CVID Treatment and PANS

[Leighann]

Can anyone speak to their experience with having a child who carries both a diagnosis of CVID and PANS? I am wondering (hoping?) that my 12 y/o son's PANS symptoms will improve and stay better now that we have discovered that his hypogam is actually part of CVID, but I can't find any information out there on  how monthly IVIg for CVID manages PANS symptoms. I am freaked out that my needle phobic kid will have to receive monthly IVIg for the rest of his life, but if it means that he can actually get better, have some quality of life, and have periods of remission, then we have to do it. I just wish I could read something that clues me in to what to expect and our immunologist (who happens to have published a study that indicates that adult patients with CVID have lower quality of life than patients with diabetes and coronary heart disease) said we won't find any other published articles out there. I am hoping to find anecdotal evidence.

My son has struggled with PANS symptoms since he was 8 and we have tried almost everything without significant success (CBT, all classes/types of psychotropic medications, antibiotics, allergin-free diet, supplements, CBD, NSAIDS, corticosteroids, essential oils, and 3 rounds of high dose IVIg when in times of high level flare because we thought we were just dealing with PANS). The only intervention that has helped was IVIg, but he would relapse within weeks of finally coming to his wonderful, normal, smart, funny self. Then it would be months of trying to get insurance approval and waiting for the IVIg to kick in because we were trying to get insurance approval through hypogam.  We would see our kid come back and within weeks he would get sick and have a rapid decline. With the CVID diagnosis, I now understand why. Is there anyone out there who has a kid with both CVID and PANS and have been doing regular IVIg for the CVID? Did the PANS symptoms improve and stay better over time?

[bws1565]

Oh wow. 

I see you really did try everything...

We are having nice results with homeopathy.  It is a long slow process but digs deep.  We are 10 months in.  We probably needs another year or so.

 

[Leighann]

Thanks for replying. I am so happy for your family and your child that homeopathy has been beneficial! It takes a lot of dedication of parents to make this work and it is amazing that it is paying off for you! I truly wish you the best. 

From all of my research, supplements, diet, etc. do not really work for CVID because if the body can't produce the immunoglobulins, then adding more of any type of supplement, adding or deleting things from the diet, etc. won't make a difference.  I think this is why all psychotropic medications have been ineffectual as well as dietary changes and supplements. I think we have a pretty unique experience and just hoping to find someone out there who also is experiencing this. 

[demeter]

Hi Leighann,

     I'm not sure why I decided to search this website today as my son has been healthy for four years now, and the Pans, medical life seems so long ago.   Then when I read your post my heart went out to you and your son.   It sounds so so similar to our family's story.  The good thing is we have a great ending as our son has truly been well for over 4 years.  I feel you can get there too.  

     We too had tried everything for over 6 years.  This included everything you can imagine, antibiotics, antivirals, diet changes, homeopathy, T&A, CBT, supplements,  vitamins, parasite treatment, and I'm sure I'm forgetting stuff.   We also had the CVID and PANS diagnosis.  We did monthly IVIG for a year.   However, after all this he still had the anxiety, fear, OCD,  bizarre behaviors that can accompany PANS.

     I believe in the end after addressing all of his medical issues the missing piece that changed our lives for the better was taking him to Rogers Behavioral Health's partial hospital program. Which consisted of full days of intensive CBT/ERP for six weeks.  Our son made immediate improvements then a full recovery to his normal healthy happy self that we hadn't seen for years.   Since he finished the program over four years ago we have yet to see any regressions in behaviors, even when he gets sick. 

     If you search my name (Demeter) you can see my other posts and responses to others about our story more in depth back in 2016.   Please also feel free to reach out to me with any other questions you may have.   My son is also available to talk with yours if that would be helpful. 

     Anyhow, I wish you the best and know and trust you will get your son healthy again!

Sincerely, 

Wendy