ptcgirl

Thx for all the replies. Last year when we beat Lyme and the co-infections she was on augmentin, rifampin, tindamax and enula. This time dr j has her on azithromycin and bactrim. I wonder why the change. Today I didnt give her any abx. I just want her to have a breather. She seems better to me today. She tries very hard to hide it so that I won't worry. I hate this for my child and all of your children too. I want her to be able to live without this awful disorder that is robbing her of the last years of childhood. I'm so depressed today just thinking about it. The ups and downs are so hard to deal with. Hope comes with the good times and I am grateful for them but they make the low points even harder. I just want it to go away and leave us alone. If you are a praying person, please pray for my child and all of the others hurting. I'm doing the same.

My almost 13 yr old daughter finished her third Ivig almost a month ago and things are not going well this time around. We are so confused. She did amazingly well after the first two but at 8 weeks would relapse due to illnesses. She previously had Lyme, Babesia, bartonella, and mycoplasma but was cleared. However her most recent blood test showed Igg positive for bartonella and the bartonella rash came back. We started treating it with azithromax and bactrim in addition to augmentin for pandas. OCD is ramped up and night times are difficult for her. She is working so hard and this stinks. What do we do? Her drs are dr b and dr j for Lyme. Both in ct. So confused about what we are doing. I hate this.

IVIG is a very easy treatment and I would suggest trying not to be overwhelmed by it. The immune deficiency diagnosis (got that one too) will actually be helpful to you with the insurance company. We've seen so much improvement with IVIGs. My daughter looks forward to having them. It really is a pretty painless and easy treatment. I don't know how old your child is, but IVIG isn't something to be scared about. It is one of the biggest blessings we've found. : )

Hi! I'm also in the Atlanta area. At least you've found some PANDAS friendly doctors (to a certain degree that is). We are traveling to CT to see Dr. B. He is fantastic and it is WORTH the travel, expense, etc. Allergies are a HUGE component of my DD PANDAS issues. Spring and Fall are the absolute worse times for her due to this. In the past, her allergies would cause continual infection and it was a never ending cycle. She is getting so much better now with the help of Dr. B. she takes Singulair and Veramyst, in addition to Augmentin daily. Makes a huge difference (but still contracted Step and Mycoplasma while on it!). She is now on her third IVIG. IVIG has been the key to resetting her immune system. Also, since you live in Atlanta, there is an EXCELLENT CBT/ERP psychologist here. She helped (and continues to help) my daughter SO much. PM me for more info. There are others in Georgia with PANDAS. You are not alone.

Just my opinion, but I think it would be incredibly difficult to differentiate between OCD and TICs at the age of four. A compulsion can seem VERY tic-like in our experience. We are now just figuring out some of the differences and my daughter is 12. There are many doctors that do not believe in PANDAS. I'm not sure about your doctor, but I would highly recommend seeing a PANDAS doc to get his/her opinion too. Dr. B is very close to Yale (if you are in that area) and he takes insurance. Good luck with whichever route you and your husband venture. I know it is incredibly difficult when you are both not on the same page. Best wishes always.

The Storch program is great. Worth trying it before or in conjunction with pex. Plus it is covered by insurance.

Good advice, LaurenK. Haven't thought about going about it that way. This issue is particularly disturbing to me since my brother is a doctor at a well known children's hospital and still doesn't believe in PANDAS. It administers IVIG everyday yet we have to travel many states away to receive treatment. It has really put a wedge in my relationship with him (as you can imagine). Then, when my dd was diagnosed with Lyme it made things so much worse. I truly hope one day he comes to me and apologizes for all the hurtful comments he has made. I hope the research comes through quickly with more and more proof that this DOES exist. He has repeatedly stated that all of the studies are far too small to prove anything (which I guess is why the mainstream medical world doesn't get it yet). Annoying since it is our kids that suffer.

Yes, he is quite literate on PANS. He and Dr B seem to have a good working relationship too.

Sometimes Dr. J has cancellations. I know for our first appt I was able to get us in at the last minute (I believe the day before or two days before -- it was a while ago so I don't remember). You could try calling frequently to see if there is a possibility of that. Good luck!!! Seeing Dr. J is worth the wait. I can't imagine someone more knowledgeable. We did see a LLMD in Asheville who was really good, however. He was knowledgeable about Lyme and PANDAS/PANS. PM me if you want his name. : )

Thanks for the info! I think we are going to go ahead and do it, but go really slowly with it (in case of reaction).

