Ugh Ugh Ugh Ugh - Anxiety over new medications ( risperdal )

[Ash]

Hi guys I mostly lurk but I had to come out of hiding to post this becuase I am just really stressed and confused.

My son is 7 ( just turned ) Diagnosed ODD, CD and anxiety. Fits all criteria. Neurologist and psychiatric. agree on diagnosis. He has tried Intuniv with drastic change but had to go off due to hallucinations. Tried Tenex and we saw no change in his behavior. He was still constantly in trouble at school. Psychiatrist kept recommending Risperdal but after reading all the scary side effects I would repeatedly refuse. Conduct got so bad at school and at home that I finally broke down and allowed the medication. It's working, but now im sat here obsessing over him developing long term side effects such as ticks, learning disabilities, man boobs, you name it. I have severe anxiety already and I just cannot deal any longer with using my son as a lab rat. I want to pull him off of the Risperdal but it is working. So what do I do? I know benefits outweigh risks here but honestly, Id rather have a child with conduct disorders than a child with long term ticks or cognitive issues due to a medication that was meant to help him.

I guess I just need a pep talk here. Thanks!

 

[AnnieO]

Hi Ash!!!

OK, first things first. How long has your son been exhibiting these behaviors? It's been my experience, and many others' on the board, that CD and ODD are catchall diagnosis's - and many times something that's underneath is what's causing the behaviors.

Re side effects. Ibuprofen is strongly discouraged during pregnancy because of side effects... Acetominophen is OK, but it has some pretty nasty side effects, too. And we all trust Tylenol!!! I say this to illustrate that nothing is 100% safe. (Heck, even breathing is bad for you any more... Don't drink water... Nothing but nothing is safe.) From the point of view of a stepmom with two kids that each have their own issues - trust me, trust me, you do NOT want a violent child. At 7 it might not seem so bad, but once he is bigger than you are - or even next month - OMG, watch out.

Risperidone/risperdal was a miracle with Onyxx - when she would take it. In her case, she was taking 0.25 mg 4x a day. That's seriously not much.

And my stand on medications like this? If the child is raging, he cannot learn how to control himself. However, with some help calming, he can learn tools for that say he forgets to take it, or runs out, or is off them.

I hate hate hate the thought of medicating children. But, sometimes? It needs to happen.

{{{{{{{{{{HUGS}}}}}}}}}}

 

[Ash]

We noticed that he was "different" around age 3. He has been diagnosed ODD CD and Anxiety since Dec 2010. We have tried play therapy and cognitive behavioral therapy and he refused to participate so it was a waste of money. He literally sat for 10+ months not saying a word each visit. I know that ODD/CD are catch all diagnosises that are thrown around but when you read the symptoms of those two it is my son 100%. He meets and exceeds every criteria. I know he also has sever anxiety and has had a few panic attacks. He got that from me. He is not ADD/ADHD or Obsessive Compulsive Disorder (OCD). He has been tested. We have not gotten a neuro psychiatric because my insurance does not cover it.

I know every drug has side effects but man they make Risperdal sound so scary. You know? I just don't know what to do. I don't know if my son is just being a boy or if he really does have something wrong with him. I have tried to call around to get info about getting a neuropsychologist and seeing how much it would cost me but nobody ever knows what im talking about or its 6 months before I can get in to see anyone.

 

[Ash]

Does anyone know what type of doctor I need to call to get info on a neuro psychiatric? Nobody seems to know what I am talking about.

 

[AnnieO]

We ran into the same thing with Jett. The Children's hospital locally did nothing for us. We ended up going an hour away - and though I do not agree with their diagnosis, being as how I live with the child - they were much better.

Many university hospitals (OSU is good, for one) and many (though obviously not all) Children's hospitals will have a better idea. Best way to get insurance to pay? Get a referral from your pediatrician for a "neuropsychological evaluation".

There are others who know more that will be along. I still think we missed something with Jett.

 

[Ash]

Okay after spending an hour on the phone to find someone who actually would do it. Texas Children's Hospital Baylor does them, and I do need a referral to even be seen. Fortunately my pedi is already in the network. Im calling after lunch.

What should I expect in a neuropsychologist evlaluation?

Also, is Risperdal as bad as the internet makes it out to be?

 

[AnnieO]

Good - I am glad this has worked so far...

You'll probably have several visits. They'll probably do blood work (they had to rule out Fragile X in Jett's case), some observation. They'll talk to you some, but mostly they'll test him. I think we had a total of 3-4 visits (I only went to one; husband to all). They did an MRI, and not sure what else...

 

[Ash]

An MRI? Really? Man!

We have been tested for ADHD and Obsessive Compulsive Disorder (OCD) with mixed results on the Obsessive part of Obsessive Compulsive Disorder (OCD). So far after seeing 3 different psychologists and a psychiatrist all we can agree on is that he 100% meets the diagnosis for ODD. This boy IS ODD. Every criteria he faces and we see every single day. If it isn't a real disorder than whatever has those symptoms is what he has. I know he has Anxiety too and that may be fueling the ODD type symptoms. If that were the case though I would have thought the Tenex would work but who knows.

