They want to medicate without knowing what he has!

[Sara PA]

Sammy had seizures when he was 11 days old. He has had EEGS to follow up and make sure he is seizure free....

EEGs cannot assure that someone is seizure free. EEGs can only rule in. A negative reading means that seizures weren't occurring at the time of the test or that they were occurring too deep in the brain to register. It may be that the person never has seizure activity, but an EEG won't prove that.

Neither I nor my son nor my friend who has had seizures for 50 years ever had an EEG that indicated seizure activity yet we all have/had temporal lobe epilepsy. (I say "had" because I have been seizure free off medication for 15 years.)

Considering that your son's behavior could be caused by partial seizure activity and anti-convulsants have been tested on and approved for children, it seems odd that the neurologist wants to try an anti-hypertensive rather than an anti-convulsant.

 

[Dara]

Sara, we actually initially thought that until we realized that his behaviors are not across the board. The neurologist actually made me laugh with his answer to that. He said "unless he has 2 brains, this is not caused by seizures"
I am paranoid about seizures because I had childhood epilepsy and remember my seizures...

 

[BusynMember]

I am guessing that even if he has seizures, which is certainly possible, they aren't the whole picture. Seizures are prominent in almost all brain/neurological disorders. Petit mals are common in bipolar and VERY common in Autism Spectrum Disorders (ASD). Usually one thing is not the whole answer--there is more than one diagnosis and stuff going on in most cases. Helping one helps the puzzle get put together, but it is unusual to BE the whole picture...I can't even guess what the "I forget" could be. Maybe Autism Spectrum Disorders (ASD)? But my son did remember from day to day. Yet I've heard of others with kids on the spectrum who tend to lose information...at any rate it's good that a complete evaluation is scheduled even though (yeah, I know, I went through the waiting too) it seems like it's never going to happen.

 

[Sara PA]

What do you mean by "across the board"?

 

[witzend]

Playing devil's advocate here, and not having read through the other responses, I am going to jump in with MHO.

With a very few exceptions, pharmacological mental health treatments treat symptoms rather than diseases. They "stabilize moods" or "anti-depress", etc. While I tend to agree that when the right medication at the right dose is found it can work wonders, an honest prescriber will tell you that it is generally trial and error. If an anti-depressant is given and the patient gets manic, they try a mood stabilizer. If a stimulant is given and the patient bounces off the walls, they back it off or try something different.

As far as monitoring goes, sad as it is, the parents are the monitors of the children's reactions to medications. That means that we have to realize that there will be changes in behavior, and we can't initially over-react to them, but we also have to be vigilant.

I hope that you will trust your own judgment on how difficult child is reacting to medications, and trust your doctor to help you and your difficult child through this.

 

[gcvmom]

Just a thought, but you can certainly have the pediatrician monitor him during these next few weeks if you decide to try the medication. The only problem I've had with this, though, is that our pediatrician knows less than I do about some of these medications my difficult child's are on!

For example... difficult child 2 was on too high a dose of Depakote and started peeing the bed after being dry for about six years. I asked the pediatrician about it and he said he didn't know of any connection between Depakote and bed wetting. Well, it didn't take too much Googling on the internet for me to learn that it was DIRECTLY connected to the bed wetting. When I finally spoke to the psychiatrist about it, he had us split the dose and BAM! no more bedwetting :smile:

Your best approach, from my experience, is to do A LOT of reading, ask A LOT of questions, and then listen to your instincts.

And ditto to the whole "trial and error" nature of treating these conditions. It's a frustrating fact of mental illness. The docs sometimes have to just aim for a cluster of symptoms to treat and hope that the medications which are designed for those symptoms solve the problem. It gets tricky when there is more than one issue at work, because what you see on the outside isn't necessarily representative of the real picture on the inside of the person.

Hang in there!

 

[Dara]

Sara, they meant that his behaviors at school and for other people are not the same that they are at home. He doesnt have the tantrums and rages in other situations. Just for his parents. They are saying that if it were seizures, then he would have those same behaviors in every situation. It would be able to be controlled.
We are waiting to speak to the pediatrician again today and my husband is talking to the neurologist to ask him some more questions that I didnt get to ask. The main problem I have is this is all being done over the phone. The neurologist doesnt want to see him at all. If we do decide to do the medications we will be in close contact with the pediatrician. since we are there all of the time anyways! Again, we have no idea what is actually going on with Sammy. When he had those seizures at 11 days old, they did every test under the sun an have no idea why or what caused them. He has never had another seizure since that any of us has seen and the neurologist agrees that he is not currently having seizures. The guess is that whatever caused the seizures is the cause for whatever is going on with Sammy. however, that offers no help in solution of what is the best thing to do for Sammy.

 

[I'm going crazy!!!]

Hey I am so sorry your family is going through all of this. Noone can truly tell you what to do Sammy is your child and it's up to you and husband to decide ultimately what's best. I can tell you the best thing I ever did for my difficult child is medication. I will never regret it even with all the issues he's had on them. The most important advice I can give you is 1) research everything 2)document document document 3) tell the docs everything no matter how small if they seem agitated because you are calling they can just get over it they make way too much money and this is your son's life we're talking about 4) trust your instincts and don't back down even if you're not sure keep pushing until ya'll come to a compromise that makes you both happy 5) if you really want him to see this doctor before giving him medications then tell him you want an appointment and what's the first available one he has

My difficult child has been on clonodine twice the first time was by his pediatrician and he was scared to give too much so we didn't see any results this time his psychiatrist prescribed it with Adderall because he was still impulsive and VERY angry and defiant after taking Adderall for 2 months so we started with a half of the .1 mg at night and then increased it to in the morning and now we are going to increase it to mid-day as well.
My son's pediatrician did actually check his heart I believe they did an EKG just to make sure he didn't have any issues there and I check difficult child blood pressure about once a week or so the pediatrician can tell you what is too low and also his pulse can tell you by being too high that his blood pressure is too low. We have one of those you put on their arm and just press a button and it tells you his blood pressure and pulse. I would check it before giving him any medications to get a base rate. Also, he needs to sit still for about 5 minutes or atleast no running around.
My son's pediatrician also drew blood before putting him on any medications because they said some of his symptoms could be explained if they found any abnormalities. I would definitely ask his pediatrician to do all of this before giving him any medications.

