Do any of your kids have raging meltdowns? or crying spells?

[laura s]

Do any of your kids have raging tantrums or crying spells?

 

If we get off Seroquel and Prozac what would you recommend? Namenda?

 

Will antibiotics stop this if it is PANDAS?

 

Thanks Laura

[thereishope]

My son had bad rages with his second exacerbation. He would have meltdowns that lasted 2-3 hours. He would also get physical w/ me with hitting, kicking, etc. I didn't give him meds to help with it, but I think some have some supplements they give. Eventually, once the strep was erradicated and the healing process went on, the rages and meltdowns stopped. He no longer has them.

[Worried_Dad]

Hi, Laura:

 

Just a note of caution. Our son is older (13), but when he had his major "overnight PANDAS symptom explosion" in August 2008, we did see severe (and totally out of character) bursts of rage and hours-long crying jags. A well-meaning (but pretty close-minded) child psychiatrist put our son on zyprexa (neuroleptic) and ativan (benzo) psych meds to help with the OCD and anxiety. These meds (especially the ativan, we believe) made our son's emotional lability much, much worse. He literally destroyed our basement play area one day, and we were afraid we would have to hospitalize him for the safety of our other children.

 

Dr. K (about whom you'll see many posts on here) advised us to taper off these meds as soon as we could, because he has seen them put PANDAS kids "completely over the edge." Sure enough, within 2 days of tapering off them, our son's violent rages and crying jags (and other frightening symptoms) virtually disappeared. He told us he felt "so much better." He still had severe OCD and tics, but he was far more emotionally stable.

 

Every child is unique, and some seem to benefit from low doses of SSRI's or other psych meds. But many parents have reported experiences similar to our own on this forum. So I'd advise extreme caution if you pursue psych meds: start with very low doses and increase very, very gradually.

 

And, yes - for our son, high-dose augmentin has been more effective than anything else in stabilizing his behaviors and emotional state.

 

Hope that helps!

[thereishope]

Here's a thread devoted to rages you might in interested in reading...

 

http://www.latitudes.org/forums/index.php?showtopic=5628

[momaine]

Do any of your kids have raging tantrums or crying spells?

 

If we get off Seroquel and Prozac what would you recommend? Namenda?

 

Will antibiotics stop this if it is PANDAS?

 

Thanks Laura

 

 

yes, many of these kids have rages and crying spells that they did not have before PANDAS, mine included. Sometimes ssri's don't help pandas kids and sometimes they do. My dd was on zoloft for a couple years before we knew it was pandas. It helped at first then stopped working. then she started celexa which also helped some. Then we figured out it was pandas and we started her on 2000mg augmentin xr per day two weeks ago. The dr. did not want to make more than one change at a time so she is still on celexa. Antibiotics alone allow some of these kids to heal and some need more. We've also started her on 8000mg per day vitamin D (from the d3 family) and Omega 3's. Plus probiotics between antibiotic doses. Advil reduces her symptoms a lot so we giver her 400mg of that per day. We're getting by hoping for good news. I was thinking she had been on the antibiotics longer but it has only been 2 weeks 2 days at 2000mg per day so it's still early to tell.

Angela

[peglem]

I don't know a thing about Namenda, so can't help you there.

We, unfortunately, are intimately familiar with the rages and meltdowns- really, I think these are extreme reactions to fear (the source of which seems to be not being able to satisfy some compulsion)-the fight or flight thing.

 

For us, too, getting the strep under control with abx seems to be what helps the most. Valium does seem to help my daughter, if things are not too extreme. When she is in full exacerbation it doesn't help much, but when we are going into a situation that we know will be stressful, it does help her through- like blood draws, doctor appointments... It takes the edge off enough that we can coach her through the anxiety.

 

Anti psychotics are the worst for her and I've told her psychiatrist that these are completely off the table and will not even be considered. We've tried several SSRIs and I don't think they made her worse, but never saw any improvement either.

