Need Advice.....

[Haileymadison]

Thanks everyone!! I took my son to the immediate care center and he does NOT have strep. Whew, that is a relief!! My daughter is acting Ok now! I think that I overreacted. She has been drama free for about 2 weeks, but today has been a bit on the moody side. She is having to share attention with her brother who has been away at school. At least I am hoping that is all it is. I can honestly say, she is a bit on the spoiled side. I have 2 kids in college and she was our SURPRISE. I was 41 when she was born.

 

My 22 year old daughter has undiagnosed OCD. She is a clean freak and a total perfectionist. She had a 2 year episode of bulimia in high school. She was a cheerleader and class president. She is getting ready to start Dental School. Although she hates her OCD, she credits it to her successes.

 

My 19 year old son is a math and science genius!! He is on a full scholarship at Indiana University. He is Pre-Med with 4.0 gpa. He has had a couple of mild tics for as long as I remember. He was an All-State football and baseball player and was being recruited to play football in the Ivy Leagues, until a knee injury his senior year of high school. He was Salutorian, Athlete of the Year, Homecoming King in high school.

 

I just thought that I should give you all a little history of my other kids. Although my older kids were never diagnosed with any disorder, it now has me wondering if something as simple as strep could of triggered her OCD and his mild tics.

 

My husbands family doctor is here in town. I think I will make an appointment with him and let him know our situation and hopefully get him to prescribe her some antibiotics. If that doesn't work, I will go to Chicago if I need to. I only live about 5 hours away.

 

Vickie, my sister in law thinks Pandas is just a few symptoms to a specific strain of strep. She doesn't see it as an autoimmune disorder. She told me that she sees about 1 patient every couple of months that have these symptoms. Some never have anymore problems and others just take antibiotics when they get strep.

 

Sarah Jane, I am anxious to hear about your sons IVIG. Where did you go? What Pandas doctor are you seeing?

 

Peg, I have read all of your post about 20 times in the past 3 weeks. My heart aches for you. I can't imagine trying to tackle Pandas as well as Lyme.

 

Thanks to all of you, I was able to diagnose my daughter very early in this process. I know that I may still have a long road a head of me, but for now she is happy. She is no longer urinating every 3 minutes, changing underwear 30 times a day or chewing yogart 100 times for fear of choking. She has had 3 weeks of peace and happiness!!

 

Does anyone know where I can buy some rapid home strep test?

[thereishope]

re:rapid strep test. You buy them online. This website was once posted by a trusted parent. http://www.docsavings.com/Merchant2/merchant.mvc?Screen=PROD&Product_Code=IST501&Category_Code=rpd&Product_Count=0

 

Also, any and all paranoia on your part is expected. Don't you feel a heck of a lot better you took your son in though? As for you daughter, even if she's been drama free for two weeks, you can still see a blip here and there as she continues to recover. It's when those blips worsen, spiral and don't correct themself n a couple days that the red flag goes up. Life becomes a totally different ball game now. You question what is "just your child" what is a possible exacerbation simmering, etc. But you know what, if she starts with a full blown exacerbation again, you'll probably kow it. you may think you forgot and are unsure, but you will just know. In an instant, I'd pick up the phone, call my hubby at work, and just start crying "It's back".

 

You can also give your daughter Omega 3's. That's good for the brain.

[Haileymadison]

Vickie, Thanks for the info! I just ordered a box of the strep test. They will definitely come in handy. I also want to use them on my son when he is home from school.

 

I am finding myself picking apart every little thing my daughter does and says. I am so paranoid that I don't even know what is normal and what is not!! If she crinkles her nose, I am like OMG she has a tic, or if she ask me something more than once, I am like OMG her OCD is coming back. I really need to chill out. I am driving everyone in this house crazy.

 

What do you know about OLE? I have read some really good things about it, but can't remember where I read it. I would like to get her on some kind of natural antibiotic until I can find a doctor willing to give me a prescription.

 

Also, I would really like to hear your story. I know he has been in remission since Sept. 09, but I have not been able to find how your story began!! I have read so much over the past few weeks that my brain is turning to mashed potoates. PM when you get a chance. It sounds like our cases are pretty similar.

[thereishope]

Stephanie2 has written some good posts on OLE. You can go to her profile and look up the posts she has begun and read up on it. As for the paranoia...sorry, no advice. I'm still paranoid! What I remind myself is that my son will not always behave and be perfect. He will have quirks and occassional odd behaviors. He's a kid. He's now 7 years old. If he behaved perfect all the time, then that should also be something one should be concerned about. I admit, I "test" him sometimes. I change up the bedtime routine, I say something that would have set him off before just to see how he reacts and make sure all is still well. I think that helps me keep my own sanity.

