OCD: Not Related to Strep?

[emma1]

About a year ago, my daughter had an episode (that is a distant memory now) of tics and ocd. It was dramatic. I had absolutely no idea what was going on!!!!! The doctor diagnosed strep-induced symptoms because of high strep titres. We started antibiotics, and most all symptoms stopped (they were minimal, anyway). So, we have been going along, and then my daughter confessed that she has been having terrible thoughts and she has to count in her head, or she might say something awful, or something bad might happen! I cannot "see" anything -- except she was a little spacey.

 

I have tried zith -- which I really thought would help -- but no change. No other symptoms -- just these terrible thoughts. Our doctor is now saying that perhaps the ocd is not PANDAS-related, but "regular" ocd. I think I have finally pushed him to the extent of his expertise here, and frankly he isn't helping.

 

I am freaking out (quietly and privately, but freaking out just the same). My daughter did not want to go to school today, as she said she cannot concentrate. She says the ocd is ruining her life, and that she is never going be able to lead a normal life. She said her thoughts are "bad" and that she must be a bad person! (I did ask if they involved her hurting herself or someone else, and could tell by her shocked expression, that was not it -- I felt bad asking, but thought I needed to know.) It is breaking my heart. She is the sweetest, kindest girl you would ever meet. She is 16 -- a good student, cheerleader, soccer player, popular, and before this, literally had everything going for her.

 

I have started SAM-e (thanks Cherie!) and have scheduled an appointment with someone who does CBT (am hoping she will actually go). I am still giving the zith, probiotics, inositol, some magnesium taurate, and I started zyrtec up again, in case seasonal allergies are playing a role. I have given gaba when she was speaking with me and got upset and was crying.

 

Any help would be appreciated. . . Is it possible that she had strep-induced symptoms and now has regular ocd? Did she ever have the step-induced symptoms at all? If not, then why did the antibiotics initially help? But if it is strep-induced, then why isn't the antibiotics helping now.

 

Sorry this is so long and disorganized.

[kkver]

She's 16 and still like a PANDA child that is little confusing. May be you wanna get her titer counts checked again and if everything seems normal you might want to go behaviour therapy route.

[Chemar]

((((Emma))))))

 

sorry I havent replied to PM yet...my hubby hasnt been well and I am multitasking

 

whether this is classic OCD, strep induced OCD or TS spectrum OCD ...all OCD seems to be in some way related to a deficiancy in serotonin, so hopefully the samE plus Inositol will begin to kick in. However, the fact that your daughter had high strep titres is to me indicative that this is the root cause of her OCD, even if she isnt still responding to the antibiotics

 

honestly, with my son it wasnt till we added the 50mg 5HTP to the mix that we got a dramatic improvement in his OCD so if you dont see an improvement within a few days on the samE you may want to do a trial. You will quickly know if it isnt a good fit for her ............ it is just one of those trial and error type supp. it does promote sleep so be sure to only give it at night

 

hoping the CBT specialist can help as well

[ad_ccl]

Sometimes antibiotics that once worked no longer worked as we found out with amoxycillin. It had worked well for a couple of years (although not as well as azith does now) but eventually the amox no longer had any effect and we went through 4-5 other antibiotics one summer trying to find out that worked - azith was our last ditch effort and it was a miracle for us.

I always felt that dealing with OCD would have been easier than the tics (I am sure they are equally difficult!) - but at least with the tics there was a clear outward indicator of how our son was doing - so much harder with OCD when so much is going on in their little heads.

Best of luck - hang in there - you will find the answers.

[peglem]

My daughter has a similar reaction to yeast (which is tricky to fight when on antibiotics) as she does to strep. She's more hyper when yeasty, more ragey when streppy...but there is a lot of overlap. She is nonverbal, so I have to guess based on behaviors what is going on. When she still has problems on zith- I treat for yeast and that usually resolves it.

[faith]

Emma,

How many times has your daughter had the strep? Just that one time recently and then you had the titers tested? I wonder if you could have that done again? See, if she doesn't continuously get that, you probably can't gauge if it is related, but I do think that whatever the symptoms, be it ocd or tics, that a strep infection could definitely make things worse or trigger symptoms, even if not a clear cut case of PANDAS. The only thing I can see you doing is hopefully doctor agreeing to trying different antibiotics, and if that doesn't lessen the symptoms, then you will have to go the route of some kind of therapy. At her age, it seems appropriate, since she is aware enough to tell you about it, then she knows something is not right and may be her way of asking for help.