 

For sleep (isn't that why your son is on seroquel?) we use 1.5 mg of melatonin, 900mg of valerian root, 400mg of ibuprofen, magnesium (not sure how much, because the bottle is gone-but 1 tablet). The melatonin works to get her to sleep, but will not keep her asleep more than 4 hours after dosing. The valerian relaxes her (similar effect as valium) and helps her stay asleep. The magnesium is also relaxing-especially for muscles-she has problems with muscle twitches in her sleep that sometimes wake her up. This combo works for her most of the time. Can your son swallow pills? I don't see any way to get the valerian in any other way. Also, the valerian will only make you sleepy if you are tired. It is something that you can also use during the day if he has had good rest at night.

 

As far as managing the rages when they do happen- I've found this site very useful- doesn't solve the problem, but helps to manage it:

http://www.members.tripod.com/LeeLydon/rage.html

 

My heart goes out to you Laura. I think this is the very worst problem to deal with. God bless, Peggy

[brooke]

My son also had a horrible reaction to SSRIs. Prozac set him into a week long rage that stopped when we stopped the medication. (Note Prozac has a long half-life so if you stop it, it will take time to be eliminated from the body) We did not try Seroquel even though it had been recommended. (along with a list of others that scared me) My son actually has paradoxical reactions to most medications. The only thing that helped him was Clonodine, mostly to sleep when he had a rage at night. He is now on nothing but Augmentin.

 

My advice is to go very cautious on medications. I have not heard of Namenda, but if it is new, I would be dubious. I would try Clonodine. Dr. Latimer prescribed it for us. It comes in a patch and a pill. The patch helped througout the day. The pill worked almost as a sedative.

Hope this helps@

[tantrums]

My son is 6 and we are definitely seeing the rages and meltdowns! The first one was about 2 weeks ago (well the first major one!). We have a comm. log with the teacher. If he has a "good day" at school - he can play computer for 20 minutes. Well he didn't so no computer. He literally dropped to the ground, ripped his clothes off and flailed around screaming bloody murder. He wouldn't stop. My husband told him if he didn't stop - there would be no TV. He didn't stop, so no TV for the night. He carried on for TWO HOURS! At one point, he was in his bed and called to me calmly so I went in. He said to me "Don't ever say that to me again." I asked what. "Don't you EVER tell me I can't watch TV". He said it so mean with such hate in his eyes that it was scary. I stayed calm, told him I was not going to fight with him and walked out. The screaming commenced again. It was the most disturbing episode I've seen.

 

Then friday, he came home from school in a rage because he couldn't find his money for the holiday shop. Granted, to be the only kid there without it must have been awful! I'd told him it was in the front of his bookbag - even showed him in the morning. Well, it was full on "I HATE YOU! I wish you would die". Then he picked up his light sabers, threw one at me and said "fight me mom! Fight me!".

 

Those were extreme. Mainly, it's typical (well typical if he were THREE), dropping to the ground and flailing and kicking and screaming for a few minutes. But he will perseverate for quite a while on whatever the issue was. He will also run into his room and slam the door and throw things.

 

Between the hateful words and the screaming, he has the saddest look in his eyes - like he is scaring himself So hard to see!

[thereishope]

Actually, those sound like my son's rages/meltdowns when he had them so you're not alone. It's important to remembr that when they are like that, reasoning is useless. That's how I knew he was recovering, I could start using ultimatums (like no tv) to get him to behave and it would work like it's suppose to with a kid his age (he's 6 now).

 

I am too tired to read previous posts to find this answer, so I'm just going to ask. Have you taken him for a recent strep test?If not, take him......and all other family members too. If it's an infection causing this, he won't get better until you rid him of infection. It'll just get worse.

[MomWithOCDSon]

Do any of your kids have raging tantrums or crying spells?

 

If we get off Seroquel and Prozac what would you recommend? Namenda?

 

Will antibiotics stop this if it is PANDAS?

