Looking for advice

[saidie10]

Basically at a loss now with what is going on....what to do next. IVIG August 18th and 19th. Saw a down slide in symptoms for a few weeks and then had an amazing period of 2-3weeks. Now head and eye tics are back. So confused. This illness is so hard to figure out?!?! So, has he been around strep? Is something else triggering it? What's next? Ask doctor for a different antibiotic? Steroids? I simply have no idea what to do . My poor DH is completely confused and actually thinks that because he had IVIG this was all supposed to go away. He simply could never bring himself to read all the literature and posts on here like I have to know that this is not necessarily so.

 

As a reminder. My son was a truly classic PANDAS presentation. We found no other underlying issues (except no testing for Lyme at this point). Elevated titers in conjunction with symptom exacerbation, sudden onset OCD, etc.

 

Anyway, any advice is ALWAYS greatly appreciated.

[bronxmom2]

Hi-- we see Dr. B, and as you may know his current protocol is IVIG every 8 weeks. I have seen the same pattern: two weeks of decline, a good period, then at about the 7-8 week period, a falling off.

 

I have asked him about this, and he says (or anyway this is what I understood him to say) that when we no longer see this falling off, we will hope the IVIG has done its job and stop doing it.

 

We have done 4 IVIGs and with each one, the post-IVIG decline has gotten less drastic, the good period has felt more stable, and the falling-off has been more subtle.

 

I removed my son from school last year, so reinfections is less of a factor for us (although he's not totally isolated, obviously)

 

good luck-

[lyme_mom]

Basically at a loss now with what is going on....what to do next. IVIG August 18th and 19th. Saw a down slide in symptoms for a few weeks and then had an amazing period of 2-3weeks. Now head and eye tics are back. So confused. This illness is so hard to figure out?!?! So, has he been around strep? Is something else triggering it? What's next? Ask doctor for a different antibiotic? Steroids? I simply have no idea what to do . My poor DH is completely confused and actually thinks that because he had IVIG this was all supposed to go away. He simply could never bring himself to read all the literature and posts on here like I have to know that this is not necessarily so.

 

As a reminder. My son was a truly classic PANDAS presentation. We found no other underlying issues (except no testing for Lyme at this point). Elevated titers in conjunction with symptom exacerbation, sudden onset OCD, etc.

 

Anyway, any advice is ALWAYS greatly appreciated.

Kids can present with classic PANDAS symptoms and have lyme disease. I think that all kids with suspected PANDAS should be screened for lyme, bartonella and babesia b/c these diseases are very common from coast to coast. There is no place in the country that does not have lyme disease (or else I would be moving there :-)). Lyme or these other tick borne infections can look like PANDAS and boys ages 8 to 15 are at high risk for getting lyme statistically. Lyme is at the root of many different health problems and it is treatable if you see a lyme literate doctor. If lyme is involved the good news is that the right combo of antibiotics (or anti malarial meds in the case of Babesia) can get rid of the symptoms. Good luck. I would not rely on anyone but a lyme specialist to tell me whether or not my child has lyme. The tests are also not very reliable b/c there are many, many false negatives. Igenex testing is a good place to start but if you want to save money I would just go straight to a llmd and get his or her opinion. A trial treatment is worth a try if the doctor believes the symptoms are lyme related. Usually you will see a reaction within weeks of starting the treatment that will let you know you are on the right track.

[sptcmom]

Kids can present with classic PANDAS symptoms and have lyme disease. I think that all kids with suspected PANDAS should be screened for lyme, bartonella and babesia b/c these diseases are very common from coast to coast. There is no place in the country that does not have lyme disease (or else I would be moving there :-)). Lyme or these other tick borne infections can look like PANDAS and boys ages 8 to 15 are at high risk for getting lyme statistically. Lyme is at the root of many different health problems and it is treatable if you see a lyme literate doctor. If lyme is involved the good news is that the right combo of antibiotics (or anti malarial meds in the case of Babesia) can get rid of the symptoms. Good luck. I would not rely on anyone but a lyme specialist to tell me whether or not my child has lyme. The tests are also not very reliable b/c there are many, many false negatives. Igenex testing is a good place to start but if you want to save money I would just go straight to a llmd and get his or her opinion. A trial treatment is worth a try if the doctor believes the symptoms are lyme related. Usually you will see a reaction within weeks of starting the treatment that will let you know you are on the right track.

 

I totally echo Lyme mom's quote. Its thanks to moms like her on this forum that practically saved my son's life. Lyme is known as the great mimicer. It can mimic many neuro disorders including ASD, ADHD so why not PANDAS? Im glad I kept at it thanks to the inspiration from Pacificmama, SF mom, Elizabeth, Kim and lymemom and many others. I kept searching and Dr Jones was my answer. DS is a new child, still herxing and having many many challenges but I know Im on the right track now.

Tons of luck. Its really really worth checking out all the co infections in depth before going on the 1- 2 monthly IVIG or 12 weekly IVIG. Once infections have been ruled out then one final IVIG would be a good option to kind of settle things down.

Multiple IVIGs seem to be a wonderful treatment for many kids but for some only seem to stir up stuff and keep the disease process going.

