Incidence of PANDAS in siblings

[gremlin44]

Has anyone seen or collected any data on the incidence of PANDAS in siblings? I have a nearly 8yo who was diagnosed shortly before he turned 4. I also have a 3 yo son....and that's who I'm wondering about. We have a clear genetic link to OCD--my father had fairly severe OCD. The 3 yo enters preschool this fall, which is where my elder son got his strep exposure. Needless to say, I feel like I'm going to be walking on eggshells this whole year, staring at his every behavior, wondering if it is the beginning of PANDAS. The older one just had IVIG, so this is on my mind a lot.

[gremlin44]

I mean, I am aware of multiple families here on the board with PANDAS siblings. I'm just wondering if there are any numbers on this.

[PhillyPA]

In the 200 cases compiled for the NIMH meeting I believe the sibling rate was around 8%. This is unscientific. And I do believe that was the number...but I have been so stressed my memory could have failed me. Both of my boys have PANDAS. My older son got it at age 5 and my younger son got it at age 6. I was mildly concerned that my other son would get it but I really thought "that couldn't happen to me." It did. In a way, it validates what we are fighting. It is one of the reasons why Lyme disease does not concern me or any other co-infection.

[Diana]

Hi folks - I will send the spreadsheet around via email and or someone can help me post it here. It was about 12 families out of 200. Usually though it may be due to the strain of strep. One child gets pandas and then a few months later - another child.

[Stephanie2]

Hi folks - I will send the spreadsheet around via email and or someone can help me post it here. It was about 12 families out of 200. Usually though it may be due to the strain of strep. One child gets pandas and then a few months later - another child.

 

I wonder if it is more likely to happen to the sib if they are boys? Does pandas occur more in boys? All I know is that both of my boys have it and they both developed it very young - 18 and 15 months. I guess what I mean is that if you have a child with autism and then you have another boy, you know to be extra vigilent. But if you have a girl, you may be in the clear. I wonder if it is the same in pandas.

[Fixit]

Has anyone seen or collected any data on the incidence of PANDAS in siblings? I have a nearly 8yo who was diagnosed shortly before he turned 4. I also have a 3 yo son....and that's who I'm wondering about. We have a clear genetic link to OCD--my father had fairly severe OCD. The 3 yo enters preschool this fall, which is where my elder son got his strep exposure. Needless to say, I feel like I'm going to be walking on eggshells this whole year, staring at his every behavior, wondering if it is the beginning of PANDAS. The older one just had IVIG, so this is on my mind a lot.

 

Well currently siblings are not a problem here...thanks God...and i hope that contiues...

But i believe my husband has pandas..and both doc b and L were somewhat interested in the fact that DH still gets has tics and gets strep 1-3 times a year at his age....

THey aslo took notes on DH family list of autoimmune conditiona, lupus, psorisi, arthristis, tics, step and impetgo..

And unfortunately..if i werent persistant..ds would left at TS....especially since dh tics...

But both are pandas and like michaeal tampa dh and other diagnosed with ts are actually pandas...

[saidie10]

DS7 diagnosed in June 2010...first tic was June/July 2008. IVIG this week!

 

Younger DS5 is following in big brothers foot steps...tested 179 on Cunningham.

[gremlin44]

So, should I just hold my breathe and wait? Should I test proactively? We haven't done Cunningham with the eldest, so I don't have a point of comparison for him.

[forjpj]

You know if you find a time where you have the "extra" funds...it probably wouldn't hurt to go ahead and test your oldest. My ds has pandas and after months...well really years...of dramatic symptoms in him, we finally got a breather with pex and realized my daughter probably has it. No obvious, tics, compulsions, just the potential for extreme irritability, defiance, etc. once in a while. We were blaming it all on the stress from her brother. Sent in her test...142. My ped gave her some steroids/antibiotics and she was like a different child. I was amazed at the difference!! I feel so bad because we didn't realize she was suffering too, but I also know I couldn't have handled the info any sooner than I processed it. Dr. L sees her Wed. to confirm, but at my ds's appt. last week she seemed pretty convinced they both had it. Incidentally, we are also looking at 2 of my nieces who my kids are very close to.

Anyway...didn't mean to wander...like I said...if you got the time/money to do the test, it can't hurt. It can only provide you with either

piece of mind or another piece to the puzzle!!

Sarah

[tired mom]

You know if you find a time where you have the "extra" funds...it probably wouldn't hurt to go ahead and test your oldest. My ds has pandas and after months...well really years...of dramatic symptoms in him, we finally got a breather with pex and realized my daughter probably has it. No obvious, tics, compulsions, just the potential for extreme irritability, defiance, etc. once in a while. We were blaming it all on the stress from her brother. Sent in her test...142. My ped gave her some steroids/antibiotics and she was like a different child. I was amazed at the difference!! I feel so bad because we didn't realize she was suffering too, but I also know I couldn't have handled the info any sooner than I processed it. Dr. L sees her Wed. to confirm, but at my ds's appt. last week she seemed pretty convinced they both had it. Incidentally, we are also looking at 2 of my nieces who my kids are very close to.

Anyway...didn't mean to wander...like I said...if you got the time/money to do the test, it can't hurt. It can only provide you with either

piece of mind or another piece to the puzzle!!

Sarah

My niece also suffers from this and we question if she became co-infected from my daughter who stayed at their house for 9 months during an exacerbation where the ocd was over the top in her own home. At the time my niece was 3 and started to repeat " I have to pee and you won't let me". I also question if my son had a mild form. Although my niece suffers she does not exibit the full blown symptoms my dd has and my son just remains questionable. So does that mean the symptoms decrease with each child that becomes co-infected with the original carrier who had full-blown symptoms? My head spins trying to figure it all out.

[gremlin44]

Extra money...ahahahahahahaha. :-) We just had IVIG with Dr. K and are going to be fighting with UHC to cover it, so we had to pay up front.

 

I think I'll just stick both kids in plastic bubble suits for the rest of their lives.

[thereishope]

I think according to Buster's survey,the prevalance of PANDAS is higher in boys. It was 65% boys, 35% girls.

 

In my family, so far it appears only one child has PANDAS. I have 2 boys, one girl. Now, the strep infection that triggered his first PANDAS exacerbation, only the PANDAS child had strep. We ruled it out in the other two. My two other children have since had strep with no PANDAS symptoms, at the same time as my PANDAS son's third strep triggerd exacerbation. But if the strain of strep plays a factor in starting this process, perhaps the strain in that case where all 3 of my kids were sick differed from the strain that start my PANDAS son's saga.