Has anyone's child 'outgrown' PANDAS yet?

[brooke]

Since the P stands for pediatrics, I'm curious if anyone that still visits this forum has a child that has past the pediatric stage and this just goes away? My other thought is, just what makes this a pediatric event? Does it have to do with post-puberty children not getting strep, or does it have to do with hormones developing during puberty? My son is 12, I guess I'm a skeptic, even though he had IVIG three weeks ago, I just will never be comfortable. I will always feel like we are one infection away from PANDAS. Even now, I'm not even sure the IVIG worked.

Will I EVER relax again? My son gets serious serious, life threatening RAGE with PANDAS. Right now he's 12 and 140 pounds, I can't imagine him being 15 or 18 and maybe 200 pounds and me try to physically restrain him.

For what is it worth, my 16-year-old was just diagnosed with PANDAS. He is not completely through puberty, but well on his way. IHis case has been relatively mild compared to the severe onset of my 8-year-old who had the horrific rage, ADD, OCD, Anxiety. A lot has improved since we did IVIG in July 09 and started Augmentin. I too had a very difficult time restraining him. He is 8 and weighs 95 lbs, and was up to 100 lbs before IVIG.

I have been told that it goes away, or they "outgrow it". I am kind of stumped about what I should do with my older one though. He has OCD/anxiety and tics mostly, and fortunately for him, the ocd has helped with school.

 

I am seriously interested in finding out if I have PANDAS@!

[dcmom]

Brooke- I am interested in your older son. I have been suspecting pandas for my supposedly non pandas dd for a while. She would have had onset at the same time as younger pandas sister. Her issues have been much milder, but there. Mostly anxiety, some increased belligerence and anger, fear of germs and illness, loss of appetite, daily stomach aches, loss of interest in extra curricular activities, becoming over sensitive to classmates. Her Cam Kinase was normal 109 ( about 9 mos after possible trigger), but her other numbers from Cunningham are on the high side. We started her on zithromax daily. I know I have to wait at least 30 days to expect anything (as I always give this advice)- but it is hard. If it is pandas, hopefully we will see some improvement with abx and possibly a steroid burst next.... if not we will probably need to seek help from a psychologist at some point. I really don't know what to hope for.

 

All I know is we were on easy street as a family, until strep turned everything upside down Jan 09. We are all still reeling.

 

Did your boys develop this at the same time? or just diagnosed at the same time?

[matis_mom]

I will now look at demonic possession in a whole new light!

 

it was the best word to explain the different child we found ourselves with

It sounds weird but this whole metaphor makes it easier for us to accept the reality that "this is not our child"

It kind of makes it easier for him also to understand that "this is not him", there is something in there (the "beasties" as we sometimes called them) making him do things that don't make sense, and making him fearful of things that are not real. So sad

 

But reading all these posts I am more and more convinced this is an immune issue and for some kids it might go away at puberty, for some the antibiotics will do the trick, and still others will need IVIG/PEX to "reset" the immune system, or like it seems to be my son's case, there might be other underlying issues why his immune system is not up to par. It's just a matter of figuring out where you are, and that seems like such a crooked muddy road, no straight path to follow. We all seems to be going from doctor to doctor trying to find the answers for our particular child, and many times this is done through trial an error (try this antibiotic, now try that one, oh, let's try IVIG, let's change the diet) But we all just want this to be over with, so we keep trying.

 

Hang in there everyone, and keep sharing your stories, you never know who it might help

 

I know eventually we'll get our son back 100%. We are not there yet, but we've seen glimpses of the happy clown we used to know interspersed with this other fearful child who keeps asking us the same thing over and over again and spends hours in the bathroom

It really makes you feel like asking, "who are you, and what did you do with my son!"

[thereishope]

.

Edited October 18, 2016 by vickie

[T_Mom]

When my daughter had her first exacerbation it was two years ago and her behavior (and her sister's) was suddenly so bazaare that the first two weeks of November I wondered if they had been "poisoned" by something in their Halloween candy--Truly.

 

Then our d headed into full-blown anorexia for 3 months--age 9.

 

I wonder about the "growing out of it" as well, as our oldest (just 12 this week) is doing very well--full strength antibiotics, and very low level Prozac, but very steady.

 

If a child does have Pandas, I am convinced that Swedo's model of treating with immune modulating therapies and/or anti-inflammation antibiotics is effective--though it may take time. In our case, a month of full strength antibiotics and we started to see progress, and of course the steroids.

[bubbasmom]

DeAnn, my son does show signs of improvement. No where near healed but is improving. Couple of 'mini fits' but comes under control quickly. But we still have him on Risperidal for rage. So we have a long way to go.

 

Your son sounds like mine. He is also 12 and has rages that I am not even capable of describing. I am surprised that you are still able to restrain your son because I can't. He has many other symptoms as well. It is VERY dangerous for all involved! My son's psychiatrist told me a year ago when he was inpatient for being homicidal that he had never had a child like mine and thought that this could be the beginning of schizophrenia! Thank God I kept searching! They wanted to put my 11 yr old child on lithium. I politely declined and kept digging for the root of the problem. I am so glad that all of the parents on this forum have continued to search for the cause not just treat the symptoms. I was told that my child would not outgrow this because of the length of time he has had it, the severity, and his stage of puberty. It was explained to me that if it was not treated quickly and he went further into puberty (he hit puberty quite early) that this would be hard wired in his brain and he would be stuck with it. My son is scheduled for IVIG in a couple of weeks. I pray that this is the answer but I'm scared that it could come back too. Is your son showing any signs of healing?

 

DeAnn

[bubbasmom]

That thought has SERIOUSLY entered my mind several times. Enough I talked to my pastor about it!

 

My son's meltdowns and rages resembled a possesed person. I had that comparison enter my thoughts as well.

[melanie]

Since the P stands for pediatrics, I'm curious if anyone that still visits this forum has a child that has past the pediatric stage and this just goes away? My other thought is, just what makes this a pediatric event? Does it have to do with post-puberty children not getting strep, or does it have to do with hormones developing during puberty? My son is 12, I guess I'm a skeptic, even though he had IVIG three weeks ago, I just will never be comfortable. I will always feel like we are one infection away from PANDAS. Even now, I'm not even sure the IVIG worked.

Will I EVER relax again? My son gets serious serious, life threatening RAGE with PANDAS. Right now he's 12 and 140 pounds, I can't imagine him being 15 or 18 and maybe 200 pounds and me try to physically restrain him.

For what is it worth, my 16-year-old was just diagnosed with PANDAS. He is not completely through puberty, but well on his way. IHis case has been relatively mild compared to the severe onset of my 8-year-old who had the horrific rage, ADD, OCD, Anxiety. A lot has improved since we did IVIG in July 09 and started Augmentin. I too had a very difficult time restraining him. He is 8 and weighs 95 lbs, and was up to 100 lbs before IVIG.

I have been told that it goes away, or they "outgrow it". I am kind of stumped about what I should do with my older one though. He has OCD/anxiety and tics mostly, and fortunately for him, the ocd has helped with school.

 

I am seriously interested in finding out if I have PANDAS@!

 

I think it goes away if its treated properly My son is 15 definitly going through puberty still and is finally being treated for an illness he has had for a long long time

 

Melanie