Paranasal Sinus Disease?**Update***

[tw1nsmom]

Does anyone have any personal experience with this? All the stuff I've been looking up on the internet is extremely scary.

DS had an MRI last tuesday. Yesterday we got a letter from the neurologist saying that the brain MRI was normal (we were looking for abnormalities that may have been causing DS's learning disability), but that he had Paranasal Sinus Disease and fluid on the left Mastoid. It said that we should contact our primary care physician as soon as possible and get a refferal to an ENT specialist. That's all it said. DS hasn't had a cold for a couple weeks and hasn't been complaining of head pain. I even asked him if anything hurt and he said no.

I'm, of course, calling the doctor first thing in the morning, but I was hoping to get some info before then. The sites I've been on talk about killer fungal infections/meningitus, and tumors..both benign and malignant. No matter what, we're going to the Dr., but if somone with some experience with this could tell me that it isn't always that serious, I might be able to sleep better tonight.

 

[megan4777]

I don't have any experience with this but I'm sorry your DS is going through this. I hope that it's nothing serious.

I looked up my DH's sleep apnea surgery online and everything I read was horrible. His dr's said there's nothing to worry about and the things online are often more scary than in real life.
Good luck to you!!

 

[Bella the Ball 360]

I wish I could help. Did you look on Web MD? Also, what are his symptoms ? I am a sped teacher and frankly I have never heard of this one. I also had two kids who lived at the ENT and still am not familiar.

 

[tw1nsmom]

I wish I could help. Did you look on Web MD? Also, what are his symptoms ? I am a sped teacher and frankly I have never heard of this one. I also had two kids who lived at the ENT and still am not familiar.

The thing is, he doesn't appear to have any symptoms. He seems just fine and isn't congested, nor does he have any discharge, headache, or fever. The MRI was looking for abnormalities in his brain's corpus collosum, white matter, or right brain lesions. He was recently officially diagnosed with Nonverbal Learning Disability and the neurospychologist was concerned that his scores on visual-spatial and sensory-motor tests were so low, that there may have been a physical reason for his disability. They didn't find anything in the brain, but happened to find this.

My concern is, how bad does this disease have to be before it becomes visible on an MRI? They also didn't say if they saw inflammation or if they saw polyps/tumors. I hate when you get something in the mail on a Saturday afternoon and can't get any answers until monday.

 

[tw1nsmom]

Bump, for more input.

 

[Bella the Ball 360]

Good luck. I wish I could give you some info. I can say that NvLd is difficult but not impossible to deal with. Sometimes they cannot find an organic reason for it. I was just a little baffled from your first post I thought you were saying that the paranasal problem was causing the ld. I feel for you. I cannot say don't worry either only because telling a mother who is awaiting medical results not to worry is telling the ocean not to flow. All I can say is I will keep your child in my thoughts and my fingers crossed. Please let us know what you find out.

 

[tw1nsmom]

Thank you so much for your thoughts and support. I'll try to update this thread tomorrow if I get any answers from the Dr.

 

[tw1nsmom]

**Update**

Well, I have a little bit more information. Yesterday was so frustrating. The neurologist who ordered the test is out of town for a week and nobody in her office would read the MRI report to give me more details.

I called our primary care and they didn't want to see the report, just put DS on antibiotics and get a new MRI in three weeks.

I called an ENT specialist that the nurses at the hospital recommended, but they couldn't get DS in until Feb 15th, and they couldn't read the report until DS is officially their patient.

In the end, DH had to go to the hospital and get a copy of the report and sign out the MRI films himself. We read the report and called a friends of my mom's who has been an oncology nurse and presently is a home visiting nurse that administers IV's in people's homes for things like AIDS treatment and really bad infections.

She said that the report said that DS has a really bad infection in most of his sinus cavities and it has spread to his left ear. The biggest area of concern is that the Sphenoid sinus is heavily diseased. That's the sinus that is further back in the head, underneath the brain. She said that even with all the conjestion, the MRI would have picked up on any tumors, so that's one piece of good news. The bad news is that Ds's infection is very serious and will be probably be difficult to get rid of. She said that many antibiotics can't penetrate the sinus's. We also don't know how long he's had this since he shows no symptoms. Her theory (and the nurse at the ENT's office agrees), is that DS probably has had this for a long time and has adjusted to the pain. We don't know if this is effecting his learning disability in any way.

For now we are giving him the Zithromax that the primary care prescribed. He's supposed to be on it for 21 days (the Dr. didn't even want to see him). On Feb. 15th we'll go to the ENT Dr. and let him take over care and order a CAT scan to see if the antibiotics are working at all. If we can't get this under control fairly quickly, my mom's friend recommends that we get a referral to an infectious disease Dr. She said that primary care and ENT's will often treat these kind of infections conservatively and an infectious disease Dr. will pursue quicker and more aggressive treatments. She said that these kinds of infections can be very dangerous if not properly treated.

I'll try to update as more info. comes in.

 

[The Mystery Machine]

I just want to say I am stunned, although I know that you have to be your child's advocate. (been there)

Sounds like you are on your way to your answers. I wish you luck and success for your son.