Strong, strong, strong- Lose it

[SSS]

Is this how it is with you?

You keep it together, push foward, plan for the recovery, work, and with this, keep the emotions at bay. Then those emotions come forward.

 

My dd5 has been having the psychotic breakdowns- where she rages, cannot control her body, fights, spits, attacks, can't control what she says: I hate you! You're rude! Stupid!

My DH and older son left last night to go to my MIL's. My dd5 has her breakdown. I can't get her off the floor for bed. My dd3, NT, is terribly abused, often.

I leave her on the floor. I break.

I call MIL's house, sobbing. I am scared. I am scared of brain damage. I think my NT dd3 is going to pick an abusive husband. Someone on here once said: It's like living with an alcoholic- you never know. Whole family is sick.

I'm losing it- DH gets on the phone. I can't do this anymore. I need help. I am planning everything- 1st IVIG upcoming weeks- did the steroid- meanwhile, trying to keep her functioning in real life- I am terribly afraid most all the time.

Time passes. Put PANDAS dd5 to bed- she 'snaps out' talking charming, she doesn't remember! Asks: why didn't you brush my teeth? You forgot to comb my hair!

I am scared for her brain.

She falls asleep, with melatonin I had to force her to take earlier in her rage.

I watch the Autism One conference DVD 2010 of Dr. B and Lynn Johnson. When she talks about her son with PANDAS, how it's not 'just sneezing 25,000 times a day' like with her daughter, but the exorcist moments, not knowing, how they spent $200,000 in 18 months trying to get this beautiful boy help, he doesn't fit the pysch. boxes correctly, he moves to another home because of the effect on the family...

 

My whole 'keeping it together' part is crumbling fast.

[butterflymom]

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Edited February 3, 2016 by butterflymom

[SSS]

Thank you Tammy--boy, can I relate. Hope your son continues to do well- sending out PV's-----

Yes, I am giving ibuprofen 2x a day- I try to go without, no way we can. It does make a difference. We are in the process of booking the IVIG right now- looks like next Monday/Tuesday- I have to arrange child care for my other 2- although after last night, my in-laws are willing to drop whatever/take days off to help out in any way they can- so, next week.

Thanks for the support. Just having a place to write this helps.

Edited February 23, 2011 by S & S

[Joan Pandas Mom]

Please don't worry about brain damage. She is still so young. I know how hard it is, but try to take one moment at a time. Whenever your mind goes to the future, brain damage, resisting treatment, etc. stop it in it tracks. Focus on her getting well and staying well. She will. You have lots of time. Where can I get the autism one conference DVD with Lynn and Dr. B?

[JAG10]

Oh Tammy...as soon as I read HOMEWORK I knew you were in trouble! Next time you sense yourself getting backed into a corner like that, give him a ridiculously short, obtainable time period (like he needs to write for 1 minute or he needs to tell you aloud what he would write) so you can save face and then let it go! Especially at these young ages, teachers don't want ANY kids, especially our kind, battling over homework.

 

In our experience, albeit my dd is 11, the post ivig uptick in symptoms is like a pendulum that loses its energy with each swing or at least that is the way I'd describe the first ivig last May. Her 2nd was 3 weeks ago and the uptick in symptoms has been very mild. She's just coming off of a very, very bad cold that started with a sore throat (dun, dun, dun) and then developed into severe sneezing, congestion, coughing, ect. Interestingly, she's never been a sickly kid; weird to have low IgA and low IgG and hardly ever be "typical sick", but a really bad cold in the winter is a typical occurrence, so maybe it's a good thing

 

A good friend from this board sent me a card after her first ivig, it read "When you feel like you're at the end of your rope, tie a knot, hang on and swing!"

 

.....well, at least hang on.

[momcap]

I can absolutely relate! That's exactly how it is with me. My DS had his worst day in over a year yesterday. I feel numb. I could have written your post. Hang in there. We are all going to make it!

[butterflymom]

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Edited February 3, 2016 by butterflymom

[butterflymom]

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Edited February 3, 2016 by butterflymom

[SSS]

Please don't worry about brain damage. She is still so young. I know how hard it is, but try to take one moment at a time. Whenever your mind goes to the future, brain damage, resisting treatment, etc. stop it in it tracks. Focus on her getting well and staying well. She will. You have lots of time. Where can I get the autism one conference DVD with Lynn and Dr. B?

 

Google Autism One Conference 2010 (or just go to Autism One web page) I ordered 3 different PANDAS DVD's that were presented there-

 

Tammy- thank you for sharing, never an overstep, it helped me-

 

Thank you everyone--

[peglem]

I wanted to point out that Lynn's son was untreated because they didn't know about PANDAS until he was already out of the house and refusing help. Your child is still so young, and with treatment there is every indication that she can heal and recover. You will get through this, really. Don't be too hard on yourself- we all lose it from time to time.

[nicklemama]

Sarah- I could have written your post many, many times, except my DS has no siblings that have to endure a rage. It took us a year to get a proper PANDAS diagnosis. My DS has, thankfully, done very well on high dose abx. He hasn't raged since we started abx in mid Oct. There is hope and he shows no signs of brain damage. He's in first grade working a couple of grade levels above. Aside from some lingering anxiety and ocd (which do not have a major impact on his life) he's pretty much back to the little boy we once knew. All I can say is hang in there. Treatment will help.