very very scary night

[nomoz]

My daughter has been sick with a fever all week, and until today, she was extremely calm, which has not been the case here for some time.

Today, she became increasingly agitated, feeling a bit better with no fever, but still stomach pain and diarrhea. Still, though, a good day overall.

But tonite, tonite around 10:30, after having fallen asleep on the couch next to her sister a few hours earlier, "IT" is back, and with a vengeance.

She woke up screaming that I had left her, and that she had to go to the bathroom. Screaming in an increasingly volatile way. Once in the bathroom, I couldn't get her to get off the toilet. She kept saying she had to go more, and then she began screaming about how she hates God -

continually repeating "When I go to heaven all I wanna do is punch God in his big fat face" and saying she hated us.. We are bad parents... she wants a better family...

Her tone would go from a whiney scream to the loudest highest scream she is capable of.

When she wiped herself, she did so with such force I thought she was going to hurt herself.

This went on until 2:00 am, with the wind down starting maybe 45 minutes prior.

This episode was strong, very scary. My 7 year old child is not my child when this happens to her. This rage, these thoughts, they overcome her.

Her eyes become dull, and clouded, her pupils really really small. The circles around her eyes go from black to red, and she really looks, God forgive me, psychotic, in these moments.

As I am writing this, I wonder - does this affect these children like a seizure? What happens to their little bodies during an episode like this???

And, post fever, there MUST be a surge of some sort that short circuits their brain for a time - there just must be.

 

She was recently on aug. for two weeks, but switched to azith. because micoplasm is still in her system. Maybe micoplasm is to blame.

 

I just wanted to share this with you, and wondering if anyone has experienced a strong resurgence like this.

Thanks so much, everyone, for being there.

[jewels]

Hi nomoz,

 

My heart goes out to you. Our first major PANDAS onset was very much the same. DD aged 4 would run around the house in the middle of the night, screaming, switching lights on talking complete nonsense and not always using the toilet!! The screams were so loud that we feared they would wake the whole street up. I often remembered praying for God to give me the strength to get through this and help her. This was totally NOT my calm quiet child that I once had.

 

Every child is different, so I can only give my personal experience here. We have never seen this reaction again since we changed her diet and allergy tested her (and gave her the supplements required).

 

Going GF was a big turning point. The following PANDAS attacks were bad, and we had hyper issues etc but I can say we have not seen the psychotic outbursts again.

 

If you can afford to go down the allergy/DAN route then this is the advice I would offer. I feel PANDAS kids are a big bag of mixed issues, and you need to look for other triggers.

 

I do hope you move forward from this, and you are in my thoughts, keep strong and keep positive that there is help.

 

It may be an idea to also see your Dr regarding the change of abx as some children can have an allergy to the ingredients.

 

Hope this helps.

 

Jules

[LNN]

We too have experienced the psychosis. Before we were sure it was PANDAS, we called it Linda Blair Syndrome, because it felt to much like my son was possessed. I always recall the scene in the movie where the bedroom is ice cold and the devil is sleeping and on the girl's stomach, you see the words "help me" written from the inside. This feeling of knowing my child was trapped inside has always haunted me and driven me to find treatments.

 

I can't begin to guess on the medical changes that might be going on. I can only offer you a cognitive behavior tip - when my son was at his worst and would rage and run away from us in fear and be totally out of control, we would talk to the "demons" instead of my son. You've heard of "talking back to OCD" and naming the OCD so that your child understands that the OCD is not "her" but a separate disease? We took the same approach to all of the emotional manifestations. We named each emotion - Warren the Worrier, Bossy the Bosser, Edgar the Angry, Calvin the Calm...

 

When my son raged in a psychotic way, I'd firmly address "Edgar the Angry" and tell him to let DJ go. I'd say "Edgar, let him go! DJ does NOT want to feel this way and you are not welcome in our house. You are NOT the boss of him and I am here to keep him safe. Now let go this instant!" My son would stop in his tracks. Then he would inch toward me. I would lower my voice and calmly talk to him in a reassuring voice, telling him it was ok, that he was safe and I was here to help him. i would tell him that he was in charge, not Edgar, and together we would make everything better.

