Just now discovering PANS/PANDAS

[CRD1995]

I'm new to this forum and to PANS/PANDAS in general. I'm really just looking for any advice from anyone who has firsthand experience with this. I don't even know where to start! I'm still searching for the answers. My OCD appeared suddenly at age 4. My symptoms have waxed and waned from mild to severe over the years and I am now 19. At times my OCD would go into recession for entire years. I've just been reading all of the stories on here and there is so much that I can relate to! I know that as of now PAN/PANDAS doesn't extend to adults. However, just looking back on the time line of my life it seems more like PAN/PANDAS than regular childhood OCD. I have never been tested for Lyme but I had my fair share of tick bites as a child.

My most recent OCD episode occurred shortly after one of my roommates was sick. Just overnight, all of the OCD symptoms that had been dormant were back. I was devastated to say the least. I went to the doctor and was told that I have strep and an infection in my tonsils. I was put on 500mg of Penicillin x2 a day for 10 days. I saw improvement on the last two days but ultimately crashed upon going off of the antibiotic. I'm now on Augmentin 875mg x2 a day (I weigh 100 pounds). This is my second day of Augmentin. I am also getting my tonsils removed this week as I was told that they are holding a lot of infection. So far I haven't seen any improvement with Augmentin and I'm just looking for hope! Any advice about what I could do differently? Tests I should get? I'm willing to try anything at this point. Also interested if anyone has any experience with PANDAS and tonsillectomies

[searching_for_help]

Yes, my almost 22 yr. old dd has PANDAS/PANS with OCD, intrusive thoughts, extreme anxiety, anorexia, exercise anxiety, etc. I know Dr. Jory Goodman has written articles on how adults can have PANDAS. Honestly, I think most all things considered under the psychological field are caused by infections, deficiencies, etc. Dr. Goodman also promotes T & A to help with this. I know that some on here have had good success with that.

 

That being said, our dd had a T & A when she was 20, and we didn't see any noticeable improvement. But like I said, I know some here have seen great improvement, and honestly, it's best to get them out. But, if you continue to have problems, continue looking for the source (often sources) of the problem. My dd is being treated for viral infections, mycoplasma P, yeast/gut issues, clostridia, and finished treatment for h.pylori. Started her back on Augmentin due to concerns over boyfriend possibly spreading strep or something. Guess it would be rude to ask him to be tested for all these things? I think her doc will probably look into Lyme more closely, I know her results are consistent with many on here being treated for Lyme. Also want you to know she doesn't have the physical symptoms of these illnesses. Only the mental.

 

Hang in there and don't give up finding an answer. We spent years with docs and psychiatrists and therapists, and no one had a clue. It wasn't until I searched for an integrative type doc (actually, she's a nurse practitioner), that we were able to find someone willing to test and try things.

 

I'm sure more parents will get on and share their experiences.

[rowingmom]

I don't have much advice for you because our daughter's neurological/psychological presentation was more Tourette's/ADHD with little OCD involvement, but I am so glad that you have been able to associate your OCD episodes with infection.

 

DD's PANS reactions were caused by bartonella infection, one of the several possible lyme coinfections.

 

A huge leap past the mainstream paradigm! The archives are a great source of information.

 

Welcome to the forum!

Edited May 5, 2014 by rowingmom

[nicklemama]

There are actually some PANS doctors treating young adults. You seem to be going in the right direction. Get those tonsils out. Our son's ENT is seeing improvement in his PANS patients that remove the tonsils. Its not a cure but all of his patients have seen some form of improvement, from mild improvement to major improvement. If you have a history of tick bites, I'd recommend consulting with an LLMD, as well. My son has been found to have lyme disease.

[WorriedDADNMOM]

Your story sounds all too similar. Any tics or anxieties???

 

I too, suggest trying to find a Pandas specialist by going to -------- http://pandasnetwork.org/resources/providers/

 

Most, I think, would be willing to help....especially if you have documented exacerbation and have the link to infections. They will be able to do a comprehensive overview of you and your history and do what you need. Document as much as you can remember and more current stuff.

 

For us strep and Mycoplasma were issues. 2-3 30day stints on Azithromycin then several months of MWF Azith to debulk the infections and chill the immune system out. We also are on prophylactic PenVK which has been a huge help.