 

I wish I had something better to say, but I do feel that because of her age, she is better apt to deal with this, and it may not be as frightening a thing as you are fearing. I pray you find answers.

 

Faith

[Chemar]

My daughter has a similar reaction to yeast (which is tricky to fight when on antibiotics) as she does to strep. She's more hyper when yeasty, more ragey when streppy...but there is a lot of overlap. She is nonverbal, so I have to guess based on behaviors what is going on. When she still has problems on zith- I treat for yeast and that usually resolves it.

 

thanks sooooo much for posting this peglem!!

 

you are so right about the yeast often preventing other stuff from working correctly.

 

Emma, have you ever had candida testing or treatment done for her? We have great success with Candida Clear by Now tho there are other anti candida remedies that have worked well for various members discussed on a number of threads here too. we have a link in the sticky essential threads 101 for a non scientific but helpful diy spit test to see if maybe candida infection is present. Antibiotics are known to promote yeast overgrowth when not used with probiotics so maybe candida is at work here!!

[emma1]

My daughter has never been typical PANDAS because this all happened when she was 15 -- but there have been documented cases of strep induced tics/ocd/adhd (PANDAS symptoms) in adults. So, as the strep titres were really high and the symptoms had started on a dime (as in one day, nothing, and the next day, OMG!) my doctor said we should treat with antibiotics. We went on amoxil and the symptoms went away; we stopped amoxil, the symptoms came back; we started low dose antibiotics, the symptoms mitigated but didn't totally go away; her sibling got strep, she did not get sick, but had increased symptoms -- all this led us to believe it was a PANDAS-like illness.

 

Then, we had this "burst" of ocd, which doesn't seem to be affected by the amoxil, or the augmentin, or the zith. But she is having none of the symptoms that originally caused me to rush her to the doctor -- I mean, one day she just woke up with a vocal tics and, at that time, a counting thing (for a reason she couldn't explain she had to count her steps and had to stop on an even number). Now, everything is going on in her head. To the outside world, she appears perfectly normal. (Though she is sure everyone knows something is wrong, and she is sure everyone thinks she is acting strange.) She had friends over during the week-end and it looked completely typical.

 

I am praying that the SAM-e helps. I am exhausted -- if this doesn't help, I'm not sure what to do. I do understand she could have had a PANDAS-like ocd and now she could have a "different" ocd -- but geezsh -- how many rare things could this child possibly get!?!

[Chemar]

Emma

did you see the info peglem posted re candida?

[emma1]

Cherie, I did see the info on yeast. I give probiotics and she eats yogurt -- would I need to use something else to actually "treat" for yeast?

 

Yeast is one thing I mentioned to my regular doctor, but he was surprisingly unknowledgeable (basically said that if she was not having gastrointestinal issues, then yeast was not a problem).

[CSP]

emma1,

 

I don't remember, but are you giving your dd high doses of fish oil? She should be on the high EPA that is also a plus for the OCD/pandas.

 

C.P.

[colleenrn]

Emma,

Have you tried a cephalosporin antibiotic? My daughter seems to do well on both Zithromax and Keflex (cephalosporin), but I recently read that some strep is becoming resistant to macrolides (zithromax being one of them). Just a thought.

Colleen

[Chemar]

Cherie, I did see the info on yeast. I give probiotics and she eats yogurt -- would I need to use something else to actually "treat" for yeast?

 

Yeast is one thing I mentioned to my regular doctor, but he was surprisingly unknowledgeable (basically said that if she was not having gastrointestinal issues, then yeast was not a problem).

 

yes Emma, if she has candida "yeast" infection then a probiotic will be helpful but will not kill the yeast. for that you need specific diet and anti-fungal treatment.......as mentioned I like Candida Clear by NOW best of all the products we have tried. seems to get the job done quickly and minimize the dreaded "die off" reaction

 

excellent book is The Yeast Syndrome by Walker & Trowbridge that includes good recipes for anti-candida diet