 

It felt very strange doing it, but the change was dramatic. It helped my son feel less out of control, less terrified of what was happening inside. He couldn't articulate what he was feeling. So by my jumping in firmly and letting him know I wasn't mad at HIM, just at Edgar, a wave of relief would come over him and he'd often start to cry and crumble into my arms. It was like someone finally understood - the same feeling we get when we finally find a doctor who "gets it". Maybe the problem doesn't go away immediately, but you cry in the drive home because you have hope again. You're not alone.

 

Sounds crazy, but it worked for us. My son got to the point where he could do this on his own and he started to feel in control. When we started ERP, it was much easier for him to understand that OCD was just another unwelcomed guest and that DJ was the only one who could kick him out, but that I'd be there to help and coach and he wasn't alone.

[tired mom]

My daughter has been sick with a fever all week, and until today, she was extremely calm, which has not been the case here for some time.

Today, she became increasingly agitated, feeling a bit better with no fever, but still stomach pain and diarrhea. Still, though, a good day overall.

But tonite, tonite around 10:30, after having fallen asleep on the couch next to her sister a few hours earlier, "IT" is back, and with a vengeance.

She woke up screaming that I had left her, and that she had to go to the bathroom. Screaming in an increasingly volatile way. Once in the bathroom, I couldn't get her to get off the toilet. She kept saying she had to go more, and then she began screaming about how she hates God -

continually repeating "When I go to heaven all I wanna do is punch God in his big fat face" and saying she hated us.. We are bad parents... she wants a better family...

Her tone would go from a whiney scream to the loudest highest scream she is capable of.

When she wiped herself, she did so with such force I thought she was going to hurt herself.

This went on until 2:00 am, with the wind down starting maybe 45 minutes prior.

This episode was strong, very scary. My 7 year old child is not my child when this happens to her. This rage, these thoughts, they overcome her.

Her eyes become dull, and clouded, her pupils really really small. The circles around her eyes go from black to red, and she really looks, God forgive me, psychotic, in these moments.

As I am writing this, I wonder - does this affect these children like a seizure? What happens to their little bodies during an episode like this???

And, post fever, there MUST be a surge of some sort that short circuits their brain for a time - there just must be.

 

She was recently on aug. for two weeks, but switched to azith. because micoplasm is still in her system. Maybe micoplasm is to blame.

 

I just wanted to share this with you, and wondering if anyone has experienced a strong resurgence like this.

Thanks so much, everyone, for being there.

Stay strong. Tomorrow we will find all the answers. To everyone reading this is my sister. Our lives have been shattered like all of yours have. The rage is the most difficult thing to handle. I HATE THIS AUTOIMMUNE DISORDER!!!!!!!!!!!!!!!!!!!!!!!

[thereishope]

Many have found that there is a calm before the strom with some illnesses and fevers. When my son had H1N1, I thought we were home free with PANDAS symptoms since they weren't present during his 105 fever. Then 4 days after the fever broke, I saw some PANDAS blips. Granted, what you experienced is NOT a blip, but just relaying how sometimes the behvaiors happen post fever.

 

 

When did you switch to the Azith? Is it believed that the fever is a result of the Mycro P (which is a common symptom for Mycro P, but not all get). Perhaps she has two insults on the immune sustem right now. The mycro P and something else. When a PANDAS child is sick with more than one thing at a time, it can really send them into overload.

[colleenrn]

I just wanted to tell you I am thinking of you. It is so horrible to see your child go through that.

 

How much Zithromax is she on and how much does she weigh? The reason I ask is b/c my sister's children also have PANDAS and her doctor insists that in a child over about 60 lb., a treatment dose is 500mg of Zithromax per day with an active infetion. Most doctors do not give that dose, but it is clear in my niece and nephews case, the 500 works so much better. Have you tried giving Ibuprofen very 6 hours. Maybe that would help a little?

