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Third sinus infection requiring steroids


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DS, has had his third sinus infection requiring a steroid taper since starting the antibiotics for primary immunodeficiency. :huh: He has had horrible sinus problems since birth, thirteen long years ago. I asked his ped about seeing the ENT and he got us in the very next day!! She looked up his nose and said deviated septum, chronis sinusitis and hypertrophy of nasal turbinates. She ordered a CT scan of his sinuses next Wed!!

 

I have always known that there was something wrong with his nose/sinuses, so why did I wait so long??? I guess I bought into the allergy theory as the only cause of his issues. His voice is off as well, kind of wet sounding, if there is such a thing. Just not quite right.

 

Here's hoping we get some answers.

 

Cobbie

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DS6 had severe sinus issues since birth as well. Peds kept saying 'acid reflux' NOT! all of his toddlerhood, he would scream for a wet washcloth throughout the day because his nose was so sore an irritable. When we began w/Dr. B last year, he recognized this as a prob. and gave us Nasonex. It changed our lives. I am not saying that it is that simple for you, but recognizing that sinuses are a big issue, as both Dr. B and Dr. K state (and likely some others as well). SO glad that you found some support with this and that you have as dramatic a change as we did when we started treating the sinusitis!

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DD had all her sinuses completely blocked when she was 14--long course of abx and steroids did nothing. She had surgery to remove her adenoids (kicking self for not having tonsils done at same time) and do turbinate reduction. CAT scan two months later to show great success of surgery revealed all sinuses completely blocked again. Another few months of abx and steroids with no improvement. Finally she had sinuplasty. They do it with a balloon now and the surgery and recovery are quite easy. She's had a couple of sinus infections since then, but nothing abx couldn't clear up. Highly recommend balloon sinuplasty--don't hesitate if it's recommended.

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My ds had T&A in Feb and turbinectomy & drainage of sinus. Last month, sinus CT showed all clogged again! Did sinus surgery, anthroscopy (widening openings) and ethmoidectomy, F/U visit showed clean as a whistle! He is on veramyst spray and zyrtec for severe allergies but now at least his nose can drain properly. Quick recovery (a day), highly recommended!

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DS15 started on antibiotics at 4 months of age for difficulty breathing / sinus infection (they only have one tiny sinus at that age!)... Could not take him off or even taper down to prophylactic ABX without infection re-occurring. Had adenoidectomy at 18 months of age, pneumovax at 2 years, pneumovax at 4 years, allergy shots starting at 4 years, major sinus surgery at 5 years, tonsilectomy and surgical sinus irrigation at 7 years (we discovered he was harboring bacteria in his tonsils), and THEN he was able to come off high dose ABX for the first time in his life without the sinus problems coming back immediately. PANS neuropsych symptoms started around 18 months and re occured whenever he cam off high dose ABX until tonsils were removed.

 

After tonsillectomy he continued to have chronic sinusitis (inflammation / discomfort), but only needed ABX 1-2 times per year. PANS symptoms were at a low level of ADHD, with mild OCD and occasional tics, but he was able to function in school, sports, and activities. PANS symptom flares with ANY illness.

 

At age 12 his PANS symptoms (especially ADHD symptoms) began ramping up. This continued through age 13 with local docs saying it was depression. We finally consulted with Dr. T and went to Dr. B at age 14 and Dr. B found a huge mucocele (cyst) in DS ethmoid sinus. It had been there for 1-2 years and had eroded the bone between his sinus and eye. No one else thought to look because DS had a life-long history of sinus discomfort and the headaches were attributed to depression. Dr. B did major work up and we found he had CVID and few S.Pneumonaie antibodies. Cyst was removed - but next Fall sinusitis returned along with PANS symptoms.

 

We Finally started IVIG 1 1/2 years ago and we follow the CVID schedule and do it every 6 weeks. It was a major decision to go the IVIG route, but we had no choice. DS had major PANDAS exacerbation following first IVIG, and recovered slowly.

 

DS has not had a sinus infection nor any sinus irritation lasting more than 3 days since we started IVIG. He is on ABX and that seems to hold him. PANS symptoms are absolutely the lowest they have been ever. We see a mild return as it gets close to IVIG time, but it is manageable and he can wait it out until IVIG. His brain is not being assaulted on a regular basis. He is starting to take control of his life.

 

Sorry for the long post - it is a long story. I feel for all the Moms out there with kids with chronic sinusitis. It seems like such a simple thing, but it is SO debilitating!

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My dd 11 also had monthly sinus infections starting at 18 months and was constantly on antibiotics with infection re-occuring when off. She was on many allergy medicines that only made things worse. She had 3 CAT scans through the years that showed chronic sinusitis. One of them showed pansinusitis (all cavities blocked). All the ENT's we've seen said she would probably grow out of it. At age 5 or 6 surgery was recommended but the ENT said the chronic sinusitis would possibly return if we didn't know what the underlying cause was.

 

We eventually moved forward to hd IVIG. After the third IVIG we ran another CAT scan and there were no more signs of sinusitis.

