Don't even know

[7upMom]

Jynx'd us when I posted yesterday that we had went a full week now with no full blown rage. 9 y/o has been couple days complaining of headache/ stomach ache on/off and a tad on whiney side ( reverts to 3 yr old whine) Out of nowhere today says he is bored ( thats a repetitive remark a lot no matter how many options he is given) but he started slamming head on countertop, threw himself on floor and there it went. This would be the first time I have had a chance to do the "pupil check" and yep, HUGE- it was not him that I was dealing with but he was slamming chairs around. My first move is always to lock all doors, he is a bolter! and then he went for the knives ( we've put these up since the last rage though) His 17 y/o sister walked in and he screamed horribly at her and drew back to punch her, - not seen that before - he is usually self harm only-- once has it been on others and that was a time period 3 years ago. Before I knew it he was coming after me, my husband was running an errand and we ended up on the floor ( he was 80 lbs- I weight 120 and he is close to the same height) so restraining him when he's got all that adrenaline was rough. I got kicked, punched in the face, he bit my arm, scratched my arms all up, anything he could do. This struggle lasted for a long time, meanwhile 6 yr old twins and 4 yr old twins, know the drill and take their stations of safety away from the situation ( our house is trained)

Something different this time though, it really scared me- one - just that bad physical aggression towards me was new but in the midst of it, he went completely catatonic- no blinking, no movement , nothing. He was drenched in sweat from physical exertion but He was GONE. I said his name over and over - no response, nothing. Anyone ever seen this before in a rage, I am really worried about this!!!?? Daughter got a wet washcloth, she was crying, we had never seen this before and when I touched it to his forehead, it was like pushing play from a pause, he snapped right into the rage he just disappeared from, had to quickly restrain him again. After another 15-20 min, he just went limp- voice came back to normal so I knew it was Him- knew he really was back- he repeatedly said sorry over and over and just laid there while I held him.

With him being 9, this has been a better year since he is able to verbalize more of what he is feeling inside. Couple hours later he says it feels like an "itch he can't scratch inside his head so this is how comes out, but he's felt it for a couple days now and tried so hard to hold it in but couldn't do it anymore" I am wondering if this has any relation to the stomachache / headache he complained of, or geez i don't have any idea, I am so burnt out trying to figure it all out ) : I just want to scream, cry, throw things myself. This just isn't right!!!!!!!!

[MomWithOCDSon]

This sounds an awful lot like that "Exorcist" syndrome that Dr. T. posted about here yesterday! Did you see the thread?

 

So sorry you're going through this!

 

I'm not familiar with this sort of aggressive rage as my son's rages are more self-directed so he tends to just sort of "go fetal" and cry for an extended period.

 

That said, I AM familiar with the "I'm bored!" epithet, and that's almost always a sign for me that the PANDAS has gotten more active. He has trouble focusing on activities that would normally engage him; in his case, it is OCD obsessions and compulsions that distract him from the focus.

[thereishope]

I am so sorry! Those rages are awful. I had a hard time restraining a 5 year old weighing 40 pounds. I can't even imagine an 80 pounder. Like you, we hid the knives after threats of jumping out the windows or threats of throwing himself down the stairs. he'd try his best to unlock those windows, but he was 5 and didn't know how. I don't think he ever went catatonic in the midst of it. He had moments of "not being there", but I don't think it happened in the middle of a rage. Those rages haven't happened in about a year. In a sense, I am blessed I don't remember all details.

 

Whose care is he under? Is it a local doctor or have you seen a specialist? Remind us what meds he is on.

[peglem]

We did have @ 30 seconds of catatonia during a rage once...very strange, we thought it was maybe a seizure.

[7upMom]

I am so sorry! Those rages are awful. I had a hard time restraining a 5 year old weighing 40 pounds. I can't even imagine an 80 pounder. Like you, we hid the knives after threats of jumping out the windows or threats of throwing himself down the stairs. he'd try his best to unlock those windows, but he was 5 and didn't know how. I don't think he ever went catatonic in the midst of it. He had moments of "not being there", but I don't think it happened in the middle of a rage. Those rages haven't happened in about a year. In a sense, I am blessed I don't remember all details.

 

Whose care is he under? Is it a local doctor or have you seen a specialist? Remind us what meds he is on.