 

Let me know if you have any questions. There is a wealth of knowledge on this forum........Welcome and good luck!!!!!

[CRD1995]

Thank you everyone! Worrieddadnmom, my OCD episodes are accompanied by twitching. I don't have any verbal tics but I do have muscle spasms. The more anxious I get, the worse the twitches get! However, my condition is mostly mental. I just worry and obsess about pretty much anything. I have had compulsions in the past though. Many, many panic attacks. Growing up I had terrible separation anxiety. I absolutely could not sleep alone! My first OCD episode occurred at age four when I became afraid to eat. I thought that I would choke on everything! As of now, I'm not afraid to eat but I'm incredibly underweight because I just don't want to eat. It's very interesting to see that other young adults have had success with this. It gives me hope that I might be able to figure something out! It seems like I should have made this connection by now. I have been on just about every SSRI possible, prozac, paxil, zoloft, and celexa yet I am still having these problems. I found it interesting that the ENT that I saw said that the infection in my tonsils could be leading to overactive adrenal glands. He said that many of his patients have anxiety from this and don't realize how sick they are until after the T&A. I'll update everyone after my surgery. I just happened to come across PANDAS because I am a Psychology major. I'm so glad that I did.

[PowPow]

Have you tried clomipramine?

In very small doses (25mg) it has been very helpful for my young adult sized daughters with PANS.

[rowingmom]

Wow! A Psych major with an understanding of infection-related psych/neuro symptoms. You could change everything for struggling children and their parents!

 

Best of luck with your tonsillectomy.

[CRD1995]

I'll admit, I'm a little bit afraid of the tricylics so I've never tried Clomipramine. I will consider it though. As of tomorrow I am probably going off of the Prozac and onto Lexapro. I'm about to the point where I'll try anything. Rowingmom, I think with this next generation of grads we will start to see a lot more acceptance of infection related psychological illnesses. If I can figure some of these connections out for myself I will be sure to make it known! There is so much about psychological health that has yet to be discovered.

[WorriedDADNMOM]

How long on the augmentin?? Have you tried zithromax??I would suggest trying to control inflammation.

 

Also, I encourage you in your fight to get better. For us and our dd's, we had the gambit.......adverse reactions to vaccines, strep, mycoplasma, EBV.....so we really with the help of a DAN in Gahanna, OH threw everything at the situation.....except abx, all natural supplements to boost immune system, protect against bacterial and viral infections, control inflammation, eliminate known triggers to immune system(cats and milk allergies).....you name it, we were gonna do it.....but it was all at the direction of the DAN/Integrative Pedi.

 

Maybe you could reach out to some Pandas doc via at least a phone consult if you cannot find one close.

[MaryAW]

Get your vitamin D level tested (25-hydroxy) and work on getting your level up to between 50 - 80 ng/ml. This will strengthen your immune system. Supplement with high quality Omega 3's like Nordic Naturals. You want more EPA than DHA. These are excellent antiinflammatories. Also take some high quality probiotics like Florastor - healthy gut, healthy mind. Good luck

[CRD1995]

This is my 5th day on Augmentin. I've never tried zithromax but I'll remember it if the Augmentin doesn't seem to do anything. I actually was taking a probiotic but I felt worse each time that I took it. I looked on the back of the bottle and the probiotic contained a strain of strep, streptococcus thermophilus. I researched it a little and although streptococcus thermophilus is considered a positive bacteria,I just don't want to go anywhere near something with the word streptococcus in it. I'm tired of strep! So I am staying away from that particular probiotic but I will look into the one that you listed.The one I took seemed to make me worse. I take Omega 3's but probably not the quality kind. I also supplement with magnesium and a vitamin B complex but I will look into the D vitamins as well! My immune system is pretty weak.

[rowingmom]

The gut is a very important part of the immune system. For this reason we eat as organically as possible. Glyphosate may be responsible for killing important gut microbiota.

 

http://nhrighttoknowgmo.org/BreakingNews/Glyphosate_II_Samsel-Seneff.pdf

 

http://www.mdpi.com/1099-4300/15/4/1416

 

http://articles.mercola.com/sites/articles/archive/2014/02/04/roundup-glyphosate-toxicity.aspx?e_cid=20140204Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20140204Z1&et_cid=DM38971&et_rid=417896252