Older PANDAS kids

[Iowadawn]

Hello all-

 

I am in touch with a family in Iowa who has a 20 yo daughter in Tulsa, OK. They gave me a brief hx (going back quite a ways) + for several strep infections, current tonsil problems, flairs with mono & other infections) and current sxs and have been investigating PANDAS. Highly suspicious and it certainly needs ruled in or out. I am trying to steer them in the right direction---pretty much telling them to get to one of the main PANDAS docs (they seem willing to travel). Can you PM me with your insight on the best doc with her age. This girl has had to drop out of college. Need a little input. I have been getting them connected to websites so they can get up to speed. PM me.

 

Thanks. Dawn

[Stephanie2]

Dawn, while I may have had a component of pandas which started in college (shortly after 3 Hep B shots...sigh), it hit me really hard at the age of 32 shorly after my oldest exacerbated for the first time. I think it was a lovely alignment of the stars: a bad strep strain, my BBB broken down from the stress of a pandas toddler, and constant exposure to strep.

 

Anyway, she could probably see any of the pandas docs really, but in the end after trying everything else with my boys (and lots of antibiotics, natural and standard, with me), we ended up getting fabulous results with homeopathy. Angelica Lemke is our practitioner and she is located in NYC and does skype appts (dont' have to travel at all, plus she mails the remedies to you). I highly recommend! I was very debilitated and am now thriving, as are my boys for the most part. And none of us need antibitoics anymore. We have been with her for 15 months.

 

www.asdhomeopathy.com

[ptcgirl]

I just spoke to dr b about adults with Pandas. He is te one I woul turn too. I wonder if a lot of adults with OCD are really suffering from the effects of infection.

[tpotter]

Dawn,

 

I would consider most any of the docs (maybe not Dr. K, because he's a pediatrician, and the 20 y o is not pediatric anymore.) But, I would also have the girl checked for Lyme (if not on abx, I would consider the new lyme test that is far more accurate.) Dr. B. and Dr. L. both consider lyme these days, but neither one treats it, and so many of us have found more than just strep. If they're wanting to get to the bottom of this as quickly as possible, I wouldn't ignore any possibility.

 

Once they know most of what they are dealing with, they can then decide on the treatment/s they want to go with, whether it's abx, IVIG, PEX, homeopathy, chiropractics, acupuncture, etc, etc. That's just my opinion.

[nicklemama]

I think its worth shooting an email to Dr K. They are much closer to him than anyone else. I believe he has treated older teens and young adults.

[Kiera]

Yes Dr K does treat adults! A 21yr old was getting ivig when my kid was there! Also his oldest was in late20s/30s I believe. Yes, he's a pediatrician but when it comes to pandas he's an expert of all pandas cases and is not closed minded about the "P" in pandas!!

[minimaxwell]

Dr. Jenike will do consults on adults.

[cobbiemommy]

I would definitely consider Dr B because allergies are such a big issues with many of these kids. If you control the allergy symptoms, you can control some of the inflammation and they feel much better. He seems so very thorough with his blood workup and I would trust him implicitly.

 

Immunotherapy can be performed wherever she is living. Also, it is usually covered by insurance.

[jaco]

I'm 18 almost 19 and get my IVIG from Dr L. She treats me just as she would a pediatric patient. I too had to leave college last year but as things are improving (low dose ivig every three weeks next week will be 5th) I'm looking into classes for the fall!!!

[Iowadawn]

Thanks for all the input. The family has had a consult with Dr. K and the dx is probably PANDAS. They are working with him right now and will have a treatment course in the next couple of weeks. Dawn

[Godsgifts]

We are fairly new to this and so I hope this question doesn't seem ignorant. We still have lots of questions and it seems that there are so many that I forget to ask them all during our doctor's appointments. Okay so DS12 has had pandas symtoms for about two years now but we just got diagnosed (b/c initially it was thought that he just had OCD).He started antibiotic treatment a few months ago which he did great on initially, but has since had returning symptoms now that they've changed his abx to Zithro. He has just started the first stages of going through puberty.I have read that after puberty it is much less likely for a kid to get PANDAS. But I've also read or heard somewhere that symptoms tend to taper a bit after the age of 22-24 yrs for guys, due to the maturing of the brain. Is this true? I worry about my son's future all the time and I'm hopeful that one day PANDAS will be a distant memory.I wonder if this is cureable, will it ever go away with treatment or did he suffer too long before dx and treatment that it damaged him permanately? Beth Maloney's son has given us a gleam of hope that one day my son can live a normal life without medication. So again my question is what happens after puberty? Once he reaches his mid 20's will his brain and immune system be strong enough to live without antibiotics?

