HD IVIG

[hawks]

Needing some help here as I know so many of you are full of great advice and have been at this much longer than myself. DS15 is currently going through a CBT/ERP 3-week intensive program. Despite the excellent staff and docs – we have had extremely slow progress for the first 8/9 sessions due to the severity of DS’s OCD. He is just so sick. It has been a struggle though it looks like now we might be making some headway. I had an appt at the clinic with one on the docs who’s very involved with PANDAS – one of my main reasons for meeting with this doc was to help us determine if we are on the right track and doing the right things for our son.

 

Since I don’t post that often I will give you a quick history – DS12 had strep (oct 08), Flumist (Nov 2008) followed by another case of strep in jan o9’. Though I cannot tell you the exact day - OCD (obsessions/no compulsions at this time), separation anxiety, fears of specific things, fidgety, emotional breakdowns, and irritability suddenly began sometime in that Oct/Nov time frame. These symptoms prompted me to speak to our ped. in Jan of 09. Ped said that he was probably having a rough time transitioning to middle school and thought that puberty might have something to do with it. His advice was to just keep an eye on him. He was an excellent student and though he continued to do well he began to hate school. Made it through the school year and improved through the summer. Started him at a smaller private school the next year where he did and managed just fine though he still seemed to have a little anxiety at times. Fast forward fall of 2010 – we decided that we would try back at public school for a few different reasons. A little anxiety but a great start to the year until Nov during wrestling season. Things began to get iffy again sometime beginning in nov and then we had another flumist in the middle of nov. The OCD returned big time and this time with major washing compulsions in addition to all the sypmtoms he had before. By Dec 2010 he was out of school and has yet to return – we were really hoping he would be ready to go back for his 9th grade year. We are currently trying to get through sessions with a tutor but concentration has been very hard for him. At the height of this exacerbation he was pretty much non-funtional due to contamination fears – on a futon (safe-zone) watching tv or playing video games. Prior to this history we had a normal functioning kid who did great with school, sports, and was an avid outdoorsman.

So he was diagnosed with PANDAS in 2011 – advice from the PANDAS doc that we saw was to do IVIG soon (due to the age factor) and 500mg Augmentin for a year. As we began this PANDAS journey we noticed a lot of folks being diagnosed with lyme after PANDAS treatments didn’t get them healed. We thought we should look into lyme because of our son’s love of the woods and outdoor activities. Our dogs have been treated for LYME too. So we held off on the ivig and found an LLMD and had him tested through Igenex which came back neg but the LLMD thought that there were a few bands that were significant so we should treat him with antibiotics. He tested positive for HHV6, negative on other coinfections. About three weeks into 875mg x2 of Augmentin, and 250mg of Azithromycin and 12.5 mg of Zoloft for 4 days he started coming out of the severe non-functional OCD - probably got back to 60% over the next 2-3 months. Since June/July time frame he has had ups and downs but the last couple months he has gone further downhill again though not as bad as the height of the exacerbation. That is why we headed for the 3-week intensive hoping to make some gains. Our LLMD has not retested anything as of yet.

 

The doc we met with at the clinic here has prescribed an additional psych med to help DS get over the hump so we can make the most of the therapy. The doc also suggested some supplements in addition to the ones we are already taking. We also talked about ivig’s. She is suggesting 1.5/2.0 HD ivigs monthly x 3 or 4 treatments to really sick kids. I know that some docs are doing this and some are doing 1 HD ivig and then it is a wait and see kind of thing.

 

So just wondering how things have gone for people who have done the multiple ivigs. Did those who did multiple ivigs do them monthly or did you wait to see if you needed to do another? It is just so hard to know which direction to turn. I do think that our LLMD would do the IVIG’s – hoping that insurance would cover some of the treatments. I know that every kid is different, we were really hoping and praying for more progress by now. I don’t think the antibiotics are enough. It is just really hard to know if this just PANDAS or if Lyme is truly part of the equation (if we had a positive test and treatment was progressing better that would help)?

 

Through all of this I thank God for the doctors that are willing to take risks and for their compassion and commitment. I also feel so blessed to come to this forum to get help from you all!!! Many of you are experts and really know your stuff. Thank you!! By His grace we take this day bay day one step at a time. Angie

[Iowadawn]

Hello Angie!

 

Good to hear from you. We are cautiously optimistic that we are turning a corner with our ds12. Has the LLMD ruled out bartonella? When we started aggressively going after this we are seeing progress with the hd IVIG's. We have gone to 8 weeks a part. We want to get 2 more in before the end of the year when the approval for a year of them expires. Evan has been back in school--some hiccups, but he is more like we had in early elementary--keep it together at school. Evenings can be interesting if there are things he's stuck on. BUT, he has been able to rebound out of the funks and get back on the horse & get going. I still look forward to the day when the aggression/verbal garbage goes away for good! We are trying a low dose of flagyl this weekend after seeing the LLMD yesterday----DO say a prayer--I think we will send the girls to friends or sisters to keep the weekend as stress free as possible. We added colloidal silver late July. After this we started more momentum. His bartonella rashes are very few and farther & farther between. After the last IVIG in Aug. we didn't see a huge increase in the rashes like we have. PM me. or email. or call.

 

Thinking & praying for you.

 

Dawn

[hawks]

Hey Dawn -

 

Good to hear from you too! I am so glad Evan is doing better! I pray for you often and will continue. Joe tested negative for Bartonella originally and the doc hasn't revisited. Have not seen any rashes with anything we have done so far. I have been following your posts and know that you are seeing some positives with the collidal silver - is that just used for Bartonella? Is it used for strep? We have UHC for insurance - they approved 1 IVIG hopefully if we go this route the others will be approved as well. I will PM you with some other questions. Thanks, Angie

[sf_mom]

I would also speak with your LLMD while waiting for IVIG approval to discuss a potential antibiotic rotation or do additional testing for co-infections/viruses/KPU, etc.

 

Our older son does not make antibodies for LD and comes up serologically negative for Lyme, Bartonella and Babesia when tested via antibodies. We had to pursue other means of testing to help support clinical diagnoses. For Lyme we did urine PCR. For Bartonella we did blood smears, CBC, herbal provocation, looked at other family member positive results and ART. For Babesia we did stool analyses, CBC, herbal provocation, looked at other family members positive results, ART, etc. Of course, treatment responsiveness is paramount. After two years of treating for PANDAS/Lyme our son was recently treated for Babesia, in week 5 of treatment he broke out in a petechial rash down his spine, responded with herx, etc. He has never had the typical Bartonella rash appear but is very responsive when provoked with herbs. Testing and treating for viruses and KPU have also been helpful in advancing our recovery.

 

We originally did 3 hdIVIGs, 8 weeks apart over 20 months ago with Dr. K. We do not feel another hdIVIG will be indicated. He currently maintain a high level of recovery and responds to illnesses like a normal child but is still on antibiotics.

 

 

-Wendy

[hawks]

Wendy -

 

Thank you so much for your reply. This will give me some info to ask our doc when we visit him next as we consider the IVIG route. I am so glad that your family is finding healing as this sounds like it has been a long haul for you all. Angie