They want to medicate without knowing what he has!

[Dara]

I spoke to the neurologist today because Sammy's behavior has spiraled out of control at home again but worse. We have an appointment at the Mayo Clinic in late april or may but that seems a long time to wait without doing anything. ANyways, I called the Neurologist thinking that he would want to either see us or do some tests seeing as the last MRI or EEG that Sammy had was over 2 years ago. Also, we have no idea what behavior issue specifically Sammy has. THe neurologist called back and said to give him half a tablet of chlonadine (SP) every night and to call him back the week before Christmas. So first we are medicating him and second there will be nobody to monitor this. This feels very wrong to me. Do any of you have any experience and or advice with this because I am freaking out about this. I am not against medications, I just want to know what we are medicating and have more info on the medications we are giving....

 

[ggluvbug]

They are medicating the sypmtoms to make it easier for him. I have found that much of psychiatry is trial and error. And diagnoses are come upon by process of elimination.

 

[flutterbee]

Here is some info on clonidine:

http://www.rxlist.com/cgi/generic/clonidin.htm

It looks like it has a sedating quality to it which is why he says to use it at night.

As far as whether or not to use it, I would say you're going to have to go with your mommy gut.

It's not easy, I know. I refused to medicate until we had a diagnosis. Noone wanted to give anything a name, but they all wanted to medicate symptoms and I just wasn't comfortable with that. I don't know if that was good or bad. I mean, it might have given difficult child some relief, but there were just too many questions for me to do it.

It's tough. I'm sorry your difficult child is struggling.

(((hugs)))

 

[JJJ]

Sometimes you need to medicate the symptoms to give the child a better quality of life while a diagnosis is worked out. Sometimes, there isn't an answer as to why the child has this problem, diagnosis are ever evolving in children so you may get a diagnosis in April and a new diagnosis in September. We had diagnosis for all 4 of my children prior to medicating yet none of the 4 dxs are still being used. My older son has been through 4 or 5 diagnosis's and is now considered Pervasive Developmental Disorder (PDD)-not otherwise specified and PTSD. As we hit his teen years, we'll have to see if that holds.

If your son is not able to control himself, he might need the medication to help him get to April without more damage to his self-esteem and relationships with others.

 

[Dara]

I guess one of my main concerns is that this is used as blood pressure medications in adults. How does it affect young kiddos with their blood pressure? I also know that there are no studies on children taking this under the age of 6. I am also concerned tat there will be no monitering him on this medication. WHen I was young and started medications for epilepsy, I was given a blood test every week!

 

[JJJ]

Anti-seizure medications are dosed by blood level and that is why you had blood draws so frequently. Most other psychotropic medications are dosed by weight or titered up until symptom control is achieved and do not need blood draws.

 

[BusynMember]

That's a mild medication, although it can and does (I believe) slow the heartbeat. I didn't have a good medications experience. I kind of like waiting on the medications, but maybe that will help him sleep.

 

[Dara]

My mom gut says not to do this. I would feel better if there were tests done first and then Sammy was put on medications. This dr has never actually done any testing of any kind. He just based his reports from 2 30 minute visits and past reports and tests. I just have a bad feeling about this. We are speaking to the pediatrician. and asking his opinion since he knows Sammy so well and we trust him. I woul just feel better if there was some diagnosis and then go with the medications....

 

[DammitJanet]

I knew a little boy on this who was 4. He actually was on a patch of it that worked quite well for him. Sometimes we have to medicate symptoms long before we know what the actual name of the disorder is.

I went for several years going from doctor to doctor trying to find out what was wrong with me and just getting help with my symptoms before they found out what I had was fibromyalgia. It was a process of elimination. I know its not the same for an adult as a kid and this doesnt help your mommy heart...but...medicine is an evolving science.

 

[totoro]

Dara-
It is one of the most difficult choices a parent has to make, that being said, it is your choice. What each one of us did is for various reasons. You are having a very tough time right now. You need to look inside yourself for the answers.
I was lucky in that I was able to get K into a top Clinic when she spiraled out of control. But it still took 3 months of all of the BS... I wanted to wait for the diagnosis before I medicated her.
But knowing what I do know I might have given her something to help her at night.

Anyway she takes Clonidine PRN... at night to help her calm down, when she is manic or raging. It works wonders for her mania and rages when she is out of control.

I would warn though, when she first took it, we were trying it early in the evening, she passed out into her food, I thought she died right on the table! Seriously, I took her pulse, I was so scared, 15 minutes later she woke right up and was fine... it happened 3 nights in a row. This was when she was in the psychiatric hospital, and coming back to the hotel to sleep with me. We stopped on the 3rd night. Now we just use it PRN. She doesn't have that reaction anymore though.

I don't have the answers, some people will go on about the medications not being tested for kids etc. But really hardly any of them are. Especially for kids as young as ours. We have to look at quality of life and weigh the good vs the bad and really research the medications. Ask all of the professionals lots of questions go in with print outs lists of questions...
I know this hard. Stay strong and follow your heart... I don't want to put K on more medications right now... but she needs them, she is missing out on her childhood right now... :frown:

We are not dealing with the way things should be... unfortunately or how we may want them to be.
Hugs

 

[Steely]

Clonidine is a pretty mild medication, that can help immensely with anger, rage, compliance, etc. There is not any blood work that needs to be monitored with it, rather the only thing you could check is his blood pressure, to make sure it does not get too low. In fact if you just wanted to try it one evening you could, it is very fast acting - and then you would know if it was useful.

Seriously, even with a diagnosis, this is a medication that might be used. Many of our kids on the board use it as a PRN or daily. And there is the patch, so that Sammy would not need to swallow anything, if the medication is useful.

