I'm soooo confused!

iVillage Member
Registered: 06-13-2007
I'm soooo confused!
9
Tue, 06-19-2007 - 12:28am

My ds was really lathargic today and didn't want to drink or eat anything. He was also complaining that his head and ears hurt. Well, I thought he might be sick...maybe an ear infection from being in the pool yesterday, after all he does have an extensive history with his ears(tubes and the whole bit!).Well as the day wore on, it didn't get any better, so I started to think it may be that he is tired from the new med he is on (Tenex). So I called the doc that dx him and put him on the Tenex. She said that I could cut the dose in half and call her back on Wed. to let her know how he was doing and that I should get him in to the pediatrician to rule out any sickness. Well I took him to the urgent care afterhours clinic. He has a sinus infection and an ear infection in his left ear. BUT....get this one...he was complaining all day of being thirsty too...every five minutes he was saying he was thirsty. Literally! Come to find out, this new med the doc has him on has the following side effects...dry mouth, fatigue, headache, loss of appetite..etc.!!! OMG..I am soooo pissed! That doc told me that it would NOT affect his appetite cuz I SPECIFICALLY asked about that. Not to mention all the other side effects! That's horrible to put a 5 yr. old child on something that has those kind of side effects! No wonder he felt miserable! I am calling the docs office FIRST THING IN THE MORNING and getting him OFF this stuff!!! I will have to deal with the tantrums and stuff until we find another solution, but it will be worth it if he feels better. I know that the effect it has on his mood is better for him cuz he doesnt have those meltdowns, but I would rather have him feeling good physically and grate on my nerves a bit than feeling like he is sick all the time! But what I am confused about is: Am I doing the RIGHT thing taking him off a med that does so much for his mood and stuff? I mean will he feel just as bad mentally while having those tantrums and meltdowns as he does physically taking the medication? If so, how do I choose? I don't want him to be suffering either way! Help! Please!

Jen

iVillage Member
Registered: 11-28-2006
Tue, 06-19-2007 - 2:41am

Hi Jen,
Well I can only tell you about my experience with meds.....I recently put my 11 yr old on risperadal, because of the rages. And they weren't just rages, he was attacking me. I knew by 11 ( he was just recently dx-d) that he was too big for me, and I couldn't handle it anymore. I could not hold him down and restrain him anymore....He would do other things like bang his head hard against the walls and his top bunk bed. I didn't want to see my son being arrested for this in the future, so I decided to medicate. These rages happened every night and most mornings. I just couldn't deal anymore.

We tried Risperadal, about a month ago and OMG no more rages. He is gaining weight but we are trying for one more month, and then see about switching him to Abilify, or something else, if he continues to gain weight.

My younger son was just dx'd with Tourettes and ASD by his pys.... He has rages too and he also attacks me. We started on the Risperadal. He is still at the lowest dose but so far I don't notice any weight gain. But he still rages, but much less. He is only 7. I have an appt tomorrow and will probably up the dose since it so low to see what happens. If he gains weight I will probably switch too.

Side affects can be serious. Go with your gut. Talk with your doc on what else they can give.

I send you the best of luck, and please stick around and learn. Many of us have decided to medicate and not medicate. It is best determined by your gut. Cuz you are the mom and know the best for your child :)

Lainie

iVillage Member
Registered: 03-25-2003
Tue, 06-19-2007 - 2:49am

Hi - I have a son named Dakota, too, but daughter's name is Sierra so not all the same. LOL

As for the med deal, how long has he been on it? As with all medications there are side effects and depends on the person on if they show any symptoms of side effects. A lot of times they only last so long and then go away. Hard to say. I am a RN and looked up the drug and discovered that it doesn't cause a loss of appetite though does cause dry mouth, sedation, headache, and weakness. However these are common side effects and like I said before are often short lived. I am not saying this to keep you child on this medication. It is a choice of your own.

Don't know if I helped you any. Just need to go what you feel is right. Just know that most common side effects generally disappear and this goes for all medications. It would be wise to bring your concerns to your doctor.

Good luck to you,

Shell




Edited 6/19/2007 2:58 am ET by dragonfly_shell

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iVillage Member
Registered: 06-13-2007
Tue, 06-19-2007 - 2:57am

Hey Lainie, thanks for your input. The doc that put him on the Tenex had suggested Risperdol, but I refused to put him on it. In my opinion (and this is nothing against YOU cuz it's an individual decision), my son, who is only 5, has NO BUSINESS being on an antipsychotic drug. Especially one as strong as Respirdol. I have NO DOUBT that there are kids in this world (such as yours) that it would benefit and I'm glad that option is available for them. But I just can't bring myself to that point yet. There may come a time in the future where I have no choice, but right now, I do. I am going to see what my options are. We had talked about possibly taking him off the Focalin XR he is on for his ADHD and putting him on Strattera. It is a non-stimulant and I want to see how he might do on it. I have decided that I want to ask her to take him off the Tenex. The side effects are just too many and affect him too much...and it happened in such a short time!(since last Wed.) I hope that your ventures with your children being on Respirdol are ones that are positive rather than negative and if you do end up changing, I wish you the best of luck, whatever your decision is! Thanx!

