Screaming?!

[Tattoomom]

So our main "symptom" is SCREAMING. I mean bloody murder. I mean glass shattering, can't-believe-my-neighbors-haven't-called-the-cops, kind of screaming. She mostly screams out of anger/frustration, but will even scream at me when I ask her a simple yes or no question. When she's really upset, she self-injures during her tantrums and will rub her feet together and has literally caused herself to bleed. She's started to trash her room when she's mad, dumping toy buckets out, banging on the walls. It's awful and scary.

 

She's 4 and we're about a year into this. She's on Augmentin, Zoloft and Tenex. Her anxiety is also pretty bad, crippling at times. She affects the entire house. We ALL feel like we suffer right along with her. It's so hard. I find myself questioning if we're on the right path and whether or not this is PANDAS. She definitely has major mental illness.

 

Can PANDAS cause such horrible screaming??? Her Psychiatrist thinks her screaming tantrums stem from anxiety. All I know is, we are terrified and the older she gets, the worse she seems to be getting

[Tamistwins]

I feel for you and I completely understand how you feel. I have 3 pans children. The earth shattering piercing screams is enough to make one go insane. I feel at times I'm living in a mental asylum. I think it's the OCD, when their compulsion isn't met that makes them scream their ear piercing screams with their complete being. I didn't answer right, or drop what in doing to answer them in that split second makes them go off. It's heart wrenching and its unbearable for us having to deal with it. Buy yourselves several sets of ear plugs. I'm surprised I haven't gotten deaf by now. I pray you find answers and find a treatment that helps. I'm sure others will chime in with great suggestions. Have you tested for infections other than strep, mycoplasma, coxsakie, Lyme, Ebv all triggers.

[stacyH]

The thing that has worked for my DS13 is ridperdal. We first had to use it when he was 8 and then again this fall after a major strep throat led to finally finding our pandas diagnosis. I don't want to use it long term but when your house is on fire...

 

Good luck and remember that she will be ok and get better.

 

stacyH

[Tattoomom]

Thank you so much for replying. I have 4 kids. My oldest has PANS (mycoplasma) and my oldest daughter has PANDAS from strep. Ava, the 4 year old started off with what almost looked like autism around age 2 1/2, and it wasn't until she was put on an antibiotic for a UTI when she was almost 4 when we had a huge eye opening experience with her autistic symptoms going away on the Amoxicillin. Immediately after stopping the abx (2 days later), she tested positive for strep throat. Mycoplasma labs were normal. Didn't check the others.

 

I guess I just wish I knew why she screamed! We go over it and over it. And she knows she's not supposed to. She'll even say once she's calmed down, "I'm so sorry I screamed. I know I shouldn't." You can tell she cannot help it. I think you're right avoid it being OCD related.

 

She will literally make herself hoarse. It's terrible. And it really does feel like we live in a crazy house. Seriously.

[tpotter]

Thank you so much for replying. I have 4 kids. My oldest has PANS (mycoplasma) and my oldest daughter has PANDAS from strep. Ava, the 4 year old started off with what almost looked like autism around age 2 1/2, and it wasn't until she was put on an antibiotic for a UTI when she was almost 4 when we had a huge eye opening experience with her autistic symptoms going away on the Amoxicillin. Immediately after stopping the abx (2 days later), she tested positive for strep throat. Mycoplasma labs were normal. Didn't check the others.

 

I guess I just wish I knew why she screamed! We go over it and over it. And she knows she's not supposed to. She'll even say once she's calmed down, "I'm so sorry I screamed. I know I shouldn't." You can tell she cannot help it. I think you're right avoid it being OCD related.

 

She will literally make herself hoarse. It's terrible. And it really does feel like we live in a crazy house. Seriously.

 

 

I think TatooMom has made a good point. Sounds like there may be other infections that have not been identified. I know that mycoP can cause rages, as can bartonella, which is considered a co-infection of lyme. Parasites can also cause an awful lot of symptoms as well, and at least 90% of people have them...not all are symptomatic. There is a thread going right now on the lyme forum about parasites. Yeast also does crazy things, and with all the abx she's been on, that is also a possibility. I have only listed a few, and this is not to say it is definitely any of the above or nothing else, but I do suspect she still has something or several things going on, which are causing the screaming. What I have found with my children, is that they end up being sick when symptoms either flare or don't go away. Although called the "Lyme" forum, the people on that one discuss all different kinds of infections, environmental issues, etc. You may want to look at that forum, as well (I go back and forth between them both.) Good luck.

