PANS - I'm not coping

amother

Thu, Dec 05 2019, 6:16 pm

I'm not coping. Still in denial / anger stage.

My kid is unraveling and I'm unraveling with her.
Rage, Ticks, sleep issues, ticks, incontinence, ticks, defiance, irrational behaviours, simple annoying behaviours, more ticks, dangerous behaviours. Agressive towards everyone around including me and the baby. (The hardest to deal with) separation anxiety, general anxiety, ocd like symptoms and more.

I'm angry at her. I know she is ill not bad. But some of the behaviours are bad.

I've finally reached a "relative calm" after a very very tumaltous upbringing and working hard to get to a peaceful existance. And now this. My house is a war zone. At this point u think I have ptsd from her PANS.

I told the kids were gonna bake cookies. The dough is in the fridge. Instead im hiding in my bedroom crying. And 2 of the kids bedtime is in 45 minutes. They still all need baths too.
I'm not coping.

amother

Thu, Dec 05 2019, 6:27 pm

amother [ Periwinkle ] wrote:

Can you feel the world engulfing you in one big hug. Let the feelings come. Cry. Sending all my love. I see you. I know this place.

And to heal her costs MONEY.
Money we dont have. We are already in debt from another kids medical expenses. (Massive Deductables)
We dont even have where to take it from.
Tomorrow we have an appointment that'll be $400+ in cash.
I have no clue where the money will come from.

amother

Seafoam

Thu, Dec 05 2019, 7:40 pm

PANS is hell. I'm so sorry. I've been where you are many times over. It's normal to feel angry at your child even if you know it's not her fault. On a practical note, have you started treating yet? Is she on motrin and benadryl around the clock? If you're on facebook you can join pandas parents, invaluable support and advice on there. Hang in there.

amother

Chartreuse

Thu, Dec 05 2019, 8:18 pm

amother [ Seafoam ] wrote:

My daughter was on Motrin during PANDAS flare ups.
What does Benadryl do? And why round the clock? Does that mean she can use non drowsy antihistamine during the daytime?

amother

Scarlet

Thu, Dec 05 2019, 8:27 pm

This could have been me today...my pans child was haywire and I have a newly diagnosed one as well, so two people feeding off each other...
War zone central...
Spent a half hour in bath just now...still came out feeling like I'm gonna lose it

amother

Forestgreen

Thu, Dec 05 2019, 8:32 pm

OP hugs. I am so sorry you are going through this. Many mothers here have said PANS is curable.
I know this may not be the forum, but can someone explain to me what is going on with these poor children? Where is this coming from and why are so many children struggling with this Sad

. Is it when they have strep and weren't given antibiotics (for whatever reason)?

amother

Seafoam

Thu, Dec 05 2019, 8:34 pm

amother [ Chartreuse ] wrote:

My daughter was on Motrin during PANDAS flare ups.
What does Benadryl do? And why round the clock? Does that mean she can use non drowsy antihistamine during the daytime?

There has been some research showing that histamine released by mast cells plays a role in the inflammation that causes pans/pandas symptoms. Many people find natural and allopathic antihistamines helpful in controlling symptoms during flares. Non-drowsy forms can work well too, some people try several types until they find one that works. This doesn't work for everyone... Round the clock during flares just means dose as often as safely allowed in 24 hours.

amother

Thu, Dec 05 2019, 8:48 pm

amother [ Seafoam ] wrote:

Im kinda new to this. Not the symptoms. The diagnosis....
It's been going on for a while. Didn't know of pans. Only pandas. Ped was saying its "controversial") And when she was tested for strep via bloodwork it all came normal.... that was a year ago.....
I will see how she is in the morning (pray she sleeps thru the night)

She has had weird reactions to different over thr counter meds/vitamins. So im scared to start something new.

She was on abx for a month. But is off it now a few days and im loosing it.

amother

Thu, Dec 05 2019, 8:53 pm

amother [ Scarlet ] wrote:

I'm pretty sure my other kid has it too.
I have been suspecting it for a while.
But lately she started with this awful tick.

The ticks are driving me insane! Its NEVER quiet in my house. Always some weird noise. And the bickering! Omg.

amother

Burgundy

Thu, Dec 05 2019, 10:46 pm

OP, I wish there was an easy answer. I have one kids battling this for 5 years, another one newly symptomatic for 5 months. It is the absolute worst kind of h*ll for a family to live with. If it's any comfort, tonight was particularly challenging here too. Sent my 8 yr old to bed at 6:30 because it was just too much. Then I let myself fall asleep when I was putting my other ones to sleep because I needed to just get out of the situation. Sending you so many virtual hugs. I'm in the trenches with you.

ra_mom

Thu, Dec 05 2019, 11:05 pm

amother [ OP ] wrote:

Was she doing better when she was on the antibiotics?

amother

Amaranthus

Mon, Aug 09 2021, 8:59 pm

My child has has sudden extreme bout of anxiety/ panic/ ocd and other symptoms. No known tic or strep. Does anyone have a doctor to recommend in tristate area who will test for both and also truthfully tell u if neither seems likely?

imorethanamother

Mon, Aug 09 2021, 9:39 pm

amother [ OP ] wrote:

Your pediatrician is right, it is a controversial issue. And what you said about the $400 - that seemed off to me. Is the appointment with someone who won't take insurance?

I hate to ask, but are you sure this is all due to PANDAs/PANS? This sounds like someone on the spectrum.

amother

Seafoam

Mon, Aug 09 2021, 9:42 pm

amother [ Amaranthus ] wrote:

Where in the tri state area are you?

amother

Forestgreen

Mon, Aug 09 2021, 9:47 pm

imorethanamother wrote:

There is a very high correlation in children on the spectrum and also having PANS but PANS can have those symptoms alone.