teenager with PANDAS

[dcmom]

Kay-

 

I totally agree.

 

When my dd's were in their severe episode- forget it. They would not be able to get themselves out of panic mode.

 

Now, when she tries things that made her panic before- she is nervous. But her nerves seem to be about her fear of panicking like she did last time, and in the end, when she does the thing- it is actually NOT THAT HARD- it is more the nerves before.

 

So once you have treated them medically, it just takes a little work to move past the fears.

[Kay]

YES!

 

 

Kay-

 

I totally agree.

 

When my dd's were in their severe episode- forget it. They would not be able to get themselves out of panic mode.

 

Now, when she tries things that made her panic before- she is nervous. But her nerves seem to be about her fear of panicking like she did last time, and in the end, when she does the thing- it is actually NOT THAT HARD- it is more the nerves before.

 

So once you have treated them medically, it just takes a little work to move past the fears.

[kimballot]

....Not until she was exposed to strep by a boyfriend with a confirmed case of strep (confirmed after) did she start with the severe separation anxiety and the rest of her symptoms followed.

 

Kay - My son is 13 and not yet interested in a girlfriend. Reading your post made me realize that we will have a whole new set of issues to deal with. How do you help your kids to talk to a boyfriend/ girlfriend about PANDAS? How do you teach them to develop healthy habits so they are not contracting strep or other infections? UGH!

Edited May 19, 2010 by kimballot

[tpotter]

Yes, my 16 yo son was dx by Dr. K. last year. We've done 1 round of PEX, which actually helped with almost everything except the OCD. Rage attacks have not been as bad. We had tried some SSRI's (not for long, though,) and they did nothing. We are now planning another round of PEX and/or IVIG. He is also on 1000 mg of Augmentin XR at this time. That's GREAT that your dr is willing to arrange the IVIG. I wish I could get ours to do it.

[Rowens1214]

Yes, my 16 yo son was dx by Dr. K. last year. We've done 1 round of PEX, which actually helped with almost everything except the OCD. Rage attacks have not been as bad. We had tried some SSRI's (not for long, though,) and they did nothing. We are now planning another round of PEX and/or IVIG. He is also on 1000 mg of Augmentin XR at this time. That's GREAT that your dr is willing to arrange the IVIG. I wish I could get ours to do it.

 

did the PEX help out at all with the OCD. that is my sons main problem right now. even he will tell you that he can deal with the tics but its the constant bad thoughts that make life so hard to deal with. How often does he take the augmentin. right now my son is on 500mg daily and it does not seem to be helping any.

 

Robin

[tpotter]

I don't think the PEX helped much with the OCD. But, a lot of parents are saying there is residual OCD. It's hard to know how much is PANDAS, and how much is other stuff (my son is also diagnosed with Asperger's Syndrome. I am in the process of finding someone who does ERP to work with my son. Other families have apparently found great success with that. But, the PEX definitely helped with the rages, tics, mood swings, and even not getting sick (immunomodulating effect). He was sick 32 days of school in 2008/2009 (he was dx by Dr. K. in 3/09). This year, he's had, maybe 8 or 9 absences, and 5 days was for the H1N1 flu.

[Kay]

Well Kim no wisdom here. After the boyfriend and strep she was too ill to deal with all that and has been pretty much at home for the last few years. No telling on the times she did try school and social events if she was exposed and had flares as we really didn't have any idea of what was going on.

 

She has just told her friends now that what kept her down for all this time is an auto-immune disease and all her friends were off in college this year so she is just getting to seeing them now since they have come home. Stay tuned.

 

 

....Not until she was exposed to strep by a boyfriend with a confirmed case of strep (confirmed after) did she start with the severe separation anxiety and the rest of her symptoms followed.

 

Kay - My son is 13 and not yet interested in a girlfriend. Reading your post made me realize that we will have a whole new set of issues to deal with. How do you help your kids to talk to a boyfriend/ girlfriend about PANDAS? How do you teach them to develop healthy habits so they are not contracting strep or other infections? UGH!

[momaine]

Augmentin and Azithromycin help a little. The advil and prednisone have been the life savers while we wait for IVIG approval. Hopefully soon.

 

Angela

[amyjoy]

HI Nancy

 

I have a 14 1/2 yr old son with a similar story of 5 year duration, but in addition to OCD/intrusive thoughts and anxiety, he has motor tics. We have done a consult with Dr. K and another MD in Petaluma CA who originally diagnosed him with PANDAS a few months ago. The recommendation is certainly IVIG, although how many treatments our kids need is uncertain both due to being older and i believe duration of symptoms.

 

I am also an NP and fortunate to work in a progressive medical practice where we have a dedicated IV suite. I have spent all summer putting together a program to treat our children with IVIG according to Dr. K's protocols, and had the privilege of treating our first child, a 14-year old patient of Dr. K's, last week (with Dr. K's blessing). She did so well, practically no side effects at all, and this dear child has had PANDAS for nearly 9 years, practically all of her life. We expect she will need another treatment. For families closer to the west coast, we are hoping to have an addition place for them to come for IVIG treatments that would not require so much travel.

 

Anyway I hope this feels encouraging to you. Also, check out the pandasnetwork.org website for a ton of great information about PANDAS as well as IVIG. I wish you and your child every success and hope on your journey.

Amy

[Packer Fan]

My 15 yr old son was diagnosed with PANDAS one year ago. We have had some success with high doses of antibiotics but they currently seem to not be working as well. We are currently "under review" from our insurance company for our first IVIG treatment. We had a 5-day steroid burst about 2 weeks ago and my son showed HUGE improvements since the steroid burst. We know it will probably be temporary but it has provided some welcome relief and allowed us to start the school year on a high note! We also have been able to reduce his other medications by about half in the past 3 months (including SSRIs). Don't be afraid to try a steroid burst - it has really helped us right now!