 

Hang in there!

Colleen

[colleenrn]

Nomoz,

 

I just posted, but wanted to add this. One thing you may want to rule out if the diarrhea does not resolve very soon, just to be safe, is pseudmembrous coilitis. I put a link to some info from Mayo Clinic, but it is possible when on antibiotics to develop this.

 

There is normally a bacteria called clostridium difficile (c-dif) in you intestinal tract. Sometimes antibiotics can cause an overgrowth of c-dif. The c-dif then produces a toxin that causes abdominal pain, diarrhea, fever. To test for it they would just need a stool sample.

 

It probably is not the case with your daughter, I just wanted to mention it in case.

 

http://www.mayoclinic.com/health/pseudomem...colitis/DS00797

 

Colleen

[nomoz]

Nomoz,

 

I just posted, but wanted to add this. One thing you may want to rule out if the diarrhea does not resolve very soon, just to be safe, is pseudmembrous coilitis. I put a link to some info from Mayo Clinic, but it is possible when on antibiotics to develop this.

 

There is normally a bacteria called clostridium difficile (c-dif) in you intestinal tract. Sometimes antibiotics can cause an overgrowth of c-dif. The c-dif then produces a toxin that causes abdominal pain, diarrhea, fever. To test for it they would just need a stool sample.

 

It probably is not the case with your daughter, I just wanted to mention it in case.

 

http://www.mayoclinic.com/health/pseudomem...colitis/DS00797

 

Colleen

Thank you, Colleen, for your thoughts, and your wisdom. My daughter wasn't on augmentin for more than two weeks, but she was sick since Jan, and had Azith prior for micoplasm. It may be this c-dif. I don't know if she is on long enough for something like that to take hold.

Thanks so so much!!

Noelle

Also, in response to your other question - the Azith is only a 200mg dose - 400 given on first day. And it's just until infection clears. I guess, then, we go back to Augmentin. Though, if this is happening to her belly due to antibiotics, what then??? I really don't know.

Seeing Dr. T tomorrow. Maybe he can steer us... Hoping!!

Thank you again!!!!

[nomoz]

We too have experienced the psychosis. Before we were sure it was PANDAS, we called it Linda Blair Syndrome, because it felt to much like my son was possessed. I always recall the scene in the movie where the bedroom is ice cold and the devil is sleeping and on the girl's stomach, you see the words "help me" written from the inside. This feeling of knowing my child was trapped inside has always haunted me and driven me to find treatments.

 

I can't begin to guess on the medical changes that might be going on. I can only offer you a cognitive behavior tip - when my son was at his worst and would rage and run away from us in fear and be totally out of control, we would talk to the "demons" instead of my son. You've heard of "talking back to OCD" and naming the OCD so that your child understands that the OCD is not "her" but a separate disease? We took the same approach to all of the emotional manifestations. We named each emotion - Warren the Worrier, Bossy the Bosser, Edgar the Angry, Calvin the Calm...

 

When my son raged in a psychotic way, I'd firmly address "Edgar the Angry" and tell him to let DJ go. I'd say "Edgar, let him go! DJ does NOT want to feel this way and you are not welcome in our house. You are NOT the boss of him and I am here to keep him safe. Now let go this instant!" My son would stop in his tracks. Then he would inch toward me. I would lower my voice and calmly talk to him in a reassuring voice, telling him it was ok, that he was safe and I was here to help him. i would tell him that he was in charge, not Edgar, and together we would make everything better.

 

It felt very strange doing it, but the change was dramatic. It helped my son feel less out of control, less terrified of what was happening inside. He couldn't articulate what he was feeling. So by my jumping in firmly and letting him know I wasn't mad at HIM, just at Edgar, a wave of relief would come over him and he'd often start to cry and crumble into my arms. It was like someone finally understood - the same feeling we get when we finally find a doctor who "gets it". Maybe the problem doesn't go away immediately, but you cry in the drive home because you have hope again. You're not alone.