[ptcgirl]

My Dd 12 has pandas and starte her cycles over a year ago. No change in pandas. If anything it is worse. I was hopeful that when he started the panda would go away. No such luck. She is seeing Dr B and she just had her first Ivig. Dr b told us Ivig will cure pandas for her but I know there is controversy with this.

[MomWithOCDSon]

We are fairly new to this and so I hope this question doesn't seem ignorant. We still have lots of questions and it seems that there are so many that I forget to ask them all during our doctor's appointments. Okay so DS12 has had pandas symtoms for about two years now but we just got diagnosed (b/c initially it was thought that he just had OCD).He started antibiotic treatment a few months ago which he did great on initially, but has since had returning symptoms now that they've changed his abx to Zithro. He has just started the first stages of going through puberty.I have read that after puberty it is much less likely for a kid to get PANDAS. But I've also read or heard somewhere that symptoms tend to taper a bit after the age of 22-24 yrs for guys, due to the maturing of the brain. Is this true? I worry about my son's future all the time and I'm hopeful that one day PANDAS will be a distant memory.I wonder if this is cureable, will it ever go away with treatment or did he suffer too long before dx and treatment that it damaged him permanately? Beth Maloney's son has given us a gleam of hope that one day my son can live a normal life without medication. So again my question is what happens after puberty? Once he reaches his mid 20's will his brain and immune system be strong enough to live without antibiotics?

 

Unfortunately, I'm not sure anyone has a finite answer to your question because the PANDAS dx just hasn't been around long enough for all the success stories to have been followed, and you're probably right: there're probably a lot of mis-diagnosed kids out there carrying labels like OCD who, in truth, suffer from an errant autoimmune response to some trigger.

 

Rest assured, though, that there are other older teenagers and young adults here on the forum who, similar to Sammy Maloney, have achieved a state of balanced health to the extent that they are leading "normal" lives . . . going to school, hanging out with friends, etc. Hopefully, one or two of them will chime in here again, though they're off living their lives for the most part and not checking in on the forum all that often anymore.

 

My DS was diagnosed with PANDAS at 12 after having been given an OCD diagnosis at age 6! He's now 15 and doing fabulously well (knock on wood). From our personal experience, I think the onset of puberty actually exacerbated his PANDAS struggles and made it difficult for us all to get his emotional, mental and physical states regulated. Heck, puberty makes a mess of many "regular, normal" kids, so I can only imagine what it can do to a kid with other things going on! Anyway, there's much to be said for tenacious, consistent medical treatment, therapy (to supplement staving off the OCD behaviors) and maturation, both physical and mental. My son seems to be traveling a path these days very similar to what Beth described of Sammy, so like you, I feel hopeful for his future and grateful for all the support and interventions this PANDAS community has given us for the last 3 years. You have every reason to continue to hope for the best and keep reaching for it. And don't get discouraged if/when an antibiotic's positive impacts appears to wane. Maybe it's the wrong antibiotic, or maybe the gains are still coming as before, only now they're more subtle and gradual. Keep a journal and note any and all "changes," however small; that way, week by week, you'll be able to read back and be a little more objective about how things are going.

 

Hang in there! Good luck!

[jaco]

Godsgift-

First off I completely understand where you're coming from with the " will this get better" question and like the people above me have said, no one quite knows. But I can tell you I am 90% better. The 10% left are remaining questions about where the infection is, and some obsessive anxiety food stuff, and just general not quite exactly where I should be...i'm sure my mom could explain it better. My story is pretty long, feel free to pm me..but I did not see improvement until the ivig courses...low dose every three weeks. As far as puberty goes, we're fairly certain I got the recurrent strep infections when I was 15-16 and it was set off by another (unrelated to strep) infection right around when I turned 17 and then sudden onset first showed up in anorexia and then a general detoreation. (I'm almost 19 now) But I am sooo my better now, it just feels so great to say it, I can hardly believe it sometimes.

The journal thing is a really good point. I went into see my psychiatrist and she asked me about the night rituals and nightmares and I was like wow I had totally forgotten about that. She said its common, as soon as you stop having a symtpomn your brain kindly forgets it was ever a part of your life.

It will get better, hang in there. Your kid will have the lfe you have always dreamed for him, this is the rough patch but it will make him be able to get through anything. I really believe it..

Hugs to you and your son!!!