 

Thanks Laura

 

 

yes, many of these kids have rages and crying spells that they did not have before PANDAS, mine included. Sometimes ssri's don't help pandas kids and sometimes they do. My dd was on zoloft for a couple years before we knew it was pandas. It helped at first then stopped working. then she started celexa which also helped some. Then we figured out it was pandas and we started her on 2000mg augmentin xr per day two weeks ago. The dr. did not want to make more than one change at a time so she is still on celexa. Antibiotics alone allow some of these kids to heal and some need more. We've also started her on 8000mg per day vitamin D (from the d3 family) and Omega 3's. Plus probiotics between antibiotic doses. Advil reduces her symptoms a lot so we giver her 400mg of that per day. We're getting by hoping for good news. I was thinking she had been on the antibiotics longer but it has only been 2 weeks 2 days at 2000mg per day so it's still early to tell.

Angela

 

Angela --

 

Curious . . . how' your dd doing these days? Are you still using both the SSRI (Celexa) and abx, as well as the supplements and Advil?

 

We've only just begun and seem to be on a similar program . . . given SSRI's for what was diagnosed as standard OCD years ago and didn't want to stop them until we knew if/when abx would help. My ds is on Luvox and 2000 mg Augmentin XR/day. He seems to be improving . . . still some OCD behaviors but fewer and milder meltdowns.

 

Nancy

[momto2pandas]

We are seeing things almost exactly like this word for word, but of shorter duration. The part that really keeps me up at night is how badly it bothers him - right afterwards he talks extremely sadly about how he must just be a bad person because he does bad things that he can't stop doing (throwing things, talking VERY meanly, etc.). No amount of reassurance seems to help. My dh thinks that ds is just manipulating me into being soft on him about the behavior, but I don't think so. Normally he is an extremely responsible, obedient boy with high standards for his own behavior, so I think it's hard on him to feel like he's "become bad." And like others have said, none of the usually-effective disciplinary things (threat to lose privileges, etc.) helps even for a minute.

 

 

My son is 6 and we are definitely seeing the rages and meltdowns! The first one was about 2 weeks ago (well the first major one!). We have a comm. log with the teacher. If he has a "good day" at school - he can play computer for 20 minutes. Well he didn't so no computer. He literally dropped to the ground, ripped his clothes off and flailed around screaming bloody murder. He wouldn't stop. My husband told him if he didn't stop - there would be no TV. He didn't stop, so no TV for the night. He carried on for TWO HOURS! At one point, he was in his bed and called to me calmly so I went in. He said to me "Don't ever say that to me again." I asked what. "Don't you EVER tell me I can't watch TV". He said it so mean with such hate in his eyes that it was scary. I stayed calm, told him I was not going to fight with him and walked out. The screaming commenced again. It was the most disturbing episode I've seen.

 

Then friday, he came home from school in a rage because he couldn't find his money for the holiday shop. Granted, to be the only kid there without it must have been awful! I'd told him it was in the front of his bookbag - even showed him in the morning. Well, it was full on "I HATE YOU! I wish you would die". Then he picked up his light sabers, threw one at me and said "fight me mom! Fight me!".

 

Those were extreme. Mainly, it's typical (well typical if he were THREE), dropping to the ground and flailing and kicking and screaming for a few minutes. But he will perseverate for quite a while on whatever the issue was. He will also run into his room and slam the door and throw things.

 

Between the hateful words and the screaming, he has the saddest look in his eyes - like he is scaring himself So hard to see!

[Tattoomom]

YES!! Our son (8 years old) has these spells wayy too often

 

He just started on Zoloft (25 mg) and ironically, he hasn't had a "freak out" in a few weeks. Not sure if it's just a waning period or if the Zoloft is helping?

[Tattoomom]

The part that really keeps me up at night is how badly it bothers him - right afterwards he talks extremely sadly about how he must just be a bad person because he does bad things that he can't stop doing (throwing things, talking VERY meanly, etc.). No amount of reassurance seems to help.

 

This is EXACTLY how our ds is! After his fit, he apologizes to us profusely and talks about what a bad person he is but swears that he just can't help it.