Anyone w/a child who has both CVID and PANS diagnosed?

[Vbakersimon]

Hi there,

 

My 6 year old has recently seen a pedi immunologist, who diagnosed him with PANS (and wrote that on his exam follow up appt sheet). My son has had Common Variable Immune Deficiency (CVID) since he was 2 yrs old, and has had 13 rounds of lower dose IVIG in the past to bring his antibody levels into normal range. Unfortunately, they're back down to abnormally low ranges again, but given the new PANS diagnosis, I'm wondering what the best course of treatment dose of IVIG would be for him this time.

 

Are any of you in this situation with your kids, or have been in the past? Did insurance only cover 'low dose' for the immune deficiency, but not a 'high dose' IVIG for the PANS diagnosis? What did the doctor recommend? What dose/frequency did you go with? Most important, how did you child respond to this treatment? We have our follow up appt in 2 weeks to discuss next steps with the pedi immunologist. Any info you can share would help me so much!!

 

Thanks!

Vanessa

[sf_mom]

Our DD has had immune deficiencies since the age of 2 as well in all subclasses inclusive of IgA. She is now 6 years old. She is also being treated for chronic infections of Lyme et al since the age of 3 1/2 years and is currently on combination antibiotics. She receives low dose (9 grams) of IVIG monthly. There is concern that 'high dose' IVIG might over stimulate her immune system given her infections and treatment regime. She looks fantastic right now but has had problems in the past when taking her off antibiotics = symptoms resurfacing. She is diagnosed with chronic Lyme, Bartonella, Babesia, FL1953, EBV, HHV6, Coxsackies, Heavy Metals and Botoxin Issues/Mold.

 

I am wondering if your child is on combination antibiotics and what infections were discovered for your DS other than strep? For her, huge advances were made when we addressed her zinc to copper ratios, treated her with combinations antibiotics and addressed methylation/detoxing issues. She does not have any PANS symptoms but her OCD has been minimal in the past.... she had more bi-polar, aggressions/impulsivity, mood switching. Both her brother's would be consider PANS, one with high function Asperger, one classic PANS with strep trigger.

[Vbakersimon]

Our DD has had immune deficiencies since the age of 2 as well in all subclasses inclusive of IgA. She is now 6 years old. She is also being treated for chronic infections of Lyme et al since the age of 3 1/2 years and is currently on combination antibiotics. She receives low dose (9 grams) of IVIG monthly. There is concern that 'high dose' IVIG might over stimulate her immune system given her infections and treatment regime. She looks fantastic right now but has had problems in the past when taking her off antibiotics = symptoms resurfacing. She is diagnosed with chronic Lyme, Bartonella, Babesia, FL1953, EBV, HHV6, Coxsackies, Heavy Metals and Botoxin Issues/Mold.

 

I am wondering if your child is on combination antibiotics and what infections were discovered for your DS other than strep? For her, huge advances were made when we addressed her zinc to copper ratios, treated her with combinations antibiotics and addressed methylation/detoxing issues. She does not have any PANS symptoms but her OCD has been minimal in the past.... she had more bi-polar, aggressions/impulsivity, mood switching. Both her brother's would be consider PANS, one with high function Asperger, one classic PANS with strep trigger.

Thank you for sharing your DD's experiences; that helps immensely! My son had his CVID diagnosed right around his 2nd birthday, as he was constantly ill and had just received his Autism diagnosis. His first IVIG was a few weeks after that, and the effects were immediate and profound - in a positive way. However, it was short lived. We didn't know yet about the Lyme infections. He was subsequently diagnosed with Lyme and Ehrlichia (positive Western Blot for Borrelia and Ehrlichia) at 2 1/2 years old. He has been on combination antibiotics ever since, except for a 4 month break when we attempted to take him off abx when we thought he was stable - huge mistake! He regressed physically to the point of rubbing his joints raw because they hurt so much, and he stopped being able to talk and couldn't stand on his left leg. Treating the Lyme and confections has enabled huge breakthroughs for him. He has had 2 strep infections over the past 2 or so years, but I think it's the Lyme that has triggered the majority of the issues driving the immune deficiencies and other problems.

 

Protocol-wise, we are doing combo antibiotics, an herbal detox protocol, gfcfsf and no processed food diet (I cook all of his foods and do green juicing), probiotics, adrenal support, standard vitamin supplements. From what you said, it seems like low-dose IVIG is the best option for kids in this situation. Makes sense regarding not overstimulating the immune system, particularly when it's already malfunctioning.

 

Another question for you - you mention that your DS has high functioning Aspergers. Does he have any medical issues that you're aware of, and if so, what are they? I have a son 2 years older than my youngest, and his medical issues are similar to my youngest, but much less severe. Always curious to hear others' experiences - I think mine got Lyme in utero from me as I've been in treatment for it since we all got diagnosed at the same time.

[sf_mom]

All our children have gestational Lyme. DD also had language regression and would have been considered ASD at 2 1/2. She had one word of 'UP' at the time. Thankfully all those symptoms have resolved. She still 'baby talks' - I think when she flairs. She see's a neurologist and her whole right side has been impacted. Very poor eyesight that wonders, low muscle tone, reflexes, etc. on the right side. Her neurologist thinks its nerve damage. Her twin brother is the one that would be considered high function Aspergers but again a lot of his issues have resolved with treatment.

 

As you may know, deficiencies in 1s and 3s is common with Lyme. All our children have deficiencies but DDs is the only one receiving monthly IVIG at this time.

 

Couple of things: A friend who's a son who has PANS with Lyme, Ehrlichia and immune deficiencies has made a huge turn around with Doxycycline. I believe he is 9. Apparently the best antibiotic for Ehrlichia is doxy but often avoided with kids. You might speak to your LLMD about a treatment trail. I can also put you in touch with the mother if needed just PM me. They are not currently doing IVIG.

 

Another thing to consider is some of the outlying infections that are common with Lyme that he has not been tested or treated for yet like Babesia or FL1953. Our LLMD refers to Lyme treatment as a game of 'Whack A Mole". You treat one infection and another one surfaces. Per one of our Dr.'s, the FL 1953/biofilms are found in almost every ASD child. However, I have spoken to several people who have tested via Fry Labs and are not positive. It is treated with Biltriside and Invermectin.

 

In our situation, most symptoms resolves quickly when there is a regression and antibiotic rotations are made. We typically rotate every 3 to 6 months at least one antibiotic.

 

Mold turned out to be a much bigger issue for us than thought. I highly recommend checking for mold via Real Time Labs Urine mycotoxin test and not Shoemaker panel.

 

We have done some oral chelation for heavy metals but have put that on hold to focus on mold detoxification. We will retry with IV chelation towards the end of treatment.

 

We were supplementing DD with zinc but it wasn't enough at 40 m.g. She has always had issues with her zinc to copper ratios. We now give her 120 m.g. of zinc per day plus copper at 8 to 1 ratio. This helped instantly. It is a Klinghardt protocol of higher dose zinc. We also nebulize glutatione with her. We track her vitamin/mineral deficiencies with SpectraCell as it is the white blood cell utilization of vitamin/minerals and not serum level.

 

I think shacking things up with your son's protocol, investigating other infections/issues further may provide the type of improvement you are hoping. Dr. Katz from CT spoke at ILADS last year about the use of IVIG and Lyme you might look to see if you can purchase the video of his talk.

Edited March 15, 2014 by sf_mom