Met with Immunologist..

[Pudgeo]

I met with Pedi Immunologist at Stanford. He was very caring and spent alot of time explaining things to me. He did not feel my son had true PANDAS because he never had a super elevated ASO & antidnase. He did feel that my son did have some sort of neuro immune disorder that was causing all his symptoms(spacey, anxiety, OCD) My sons MRI did not show brain inflammation but he felt we needed to do a spinal tap to see for sure. My husband freaked out about a spinal tap and I felt..hey anything to give us more INFO!! He said the spinal tap would reveal what kind of antibodies where in there...

Also he said he would not start an anti-biotic now..

 

He also felt IgM's were very unrelaiable because they can change so quickly..He felt we were best to do up to 6 courses of IVIG and he told me to be patient and he bets there will be symptom improvement soon..He also ordered more labs to be done.

 

We are only on IVIG number 3 next week and I can't imagine waiting 3 more months..I am really considering putting my son on prozac/abilify or something to stop the OCD. He can't go to school like this..he'll spend all day arranging his pencil box!

So that's the low down..Thanks to all of you who have been so helpful..I'll have a party when this is all over! Sarah

[dut]

Just a quick response but have a listen to the lecture posted by mustang carole on 28th july 2008. This doc reckons you can't rule out PANDAS unless u do a full panel which includes aso and dnase but also 3 other enzymes produced by strep and three of the M proteins...

[michele]

Sarah,

Thanks for the update. Maybe this was a doc who doesn't believe in PANDAS? There are many out there. That is why a specialist who has done PANDAS research like Murphy or Dr. K or Sweedo are your best bet. It is awesome they did an MRI for you. Does he have tics now? What about a tic disorder? Our neurologist didn't believe in PANDAS but did diagnose with tourettes syndrome. TS causes OCD, anxiety, emotional liability, tics , ADHD, fine motor delays. I had never heard of the spinal tap being done. Was his basal ganglia enlarged? I know PANDAS has a D8/17 marker but I have never found a Dr. who tested for this. http://www.ocfoundation.org/pandas.html. Check out this link on the OCD D8/17marker and IVIG.

 

Michele

I met with Pedi Immunologist at Stanford. He was very caring and spent alot of time explaining things to me. He did not feel my son had true PANDAS because he never had a super elevated ASO & antidnase. He did feel that my son did have some sort of neuro immune disorder that was causing all his symptoms(spacey, anxiety, OCD) My sons MRI did not show brain inflammation but he felt we needed to do a spinal tap to see for sure. My husband freaked out about a spinal tap and I felt..hey anything to give us more INFO!! He said the spinal tap would reveal what kind of antibodies where in there...

Also he said he would not start an anti-biotic now..

 

He also felt IgM's were very unrelaiable because they can change so quickly..He felt we were best to do up to 6 courses of IVIG and he told me to be patient and he bets there will be symptom improvement soon..He also ordered more labs to be done.

 

We are only on IVIG number 3 next week and I can't imagine waiting 3 more months..I am really considering putting my son on prozac/abilify or something to stop the OCD. He can't go to school like this..he'll spend all day arranging his pencil box!

So that's the low down..Thanks to all of you who have been so helpful..I'll have a party when this is all over! Sarah

[Pudgeo]

Thanks for the comments..hopefully we can all learn from each other!

My sons MRI did not show any inflammation..but I've read where MRI are not sensitive enough to always show inflammation. This is where the 3-D scan comes in....

This Dr did believe in PANDAS and had treated it before. But he wanted to see higher strep numbers than what my son had..but he definitely felt there was an immune triggered response that was causing my sons symptoms.I feel my son was exposed to strep or that the testing was done too late after he was sick..(6 months)He ordered a bunch of labs so I will interested in the results!

Thanks for the link to OCD article

As for the marker..my sons did show elevation of the on his PANDAS panel. It is a rhuematic fever marker. In fact this Dr mentioned I should see a rhuematologist...(did I spell that right?)

So I still think my son needs to be on azithromycin right now..with school starting I am really worried about possible reinfection..

Thanks, Sarah

[P_Mom]

Sarah...can you tell me why the docotr recommended you see a rehumatologist? (spelling also???)

[4Nikki]

I dont care what the illness is called as long as it can be treated. You are lucky this immunologist cares enoght to look futher. My experience is that they have thier hands tied about what they are allowed to do. DD numbers were elevated during a flare but without the flareup and high counts i think immunoligist can do litlle.

[pr40]

i think you are extremely lucky to have found this dr. ivig is golden standard though it may not help every child. if you read old posts about ivig, you'll see that sometimes it takes time for positive effects.

on OCD, there is at least one thing you can try if you are not already before you move to prozac, namely probiotics. see recent post on research from tufts.

you can also try NAC, fish oil, and change diet to gluten and casein free. you can also do CBT, there is a good book if you want to start it at home by Dawn Huebner.

but, perhaps, the most important thing I can say is that there is no cure for pandas and all healing that happens happens over a long period of time. a year for some, five or more for others. if you expect to give something to your child and he goes to school without OCD, well, it is not going to happen.

[MaryAW]

I can not believe he would do IVIG and not at least let you try antibiotics. Where is the harm? What about PANS? My DD is PANS. She would not have met your doctor's criteria; however, she is responding incredibly to Azithromycin, Vitamin D3 (got her level up to 70), omega 3's. I was able to educate my DD's pediatrician and he prescribed Azithromycin based on Dr. Murphy's clinical trial. Have you tried short term ibuprofen? It is not a long term solution, but it may give your poor guy some relief. I would also highly recommend looking at Beth Alison Maloney's latest book. Many of the leading PANS/PANDAS doctors offer advice. We bought it on Amazon. It is HUGELY helpful:

 

Childhood Interrupted: The Complete Guide to PANDAS and PANS

http://www.amazon.com/Childhood-Interrupted-Complete-Guide-PANDAS/dp/1492974862/ref=sr_1_1?ie=UTF8&qid=1393032191&sr=8-1&keywords=beth+maloney+pandas

 

Our children do not fit into one nice little mold which further complicates the treatment/diagnosis of PANS/PANDAS.

[Mayzoo]

The OP is 4.5 years old. I do not know if this poster is still around or not.