MamaOnAMission Posted February 12, 2013 Report Share Posted February 12, 2013 I went trying to see if he could see any sinus trouble, because her MRI at age 5 showed sinus infection. He looked in nose and said he saw nothing. I asked if he would culture ear wax and he told me "that's ridiculous!" Anyway...he wasn't going to do CAT scan either and laughed at the PANDAS explanation. I finally convinced him to do CAT scan. I need to find out where this stupid infection is. Thanks for listening. Link to comment Share on other sites More sharing options...
T_Anna Posted February 13, 2013 Report Share Posted February 13, 2013 Glad you got him to agree to order the CT scan, hope you find the missing puzzle piece soon. T.Anna Link to comment Share on other sites More sharing options...
rowingmom Posted February 13, 2013 Report Share Posted February 13, 2013 Good for you for sticking to your guns and insisting on the CT scan. Doesn't it feel horrible when doctors laugh...if only they knew what we know, and had been through what we have. You are a great mom! Link to comment Share on other sites More sharing options...
kimballot Posted February 13, 2013 Report Share Posted February 13, 2013 PANDAS diagnosis aside..... isn't your child the one who has had increased stuffiness with antibiotics? Isn't your child the one with congestion? ENT saw nothing? I can understand not wanting to do a sinus CT scan if there are no signs or symptoms of sinusitis, but your child has had symptoms. It will be interesting to see what comes out in the CT scan. Also, you say that you need to find out where the infection is... but I thought your child had lyme and/or bartonella. If so, that IS an infection that can trigger a PANDAS reaction... plus lyme and bart themselves have symptoms that are similar to PANDAS. So, I don't think your child has to have yet another infection. I also saw in another post that your child has elevated mycoplasma levels. That is the bacteria that causes walking pneumonia. It is also frequently transmitted with ticks if someone is bitten. Mycoplasma can also be the infection that triggers PANS. So, I think it is wise that you are getting the sinuses checked out, especially with the stuffiness, but don't be surprised if they turn out to be fine. Your child has plenty of other "things" messing with her immune system to cause the reactions you are seeing. If you are seeing Dr. B your child will likely be tested for immune deficiency. Given the plethora of infections she seems to have and the history I've been reading, she may have common variable immune deficiency. It will be interesting to see if that turns out to be the case. If it does, it will help to explain a lot. Link to comment Share on other sites More sharing options...
MamaOnAMission Posted February 13, 2013 Author Report Share Posted February 13, 2013 Dr J has treated her for 2 years and she's not getting better. He did second set of labs and said Bart Lyme was gone but u never know for sure I know. So he continues to treat. A tibiotics make her worse thus far. Years ago there was sinus infection on MRI. I think they'll find something on this CAT. I need to try something else. Need to go after sinuses. Not sure how but what we've done thus far isn't helping. Ugh! Link to comment Share on other sites More sharing options...
kimballot Posted February 13, 2013 Report Share Posted February 13, 2013 Dr J has treated her for 2 years and she's not getting better. He did second set of labs and said Bart Lyme was gone but u never know for sure I know. So he continues to treat. A tibiotics make her worse thus far. Years ago there was sinus infection on MRI. I think they'll find something on this CAT. I need to try something else. Need to go after sinuses. Not sure how but what we've done thus far isn't helping. Ugh! I am so sorry. I did not realize that you've been seeing Dr. J for 2 years!. Now I understand why you are thinking it might be fungus and why you are targeting sinuses. You are in a difficult situation because it is hard to tell if the worsening with ABX is due to increased fungus or due to herxing because the ABX work. Please keep us posted on thesinus CT scan. Hoping you get some answers soon! Link to comment Share on other sites More sharing options...
MamaOnAMission Posted February 13, 2013 Author Report Share Posted February 13, 2013 I know. I really don't think there working. I was trying to convince myself that they were, but its been 4 months (I know its not long, but I really don't see anything good.) My gut tells me to try something else. Link to comment Share on other sites More sharing options...
kimballot Posted February 14, 2013 Report Share Posted February 14, 2013 I know. I really don't think there working. I was trying to convince myself that they were, but its been 4 months (I know its not long, but I really don't see anything good.) My gut tells me to try something else. I am a strong believer in gut-belief, but I also know that lyme and bart are tricky and are not always as they appear. My son has bart and it is bear to fight. Sometimes he seems worse when we start new ABX - but it is because the ABX are really fighting the darn thing. I find a lot of ideas from the lyme forum here too. I really wonder about immune deficiency with your child. Link to comment Share on other sites More sharing options...
MamaOnAMission Posted February 14, 2013 Author Report Share Posted February 14, 2013 Is it a geneticist that I see for immune deficiencies? If not who...I have tons of blood work and labs from so many experts. I am thinking that they must have checked her immune system. Link to comment Share on other sites More sharing options...
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