Sonshine

Thanks

DS17 has IGG, IGA and IGM that are lower each time we test. He responded to 6/23 serotypes after Pneumovax. He has specific antibody deficiency and selective IGM deficiency. IGG went from 1011 to 830 (694-1618) IGA from 140 to 90 (81-463) IGM from 40 to 18 (48-271) subclass 3 is low (23) I understand from immunologist that specific antibody deficiency can progress to CVID. Does anyone have experience with this? I thought I understood these levels should be rising into adulthood not dropping?

Can anyone who was at the conference share what they learned? In the past, there have been videos released to the public, but I understand the speakers declined to be taped. Someone on the forum mentioned there was new information regarding immune abnormalities. Always curious about the latest research.

DS has had a flare with a sinus infection also. He has had ear, throat, sinus, skin, UTI infections starting at 9 months and was recently evaluated for immune deficiency. He has specific antibody deficiency and we are following up with an immunologist for further workup. Is your son's pediatrician concerned about 5 sinus infections in the past 3 months? Is this the same sinus infection that is not being cleared by antibiotics? If your son has been treated for PANDAS in the past, will that doctor make a referral? Hopefully someone will come along and recommend a doctor in the DC area. Hope you get the help you need.

Maryaw: We re-vaccinated with Pneumovax 23 and DS17 did not show an adequate response. His strep titers increase with exposure to strep even on antibiotics. We are waiting to see immunologist in April. I wonder if he will recommend monthly IVIG? It sounds like your doctor mentioned that in your case, if abx didn't keep your dd infection free? If I might ask, were all her other immune function tests normal, IGG, IGM and subclasses? I wonder how common it is to have specific antibody deficiency and how it is related to pandas. Did doctor weigh in on that? Thank you for any input.

tj21 - happy to hear you got insurance approval. I hope you see improvement with IVIG. My son failed to show adequate response to pneumovax 23 and varicella. Referred to Dr. Lewis at Stanford for full immunologic workup and also hoping to be approved for IVIG. Best Wishes. Stay Strong.

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Kim: Thank you. Just got a call that our doctor uses the criteria outlined in the paper you provided the link to. DS only had a response to 7/23 and has been referred to immunologist for further workup. I know there was an old thread about this, but I wonder how many of our kids have an underlying immune deficiency? DS has had ear infections, sinus infections, skin infections (impetigo) and pneumonias (myco P) since birth. I'm quoting others who have said "something opens the door for PANS/PANDAS.

Also, DS shows protection for tetanus and Hep B but not varicella?

Can those who have been diagnosed with immune deficiency, weigh in? Do post vaccination titers need to be above a certain level? I've read greater than .35, greater than 1.3 and greater than 2.0 ? If values are below that but are 2 fold or 4 fold pre-vaccination titer, is that a sufficient response? DS has had symptoms of Selective Antibody Deficiency since birth.

pr40 - yes, encouraging for families that duration of illness was not found to be a factor in benefit from ivig.

http://pandasnetwork.org/research-highlights-positive-treatments-more/

Anyone have similar Moleculara results? Blood was drawn while DS was not in a flare. The only result out of range was tubulin (2000) which is twice the high end of normal. CamKII was 120. DS does not have tics, but does have OCD remaining even between flares. Does this mean he has anti brain antibodies in his blood and that his symptoms could improve with IVIG or PEX? I have read on the forum that beta tubulin antibodies are found in kids with sydemham chorea and PANDAS. Would normal controls have beta tubulin antibodies for any reason? Any input appreciated.

Maryaw: It was a difficult decision to make. The vaccine was given three weeks ago (so far no flare) and titers will be drawn again in a week. Doctor wants to rule in/out a primary immune deficiency and also if there is not an adequate immune response to the vaccine, insurance is more likely to pay for ivig.

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Is it common for kids with pandas to fail to show titers to their childhood vaccinations? DS15 received varicella and booster, but failed titer test. We agreed to immunize with pneumovax (very difficult decision and thankfully no negative response or flare) and retest for those titers 6 weeks later. We are waiting for those results. If there is no response, doctor feels she can get insurance coverage for IVIG. Anyone with have experience with this?

