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elevated strep titer/anxiety, Pandas-very long

post #1 of 9
Thread Starter 
ok, not sure where to post this. here goes.

Recently my normal , very well behaved, easy going kid of 10 has been having a lot of anxiety, sort of like that of OCD-only the obsessions part. Very worried about small things that have never worried him before and needing reassurance. This whole thing started with his confession that he has been eating erasers at school for the better part of a year!!! (I know!) We were floored as he will barely eat normal food and the thought of him eating an eraser is unthinkable. He said it strted as a habit and now he just "does it" Then he confessed that another child at school told him what sex was and that she has been telling him about it since first grade!!!! We had no idea. We have done everything to overprotect him his whole life, so this was a shocker! Then after dealing with these two issues as best we could, the worrying started. I have ocd, so I kinda recognized it, but it was like one day he was fine, the next it was totally different. He usually acts like I am silly for all the worrying I do and has said that he's glad he's like Dad and does not worry!

Well, we took him to his ped because I was afraid of maybe a vitamin deficiency was causeing the eraser eating an I had heard about Pandas before and I wondered if this was the start of it. The doc treated me like I was an idiot for asking for a check of him. She told me that he did not have Pandas and when I asked her the second question about it, and maybe just getting some bloodwork, she asked me "why are you so obsessed with this?" Right in front of my son. I was so mad. she then told me he needs counseling and that then we may need to consider medicine if that does not help with his worrying! What the heck!

I left after she finally decided to do a CBC and I decided that I need a new pedi. ok, that was last week. She called me yesterday to tell me his strep levels were high-she refused to tell me how high, just said "it doesn't matter" and told me that she is going to treat it and to recheck in one month. Then she went on to tell me that "some" doctors are not in line with her and the whole medical community's thinking and I got the feeling she was trying to tell me to stay away from more natural thinking docs. The whole thing was very weird and left me wondering : Could this be Pandas? Is it something else and where do I go from here? Has anyone's child had elevated strep and suden onset of anxiety?

Sorry so long
post #2 of 9

I think she was probably implying that the link between strep and OCD isn't widely accepted in the medical community. He can carry strep titers after exposure so it could be completely unrelated and likely is in her mind. I don't know personally. I know newer research seems to indicate she might be right http://www.medicalnewstoday.com/articles/165854.php but there are people who have seen response with antibiotics. I don't know. I'd drop her either way. What a disrespectful attitude.

But I feel so badly for you. I have OCD too and I so wanted it not to happen to my kids but one of them is showing signs and I hate that so I identify basically. Ten is an age where their could be onset (though I would question that he might have onsetted sooner given the other issues you've mentioned and you're just seeing a spike now). I know my parents had no clue I had OCD until I was almost ready to graduate from high school when it flared. But knowing what I know now I can see signs from early elementary. My mom has OCD as well.

Here is what I think--it can't hurt to treat this like PANDAS (find a doctor who will) and see if you get a response. Cognitive Behavioral Therapy is the way to go with kids if you can find a competent doctor. If my son flairs I would travel to see someone. I think intervening early has better long term outcomes. Insitol (a b vitamin) has some pretty good research to support it's effectiveness with OCD (including in children) as well as anxiety and I would do that before an SSRI. I would do an SSRI though if my kid needed it to get things to the point therapy would help.

Mostly . I'm really sorry he's struggling and feel for you.
post #3 of 9
Thread Starter 
Thanks. I guess in my hope that he doesn't have OCD or any other Anxiety disorder, I am just hoping that maybe if strep can cause PANDAS that maybe it can affect some kids without causing full blown PANDAS.. I know it is a stretch, but I know how hard OCD is and I am dying inside about this happening to my baby. He has gotten much better, I think purging all those secrets he's been holding has helped, but I also know that OCD can wax and wane, too.

We started antibiotics today, and will recheck in a month, and in the meantime I am watching him like a hawk and trying to figure out what to do next as far as a therapist for him or maybe some kind of workbook to help us help him.

The doctor was beyond rude and we are def going to get him to someone else!
post #4 of 9
I certainly wouldn't be going back to that doctor. Not a nice attitude.
Mg also helps with anxiety.
post #5 of 9
Thread Starter 

What is Mg

I feel like a dummy, but what is Mg?
post #6 of 9
Originally Posted by TexasG View Post
I feel like a dummy, but what is Mg?

I would absolutely seek out an alternative-minded practitioner. Can you find a naturopathic physician or a homeopath? I also would be very reluctant to give abx right off the bat like that if he was having no symptoms of strep throat, until you found someone to really work with you on all fronts. Check out the book Healing the New Childhood Epidemics, by Kenneth Bock. He talks about PANDAS in there also.


Good luck and hugs to you.
post #7 of 9
I would also make sure you are repopulating the gut with good bacteria now, since you already started the abx. Take them several hours apart. I think sbgrace has said that Florastor, or Culturelle, or S boulardii are good for taking with an antibiotic.
post #8 of 9

My twin boys were diagnosed with PANDAS in Feb this yr after 5 yrs of misdiagnosis. They had full blown ocd overnight and unfounded fears, obsessions, rages, aural hallucinations and behaviour that became very difficult to manage. They ended up being hospitalised in May and as a result their PANDAS diagnosis has confirmed and have since had 3 IVIG's to help them. They are slowly recovering. It has been such a frightening experience to 'lose your children'. No one can quite understand how difficult this is until you are in the situation. There needs to be more awareness of this condition in the community. I had to resort to ringing an american doctor in Chicago to help us and he was wonderful! You need to make sure that your child takes prophylactic antibiotics too so the situation does not worsen.

post #9 of 9
Thread Starter 

I'm so sorry you've had to go through this.  I'm glad that you were finally able to find some help.  It can be sooooo scary and frustrating, especially when doctors don't know what it is!  You wouldn't believe the way we have been treated by some of them. 

We've since found a dr that seems to really understand it--as much as he can anyway, and also, we see a pediatrician that also believes in it and us.  So far he has had 2 episodes, each lasting several months, but thankfully the last one was not quite as bad as the first.  Seemed mild and I almost thought it was just anxiety over the coming schoolyear. ..knock on wood.  I am always on edge about it, especially if I hear that there are close friends with strep throat! 

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