I know, it is so scary medicating our children.......so scary. The medication-merry-go-around makes me sick just thinking about it. However, you also know that lil Sammy can barely think straight right now, and he is miserable. He needs something to slow down his thought patterns and help him form cohesive, linear thoughts. This medication actually works to do that by slowing down the sympathetic nervous system.

Of course, the choice is yours, and we all support your "mommy gut" in making the best choice :smile: We are all here for you!

 

[Sara PA]

I think you mentioned it but I forgot -- why was he given an MRI and/or EEG when he was...a year, year and a half old?

 

[jannie]

Hi Dara--
I know it is always a hard decision to put a young child on medication...however...as others have said it's important to think about the daily stress and the inability for Sammy to function on a daily basis. I resisted medication for a while, but trialing medication and finding the right ones have been a savior in our household. I'm truly not certain what my child's correct diagnosis is...there is no real test for mood disorder, ADHD, BiPolar (BP)...etc...sometimes it's a process of elimination...sometimes the way a child responds to medication helps determine a diagnosis. My child started with adderall--it made him more angry and more agressive...next we tried tenex, which is similar to chlonodine...it really helped with activity, impulse control and agression. He was generally more compliant and less stressed while on this medication. While on medication, he also recieved intensive anger management and behavioral therapy. He remained on this medication for over two years--

Is this the neurologist who has been following Sammy's case for at least a year? You've seen so many doctors and no one has been able to come up with strategies that work...so perhaps the medication is something to try--It sounds like things are already pretty challenging....most likely the medication won't make him any worse..

Good luck with your decision...
Sending hugs

 

[Dara]

Sammy had seizures when he was 11 days old. He has had EEGS to follow up and make sure he is seizure free and MRI to see if there is anything else going on. This particular Neurologist has seen Sammy 2 times within the last year. He has not given us any strategies on how to handle Sammy's aggressive behavior which we discussed on the first visit. the last visit he said no to clonadine because he said Sammy would have the same behaviors but just be a zombie. We have expressed concerns in many areas so we wonder why suddenly he says yes to the medications when they will only make him into a zombie

 

[busywend]

So, you brought up this medication last appointment but now you do not want to try it?
What is it you wanted the doctor to do today? Make another appointment to discuss Sammy? What testing are you hoping for?

I agree that you need a doctor that is going to give you some tools. medications or not, he does not seem to be on the same page as you. What is his plan? May be time for a new doctor.

 

[JJJ]

The zombie affect is only in the first week or so as the child's body gets used to the medication. My son takes Clonodine 4 times per day and is never a zombie, heck he is still high-energy. We started with once per day ( at a .1mg tablet, the smallest they make) and he now takes a half-tablet 3 times per day and a full tablet at night. We have seen huge improvements in his impulse control and his sleep patterns. We are in the process of weaning him of the Risperdal because the increased Clonodine has been more successful than the high-powered AP.

The doctor may now be saying yes because he feels that he needs something to help him.

 

[Dara]

I didnt bring up the medications at the last appointment the dr did. We have always been nervous to medicate because we dont know what hes got and he is only 3 years old! THere isnt alot of info on medicating with off label medications for 3 year olds. Aside from his behavioral isues, we are still unsure of his delays and what is going on there so we are a bit nervous to medicate. As for changing doctors, we arent going to do that until we have our appointments at the Mayo Clinic and then we will take their suggestions on who to see here. The problem here is that there are so many different things going on, I have no idea of the right thing to do.

 

[Big Bad Kitty]

Well, it is good that you are bringing your fears out here. Plenty of experience here to help you. In the end, it is your decision.

This could be an answer to your prayers. Yes he is young. And my dear, you have got a looooooong way to go with him. You know what things to watch out for. If it starts to look scary, call the doctor or take him to the ER.

We'll all support your decision no matter what. ((((hugs)))

 

[BusynMember]

Even getting someone's opinion of a diagnosis, such as his Pediatrician, doesn't make the diagnosis right. These things are hit and miss and change often. A child can run the gamut of diagnosis. My son was ADHD/ODD then bipolar than Autism Spectrum Disorders (ASD). He's off all medications now. I'm angry I put him on any just because somebody said "he has..." There are no blood tests for any of these disorders. Our neuropsychologist was from Mayo Clinic and he told me, "Mayo makes mistakes all the time because these are all just our best guesses." There are no guarantees. I'd go slow. JMO

 

[Dara]

I know that diagnosis arent written in stone but I would like to at least have a guess with some of this stuff. I know that obviously, Sammy is struggling in life on many different levels. I know that day to day life is very tough on him. The thing is though, for Sammy, on the most part, he does quite well in school and his speech program. He is beginning to act out there but it is a fraction of what he does at home. For instance, at school, he says no when the teachers ask him to do something or he is disruptive during circle time. But he is not violent or going into these horrific rages at school. His screaming literally lasts seconds at school. He gets a lot out o his speech program and we are nervous to medicate him because he is so horrible at home and just mildly defiant but mostly compliant at school. There are so many concerns I have for what is actually going on. For instance, I know I have said this in previous posts but here I go, We have shown Sammy thousands of times to hold a to go cup (the plastic lid and straw) so it doesnt spill. He spills it every time and is just as surprised each time. Its like he has no recollection of the time before. Another example: this weekend we were out for lunch and Sammy wanted to "see toys" We told him, we are going to the car and are driving to the toy store. He was ok with that. The second we get into the car he goes bezerk because he wants "TOY STORE" at this point he is not going to hear explanation he is in imediate rage! So my question is what happened to the part of going from point A to B...if that makes any sense to any of you. Did he not understand what we said or what?! I just want to make sure the medications are not going to complicate these issues before we have a chance to figure out what they are exactly. Nobody seems to know. I am just so confused! This is the kind of situation I wish my mother was alive for!