Anyone with a kid whose Pandas dissapeared with Puberty?

[Broo100]

Hi there, I am writing a year post Panda flare and my ds (11) is doing great, medicine free. However, I cannot stop watching him like a hawk. The smallest nose twitch makes me panic. I am wondering if I anyone here has a kid whose Pandas dissapeared with puberty. It is supposed to be a pediatric disorder but I hear from older people who have it. Anyone?

[pr40]

we need to define what it means being "great" exactly. one definition would be having manageable symptoms. I think most of us are going towards that. In other words, PANDAS is an over-reaction and we are hoping for just a reaction that does not intrude with a quality of life for an extended period of time.

How did your kid behave when he got sick? any pandas symptoms?

I would be surprised if you get a definitive answer to your question and not only because those whose children are doing great do not visit the forum anymore but because autoimmune problems are, at best, kept in check until there is a crisis when they emerge again. perhaps this thinking is not correct.

[Broo100]

hi Pr 40. While I am not doing any victory laps and am always worried, he lives 95% symptom free. During his flare up he had a very quick deterioration of many abilities. He could not focus AT ALL, he was very anxious (he is normaly a very mellow kid). He had debilitating tics that interfered with school, instrument playing and social activities and had some classic OCD symptoms, i.e. refused to drink from certain "contaminated" glasses, etc. The worst were the tics, loud, painful and all over the place. Relentless. It was awful. Nowadays, I notice a little twitch in his nose or a small throat clearing but it is because I am hypervigilant. I am sure a normal person would not notice. I have a strep kit at home and test him once every couple of weeks. Anyway, I was hoping for some stories of parents whose kids had "graduated" from pandas with the onset of puberty. After all, it is supposed to be a pediatric condition.

[pr40]

we'll see if you get any stories.

I would urge you to do other things while he is doing so well. do 23andMe test. that will give you a good picture of his methylation and what it needs.

adopt a healthy life-style and diet if he has not done that already.

kids get PANDAS because two or three different things coming together. and so is with the "cure," several things have to improve for symptoms to become manageable.

I am happy for you that your son is doing so well.

[Dedee]

My oldest son was diagnosed at age 6. When he was 11 he had a T & A and finally went on continuous antibiotics. This was when we saw the most improvement of his symptoms. From the time he was 11-16 there was very little PANDAS activity. Mostly just occasional moodiness and some mild depression during the teenage years. So at age 16 we weaned him off of antibiotics. He is now 17 (almost 18) and still doing well. He is a straight A student, planning on going to college. He still has some moodiness but over all he does well. I'm not sure if I would call him completely recovered. The reason I say this is only because I suspect that he struggles with his moods more than the average child. I say that " I suspect" only because he doesn't talk to me much about his feelings. I try to ask him but he always denies it. This coming from too many years as a PANDAS child talking about OCD and Anxiety feelings I suspect. However, all things considered.....meaning all the things he has been through, he is doing very well and is over all a great kid. If a physician evaluated him I'm sure they would think he was perfectly normal. Most Mother's think I am so lucky to have such a nice son who never gets in trouble and does so well in school. Of course, they have no idea how far we have come.

 

I hope that your son has a smooth road ahead. I think it's important to stay on your toes with a plan in case of a flair. I believe for us the T&A and the continuous antibiotics played a huge part in keeping my son well. I know some parents are concerned about too many antibiotics but for my oldest it was absolutely what turned him around. It sounds like what ever you are doing is working so keep up the good work. Best of luck.

 

Dedee

[LNN]

Broo100 - Most whose kids get and stay well only check in on this forum occasionally. Many here have kids who haven't reached puberty so it's hard to answer your question. My DS11 is in a great place, off antibiotics for 6 months. But like you, I will watch like a hawk and have a doctor I can call the minute I see something that's cause for alarm. I'm considering supplementing with some herbals that are antimicrobial (e.g. Samento) during the winter but haven't decided. I don't consider my son "cured" but rather in remission. I won't consider things in the past tense until we survive a few winters symptom-free but I do believe that day will come eventually.

[cobygurl]

Broo100, could you tell me what a strep kit is and where do you get one?

 

Do you then deliver it to the doctor?

[momcap]

I believe I had PANDAS (onset early teens). I ended up with a bipolar diagnosis. In my late teens I went on tetracycline for 2+ years for acne. My "bipolar disorder" disappeared while I was on abx. I struggled with moodiness and mild OCD after that for a few more years, but it was manageable without meds. By my early 20s it all just went away. I'm 35 now, and finally living life without looking over my shoulder wondering when and if "it" is coming back. So if I really did have PANDAS I suppose I outgrew it - not with puberty, but with adulthood.

Edited September 26, 2013 by momcap

[3bmom]

I think with what we all have gone thru it is hard not to watch them like a hawk. I have heard that the immune system matures in puberty so if all the stressors are addressed,food, bacterial and viral infections, environment, etc. the body stops it's overreacting with excessive inflammation and may reboot itself. Look at Saving Sammy. I think before we had so many environmental factors this was true and that is why uninformed Dr.'s say, "they will grow out of it".