This is EXACTLY how my son presented at age 9 including the nature of the ocd thoughts. The following is a link I would take to your appointment. At the time in 2008 the standard treatment was 10 days of penicillin. Now the standard is 2 to 4 weeks. https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf The earlier your son receives treatment, the better. Yes, it is possible to recover 100% and return to baseline.

How many kids are getting ivig? Under what circumstances? Is it helping?

Is 4 week abx long enough?

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SSS and Nicklemama: Thank you for reply. We are at a crossroads with care providers. The labs for lyme were run by an integrative doctor with years of experience treating PANS/PANDAS and lyme. She prescribed Doxy. In the meantime, due to insurance reasons, we are not able to continue to see her. We were happy to get an appointment with a major reasearch university that treats PANS/PANDAS. They prescribed Cefadoxil to prevent strep but nothing else. In regards to positive lyme, myco igg and igm, HHV6 they said they "don't treat labs" I did get a call from them that same day requesting we come back in to discuss further, so maybe that message came from someone other than the doctor. We went ahead and started the Doxy. As parents, it's hard to know what to do when doctors give conflicting advice. I also showed band 41, myco igg/igm and a positive band for yersinia? There must be mandatory reporting for Yersinia because our local public health department called me and said yersinia is black plague and wanted to know if a doctor was checking for that. No. He said otherwise, it is only positive due to cross reaction with Borreilia. Can you tell me what LLMDs say about congenital Lyme? I had Bell's Palsy as a teen while camping in Northern CA. Many years later I had a sudden onset of Lyme symptoms (numb bottom of foot, muscle twitching everywhere, odd tingling sensations, the feeling of bugs crawling on my face, the sense that patches of my skin were wet, etc. My doctor diagnosed "anxiety" All symptoms resolved and in recent years the only symptoms I notice are randon joints that ache for a few months then recover.

DS16 with PANDAS has these labs for Lyme positive culture - Advanced Labs Quest Western Blot shows: IGM no positive bands IGG 41, 30 reactive under the 60% cutoff IGG 23 band 235% of cutoff Also positive Myco P IGM and IGG HHV6 6.93 Would anyone recommend testing with Igenix also?

We are also dealing with Myco. DS has very high IGG and IGM after 4 months of Clarithromycin. Something other than Azith may be required for your D. With possible Lyme, a combination of abx may be required. DS has a positive Lyme culture from Advanced Lab. You might check into this test due to your conflicting Lyme results. If positive, you will have grounds for more aggressive treatment. Interestingly, I had Myco P at the same time as my son. My IGG/IGM returned to normal with no abx treatment. His does not. Some here have had to treat Myco for quite some time. DS also had high streptozyme and ASO even with negative strep culture. He is getting strep infections somewhere other than his throat. He had onset of PANDAS with impetigo (strep infected skin) He has had constant ear/sinus infections since birth and doctors are suspicious that some of those were strep. Yes, it is possible to have PANS with Myco as only trigger, but it is also possible your D has had undiagnosed strep at some point. Regarding separation anxiety, my DS has also had this to an extreme. OCD can take many forms and in children it can look like separation anxeity, extreme bedtime difficulties etc. Do you have a specialist nearby. There is a thread here listing specialists and some of the members here can direct you.

Can some of you lend your expertise in how we should be treating? Just received these lab results. Quest Lyme IGG Western Blot--------positive band 23 also shows positive for band 41 and band 30 but appears the intensity is below % of cutoff? Advanced Lab Culture--------positive Myco IGM -------------2.62 (ref neg <.90) Myco IGG -------------2.46 (ref neg <.90) HHV-6 -----------------ODR 6.39 (ref neg <.75) Streptozyme ----------1:100 waiting for ASO DS16 has been off antibiotics for almost a year. We are taking these labs to appointment on Tuesday. Can anyone weight in on what we should be looking for treatment wise?