Extreme exacerbation

[DaleS]

Thanks everyone! And Mary I hope your day is going better, and I hope Dr. K can help you and get you in earlier. And thanks for all the suggestions Nancy! I'm going to look into those!!

 

Sorry we haven't provided an update from our ER experience but it has been a long, long weekend for us and we have not had time to do anything but care for our dd. We got home after 1:00 AM (Sunday morning) from the ER. Our dd "slept" in the car all night but we don't know how much sleep she actually got. She got out of the car at around noon and immediately went into an outburst. My dw takes the brunt of the care since any contact or conversation with me is pure contamination and only prolongs the outbursts. The only good thing about this is a threat by me to touch our dd's medication usually gets her to take it. I feel so useless but my intervention just makes things worse. My dw has had to take care of our dd all day now and it is taking its toll. We are still trying to get her to settle down but like usual, she is coming up with one thing after another that isn't in place, not right, etc. It is almost 1:00 am and She isn't screaming right now.

 

Good news. Dr. K responded to our cry for help and we are now scheduled for IVIg on the 15th and 16th. Our dd has to get some more bloodwork before the IVIg and I don't know how that is going to go. After her experience in the ER (they drew some blood and absolutely tortured our dd by stabbing her over and over until they got the vein – the worst blood draw I have ever seen) she said she is not going to let us stab her with a needle for 1 month. Tomorrow will not be fun. The 15th can not come too soon.

[melanie]

I am so sorry to hear your pain.I understand how you feel .Most of us do,we really do.It doesnt seem fair that our children have to go through this and we feel that we are suffering.Just know that she will get better.Im glad Dr K is helping you.Im sure so many people on this forum are giving you advice.

 

Praying for you

Melanie

[tpotter]

Mary, I'm so glad that Dr. K. was able to get back to you, and get her scheduled quickly. These docs who are treating are kids are really, really awesome. Unbelievable caring. Also, if the rages are continuing, I have found that 1 - 2 T of peanutbutter or 1 -2 small handfuls of peanuts will stop are son's rages almost instantly, where nothing else works. We've been doing it for years. It's only temporary, but sure takes the edge off things.

[tired mom]

My heart breaks for you as your situation hits home. My dd targets me just as yours targets the mom. I was told once that a mothers unconditional love is the reason we take the blunt of these horrible rages. I have said so many times that with everything this disorder throws at us the rages are the most horrific.

As far as the medical system, there is nothing for our children when we need it the most. I have spent many hours in the ER when in crisis and have come home just like you -empty- and in the same situation that brought us to the ER in the first place. There is no safe haven for our kids when we need it the most. How heartwrenching!!

I hope things are healing for you and wish you much needed strength to get through till your appt. God Bless!!

[forjpj]

I'm so glad the IVIG is next week. I will be counting down the days with you!! I don't suppose the lab would still have any of your daughter's blood...not sure how that works.

Keeping you my prayers, stay strong, and Good Luck!!

Sarah

[Joan Pandas Mom]

Mary I hope things are going better. This is so hard. I hate to say it but I had to resort to Clonazepam, regularly. I gives him some temporary relief. It can be very addictive and cause some anger (which PANDAS does anyway). I felt the benefits ou tway the risks right now.

Hang in there. Please reassure your DD we are going to find the answers and help.

[Mary M]

I wish I could have each and everyone of you over for a "Thank you for your help summer BBQ". Without all of you, I don't know how we'd have made it through the last few days. DD is still struggling, raging but now rages are shorter in duration and there is less violence. And, yes, taking her for yet more bloodwork for Dr K yesterday was explosive. How we all manage through these episodes amazes me...so many of us with such extreme cases...I'd like to invite some researchers to come live here and watch this...maybe then someone could help us all.

[DaleS]

I wish I could have each and everyone of you over for a "Thank you for your help summer BBQ". Without all of you, I don't know how we'd have made it through the last few days. DD is still struggling, raging but now rages are shorter in duration and there is less violence. And, yes, taking her for yet more bloodwork for Dr K yesterday was explosive. How we all manage through these episodes amazes me...so many of us with such extreme cases...I'd like to invite some researchers to come live here and watch this...maybe then someone could help us all.

 

As usual, my dw spoke too soon. This evening, and the evening is just beginning, has seen extreme outbursts. We finally got our dd to take her abx and ibuprofen. She has not eaten much today. Her outbursts are no longer isolated to our house. She is calming herself down right now in the car but I am not convinced it will last.

 

Has anyone seen blueness in the lips during rage events? She does have dilated eyes but I noticed the blue lines in the lips this evening.

[rita]

thank you, tenacity... you are right. we have been thru our exacerbations as you have.. and yes, as a temporary relief, steroids have worked quickly to ease the inflammation until the ivig can be done.. if done for short periods and carefully, they are safe.