 

My oldest DS ( not Pandas kid) was a great student and amazing athlete. In college he became ADD, overwhelmed, and constant anxiety causing extreme exhaustion. His Dr said he was depressed, Dr. T at last years PANDAS conference said his Chronic Fatigue is PANDAS left untreated. He had HSV-6. His titers were 16x normal and low titers for Rocky Mtn Spotted Fever and positive on Lyme culture. Also low testosterone for a 19 year old!

 

He is doing so much better. Maybe it goes into remission or maybe we all are like this with certain things dormant only to show up based on our family tapestries when the immune system is overloaded.

 

We are so much ahead of the game though because we know blood work is important, nutrition paramount and exposure therapy is available to break any emotional bonds.

 

Enjoy the time, try to live in the present and know you have tools/Drs tucked away.

[nicklemama]

Wow, this gives me hope. DS son is nearly 10. He's doing well but not 100%. Has a cold right now and we are seeing moodiness. Like LLM says, most who have kids who've outgrown it are no longer on this message board.

[rowingmom]

My oldest DS ( not Pandas kid) was a great student and amazing athlete. In college he became ADD, overwhelmed, and constant anxiety causing extreme exhaustion. His Dr said he was depressed, Dr. T at last years PANDAS conference said his Chronic Fatigue is PANDAS left untreated. He had HSV-6. His titers were 16x normal and low titers for Rocky Mtn Spotted Fever and positive on Lyme culture. Also low testosterone for a 19 year old!

 

He is doing so much better. Maybe it goes into remission or maybe we all are like this with certain things dormant only to show up based on our family tapestries when the immune system is overloaded.

 

 

 

3bmom - was your eldest son treated for his infections, or did he recover on his own?

 

We are almost 6 months out from abx, but I too am waiting, waiting......will it come back?

 

When my sister was young she had several symptoms that seem very familiar to me now. Her joints were very flexible, she had dark circles under eyes all the time, her hair was thin, and she was small and slight. She had (and still has) a wonderful memory - steel trap even. She was very emotional and would fly into rages. I learned to give in to her when she wanted something, even though I was 2 years older. She had some slight OCD, needing things just so, bed tucked in, no light coming through the curtains at bed time, but nothing terrible. I do remember our mother, on occasion, saying that she couldn't take my sister's behaviour, and would actually threaten to send her to boarding school. In high school my sister developed bulimia and this went on for about 10 years. In her early 20's she was on Prozac for a while but eventually gave that up. After that she seemed to recover from whatever her problems had been. Dark circles gone, relatively happy, outgoing. Still the smartest in the family.

 

DD is similar in many ways, but seems to be more impacted. I hope we see the same permenant recovery my sister has had.

 

Thanks everyone for the hopeful stories.

[T_Mom]

I will throw our experience in here, for what it is worth--as it does seem to me, that there may be something to improvements once kids go through puberty.

 

Our older d is now 15. She had sudden and severe episodes, when exposed to strep in others, and/or illness in others for about 4 years. She had pheresis, followed 4 months later by IVIG and her symptoms abated, slowly fading completely. Around the same time puberty had finally "settled" and she was definitely on the other side of puberty when we could see what appeared to be a recovery-- Due to finally hitting the right treatment for her?...puberty?..or a combination perhaps, but she has been symptom free now for about 2 years.

 

Our younger d (13) is finally, thankfully, coming out of the horrible episode of last year--post pheresis now 14 weeks.

 

Remain hopeful.

[PowPow]

We saw a similar healing with our 14 yo. Pex, 4 months later ivig, then about one year to 18 months later, there is no sign she was ever affected. She is clearly done with puberty, so maybe the timing coincided? I wish I remembered for sure.

[3bmom]

I am still putting my hope on puberty since we are addressing the health of his immune system. My DS is 14. Yesterday at football two moms said their boys had strep and of course they "can't" miss practice. So far so good. He is on a low dose of Ery. And still stable. . He use to react to anyone in the vicinity that was sick.

 

Rowing Mom, I started to treat my older son but the Dr gave him so many meds he said forget it. Since then that Dr (also my Dr) suddenly passed away. My older son did Paleo/ caveman diet with huge improvement! says he notices a difference if he goes off. This is great for yeast too which he had. He is on a low dose serotonin from his original Dr. Gave him acupuncture and Macca which is a hormone regulating herb. I think a root from Peru. I haven't given that to my younger son because of puberty and I don't know enough. He finally started on Valcyclovir and I think he feels better and has now asked if his younger brothers Dr. will see him. Working on getting appt. since he usually only does pediatrics.

 

A lot more difficult when they live on their own. Wish we had a one stop shop Dr. Who knew everything. Would love to give up being the Captain of this ship!

[Broo100]

thanks everyone. I want to be positive and it helps tremendously reading these stories. As for the strep kit, i took down the name from my pediatrician and ordered the exact same one on amazon. expensive but it has saved me many trips to the doctor. now i just call with results and they fill prescriptions if i need them . (less and less since I had everyones tonsils removed in the house). this is the link http://www.amazon.com/Genzyme-OSOM-Ultra-Strep-Test/dp/B0056B71DC/ref=sr_1_7?ie=UTF8&qid=1380374602&sr=8-7&keywords=strep+kit

 

good luck. i am heartned that more and more people are hearing about pandas.