Help I need help with my 3 year old!!!

[BusynMember]

Talk to your doctor. Mine, after the bad reaction, told us to discontinue and we did. I didn't want him on it anymore anyway and if he hadn't discontinued, I would have had our pediatrician help us wean him off as he was so sick on it.

Glad you're getting another opinion. Sorry you can't get a neuropsychologist evaluation. With all this little guy has been through, he could have one of many, many problems...and it will likely take a while to figure all of it out. And I agree that a multi-faceted approach works the best, although our son stopped needing medications when he got older, after we FINALLY got him diagnosed (at age 11!). (((Hugs)))

 

[karif]

The doctor took him off Respridol all together. He is starting him back on Abilify tommorow night. Today he was very, very emotional, his anxiety level was through the roof. He slept at nap time for only 10 minutes then woke up screaming and very confused. He was very agressive and jumpy all the rest of the day. He fell asleep at 7.00 tonight. Not usual for him. I pray that we are doing the righ thing.

 

[susiestar]

I am sorry this has been so rough on all of you. I have both had my difficult child on medications AND been on many medications myself (though not the psychiatric medications per se).

I think there are a couple of hard and fast rules we ALL need to know about medicating ourselves adn our kiddoes:

1. Make only ONE medication change at a time. Add ONE medication, and don't make a change or addition to any other medication until you see the impact of that ONE change or addition.

2. Start with a LOW dose = for ME I start with HALF of what the doctor says, sometimes with 1/4 even.

3. Increase SLOWLY. Unless there is a life and death need I increase at about 1/2 the rate the doctor says to.

For example: I am trialing a new arthritis medication. The manufacturer says to start with-100mg for 5 days then go down to 20 mg/day for maintenance. My rheumy said to start at 20 mg and if I wanted to take that every other day until I get used to it.

I am starting at 10 mg every other day. Still have side effects, but they are MUCH better than they would be if I took 100 mg!!!

4. This rule is one I have used since our first psychiatrist suggested it for Wiz: Never EVER start a medication until I have researched it ON MY OWN. I ask the pharmcist I trust about it, I google it, and I check to see if it will cause medication reactions with my other medications. Most online pharmacies like drugstore.com will let you enter the medications you are taking to see if there are any glaring errors in interactions. I also want to know about any withdrawal that might happen if we need to stop the medications.

These are just my suggestions. I DO find that many docs don't live with small kids or people who are medicine sensitive (more than the usual person would be) so we ahve to be very very careful.

I also ask a LOT of questions, esp if I find that medications prescribed are in the same category (such as risperdal and abilify).

These are NOT things you would automatically know, esp as you have not had a child on medications like these before. If we had not had medication issues, I woudl not have known.

You are VERY right - God gave you Josh because He knew you were EXACTLY the mom Josh needed. You are a very good mom. (Follow that gut instinct - it is noe of the ways God helps you protect your kids. Don't let people tell you that you are paranoid!)

 

[naturelover]

Hang in there! You are doing everything right! medications and little ones make life difficult to say the least. I know that blaming the doctor seems like the right course but they are not right on the money all the time. There are so many things going on in that little ones life right now that it makes it really hard for anyone to come up with the right answer. Breathe , it will all work out at some point in time. There is not going to be one simple answer to this equation. Combinations of treatments (medications, counseling, intervention, behavior modification, parental education) are probably going to be required in order to get positive results. Unfortunately, these all take time as well as trial and error, before we get them even close to right. So square your shoulders, hug your family, find time for yourself, and you will find a middle ground.
I think that most of us have traveled a very similar path to yours and we are still here to talk about it! Hey, just remember that what doesn't kill us makes us stronger!
Seriously, document what medications, dosage, time given, with/without food, time frames for reactions, severity, length, etc. Talk with the MD. Do not be afraid to say what you think or demand that you want your difficult child off medications because he has turned into a zombie or went off the deep end. You are the one after all, that is there to witness what is happening. That makes you the best voice to speak on behalf of the little one.