 

We have an appt to see Dr K on the 22nd. He immuno dr is in Des Moines ( Dr Elliott) at Blanks, pediat- local, psychiatrist, and therapist. He takes Lexapro(OCD) and Penicillin( PANDAS) in am and then eve takes Penicillin( PANDAS), abilify ( nos mood disorder) and clonidine ( tics and sleep)

 

I just hate that feeling right after of - how are we going to get through this - then after he's back of course I know I would do anything to get through it. He has been inpatient twice once at 7 ( he was hearing voices), once in Dec (self harm- for safety) but they told me 3 strikes your out- in other words if even for safety if he comes in one more time they said they may consider keeping him in a program and ultim boys home. You have got to be kididng me- so I do my best to protect him, keep him safe, cause no way would we let him go to a boys home, this is going to sound idiotic after the above post but he is a sweet, smart good boy in a good family. I am just praying we get some much needed help for him when we see Dr. K and that catatonic thing - I am just worried about that.

[7upMom]

We did have @ 30 seconds of catatonia during a rage once...very strange, we thought it was maybe a seizure.

 

 

After that have you ever seen it again? I hope not- it was very strange and scary and with him it takes a lot to make me fearful anymore! Thats a good theory though, the seizure part hhhmm.

[thereishope]

Okay, saying nice things about your son (even with rages occurring) is NOT idiotic. You know in your heart the rages are not by his choice. I know the Dr Jeckyl/Mr Hyde scenario all too well.

 

As for meds, I'm looking at that Pencillan that you typed and I'm thinking he may need something else. How long has he been on that? Is it a prophylactic dose? The I look at the abilify. I only know of one other child that has been on that. Hm. maybe start a thread about that and see if anyone has had good/bad experiences with it.

[GatsMom]

We did have @ 30 seconds of catatonia during a rage once...very strange, we thought it was maybe a seizure.

 

 

After that have you ever seen it again? I hope not- it was very strange and scary and with him it takes a lot to make me fearful anymore! Thats a good theory though, the seizure part hhhmm.

 

Seizure activity was the first thing I thought of when reading your description. I am so sorry for what you are going through. He's so fortunate to have such a dedicated family.

[7upMom]

Okay, saying nice things about your son (even with rages occurring) is NOT idiotic. You know in your heart the rages are not by his choice. I know the Dr Jeckyl/Mr Hyde scenario all too well.

 

As for meds, I'm looking at that Pencillan that you typed and I'm thinking he may need something else. How long has he been on that? Is it a prophylactic dose? The I look at the abilify. I only know of one other child that has been on that. Hm. maybe start a thread about that and see if anyone has had good/bad experiences with it.

 

He was on the penicllin for almost 2 years off for 1 yr and went back on 3 mths ago with PANDAS diagnosis/ they are trying to get the titers down. It is 250 twice a day, asked him Monday to up it, he said no can do!

Geesh he has been on the abilify for 3 years- I'll try and search the threads and see if I find anything on this med

[MomWithOCDSon]

Okay, saying nice things about your son (even with rages occurring) is NOT idiotic. You know in your heart the rages are not by his choice. I know the Dr Jeckyl/Mr Hyde scenario all too well.

 

As for meds, I'm looking at that Pencillan that you typed and I'm thinking he may need something else. How long has he been on that? Is it a prophylactic dose? The I look at the abilify. I only know of one other child that has been on that. Hm. maybe start a thread about that and see if anyone has had good/bad experiences with it.

 

He was on the penicllin for almost 2 years off for 1 yr and went back on 3 mths ago with PANDAS diagnosis/ they are trying to get the titers down. It is 250 twice a day, asked him Monday to up it, he said no can do!

Geesh he has been on the abilify for 3 years- I'll try and search the threads and see if I find anything on this med

 

Our DS12 also presents with OCD, and he's also taken a number of SSRI's since he was first diagnosed (with OCD before PANDAS) at 6. Lexapro seemed to help the OCD behaviors tremendously with no ill side effects.

 

That being said, we tried Abilify for all of 3 days this past spring, when this latest exacerbation sent him ballistic, and it made him NUTS! We will never, ever try that stuff again! The psychiatrist said he had an "akathesiatic" (?spelling?) reaction to it, meaning it activated him, rather than improving the effectiveness of the SSRI (currently Luvox). Nothing "catatonic," though.