Jen

iVillage Member
Registered: 11-28-2006
Tue, 06-19-2007 - 3:03am

Jen, I also have to say (and this is only my opinion) that my boys have felt so much better being in control, and not attacking me (who they love dearly) that I know these meds are helping them.

My 7 yr old son says... after attacking me... that he is bad, and I must feel he is bad because he acts in a way thats bad. I say to him that he is NOT bad. That things are happeining in his body that he might not be in control of now, but I will help him all the way. And that no matter what I love him/his older bro

Right then I knew how bad he felt after it was all over. He would bring up the time he head butted me to where he gave me a bloody nose, he brought that up today. And I reminded him that I loved him no matter what, but I know, that the meds, if they work, can make them feel better about themselves.

Both boys have felt remorse when they loose control. Chris will do a disquised thing, like come into my room after it's over and walk in and say "Depression mom" and walk out.... I think he has heard many things and is trying to figure it out himself.

All I know is, if a drug will help them feel better about themselves, then I am there, helping them along the way.

But then again, you night not have the same experiences as I have had, so you have to go with your gut...

Lainie

iVillage Member
Registered: 06-25-2003
Tue, 06-19-2007 - 9:19am

Jen,


First things first:


Get the infections under control. You

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 08-10-2006
Tue, 06-19-2007 - 9:30am

Hi Jen!
Hugs to you... this meds stuff is scary. I have been there and know what you are going through. What dosage is he on? We have Nick on clonidine (similar to Tenex) which has more sedating side effects than Tenex. He is on the .1 mg tablets which I have to quarter and give him twice a day. The dosage is so small, the side effects for Nick are nil. The first 2 days, I noticed he had an easier time falling asleep, but now, he will run until 10:00 pm. If the dosage is too high for Dakota, the no doubt he will experience the side effects more pronounced. It is a high blood pressure medication and will lower his bp which is probably why he was lethargic. Obviosly this is a personal choice as what to do, I dont know if the strattera will help with his rages. Nick's adhd meds did nothing (almost seemed to aggravate) for his rages. Not until we got him on the clonidine did we find relief.

I would have a serious talk with the doc, possibly lowering the dosage, start with the SMALLEST dosage first and work up. Always start small. I stress that!!!

Take the side effects seriously, but know that he "may" experience them or not. In the trials, they have to note everything, if someone gets the flu during a trial, they list it as a side effect. Read the labels on some of your prescriptions that you take, you wouldnt believe some of the potential side effects out there, but they have to list them. If there were a snowball's chance in h**l, I wouldnt take my BCP's, migraines meds, seizure drugs, etc!! I know you will do what you feel is right and what you decide with your doc, I wish you luck! It is not an easy choice.
Christine

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Christine

iVillage Member
Registered: 12-22-2003
Tue, 06-19-2007 - 9:42am

Jen-

I fought the same internal battle as you when it came to putting my spectrum kids on meds. In the end the emotional aspect of being out of control was too much for our 6 year old, and about a month ago we decided to try her on Risperdal. Initially I was so upset by the side effects (which were very similar to what you're describing with your child) that I was ready to pull her off of the medicine. But when I asked my doctor about it, she explained to us side effects in the early stages are not only normal, but good (as long as they're not life threatening) because that means the medicine is actually working for the child...it's doing what it's supposed to do. While she was willing to take our daughter off the medicine if we felt we couldn't handle it, she did suggest we stick it out for 30 days as many of the side effects go away after the first several weeks.

Low and behold, the side affects are going away now. Claire is not sleeping all the time, she's not drinking constantly, and while her appetite is still "up" she's not eating 12 Pop-Tarts a day.

Amy

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iVillage Member
Registered: 08-10-2006
Tue, 06-19-2007 - 10:22am
Hi Jen,
I did also want to add in my post that in the beginning stages of starting a med, you will have side effects, that will usually go away. There is always an adjustment period your body goes through. First make sure you are dosing correctly, again, start low and build up, especially for children. Also, make sure that any other meds that he is on arent making him feel sick, if he is on an empty stomach, the effects of the Tenex might be more exaggerated. I didnt see if he was on an antibiotic or not for the ear infection, that can me little ones sick, Nick always was queasy on Augmentin, but it did the job. Give him the Tenex dose at dinnertime with food and milk. We dose Nick at lunch and dinner, it helps. Like you, we weren't ready for the risperdal, but we were also coming apart at the seams with the rages. You are in my thoughts!
Christine

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Christine

iVillage Member
Registered: 11-28-2006
Tue, 06-19-2007 - 3:17pm

{{{Jen}}}
Thanks, I really struggled with it too before I tried it. But I know we are all different and decide different decisions regarding our children. Yes at 5 I would probably try other things too first.

Another drug I was thinking about if we switched was clonodine. I have read other parents (on another site for Tourettes) that it helps with the rages too. Its a blood pressure medication, and for some reason it sounds more safer to me, as many adults take it because of lowering there blood pressure.

But of course I am only a mom, with no background in medication at all.

Good luck :)

Lainie