 

[BusynMember]

I've gone to three NeuroPsychs for my son and we never had MRIs or blood work...he had those done, but by other doctors. Basically, he tested my son in every area of functioning (all of them did) and also observed his behavior such as eye contact, ability to sit still, ability to hold a give-and-take conversation, etc. etc. etc. He got the TOVA test for ADHD and all kinds of similar tests. The first neuropsychologist we went to had worked at Mayo Clinic for ten years and he was awesome. He nailed my son in every way and we saw a big upturn after that. I feel it is well worth it. Before that, we really weren't sure what was going on.

These professionals have PhD's in Psychology with extra training in the brain. I find them more accurate than Psychiatrists because psychiatrists usually don't do any testing and often miss neurological differences.

 

[Last ♡ Hope]

No help, I'm new here, too. Thanks for posting, this is interesting to read as I'm trying to get a neuropsychologist evaluation for my 6 year old right now...

 

[HowMuchLonger]

Ash, my 9 year old son was just given risperdal(risperidone) as well this week. That was in addition to the adderall he was already taking. I was terrified to give it to him...but terrified not to at the same time. He takes a very small dose right now - 0.5mg at bedtime although pediatrician said we could give it to him as early as an hour before we felt the adderall typically wears off as our biggest challenges are evenings. When I was first handed the prescription I was very excited and just wanted the anger, rages and physical abuse to stop...once I got home and checked around the internet I too was scared at the side effects and how ominous the different sites made it sound if you actually needed this medication. However, my arms, back and legs are covered in bruises...doors hanging off hinges...hair pulled out of my head...been called every filthy name in the book...all courtesy of my son, and I couldn't help but think how much WORSE things could/would get if I didn't find something to help him now. And my son is a little wee thing...but he's been able to almost take me down in his superhuman strength that comes with his rages. I can't even imagine how much worse the damage could be if this were a 16 year old attacking me...

Not to mention how much the rest of the family is in shambles over this. My oldest son (almost 18) tries to stay away as much as possible because he "hates" his youngest brother...and my 10 year old son who is a already a very sensitive over-anxious kid just cries all the time because he thinks it's his fault - if he'd just given his brother the toy...or not told him to get out of his room...or any other of the million small things that sets the youngest one off - then none of this would've happened. My husband is at his wits end...struggling with having grown up in a very old fashioned home "kids respected their parents or got a hairbrush across the butt", and trying to handle this the "right" way with talking and setting emotions aside, and counselling. It's just one big mess and hoping it would all just go away hasn't worked for the past 3 years so we just had to try something.

One thing I noticed is (like someone else said) if you look at the side effects for ANY medication, the list is long, extensive and scary...a side effect of advil or tylenol is a headache...OH the irony LOL. I think if you are very aware and focused you will know if the risperdal is doing something positive or negative for your son. I'm finding my son is actually doing very well *knock on wood* with his. Today will be the 4th dose. Day one he woke up very early which I wasn't expecting as they say it can cause sleepiness. He "seemed" ok but his eyes looked like he was stoned! After a while that went away and I realized it was just that the poor kid had finally gotten a full, good night's sleep and actually slept soundly (which was one of the positive things the pediatrician had pointed out to me about giving him the risperidone). Day two he woke early again but his eyes were normal and he had a great day with very little fussing or opposition other than "normal" 9 year old boy stuff eg "awww do I HAVE to brush my teeth??" rather than "F*** YOU B**** I'm not brushing my teeth I don't care if they F***ING fall out!!" (a bit of exaggerating but you get the point!).

Anyhow, you're not alone and if you want to keep chatting about what you're observing with your son I'm more than willing to help out with that as we're both in the same boat

 

[Ash]

Thank you guys so much. I know that in a way I dont really have the room to complain becauase I know a lot of you have it worse than me but I just want the best for my boy. It is hard when you are judged by the neighbors and your child is singled out and not allowed to play with the other kids because they think he is "bad". It sucks a lot.

My son isn't physical with me yet and I hope we never get to that point. Im scared to death of the side effects of this medication, but so far it is working. We have had wonderful days at school for 4 days. I have a referral in to get a neuropsychologist and will go from there. I will just try not to google so much about this medication because I know google can scare the beejebus out of all of us.

 

[JJJ]

I LOVE Risperdal and Zyprexa and Abilify and Geodon, heck I have a sweet spot for the whole class of APs.

The horrible side effects are very. very rare. We have dealt with some of the more common side effects and simply by stopping the AP, waiting a few weeks and then starting a new one, the side effects went away.

Without the APs, both of my boys would have been locked up a long time ago. At 7, they were both out of control. Now, at 15, Eeyore hasn't had an AP for over a year and is doing great. At 12, Tigger has a script for Seroquel but we only give it as a PRN if he is having a really bad day.

 

[HaoZi]

Kiddo experienced some of the nastiest side effects Risperdal had to offer - namely distorted thoughts and suicidal behavior. This showed up VERY quickly after she started on it, as in she started getting more aggressive and easily agitated by the third day. Mine has shown atypical reactions to many medications so far, it wasn't just Risperdal, though for her it was the worst tried so far. Every kid is different and reacts different.
Others here have found it to work miracles for their kids.
Titrating up VERY slowly (even slower than psychiatrist may say, because most of those schedules are based on adults) can help limit side effects. They will have to keep an eye on his blood sugar, cholesterol, etc.

 

[Ash]

How often should I have his bloodwork checked? How often can a child stay on this medication safely?