I hope this was helpful and please feel free to PM me anytime

 

[Dara]

Thank you guys so much for all of this! It is just all so frightening! Trying to figure out what to do, what is best, what is going on! husband spoke to the neurologist today and he said that he does not recommend giving medications to such a young child and would prefer that kiddos this young stay off of medications however, he prescibes it if hte parents are at the end of their ropes. Even though his behavior is crazy for us at home, I think we are going to go ahead and wait until we have the full evaluation done at the Mayo Clinic. I think husband and I will both feel much better about it. Not to mention the both of us will be paranoid maniacs with Sammy on these medications and checking him constantly and worrying about him when he is sleeping and on and on and on.... Really I dont think either of us can handle that kind of paranoia right now!

 

[busywend]

:bravo:

That is what I would do. You have no reason to hurry up and put him on anything. He may need the medications tomorrow, but if you can get through until you get to Mayo I think it is worth waiting on. Take each day.

You made the call and that is the important part.

:bravo: :warrior:

 

[Big Bad Kitty]

We're behind you no matter what.

Keep coming here for strength and support, and we will be here to help you along the way.

 

[witzend]

That must make you feel so much more at ease! It sounds like your Neuro is being very reasonable!

 

[TiredSoul]

I just looked up some info on this drug and found this:

Clonidine is another drug that has been FDA-approved to treat high blood pressure that is being used to treat those with ADHD. Clonidine has been effective in treating the hyperactive symptoms of ADHD and is often prescribed in addition to ritalin. This combination, however, can be dangerous and even life-threatening. There have been four sudden deaths due to cardiac complications reported in children taking clonidine and methylphenidate (ritalin) together (Swanson et al. 1995; Cantwell et al. 1997; Fenichel 1995). These deaths led to the recommendation of cardiac monitoring with an EKG when clonidine is used. Therefore, extreme caution should be taken be patient and doctor when such combinations of medications are prescribed.

So does everyone who take this medication have cardiac monitoring with an EKG? A question to maybe ask your pediatrician dr.

 

[victorearose]

My $0.02:

What is your child needing right now? It is a hard place to be in ... looking at the medication. I am glad that I decided to start the medication. The evaluations and diagnosing for us has been evolving over the past several years. If I waited until I was satisfied that we had the "right" diagnosis, he would be suffering much more than he is now on a daily basis. I am not yet satisfied with the diagnosis - getting neuropsychologist evaluation Monday.

In my experience, medication has been worth it. It takes the edge off and allows him to function a little more normally. It treats the symptoms of whatever he has. Even after the diagnosis that is what it will do - treat the symptoms. neuropsychologist medicine is more of an art and is not as easy as treating an ear infection, for example. An ear infection can be cured by XYZ antibiotic. neuropsychologist problems are pervasive and most likely lifetime problems that can not be cured. We treat the symptoms to allow them to function as normally as possible.

My difficult child still works harder than anybody else in his class to get through the day, get his homework done and maintain emotional control. However, he is able to get through most every day now. It was acutely clear to me how much medications were helping on a Monday when dear ex forgot his medications the night before. OMG! It was like the old commercial of the egg in the frying pan and "this is your brain on drugs" only his was opposite: this is his brain without his stabilizing medications.

Better living through chemistry is my experience and opinion.

Peace,
Tressa

 

[meowbunny]

I'm glad you made a decision you're comfortable with. So long as Sammy is relatively happy, I think you made the best decision for you. If, however, he is truly struggling and is obviously miserable, I might re-think the medication question.

There are no easy answers when it comes to medications. We all have to do what we feel is right. Sometimes the "right" thing isn't the comfortable thing. I totally understand your fears in medicating one so young. I doubt I could be convinced to do it unless I could be convinced it would make a difference and certainly not because it would make things easier for me!

by the way -- The toy store/car incident sounds more like a 3 YO's misunderstanding. He was at the car, so where's the toy store? I think I'd be enraged if I expected to see toys and all I saw was a parking lot full of cars. It sounded like he understood that getting to the car meant seeing the toys but didn't quite understand that getting to the car was just the first step for his desired journey. I have a very literal child and I have to be VERY careful how I phrase things even today. She would have been livid when she got to the car and there were no toys there, too. She just wouldn't have understood that there was a ride in between unless I specifically said first we have to take a ride and then we'll go to the toy store.

 

[victorearose]

Oh, I would also like to add ... the medication can always be stopped if it doesn't work out. This is not a final decision

Tressa

 

[Dara]

Sammy is happy in school and in his speech program. He oges in happy and comes out happy. At home he goes through phases of being happy a majority of the time to being unhappy a majority of the time. It comes and goes an is not consistent!
But for right now, until we have the full evaluation done, we are going to hold off on the medications. husband and I are much more comfortable with that one.
I do want to thank all of you for your advice, knowledge, and support with this. As you all know this is a tough decision that we all come to face and it is never an easy one. Just because we are not starting medications now doe not mean that we are against it totally. Anyways, thank you all again! It is much appreciated!