 

[karif]

It has been a very difficult morning. He woke up around 8.30 crying and wanting only me. Then wanted breakfast. I thought great, because he never wants to eat. Then he wouldn't eat it. I forced him to eat 5 bites of ceral. HE was very cranky and irritated. Still is. Is now hitting his baby brother and crying. We gave him abilify and 1 teaspoon Benedryl as per doctor. He is more cranky than usual and had a very restless night. I hope this will work. OF course it is a holiday weekend so if I have any questions for doctors I have to wait until Tuesday. Thanks for all the support I really need it right now. I feel like I am walking on another planet and you guys are the only ones that speak my language.

 

[karif]

ok when is this medication Abilify supposed to start working? I know we are at a very low dose but shouldn't it be doing something? Very hard day so far.

 

[SRL]

karif, before starting a child on a medication, it's always a good idea to check the package insert (they're all online now) to double check dosage, side effects, make sure the medication you get in the bottle is identical in appearance to the pharmaceutical company's description, etc. The NAMI website also has a good overview of the medications:
http://www.nami.org/Template.cfm?Se...tManagement/ContentDisplay.cfm&ContentID=8133

Here's the Abilify insert site
http://www.abilify.com/

How long it takes to notice any difference varies widely and varies among individuals. Some, as you just saw, show immediate changes. Often it takes a few weeks to determine. And sometimes it takes 4-6 weeks to get to a therapeutic level.

 

[Sara PA]

You can get the insert/label/prescribing information (whatever you call it) by googling "[name of drug] prescribing information". Usually you will get the drug's site or the drug manufacturer's site among the top google hits. RxList.com is another reliable site. You may have to search the drug/manufacturers site for the link for the prescribing information. Sometimes the link is right on the home page, sometimes it's in the fine print at the bottom of the page, sometimes you have to go to the section for professionals.

You can also find the patient information somewhere on the drug site. That's the information the FDA has approved that is handed out when the prescription is filled. Patient information is less detailed and less technical than the prescribing information.

 

[karif]

He is very sleepy and mellow today. HE fell asleep at lunch totally unusal for Josh. He has never fallen asleep before at lunch.

 

[AmyW]

Hi Karif! I don't have anything to add at this point. The other ladies have given such great information. I just wanted to give you a belated welcome to the forum and big hugs for what you're going through. I thought I had it rough, my goodness!! My heart goes out to you. You are SUCH a great mom, you truly are a blessing for that child. Many people would give up on him or even hurt him, but you hang in there and do whatever you can to help. God bless you and your beautiful, generous heart.

 

[karif]

HI everyone. Last night he was very restless, Jumpy and kicked and cried in his sleep all night. He is very tired and keeps laying down and closing his eyes this morning. He his very mellow and cries really easy. Is this normal for Abilify?

 

[smallworld]

Hi there, I'm sorry things have been so rough for your little guy.

My kids have never taken Abilify, but we've had experience with three other medications in the same family (called atypical antipsychotics or APs). One of the most common side effects of APs is sedation. That's why your difficult child seems so mellow and sleepy. This side effect can wear off over time as the body adjusts to the medication, but sometimes doesn't (depends on the child).

Another not-so-common side effect is called Akathisia. This is an internal and external restlessness that can be construed as agitation or anxiety. My son experienced Akathisia on Risperdal and described it as wanting to crawl out of his skin. Furthermore, I've read on a bipolar forum I visit that one-third of children who take Abilify become restless and irritable.

I strongly recommend giving your son's doctor a call in the morning to talk about his reaction to Abilify. Either it's not the medication for him or his body will adjust. You as a parent have a right to know what is what.

Hang in there and keep posting.

 

[Lothlorien]

karif,
I had Missy on Abilify for a while. We started her a low low dose and increased it gradually. Being that he's only three and probably less weight that Missy was when she started it, I can't imagine why the psychiatrist would start him on at 5 mg, plus put him on Risperdal at the same time. Anytime we've started Missy on medications, we started her low and titrated slowly to the higher dose and NEVER started two medications at once. There is just no possible way to figure out which medication he is reacting to.