[Fixit]

lyme mom your box is full

[pamsboy]

Question, is there a reason why IVIG is contraindicated in Lyme disease? And are higher dosages better than low or medium if not contraindicated? Did you see Dr Charles Ray Jones for your son? How did you diagnose Lyme and/or coinfections?

thanks

Pam

[sptcmom]

Question, is there a reason why IVIG is contraindicated in Lyme disease? And are higher dosages better than low or medium if not contraindicated? Did you see Dr Charles Ray Jones for your son? How did you diagnose Lyme and/or coinfections?

thanks

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.

[saidie10]

Thanks so much for the responses and the advice about Lyme testing. I am still trying to understand how it could be Lyme though if it seems so obvious that DS's neurological exacerbation's are a result of strep exposure or infection?

[KeithandElizabeth]

Hello:

 

I just wanted to say that our son's initial "PANDAS" moments were also in response to strep exposure only. I always knew when he had strep just in the way his behavior changed because he never got sick or had a sore throat. When he did not reach 100% with IVIG's, we discovered the lyme and mycoplasma. He is now getting closer to 100% with the correct treatment for each infection. The right antibiotic combo has helped more than the IVIG's. So, please do not rule out lyme and mycoplasma or another possible infection based on symptoms.

 

Elizabeth

Edited October 11, 2010 by KeithandElizabeth

[philamom]

Hello:

 

I just wanted to say that our son's initial "PANDAS" moments were also in response to strep exposure only. I always knew when he had strep just in the way his behavior changed because he never got sick or had a sore throat. When he did not reach 100% with IVIG's, we discovered the lyme and mycoplasma. He is not getting closer to 100% with the correct treatment for each infection. The right antibiotic combo has helped more than the IVIG's. So, please do not rule out lyme and mycoplasma or another possible infection based on symptoms.

 

Elizabeth

I'm sure you meant to type "he is NOW getting closer to 100%"

[KeithandElizabeth]

I edited!

 

Thanks,

 

elizabeth

[nevergiveup]

There are three or four moms whom felt monthly ivig made their kids symptoms persist. However there are many more on this forum whom see help from regular ivigs. Swedo did a study in SC, I believe the treatment was three ivigs. These children wnet into remission sooner than those whom did not get ivig. My neuro says ivig helps get rid of the symptoms, helps, but cures are mostly seen in younger kids. For autoimmune disease monthly ivig usually takes approx. Six months to see improvement. And who knows how long to see a cure. My advice is test properly BEFORe ivig, if no lymes give your child a chance to heal. But all of you lymes moms, ivig is not contra indicated for lymes. We all need to be careful not to knee jerk our kids treatment around due to several cases on this forum. I continue to hear things like "monthly makes kids worse". Its not true, actually, one high dose of ivig makes kids "worse" RIGHT Turning Back of Pages, or what did Dr K call it suicide time. Why is it that when its worse after one ivig" that's not considered worse. I can tell you my dd's first ivig she WAS worse, horrible. Far more than her second ......up to her 14th. Dr B gives monthly or bi monthly and he sees improvement, my doc has treated 8 kids and has seen improvement, Murphy has a doc in immunology whom has immune def kids on monthly (8 or 9) and he says it helps! Dr K does multiple ivig's for the older kids, even some younger. By far, my dd's first ivig was the worst! If your child is reinfected symptoms persist or exascerbate even on ivig. Sooooo just one other opinion, but I got lots of cases to back it up. This is all still very experimental, do your research, talk with docs whom have done one or two and monthly to see what they say. Also make sure you have insurance coverage before asking your docs opinion, cuz, I doubt he would recommend monthly or bi monthly if you have to pay out of pocket. Unfortunately, this does change what they recommend.

[saidie10]

Thank you again guys so much. All the support here is so amazing. We tested for Myco and it was negative so do I assume this is 100% accurate? Guess we should look into Lyme too. Could it still be Lyme though in my older son if my younger son is presenting with possible PANDAS too? I guess I wonder how they both could have Lyme if it is not just PANDAS or Lyme instead of PANDAS. So freakin confused and just trying to logically think all the decisions we make through!? Maybe we are over thinking and just need to be patient with IVIG response? UUUGGGHHH!!! Maybe I should contact my son's doctor and see if he would be willing to look into why my son may be presenting with tics again (as a reminder, my son's Immunologist is using my son as their initial PANDAS case and he is working with Dr. Cunningham). I have been hesitant to call him because I know he will need help to figure out what may be happening or what we may need to do next and I amost just want to schedule with Dr. B or Dr. L or someone else. It is not that I don't completely trust this doctor. Maybe he would want to do some bloodwork right now since my son is having symptoms? I guess he should be the first step though, right?

 

I feel like my poor son right now with my mind racing 100 miles a minute trying to figure this thing out!

[JGsmom]

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.

[JGsmom]

I forgot to mention DS also got strep throat which we tx'd w/Omnicef and Dr. B has put him on daily zith for prevention now. He dodid not feel the strep exacerbated the tics. DS also caught a mild cold, which has ramped up the OCD and defiance that I haven't seen for 10 months! Lucky me! Actually, I feel sorry for my son--can't keep him in a bubble unfortunately.