 

If your son's been taking it that long without any noticable ill effects, though, it doesn't seem likely he was reacting as our son did.

[7upMom]

They took him off the abilify for a short time, it just didn't do anything and put him on invega, whoohoo that was BAD for him. So they took him off that and back on the abilify. Right around the PANDAS diagnosis time though, I put my foot down and said thats it I want answers!! We were getting thrown around from this specialist to that one, etc. So it turned into a big mess and he was seeing like 7 different people, ugh. I am finally just now putting all these pieces together and wondering if he should not be on any of these psych meds right now?? the lexapro doesn't work, the abilify doesn't work so what is the point in pumping that into his little body.

[peglem]

We did have @ 30 seconds of catatonia during a rage once...very strange, we thought it was maybe a seizure.

 

 

After that have you ever seen it again? I hope not- it was very strange and scary and with him it takes a lot to make me fearful anymore! Thats a good theory though, the seizure part hhhmm.

 

Just saw it the one time, but it was shortly before a follow up appointment with the neurologist...she started taking Lamictal. We had seen very brief (maybe 3 seconds) of these kinds of things during normal activities. They did not show up as seizures on the veeg, but they did abate w/ lamictal use.

Yes, when your in the midst of a very scary rage and then something like this happens, it gets even scarier.

 

this is going to sound idiotic after the above post but he is a sweet, smart good boy in a good family.

Not idiotic, completely understandable!

[wornoutmom]

Just wanted to say how much I feel for you and understand all the emotions you are going through. What you describe is exactly what my 14 year old/125 pound son goes through - and all I can do is stay out of his way. The only time I intervened was this fall when he started to pull his eyelashes out and I felt like I HAD to try and stop that. When he was younger and went through this, the therapist recommended restraining him - DISASTER. The psychiatrist later said that restraining a child in the height of a fight/flight reaction would likely only up the adreneline and fear and make him lash out worse, and suggested we stop. So now that this is happening at an older age I basically just follow him around and watch to make sure he is not harming himself or smashing anything of importance (though we now have a hole in the wall and door...). My younger son too knows the drill - straight up to his room when brother starts an episode. I will say that in the many many times this has happened I have never seen a catatonic period that you describe, and seizure also comes to mind. You might want to consider consulting with a neuro? Hang in there - I know each and every time you witness this it is so traumatic and scary. And I DO believe with all my heart that your son is a good, sweet kiddo - so is mine.

[earnestfamily7]

I am so sorry to hear about your day - My daughter as complete meltdown rages... and it is scary- this forum is the only place I can talk about them and not feel like I am nuts and making her out to be a monster... b/c others here know what I am talking about and that I love her but need help.... she has never gone catatonic during one of her 'episodes' ... that I can recall..... but my DS - who does not have the same level of meltdown/rages... but had high separation anxiety... HUGE OCD presentation ... "bad thoughts".... did have 2 episodes during 1st exasperation... both times we were in the car - once I was alone w/him... the other my mom & his siblings were with us... both times I had to stop the car to make sur he was breathing! all brain tests showed no seizures.... but they could give me no explanation as to what happened.... then this past Dec. he had another 'catatonic' like episode.... he just sat and stared for hours... he would not talk or eat or anything... just stare.... and when he did eventually talk a few hours later we asked why he was not answering us or responding he said he didnt know what we were talking about.... It is SCARY! the day of the last episode I told the neurologist that it maybe it was sensory overload - last day of school, field trip.... Friday.... Christmas break..... coupled with PANDAS sent him over the edge... He told me he had no answers .... but I already knew that

[kcdc3]

He takes Lexapro(OCD) and Penicillin( PANDAS) in am and then eve takes Penicillin( PANDAS), abilify ( nos mood disorder) and clonidine ( tics and sleep)

 

How long has he been on the Lexapro? Have you noticed his symptoms getting worse and worse as time goes on or did they get better?

It was our experience with an SSRI that our dd's symtoms just kept getting worse while she was on it. Each time the dose was increased, more bad behaviors surfaced. It was during this time, that we experienced one of our "exorcist" rages. We took her off the SSRI against the advice of our physician and we had a different child - for the better - I'm not saying she by any means was at 100 %, but it took her from 5% to 50%, I guess. After we did that, we read somewhere that SSRI's sometimes make the symptoms of PANDAS worse. Not saying this is your case, just trying to see if there might be a connection?