 

I messaged you my son's timeline. Hope it helps.

[peglem]

Vickie, my sister in law thinks Pandas is just a few symptoms to a specific strain of strep. She doesn't see it as an autoimmune disorder. She told me that she sees about 1 patient every couple of months that have these symptoms. Some never have anymore problems and others just take antibiotics when they get strep.

 

I wonder if she's seen the PANDAS Mouse Model paper? It pretty clearly demonstrates autoimmunity, as the mice developed PANDAS only from antibody infusions from other PANDAS mice (who got it from strep). Can't find the whole study right now (I'll look later if you want) but here is the abstract:

http://www.nature.com/mp/journal/v15/n7/abs/mp200977a.html

[thereishope]

Here's the link

 

Antibodies to Strep Throat Bacteria Linked to Obsessive Compulsive Disorder...

 

http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice

 

 

 

Also, here is the NIMH director's blog post, if you haven't read it yet

 

http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml?WT.mc_id=rss

[Haileymadison]

Vickie, my sister in law thinks Pandas is just a few symptoms to a specific strain of strep. She doesn't see it as an autoimmune disorder. She told me that she sees about 1 patient every couple of months that have these symptoms. Some never have anymore problems and others just take antibiotics when they get strep.

 

I wonder if she's seen the PANDAS Mouse Model paper? It pretty clearly demonstrates autoimmunity, as the mice developed PANDAS only from antibody infusions from other PANDAS mice (who got it from strep). Can't find the whole study right now (I'll look later if you want) but here is the abstract:

http://www.nature.com/mp/journal/v15/n7/abs/mp200977a.html

 

 

 

 

Thanks Peg, I will print the information off and give it to her on Thanksgiving. When I mentioned to her that Pandas was caused by strep antibodies attacking the brain, she gave me the GET OFF THE INTERNET look. I then realized even though she knew what Pandas stood for and even agreed that strep could cause OCD symptoms, she didn't realize the specific cause.

[peglem]

Vickie, my sister in law thinks Pandas is just a few symptoms to a specific strain of strep. She doesn't see it as an autoimmune disorder. She told me that she sees about 1 patient every couple of months that have these symptoms. Some never have anymore problems and others just take antibiotics when they get strep.

 

I wonder if she's seen the PANDAS Mouse Model paper? It pretty clearly demonstrates autoimmunity, as the mice developed PANDAS only from antibody infusions from other PANDAS mice (who got it from strep). Can't find the whole study right now (I'll look later if you want) but here is the abstract:

http://www.nature.com/mp/journal/v15/n7/abs/mp200977a.html

 

 

 

 

 

Thanks Peg, I will print the information off and give it to her on Thanksgiving. When I mentioned to her that Pandas was caused by strep antibodies attacking the brain, she gave me the GET OFF THE INTERNET look. I then realized even though she knew what Pandas stood for and even agreed that strep could cause OCD symptoms, she didn't realize the specific cause.

If you look at the pinned thread- "helpful threads" you'll see a lot of research links from Buster (mostly). Some of those might be very helpful. I have to think, being your SIL, she really wants to do the best she can for your kids- she just needs to see legitimate research instead of internet hearsay.

Edited November 22, 2010 by peglem

[EAMom]

Hi Haileymadison,

I haven't read all of the replies, so I apologize if someone has already said this...

 

I've found that pediatricians are taught (trained) to be fearful of long-term antibiotics. Our ped. was against our dd being on long term abs despite pandas severe enough to cause malnutrition/anorexia nervosa/hospitalization in a 7 year old. What helped us was getting confirmation from a specialist (s) (in our case, our local ped. neurologist and ped. rheumatologist) that long-term abs were okay in this situation. I think if these peds have someone "higher up" (meaning a specialist) say the long-term abs are okay...they takes some of the weight off of their shoulders and they are more likely to go along with the abs.

 

Have you considered a PANDAS specialist (perhaps Dr. T. or Dr. Latimer) where they confirmed that long term abs would be appropriate would help you case with your sister-in-law. Even a phone consult? I know Dr. Latimer is a believer in long term abs. (vs. Dr. K. who would more likely recommend IVIG, not sure if he'd rec. long term abs in this case?)

 

You might also listen to this podcast (with Dr. Latimer and a parent on this forum, Laura) http://www.voiceamerica.com/voiceamerica/vepisode.aspx?aid=44414 and have your sister-in-law listen as well. Dr. Latimer discusses how and why it's not always a great idea to wait around for a 2nd exacerbation before treating for PANDAS.