My friend's daughter with PANDAS was in the newspaper today! TCBY in Peachtree City is holding an awareness/fundraiser for PANDAS and Emma's treatment. Check the link for more information. So excited! Please let me know if you are coming so that we can look out for each other. http://www.thecitizen.com/articles/08-21-2012/event-tcby-friday-help-ptc-family

Bartonella seems to be back with my dd so llmd prescribed azith and bactrim in addition to the augmentin she was already on. A bit worried about adding in the bactrim. Seems like so many have bad experiences on it. Also concerned that llmd didn't mention liver stuff or to get her checked after being on it. I guess he was just going to do it at her next appt but that is three months away. Bartonella went away before but now it is back. I wonder if any of this will do any longterm good. It is reassuring that dr b is also using these meds. Makes me more comfortable with it. Will see him in sept so maybe will just wait. Anyone have a good response to bactrim???

Really think the video is great! Thanks for sharing.

For OCD I would highly recommend the intensive ERP/CBT programs. Although IVIG helped my DD greatly, the ERP was a crucial part of her doing well. Contact USF for Dr. Storch's program. Really worth while. They may even no of someone there that does it but just be sure to get a daily intensive program with someone truly trained to do it.

I want to go!!! Any cheap hotel rates around there?

I have to say that day five after both IVIGs here were the days that things started looking up. My DD didn't really worsen after IVIG but improvement wasn't seen until day 5 each time (only had it twice though). I was just telling my hubby last week that it appears day 5 will have some significance. Interesting.... The dotted rash does sound like Babesia to me as well. My DD had (or has, never can be sure) that, Bartonella, Mycoplasma, and did test + on one Igenex Lyme test. If you haven't checked for co-infections already, I would highly recommend that you have it done. Again, welcome and good luck! : )

My dd12 had pandas for five years and we finally decided to treat with Ivig. It is working. IMO, see the best pandas dr u can and treat aggressively now. I wish I had done it years ago. Your child can get better. Hang in there.

ERP is crucial and speaking from experience, most of the psys we saw didn't k ow what they were doing. Contact dr Storch at USF and see if he knows a good therapist in your area. If not, go to Usf for a 3 wk intensive. It is life changing for these kids. Well worth it and most insurance cover it. As for meds, Zoloft helped for a while. Abilify was great but caused horrible side effects--30 pounds in six months and loss of menstrual cycles. Ivig worked. Erp was crucial.

Although my 12 dd doesn't have as bad of itching to the extent that you refer, she does itch like crazy during any period of anxiety/stress. She had a great response from Ivig but her symptoms are almost all OCD instead of tics. I know of another pandas kid with mostly tics who did get worse at first from Ivig. She also has Lyme as well. I would continue with the ivigs or do pex, as i believe Swedo said it is more helpful for tic manifestation. Good luck and I hope he gets better soon!!!!

Interesting indeed!

So excited with you! Steps in the right direction. Love to hear it!!!

I just have to share this.... I hope fate doesn't burn me for saying it, but my very favorite part of my 12 year old daughter having IVIG (second one) is that she actually can "play" again. After five days post IVIG she started initiating play with her sister (11 years old). She has continued this every day since. This is huge in our house since she really hasn't done this in years. She actually enjoys playing again. Thank God for her getting some of her childhood back. Second IVIG has gone incredibly well (as did the first). Hope and pray that reinfection stays far, far away. So thankful for IVIG and that we finally went through with the procedure. Simply awesome.

Great news! : )

It was extremely easy recovery time for my daughter when she was 9. Very little to no pain. Don't second guess yourself. Well worth it if it helps your child. It gave my daughter 9 months of childhood back. Really wish I could have kept her on abx afterwards. Would have likely prevented her from getting sick again.

I wouldn't hesitate on going to FL to see Dr. Murphy and hopefully signing your son up to see her too. I put off treatment for my DD for years. Now she is getting better with treatment (IVIG). I wish I had done it sooner. Losing a childhood (5 years of it)is painful.