[smartyjones]

I guess I just wish I knew why she screamed! We go over it and over it. And she knows she's not supposed to. She'll even say once she's calmed down, "I'm so sorry I screamed. I know I shouldn't." You can tell she cannot help it. I think you're right avoid it being OCD related.

 

i agree with the others that i think things this severe may often have a biochemical/infectious cause. so, discovering that is extremely important. however, you also need some coping mechanisms. my ds carries an anxiety diagnosis, not OCD. except in exacebation, it really is anxiety without a lot of OCD background such as rituals, reasons, etc. but i really believe anxiety/OCD to be on the same spectrum -- at various times, one can fall in many different places on that line as to the cause. for ds, when healthier, he usually just has anxious fear. when not as healthy, he has 'just right' OCD issues. when in bad exacerbation, he's had extreme contamination food issues.

 

so -- what i am trying to say, is your daughter's screaming could be due to something that is extremely real and terrifying to her at that immediate moment. later, when calm, it could even (and sounds like it is) baffling to even her. so - you need some techniques to get through those moments. you could try to search this forum from the past for some posts and advice from the poster 'megs mom'. she's not her so much anymore but offered some stunning gems of help.

 

for my ds, one time we were able to uncover that his utter uncooperation and defiance over leaving the backyard baseball game at the argeed upon time was not due to defiance but instead due to the fact that at that time, he was on second base and if he left without coming home, he'd be stuck on second all night and just couldn't allow that to happen -- he had to finish the base running. - a just right, need to finsih issue. for us - that could have easily turned into a screaming battle. it's possible your daughter is experiencing something like that that makes perfect scary sense to her at the time but she is not able to communicate it and ask for help finding a solution.

 

have you read The Explosive Child? i've found it a great help -- not so much in changing the behavior of the child but in giving coping techniques to the parent. the repeating can help you from getting dragged into the screaming mess and may help to get to stoping the screaming and getting to the problem and finding solutions. you can find some info at the website 'lives in the balance.com'.

 

Good luck. i know it sounds unbelievable at this time, but once you find some coping and get to the root of the infection/biochemistry -- this will fade in your memory like potting training troubles do.

[smartyjones]

maybe this will give you a chuckle. i remember posting it a few years ago b/c one day it popped into my head that this was the house in which i was living!

 

http://www.youtube.com/watch?v=iddPZEYUfsQ

 

 

[Tamistwins]

maybe this will give you a chuckle. i remember posting it a few years ago b/c one day it popped into my head that this was the house in which i was living!

 

http://www.youtube.com/watch?v=iddPZEYUfsQ

Lol this is mild in comparison to my home!

[Tattoomom]

Lol this is mild in comparison to my home!

 

 

Yep, mild comparison! And at least they know what she's screaming at! I think it makes it easier when there's a reason! LOL

[Tattoomom]

Her Psychiatrist seems baffled about PANDAS because she doesn't have tics. My older 2 (PANS/PANDAS) have tics along with anxiety/OCD.

 

How does one go about testing for parasites? Stool sample??

 

I honestly do not know how we would possibly do any blood work anytime soon. SHE WILL FREAK OUT. She had Autoimmune Neutropenia the first 3 years of her life and endured hundreds of blood draws, ER visits, hospitalization, injections at home, a bone marrow biopsy, a CT scan, etc... and has horrible anxiety at the doctor. She has some PTSD from it. She hasn't even had her teeth cleaned at the dentist this year she's so scared. She had to be put under general anesthesia for a cavity when she was 2. I cannot fathom putting her under for tests.

 

Is it possible she's just not on the right antibiotic? I see some kids on here are one more than 1 at a time. Is this something I should consider?

[pr40]

With our ds4 we did not see change in rages (screams) until we tried steroids. We are currently on them, 12th day, and, finally, we have some days without them. Before steroids, we were very seriously considering the possibility that he does not have PANDAS but something else.

[Tamistwins]

I think there's a list on here somewhere about OCD symptoms. There may be things that you just don't recognize as being a tic. My son used to kiss me too often , purse his lips and blow a kiss. At first it's cute but I learned it was a kissing tic. Any vocal noises, humming is a vocal tic. I remember reading a long list if things that were tics.

[Tattoomom]

With our ds4 we did not see change in rages (screams) until we tried steroids. We are currently on them, 12th day, and, finally, we have some days without them. Before steroids, we were very seriously considering the possibility that he does not have PANDAS but something else.

 

 

My Pediatrician wasn't too keen on giving her steroids, but I think I need to push the issue...