HLA B27 and autoimmune disease

[Phasmid]

Just something that I am wondering about. My son is positive for the gene HLA B27, which is associated with autoimmune disorders, including a disease called ankylosing spondylitis, a crippling lower spine disease. I read that about 8% of caucasians have this gene. Have any of you had your kids tested? The only reason to do so would be if your child was being screened for IBS or Chron's or something like that. I am just wondering if having the HLA gene renders one more prone to autoimmune problems in general.

[DonnaD]

My youngest sees a rheumatologist due to an elevated ANA and family history of MULTIPLE rheumatological conditions: i.e., ankylosing spondylitis, ulcerative colitis, Chrone's, Graves, Hashimoto's, Sjogren's, etc. I have Graves and chronic joint pain/slippage of joints/herniations, carpal tunnel, cubital tunnel, etc., they suspect is a connective tissue disorder. The Graves was treated with radioactive thyroid ablation and could write a book about trouble since then.

 

We have blood work right now for him that covers a lot, but no HLA B27. The interesting thing is that my son's rheumatologist mentioned this gene running in families with Rheumatic diseases, but, it's not on my son's lab order?? He also said that there are more that have been found beyond the B27. I definitely think the reason our PANDAS/PITANDS children are responding by creating autoantibodies to Strep or other infections may be due to this...thanks for this post!

 

Donna

[Phasmid]

Wow, Donna, you been thru the ringer. Sorry to hear your trouble. How are you doing now?

[parents4eyes]

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Edited July 17, 2010 by parents4eyes

[Phasmid]

Interesting about uveitis. My son was diagnosed with Coats' Disease, which destroyed his retina leaving him without vision in that eye for most part. Coats' is an idiopathic retinopathy that involves inflammation in retina capillaries, leading to leaking of plasma directly into the retinal membranes. Plasma contains cholesterols, which get deposited there in the retina, resulting in damage. They don't know what causes Coats'. I have, from the beginning, had a hunch that whatever bleeping infection he had at the time of his eye diagnosis, was also its root cause.

[rockytop]

for what it is worth- maybe nothing- yet..

I have a very severe PANDAS 12 yo dd --- HLA B27 negative.

However, my 11 yo dd is having some sudden onset sensory issues and high anxiety. She DOES have some arithritis problems- no JRA diagnosis- we are hoping it resolves- she is checked by a peds rheumatologist every few months and opthamology also. she takes Mobic daily for the arithritic problem. She is COMPLETELY freaking me out with the new sensory and anxiety and separation issues. If you know my story of daughter #1 you will know why. but I digress...

So my 11 yo IS HLA B27 positive. My little sister (31) has ankylosing spondylitis, my mom has crohns, her sister has RA and their mom has temporal arteritis. I have anti-phospholipid antibodies.

Also- another interesting side note.. we went to Hopkins, where they were very kind and sympathetic but do not really seem to understand or believe in PANDAS. As we were leaving the psychiatrist said-"oh.. is there a history of auto-immune disease in your family?" I think I know what wheels were turning in his head!

[DonnaD]

Wow, Donna, you been thru the ringer. Sorry to hear your trouble. How are you doing now?

 

Thanks for the response and concern...could write a book about our family's medical anomalies, including my own. STage 2B breast cancer in 2007 as well...boys on AS (regressive type) that I'm seriously questioning due to tics, OCD, anxiety, consistent with PANDAS. But, like everyone on this forum, we all plug away, trying to help our kids as much as possible, while setting aside our own needs. I do see light at the end of the tunnel due to everyone's help and list of doc's and find this forum to be a huge support and sanity check for such an elusive diagnosis MOST of the medical community either doubt or haven't heard of. It reminds me so much of many diseases/diagnosis considered quackery in the past. It's called the medical "establishment" for a reason...very hard to get these people to wake up, but with all of us getting word out, I'm positive things will improve.

[DonnaD]

for what it is worth- maybe nothing- yet..

I have a very severe PANDAS 12 yo dd --- HLA B27 negative.

However, my 11 yo dd is having some sudden onset sensory issues and high anxiety. She DOES have some arithritis problems- no JRA diagnosis- we are hoping it resolves- she is checked by a peds rheumatologist every few months and opthamology also. she takes Mobic daily for the arithritic problem. She is COMPLETELY freaking me out with the new sensory and anxiety and separation issues. If you know my story of daughter #1 you will know why. but I digress...

So my 11 yo IS HLA B27 positive. My little sister (31) has ankylosing spondylitis, my mom has crohns, her sister has RA and their mom has temporal arteritis. I have anti-phospholipid antibodies.

Also- another interesting side note.. we went to Hopkins, where they were very kind and sympathetic but do not really seem to understand or believe in PANDAS. As we were leaving the psychiatrist said-"oh.. is there a history of auto-immune disease in your family?" I think I know what wheels were turning in his head!

 

What is the story of daughter #1...I'm new here, so am not familiar with everyone's story. I can tell you that my boys initially presented with sensory, anxiety, ocd, tics and separation issues that spiraled until I lost them. ONce on antibiotics for either strep or unknown etiology behind chronic sinus/ear infections, (probably also strep) they improved dramatically. I just couldn't get doc's to see a correlation between improvement in speech language, behavior, ocd and antibiotics. AFter reading everyone's personal accounts, I'm definitely waking up.

 

Just about every one of those you mention run in my family also, with the exception of the anti-phospho antibodies, but wouldn't be surprised if it is present with right blood tests. I did read in the PANDAS org site that rheumatological disorders run in PANDAs families. I guess either autoimmune issues and/or immune dysfunction in general would be common in our kids. I'm anxious to find out what other immunological issues crop up after visiting with Dr. L. I'm going to have her combine the lab slip from the rheumatologist my youngest is seeing with any of her tests. I hope it doesn't mean several tubes, but will do whatever it takes.

[rockytop]

What is the story of daughter #1...I'm new here, so am not familiar with everyone's story.

 

well, I guess it is not really a "story", but she has been very severely affected, non-functional for weeks at a time and has what I have seen termed "exorcist syndrome". It is a very true description! We have spent 2 years with various psychiatry and psychology opinions and medications and she has jsut gotten worse. Thankfully, we finally made our way to Dr L and she is now on steriods and zithromax and she is remarkably better. Still very affected by OCD and tics- noticeable even to strangers!- but I am glad that she is out and around strangers for them to notice. It was not that long ago she would not leave her room.

 

I hope you get some answers. My daughter also goes to a rheumatologist who is keen on the auto-immune aspects of PANDAS and she has suggested Enbrel as a possible treatment.

[airial95]

Wow - I didn't even catch this thread last month (of course, I didn't remember the name HLA-B27 as the genetic component to AS either - so it would be easy to miss...)

 

I just started a new thread discussing this exact thing and wondering about a connection.

 

http://www.latitudes.org/forums/index.php?showtopic=9206

 

One parent posted links to some interesting studies done - not relating to PANDAS specifically but it definately makes you wonder if there is a connection.