OK I am biting the bullet

[saidie10]

Ok experts. I have decided to go ahead and contact my son's Immunologist. Remember this is his first PANDAS case so I know I should involve him, and I trust him and I know he wants to be involved in the whole process, I just don't know if he is going to know what to do next? Hopefully he is willing to contact the appropriate doctors to help him. I spoke with the patient care coordinator in his department and she wants me to put together an email with a synopsis of how things have been going and what we have seen over the last 8 wks post IVIG. I have spoken and communicated via email with him briefly but that was during the initial ramp up of symptoms which we had expected might happen, and then things got really good, but now we are here with motor tics again and I just don't know what to do. What questions should I ask him? Should we talk about changing abx (DS7 is currently on Penicillin 250mg per day). What about another IVIG? He strictly following what Dr. Swedo and Dr. Cunningham have put out in regards to treatments etc., so what do you think he will recommend? What about additional testing (titers, lyme, etc - mycoplasma was negative btw). Steriod burst?

 

Thanks so much guys...I could never do this without all the help you all have given me!

[Fixit]

Ok experts. I have decided to go ahead and contact my son's Immunologist. Remember this is his first PANDAS case so I know I should involve him, and I trust him and I know he wants to be involved in the whole process, I just don't know if he is going to know what to do next? Hopefully he is willing to contact the appropriate doctors to help him. I spoke with the patient care coordinator in his department and she wants me to put together an email with a synopsis of how things have been going and what we have seen over the last 8 wks post IVIG. I have spoken and communicated via email with him briefly but that was during the initial ramp up of symptoms which we had expected might happen, and then things got really good, but now we are here with motor tics again and I just don't know what to do. What questions should I ask him? Should we talk about changing abx (DS7 is currently on Penicillin 250mg per day). What about another IVIG? He strictly following what Dr. Swedo and Dr. Cunningham have put out in regards to treatments etc., so what do you think he will recommend? What about additional testing (titers, lyme, etc - mycoplasma was negative btw). Steriod burst?

 

Thanks so much guys...I could never do this without all the help you all have given me!

 

i have not done ivig....

but 250 mg pen sound low and maybe wrong abx...don't quote me...but defininely low..what is weight.

i ask every question i can remember...

i write them down...but as you know, you start talking..get redirected and miss some...

ask every single question you have....no matter if you feel it is silly...

i aks questions here....and get replies, i should have thought of on my own, and some i didn't know..but my brain is scrambled eggs, so i am sure many are not surprised by my questions

and i wonder if that maybe the same for the docs....you may trigger other thoughts for them or other cases they dealt with...

[nevergiveup]

Ivig did not have as beneficial results for tics as plasmaphersis in the swedo study. So measuring tic resolution may not be the best way to look at ivig success. Concentration, chorea, sleep, and severe ocd seems to be helped with ivig, tics can take up to a year to resolve. So be careful when looking for successes, its important you understand what was helped in Swedos study. Tics somewhat, about a 15 percent reduction on average, some more some less. My doc says it can take up 6 months of high dose ivig monthly to see help in tics. I hope you continue to see improvement, the tics are the last to go. I am an advocate of morew ivig than less. It has been helpful for us.

[saidie10]

Ivig did not have as beneficial results for tics as plasmaphersis in the swedo study. So measuring tic resolution may not be the best way to look at ivig success. Concentration, chorea, sleep, and severe ocd seems to be helped with ivig, tics can take up to a year to resolve. So be careful when looking for successes, its important you understand what was helped in Swedos study. Tics somewhat, about a 15 percent reduction on average, some more some less. My doc says it can take up 6 months of high dose ivig monthly to see help in tics. I hope you continue to see improvement, the tics are the last to go. I am an advocate of morew ivig than less. It has been helpful for us.

 

Thank you so much for the responses. I do plan to update the doctor and see what he has to say. Express my concerns, but also not jump the gun...I guess I shouldn't be too quick to change things. Maybe I do need to be more patient. He is very much following Swedo though so I guess he will need to become versed on the tic situation when it comes to PANDAS.