 

Sounds crazy, but it worked for us. My son got to the point where he could do this on his own and he started to feel in control. When we started ERP, it was much easier for him to understand that OCD was just another unwelcomed guest and that DJ was the only one who could kick him out, but that I'd be there to help and coach and he wasn't alone.

Thank you thank you thank you!!! We have named this "IT" to let her know that we truly differentiate the real "Amber" from the psychosis. But she is hard to reason with, near impossible, when she rages.

Today, aside from a bit of the last of this working itself out of her, she actually is ok - exhausted, but ok.

And all we have is today.. isn't it??

Thank you again!!

BTW I just saw an article in an Autism magazine with a similar story. By chance, is that you? What a moving story.. I pray for your child, and help, help, help, for all the children and families going through this.

[nomoz]

Hi nomoz,

 

My heart goes out to you. Our first major PANDAS onset was very much the same. DD aged 4 would run around the house in the middle of the night, screaming, switching lights on talking complete nonsense and not always using the toilet!! The screams were so loud that we feared they would wake the whole street up. I often remembered praying for God to give me the strength to get through this and help her. This was totally NOT my calm quiet child that I once had.

 

Every child is different, so I can only give my personal experience here. We have never seen this reaction again since we changed her diet and allergy tested her (and gave her the supplements required).

 

Going GF was a big turning point. The following PANDAS attacks were bad, and we had hyper issues etc but I can say we have not seen the psychotic outbursts again.

 

If you can afford to go down the allergy/DAN route then this is the advice I would offer. I feel PANDAS kids are a big bag of mixed issues, and you need to look for other triggers.

 

I do hope you move forward from this, and you are in my thoughts, keep strong and keep positive that there is help.

 

It may be an idea to also see your Dr regarding the change of abx as some children can have an allergy to the ingredients.

 

Hope this helps.

 

Jules

[LNN]

BTW I just saw an article in an Autism magazine with a similar story. By chance, is that you? What a moving story.. I pray for your child, and help, help, help, for all the children and families going through this.

 

Yes, it's my story. Unfortunately, I jinxed myself by having a happy ending to the article. We had a setback in Dec/Jan but prednisone brought him back. So far, things have been way way better than last year, and I'm very glad we did the pex. IVIG will be a possibility if we ever reach a point that PANDAS keeps taking him away. We are a work in progress. Now that they're done selling the Jan issue of the magazine, I've been given a pdf file of the article if you want it. Just PM me.

 

Also, Tamar Chamsky's book "freeing your child from anxiety" really helped us. It's written for an adult, but then you can use characters to illustrate the concepts to your child. If you're the book reading type, I highly recommend it. It's a quick read and has some good strategies.

 

Laura

[wornoutmom]

Usually our pattern is this psychotic rage 2-3 days before we see a physical illness. But when my son came down with H1N1 this fall, the pattern was the same as you describe. total calm for 3 days with fever, then huge "psychotic" rage on day 4. I truly understand your fear and distress and know how incredibly horrible and helpless you feel watching it. I hope it helps to know you are not alone.

[trggirl]

I'm so so sorry. What a terrible thing for you and your daughter to have to go through. These poor kids. It just breaks my heart.

[colleenrn]

Noelle,

 

I am so glad you will be seeing Dr. T. The reason I mentioned pseudomembrous colitis and c-dif is b/c I beleive,at least in my kids case, that not just strep A affects their PANDAS. Since C-dif is a bacteria, and I think it is possible other certain bacterias can exacerbate PANDAS just like in some cases viruses exacerbate it, that it is something you could at least rule out as a cause.

 

BTW, my siter's children on on Augmentin prophylactically, but they add Zithromax for 10-30 days when they have an exacerbation while on Augmentin and it seems to work.

 

Colleen