Hearing things/Fears

[Guest Guest123]

I noticed more discussion on OCD here than on the OCD board, so I have a question in case someone can answer or refer me.

 

When my 8 year old daughter got strep, she got big sudden fears, which went away when the medicine kicked in. This has happened 2 times now. The scary part is that said she would hear footsteps or something during the episodes. At first I sort of privately panicked (I thought only schizophrenics did that), but read that OCD kids can even hear 'voices' as part of their obsessions.

 

The first time it went away completely with the sore throat, but now, 6 months later, she got strep again, and though the fears went away at the time, and now 2 months later she commented on hearing footsteps when she was playing in our basement alone. It was probably us upstairs, but she is convinced it was right next to her. It wasn't bad because she got me right away and she was back to 'normal' momentarily.

 

I supposed I do need to ask her if her throat is sore again come to think of it--maybe it didn't go away (I had it too, and my tonsils are feeling sore again). But if it is clear and this is some lingering thing (I assume from the potential auto-immune issue), are the same supplements that Chemar and others mentioned for OCD (5HTP, St. John's Wort, Inosotil) appropriate? Or any references on behavioral methods to deal with this type of issue?

 

Thanks.

[Chemar]

Dear Guest 123

 

Have you had her tested as possible PANDAS?

 

When the strep induced OCD/tic etc issues do occur with PANDAS, there isnt necessarily a strep throat involved......there are a number of different strep viruses and it is the "lurking" or stealth type ones that are tested for re PANDAS.

The test involves a comprehensive blood culture.

 

If you need some info on PANDAS here are some useful links

The first is about a study that is now very much under way with pretty clear cut evidence for PANDAS. My son was under the care of Dr Murphy for a time when they were testing him as a possible PANDAS case(he was -ve)

 

http://www.ocdhope.com/strepOCD.htm

 

 

I dont always see eye to eye with the NIMH, but their info on PANDAS is informative, and they are funding Dr Murphy's excellent research.

 

http://intramural.nimh.nih.gov/research/pdn/web.htm

 

http://www.homestead.com/westsuffolkpsych/Pandas.html

 

HTH

 

As to the supplements that help with OCD, yes! they really do help BUT you really should first rule out PANDAS as they possible underlying cause. In that case, you need to eradicate the virus(es) and then see how the OCD does.

The supps cause seratonin elevation, amongst other things, and if your daughter is in fact showing strep induced OCD rather than seratonin deficient OCD, it would not IMO be a good idea to give her the supps when what she actually may need is the correct antibiotic program.

 

Do remember that antibiotics do also kill good bacteria etc along with the bad stuff and so always give probiotics with antibiotic treatment

[Guest Guest123]

Hi Chemar,

 

Thanks! I do think PANDAS is involved and have read a number of studies on it. I didn't realize there were actual accepted tests to diagnose PANDAS--I will surely check this out. I also didn't know that there was an actual treatment for PANDAS, I thought that since she went on antibiotics for the strep--she was effectively 'treated'. I did read about prophylatic treatment, but the studies I saw read said that they weren't effective (though I did read that a simple round of antibiotics for a carrier might help. I have heard about the experimental immune procedures--and they are a little scary, but something to find out more about. Thanks for the links.

 

 

Neither pediatrician that I spoke with knew anything about PANDAS when I told them (we moved, so she had 2 different ones in this time period) about the NIH research--very frustrating! Since they can actually test for this (what test do I ask for, and can I ask his normal pediatrician? ---Though one of them thought I was weird when I mentioned PANDAS. Do I need to search for someone who understands PANDAS to run a test? Any ideas on what type of doctor might be most likely to know about it? (to help find that needle in the haystack).

 

I know what you mean about antibiotics causing their own problems--I never knew their was a solution for this. What are probiotics, and how to I get them, ie at a healthy grocery store? Is it a food and if so are certain brands or kinds better? Is it sweet like fruit yogurt where a young child can eat it?

 

Thanks again for your help,

Guest123

[Chemar]

Hi again

 

I am going to ask Ronna to pop in here as she is very knowledgable about PANDAS after her son's experience.

 

As to Probiotics...yes, you can buy them in supplement form at health stores, or Wholefoods, Chamberlins etc.......the best ones are kept in the fridge. They are "healthy" bacteria that replace the good ones killed by antibiotics.

 

Yoghurt is an excellent source of probiotics, but better to buy the plain kind (like Stoneyfield Farms) and then add your own fruit, honey, maple syrup and other healthy flavors.

[Guest Ronna]

Hi all!

 

I am very knowledgeable about PANDAS/Rheumatic Fever and PANDAS and I will post a long reply as to a certain extent my son is "atypical" but there is no question he had rheumatic fever in the summer 2001 which precipitated many of his problems.

 

If you can hold on for a day or two I will put something as thorough as possible together and try to consolidate much of my knowledge about PANDAS and how it relates to our son.

 

My family (and me) are down with the flu and I just need a bit of time to put something together. If you have any pressing concerns in the next day feel free to email me at: ronnascott@shaw.ca. I will try and include information about supplements as well. Please remember this is an evolving process for us right now as Kurt will be seeing infectious diseases this month and will be having a repeat ECHO on the 23rd.

 

Ronna

[Guest Guest123]

Hi Ronna, Chemar,

 

Chemar--thanks re the yogurt, and very good input about the additives vs making your own. I went to our store and they were loaded with garbage, how ironic since they are supposed to be healthy for you. It hadn't occured to me to make my own--I really love the maple/honey sweetener idea! I have been reading through a lot of the threads here--I feel quite guilty about being so ignorant about the additives until now.

 

Ronna--of course, take your time, and please wait until you are completely better. And good luck with your son (at some point I will know what ECHO means...).

 

We are okay right now because she isn't in the middle of an infection so I feel some of the immediate pressure is gone. I am trying to get educated because what really scares me is that the fears could get progressively worse or even return to the level during the strep infection. I guess I am hoping that precautionary steps could prevent progression.

 

I have read about PANDAS being a secondary condition from strep and about the autoimmune issues, and enough studies to believe it is very real. But everything was so theoretical with no advice to someone with a child going through what might be PANDA (other than to get the strep properly treated!)--including what kind of doctor might actually be an ally in trying to help.

 

Guest123