 

edit to say it was 10 months between 1st & 2nd IVIG, and another 3 months before 3rd.

Edited by philamom
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DS15 started on antibiotics at 4 months of age for difficulty breathing / sinus infection (they only have one tiny sinus at that age!)... Could not take him off or even taper down to prophylactic ABX without infection re-occurring. Had adenoidectomy at 18 months of age, pneumovax at 2 years, pneumovax at 4 years, allergy shots starting at 4 years, major sinus surgery at 5 years, tonsilectomy and surgical sinus irrigation at 7 years (we discovered he was harboring bacteria in his tonsils), and THEN he was able to come off high dose ABX for the first time in his life without the sinus problems coming back immediately. PANS neuropsych symptoms started around 18 months and re occured whenever he cam off high dose ABX until tonsils were removed.

 

After tonsillectomy he continued to have chronic sinusitis (inflammation / discomfort), but only needed ABX 1-2 times per year. PANS symptoms were at a low level of ADHD, with mild OCD and occasional tics, but he was able to function in school, sports, and activities. PANS symptom flares with ANY illness.

 

At age 12 his PANS symptoms (especially ADHD symptoms) began ramping up. This continued through age 13 with local docs saying it was depression. We finally consulted with Dr. T and went to Dr. B at age 14 and Dr. B found a huge mucocele (cyst) in DS ethmoid sinus. It had been there for 1-2 years and had eroded the bone between his sinus and eye. No one else thought to look because DS had a life-long history of sinus discomfort and the headaches were attributed to depression. Dr. B did major work up and we found he had CVID and few S.Pneumonaie antibodies. Cyst was removed - but next Fall sinusitis returned along with PANS symptoms.

 

We Finally started IVIG 1 1/2 years ago and we follow the CVID schedule and do it every 6 weeks. It was a major decision to go the IVIG route, but we had no choice. DS had major PANDAS exacerbation following first IVIG, and recovered slowly.

 

DS has not had a sinus infection nor any sinus irritation lasting more than 3 days since we started IVIG. He is on ABX and that seems to hold him. PANS symptoms are absolutely the lowest they have been ever. We see a mild return as it gets close to IVIG time, but it is manageable and he can wait it out until IVIG. His brain is not being assaulted on a regular basis. He is starting to take control of his life.

 

Sorry for the long post - it is a long story. I feel for all the Moms out there with kids with chronic sinusitis. It seems like such a simple thing, but it is SO debilitating!

 

We are doing HD IVIg for DS. He is getting it every eight weeks from Dr. B. This is his first bad sinus infection since starting IVIg. (He has had two) I still want to see if there is a blockage and can it be cleaned out. Also, these doctors use balloon sinuplasty when it is appropriate, so the healing is much faster. DS is barely able to make it through school day and we have no sports or social activities because he is too fatigued. Hoping this will help clear up (pun intended) the situation.

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We are doing HD IVIg for DS. He is getting it every eight weeks from Dr. B. This is his first bad sinus infection since starting IVIg. (He has had two) I still want to see if there is a blockage and can it be cleaned out. Also, these doctors use balloon sinuplasty when it is appropriate, so the healing is much faster. DS is barely able to make it through school day and we have no sports or social activities because he is too fatigued. Hoping this will help clear up (pun intended) the situation.

 

My son's IVIG was started when there was inflammation but no blockage as he had undergone surgery a few months prior, and ENT had done scope to check for blockage. Sounds like ENT is on the right track to check for blocakge. I am not familiar with balloon sinusplasy, but would say that anything to reduce trauma to the sinuses when cleaning them out would be worth it! My son's mucocele was a result of the sinus surgery (apparently you only see mucoceles in kids who have had sinus surgery).

 

Are you doing a nettipot or nasal rinse? we have found that this really helps to keep things clean and flowing. We used to use the regular nettipot, but switched to the nasal cleanse irrigation bottle with the pre-mixed packets (http://www.amazon.com/s/?ie=UTF8&keywords=nasal+rinse+bottle&tag=googhydr-20&index=aps&hvadid=7933135185&hvpos=1t3&hvexid=&hvnetw=g&hvrand=21139720811196338185&hvpone=&hvptwo=&hvqmt=b&ref=pd_sl_3hqh33ypyx_B ). I used distillled water for this as there have been reports of infection from tap water (I know that is rare- but why risk it?) Truthfully, my son has only done this 1-2 times over the past year as his sinuses are really not inflamed anymore.

 

Also - ask Dr. B about checking trough levels. My son was having a tough time when we did 1.5g/kg every 8 weeks. We checked trough levels just before the 8 week IVIG and antibody levels were even lower than before we began IVIG. Dr.B upped the IVIG to 2g/kg and I increased the frequency to closer to be closer to 6 weeks. Both of these really helped with symptom relief between IVIG.

 

I would NOT recommend this regimen for anyone who does not need it. I recognize that this is ALOT of IVIG going into my son... but he really is a complex case.

Edited by kimballot
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