Sick again?

[Wickedmaineah]

I haven't posted here in awhile. All my waking hours seem to go to caring for and contacting the right people for our son. He has seen a neurologist, infectious disease and 2 pediatricians. We are now working with a wonderful pediatrician who says she has never had a PANDAS child so she does not know if it exists or not (said after the infectious disease doctor spent 45 minutes telling me how PANDAS does not exist.) The pediatrician said it could not hurt to treat for it and see if he benefits so we are on a 6 month dose of antibiotic weekly. Its a strong dose and he is usually sick the day after no matter what I give him with it.

The issue now is there is strep in his school (school nurse was dilligent about calling me as soon as the first case was suspected and then again when it was confirmed.) Behavior changes were noted in my son and a repetitive cough (more than normal, tic in nature). Now he is home with a fever, body aches, and sore throat. Calling the pediatrician again, but really starting to worry whether he will be able to attend school or not this year. I am starting to wonder if he has any immune system at all......anyone else's child get sick constantly and not just from strep?

[Dedee]

Yes. Many PANDAS children have a compromised immune system. I have three PANDAS / PITANDS kids. My middle son has low IgG & subclass 3's along with low IgM levels. He is always sick. We are currently working with supplements and other medications to strengthen his immune system. If this doesn't work after about 6 months we will most likely do IVIG. If you have not done an immune panel on your son you should consider it. Also, you may want to consider consulting with a PANDAS specialist who could help guide your pediatrician on antibiotic coverage for your son. If he is still getting sick with bacterial infections while on antibiotics you should consider different coverage. I would be concerned about an antibiotic that is making him sick and not protecting him. There are several options available and if this physician isn't aware of the options, you should find one that is. JMHO. Best of Luck.

 

Dedee

[Wickedmaineah]

Yes. Many PANDAS children have a compromised immune system. I have three PANDAS / PITANDS kids. My middle son has low IgG & subclass 3's along with low IgM levels. He is always sick. We are currently working with supplements and other medications to strengthen his immune system. If this doesn't work after about 6 months we will most likely do IVIG. If you have not done an immune panel on your son you should consider it. Also, you may want to consider consulting with a PANDAS specialist who could help guide your pediatrician on antibiotic coverage for your son. If he is still getting sick with bacterial infections while on antibiotics you should consider different coverage. I would be concerned about an antibiotic that is making him sick and not protecting him. There are several options available and if this physician isn't aware of the options, you should find one that is. JMHO. Best of Luck.

 

Dedee

 

 

The antibiotic just bothers his stomach. We are allergic to many antibiotics and have difficulty with all the others. He usually spends a great deal of the next day in the bathroom.

We are seeing his doctor tomorrow and I will ask about the immune panel.Thanks for the suggestion.