loading dose- then every other day-500mg for my 115 lb. child.

[Fixit]

Can i ask..have you had your tonsils an atnoids out?

[matis_mom]

Small world, huh? And this is in a small town in SW Michigan. Maybe PANDAS isn't all that rare after all, eh?

Tell me about it! I know of four cases in our small town, and that's just among the homeschooling crowd!!!

[EAMom]

Has anyone tried a netipot? http://www.webmd.com/allergies/sinus-pain-pressure-9/neti-pots

 

I would also vote for a good doses of Azith. Our 62 pounder (not-sinusitis, but just giving an example of dosing) has been on 250mg/day Aztih. for over 2 years (started at this dose at 42 pounds). There was 1 mo. during a flare where we upped to 500mg/day. So, I wouldn't be nervous at all about giving a bigger kid (115 pounds) 500mg/day for at least a month.

 

Also, try to stay away from anti-histamines. They can be bad if you have a sinus infection, since it dries them out too much.

Edited August 18, 2010 by EAMom

[philamom]

Has anyone tried a netipot? http://www.webmd.com/allergies/sinus-pain-pressure-9/neti-pots

 

I would also vote for a good doses of Azith. Our 62 pounder (not-sinusitis, but just giving an example of dosing) has been on 250mg/day Aztih. for over 2 years (started at this dose at 42 pounds). There was 1 mo. during a flare where we upped to 500mg/day. So, I wouldn't be nervous at all about giving a bigger kid (115 pounds) 500mg/day for at least a month.

 

Also, try to stay away from anti-histamines. They can be bad if you have a sinus infection, since it dries them out too much.

I love the netipot but my daughter will have no parts of it. We do use a saline spray and especially like "Xlear" Nasal Spray with Xylitol.

[EAMom]

I don't blame her. I think it's good in theory but would using it feel like you were drowning? But lots of people do use it.

[kimballot]

We are the sinusitis family. My son has had 3 sinus surgeries and has had chronic sinusitis since birth.

 

As far as antibiotics, we have had luck with augmentin, zithromax, and ominicef. We have also done clidymycin and flagyl in the past when things were not moving forward with the retular ABX.

 

Also, many sinus infections are actually fungal infections (google Sherris for articles). These are actually made worse by antibiotics, so it is important to use an antifungal, sucha s diflucan, if you suspect a fungal sinus infection.

 

Keeping sinuses open during allergy flares or colds/viruses is the key to preventing sinusitis. My son uses a netipot when he is congested. We also use mucinex to thin the mucus, an over the counter decongestant, and zyrtec when he flares up. We also use rhinocort aqua steroid nasal spray.

 

This year things were really bad due to an infected cyst (mucocele). Before we knew about the mucocele we did a steroid burst and that helped quite a bit. We have done them in the past, as well, for stubborn sinusitis.

 

Finding a good ENT who is open to PANDAS is key. My ENT really understands that my son's behaviors change when he has a sinus infection, and he has respected this since my son was a toddler (before we ever had the namd PANDAS for it).

 

Best wishes and please let me know if I can help you anymore!

[PANDASmcnuggetsw/fry/coke]

Can i ask..have you had your tonsils an atnoids out?

 

Kimballot~ may I ask what type of steroid burst helped? Was it 5 days or something more?

 

Worried Dad! Yes it IS a small world, but glad to know you are there for support in beautiful Michigan!

 

Fixit~I'm not sure if you were asking me this, but no she has not.

 

And thanks everybody for all of your answers. I'm going to ask for a higher dosage. :-)

 

PANDAS McNuggets w/fry/coke

[kimballot]

Has anyone tried a netipot? http://www.webmd.com/allergies/sinus-pain-pressure-9/neti-pots

 

I would also vote for a good doses of Azith. Our 62 pounder (not-sinusitis, but just giving an example of dosing) has been on 250mg/day Aztih. for over 2 years (started at this dose at 42 pounds). There was 1 mo. during a flare where we upped to 500mg/day. So, I wouldn't be nervous at all about giving a bigger kid (115 pounds) 500mg/day for at least a month.

 

Also, try to stay away from anti-histamines. They can be bad if you have a sinus infection, since it dries them out too much.

I love the netipot but my daughter will have no parts of it. We do use a saline spray and especially like "Xlear" Nasal Spray with Xylitol.

 

When my son was younger we used it in the shower. He was already all wet, so he it did not seem "gross" to have this water coming out... plus he did not have to climb up on a stool and do gymnastics to get his head down enough for the stuff to flow out.

[kimballot]

Steroid burst at first was a 5 day taper course of prednisone.

 

That helped somwhat and has really helped in the past.

 

This year, it was clear he needed more, so Dr.B then added a 17 day taper for a total of 21 days. This did help, but did not last because he needed surgery to remove the infected cyst.