Looking for advice

[Fixit]

Hi--I'm fairly new here. My ds 11.5 had IVIG at Dr. B's office Aug 23 and 24 '10. Initially we saw an improvement in his constant cough/sneeze tic. Unfortunately he became plagued with debilitating migraines which took 3 weeks to find someone to treat. I have seen a resurgence of old tics, facial and body, that we haven't seen for awhile. When I spoke to Dr. B about this, he felt the improvement, with the worsening, was expected and classic PANDAS post-IVIG. The every 8 week schedule has to do with the half-life of IVIG, which is 21 days. In 6 weeks, there is only 1/4 gamma globulin left, 9 weeks down to an 1/8, hence his recommendation for every 8 weeks. My son was also dx'd w/Lyme 2 bands on IgG and IgM from IgeneX--initially , Lifespan Labs showed no Lyme.. I agree that it is important to see an LLMD if you have questions. I know of several people treated with IVIG who have had chronic Lyme or Lyme in the spine, so I do not think it is contraindicated. We will be testing for co-infections tomorrow, one week before his next IVIG. It does feel complicated to deal with a child with Lyme and PANDAS.

 

so is your son dx with lymes?..by whom?

 

who and how did you treat the migraines? doc b didn't have any suggestions

 

so the worsening was expected?

is the thought that if your child is not better in the 8th week you need another???

 

what co-infections are you testing for?

 

is your child at all better than before ivig?

as in some things went away..but some things came in....so it status-quo.. or marginally better?

 

i have to ask the hard question...are you scared when stuff is showing up...

do you feel condfident the next one or 2 will resovle this....

how many ivig's are you scheduled for?

[pamsboy]

Hi there, thanks so much for your reply!! Can you tell me what lab you retested through and whether it was a PCR or Western blot or both? We saw Dr Jones and he is testing for babesia through Specialty Labs. We are seeing Dr Bouboulis on Wednesday...thanks for your help!! BTW what did your son have on the Cunningham tests?

 

Pam

 

IVIG is not really contraindicated per se. Yes, we saw Dr Jones and then Dr Bouboulis later that day. They seem to work well in synergy with each other's patients. Dr J says IVIg schedule if any needs to stay on track for the PANDAS. He looks at the Cunnigham test results too. Now the problem is IVIG can stir up stuff again and set you back with Lyme issues is what experienced moms have told me.Dr Kovacevic is in agreement when I contacted him (he did my son's one IVIG)about getting coinfections in check before another IVIG. He wanted even the low Ferritin to be normalized before he thinks of another IVIG for DS. Dr B agreed and we're currently pursuing Bartonella treatment. Dr J says the current ABX will provoke Borrelia Burgdorferi (basic lyme) and Babesia if DS has any and at followup in December he will retest for those.

I have posted in the past frantically seeking answers for my sons depleting Ferritin levels, limping, muscle spasms, aches pains, muscle weakness and atrophy and the Pandas/lyme moms on this forum (esp SF mom- THANKYOU for your continued support) have literally helped save my son's life.

ALL of our four times of Quest Lyme testing - western blot etc were all negative for 1.5 years. I found out about Igenex, tested and STILL all negative- lyme and all lyme coinfections. I was floored!! BUT I still kept my appt with Dr J because the wonderful angelic moms here told me that Lyme hides very well, it may need to be provoked before testing and also Lyme is a CLINICAL diagnosis by an LLMD. The blood tests are just supporting data.

Dr Jones did a THREE hour plus eval on DS and suspected Bartonella. He retested thru another lab that goes deeper than Igenex and yes, DS had Bartonella- very high actually but too deep inside for Igenex testing.

I can see a whole new child emerging and I am very grateful to God for pointing me in the right direction.

 

I would be more than happy to help you in any way I can. It would be my previlege. So please don't hesitate. I would be still struggling had it not been for the moms on these forums.

[nevergiveup]

Those same "experienced" moms said ivig was helpful a year ago. Talk to the experts ask what they see, EXPERTS, people whom have been treating pandas for many years and have seen hundreds of patients. Dr K does not agree on the Lymes stuff. He does however feel getting rid of infections, strep myco is important. He also says only ONE child he knows of has been "cured" by getting rid of infections. The rest need

ed ivig. Monthly ivig right now is a great option to keep disease activity down, someday b cell drugs will show more promise.

[PhillyPA]

Remember when your kids were little and they started to hit their developmental milestones? Think about what happened. Maybe they started to creep or crawl and then didn't for a few days. Maybe they slept through the night for the first time and then they woke up for the next week in the middle of the night. I always considered it "glimpses of things to come." Good things were coming my way. It is hard to be patient when you want your child to be better now. We want to quickly change their antibiotics and switch things up. Be patient. Your child only had his ivig 7-8 weeks ago. You saw some glimpses of things to come. Your child's brain is healing. It is not a little bo-bo that you cover with a band-aid and it is all better in a week. Ride out the storm for a bit and see where it takes you. Relax and surrender...at least until your next doctor's appointment.

[JAG10]

Those same "experienced" moms said ivig was helpful a year ago. Talk to the experts ask what they see, EXPERTS, people whom have been treating pandas for many years and have seen hundreds of patients. Dr K does not agree on the Lymes stuff. He does however feel getting rid of infections, strep myco is important. He also says only ONE child he knows of has been "cured" by getting rid of infections. The rest need

ed ivig. Monthly ivig right now is a great option to keep disease activity down, someday b cell drugs will show more promise.

 

NeverGiveUp,

 

I was reading one of your old posts (Feb. i think) where you wrote that a leading expert in IVIG was commenting on how difficult it is to get auto-antibodies out of the brain (stick like glue)and his thought was 2g//kg was the best shot. Based on your conversations and information gathering since that conversation, do you think this is valid? Did this expert comment on frequency? What is the rationale behind monthly and at what dose? It also seemed like he was saying you could go years without symptoms and then get triggered again??

 

Sorry for all the questions, but you seem to have a pipeline of awesome info!

JAG

[saidie10]

Remember when your kids were little and they started to hit their developmental milestones? Think about what happened. Maybe they started to creep or crawl and then didn't for a few days. Maybe they slept through the night for the first time and then they woke up for the next week in the middle of the night. I always considered it "glimpses of things to come." Good things were coming my way. It is hard to be patient when you want your child to be better now. We want to quickly change their antibiotics and switch things up. Be patient. Your child only had his ivig 7-8 weeks ago. You saw some glimpses of things to come. Your child's brain is healing. It is not a little bo-bo that you cover with a band-aid and it is all better in a week. Ride out the storm for a bit and see where it takes you. Relax and surrender...at least until your next doctor's appointment.

 

Thanks...I needed this. Just breathe.

 

I am glad this post allowed some others to find some answers and ask some questions that they were looking for or having!!!!