Sinus Mucocele Update

[kimballot]

Some of you may remember my post from a few weeks ago when I talked about my 13 year old son who had been having PANDAS symptoms most of the school year (mainly after the flu), and the local docs not wanting to look for infections, assuming it was due to depression. Dr. T ordered bloodwork that revealed immune problems and a strep infection, and Dr. B ordered a sinus CT scan figuring the infection was in the sinus due to my son's lengthy history of sinusitis. We then found out that my son had a mucocele in his ethmoid sinus that had been there for a very long time and had remolded and decalcified the bone between the sinus and the eye socket, so that it was actually resting in the eye socket. ( http://www.latitudes.org/forums/index.php?...pic=8291&hl )

 

Well -

 

I've calmed down quite a bit since that last post - though it did take a while for me to get over the idea that this thing was growing in my son's head and pressing against his eye for at least a year, possibly two, while we yelled at him to pay attention in school and get his work done...

 

We went back to Connecticut to see Dr. B (BTW -I owe a HUGE thanks to everyone who posted when I asked about immune deficiency - especially nevergiveup - as that is what led us to Dr. B - see - http://www.latitudes.org/forums/index.php?...pic=7424&hl )

 

Dr. B was as surprised as anyone to see this finding. He was SO good with us - really spent time helping us to sort out potential scenarios that could have led to this and potential surgery options. Helped us decide what to look for in a surgeon and how aggressive to be, then told us that we would put everything on hold until this was removed.

 

We came back home and contacted the ENT that had done my son's previous 2 surgeries. He agreed that this has likely been there for years, and said that he could easily drain it and widen the opening to the sinus. He consulted with a pediatric radiologist who specializes in head and neck CT and also with an ENT/plastic surgeon who does adult sinus reconstruction. They've all agreed that it would be best to keep it simple and drain and widen the sinus.

 

We also consulted with a neuro opthamologist who found that, while my son's vision had changed slightly in his right eye, it was not a severe change and there was no nerve involvement at this point... just muscle pressure.

 

All in all, I am MUCH calmer than I was 2 weeks ago. The pediatric ENT can get my son in for surgery within the next 2 weeks, so that would be good... I am hoping to have him out of surgery and healed by the 4th of July so he can at least enjoy some summer after this miserable school year.

 

I need to talk with Dr. B now about post-surgical meds. He will stay on zith and diflucan until surgery.

 

I know we often say that we HATE PANDAS... but I have to tell you - PANDAS saved my son's eye. If it were not for the PANDAS symptoms, this forum, and the Dr. B, my son would be on SSRIs (probably increasing in dosage as his infection increased) while he failed in school and had more and more damage to his eye as the bone continued to erode and pressure continued to mount.

 

We were truly blessed to catch this in time. Let us all remember that our kids are fighting real infections. Please - if you are not seeing a doctor that specializes in PANDAS.... please try to get to one.

[EAMom]

I know we often say that we HATE PANDAS... but I have to tell you - PANDAS saved my son's eye. If it were not for the PANDAS symptoms, this forum, and the Dr. B, my son would be on SSRIs (probably increasing in dosage as his infection increased) while he failed in school and had more and more damage to his eye as the bone continued to erode and pressure continued to mount.

 

You are an awesome Mom for figuring this all out...and your son is another EXCELLENT example of "why PANDAS should *NOT* be treated just like any other case of OCD or tics"!

[sf_mom]

Wow, congratulations!!!!! AND, so pleased for your son/family that you found the potential source... I look forward to positive updates of recovery.

Edited June 6, 2010 by SF Mom

[justinekno]

I think you have to give yourself a huge amount of credit here for perservering and not giving up. I'm so glad you are making such great progress. I wish your son the best with his upcoming surgery.

 

I know we often say that we HATE PANDAS... but I have to tell you - PANDAS saved my son's eye. If it were not for the PANDAS symptoms, this forum, and the Dr. B, my son would be on SSRIs (probably increasing in dosage as his infection increased) while he failed in school and had more and more damage to his eye as the bone continued to erode and pressure continued to mount.

[Mary M]

Amazing and frightening really...that the mom and family work so hard to guide the doctors toward understanding the root cause rather than just treating symptoms. We can all relate to the herculian effort you have made on your child's behalf. Thank you for sharing your story...it will continue to motivate me. May your son's journey to recovery this summer be quick and as painless as possible.

Edited June 6, 2010 by Mary M

[colleenrn]

I am so glad you figured out what was wrong with him!! Mommy Power!!

Colleen

[kim]

So happy to read your update. Let us know when he has the surgery, prayers are always available from here.

 

I'm so glad that you see a good summer ahead, where you will get a little R&R too.