Secondly, we always gave Missy the Abilify at night. Abilify will make him sleepy, so it's no wonder that he fell asleep so early today.

Abilify took a few weeks to get her up to the therapeutic dose, so it was a few weeks before we saw a difference in her behavior. Unfortunately, for us, her aggression got out of control several months later and we put her on the Risperdal, but we titrated slowly. She's been on it since July and we just got her to the full dosage a few weeks ago.

I suspect (and this is my personal opinion) that the bad reaction that he had was because of the combination of the two medications and the fact that he was started on a higher dose than he should have been.

I would suggest using a different doctor. Is he a pediatric psychiatric?I just can't imagine why he would overdose a little boy like that.

 

[Wiped Out]

Karif,
Our old psychiatrist tried my difficult child on Abilify when he was 7. He started him at 5mg and then increased it way too quickly. My difficult child had a bad reaction to Abilify but many others do very well. I would definitely recommend calling the psychiatrist.

 

[karif]

Ok I know I need to call the doctor tommorow and everything but it has been a really hard day. He has been screaming, hitting, spitting and hurting the baby all day. My two older easy child were yelling and saying they can't take it anymore. He finally ate some dinner which did make him calm down some. He is really into eating ice right now so two popsicles helped also. Sometimes I feel like running away to a foreign country but I think they would still find me.

 

[gcvmom]

My difficult child 2 was on Abilify for about a year and a half (he's been an atypical anti-psychotic of one type or another since age 7). He took it at night so the sedation wasn't too, too bad, but he did have trouble getting moving in the morning, although it was better than how he was on Risperdal. I found that he was more emotional if the dose was too low. He eventually developed a dystonic reaction so he had to discontinue it (as well as Risperdal and Zyprexa). He's doing better now on Seroquel XR.

Definitely would urge you to call the psychiatrist to report what you are seeing and let him/her make the decision on what to do.

 

[Nomad]

Risperdal was by far the BEST medication for our child (also adopted) when she was younger and raged.This was perhaps the ONLY medication that curtailed it. Evenetually, she developed a side effect and we switched to Abilify. Today, she still uses small amounts of Risperdal (as needed). The Abilify also works very well...seems milder in a certain kind of way. Also, it somehow allows difficult child to think a bit...a little less impulsivity. When first taking Abilify, she had stomach issues and had to take it with Pepto Bismal. This lasted for about a week. Both of these medications have been helpful for our child and therefore, our daily lives. The book The Bipolar Child has some great info. on not only Bipolar Disorder (not sure what the diagnosis is we are talking about), but the medications used to treat it. You can get it at the library. For the medications, school and family ideas...it is awesome!

 

[SRL]

karif, I would also suggest talking with your pediatrician to find out if there are any other pediatric doctors in the region you could consult with (or the pediatrician could call) that handle these medications. It's pretty unusual for these types of medications to be used in a three year old in the first place, but given the level of violence you were seeing I understand that decision. As we mentioned earlier, it's pretty unheard of for a doctor to be starting a very young child on two such medications at the same time which really makes me a little concerned about the prescribing doctor. Think about it--why prescribe two from the start when it's possible that one could do the job or that one could tide you over until interventions are put into place? Especially in a child so young that there's no way they could describe the side effects.

I'm not a doctor, and it's possible another doctor would also suggest the medication route, but as a parent I would be wanting a second opinion, especially since evaluations in other areas haven't been conducted.

 

[Nomad]

Wanted to add...
Just wanted to mention that based on experience, it is important for you to do some things:
1) Protect other children in the family
2) Protect your mental and physical health
3) Protect your relationship with your significant others/spouse
4) Make sure your difficult child sees a qualified physician and keep followup appointments (Ask your doctors for names of good child psychiatrists. If a name comes up twice...GO!)
5) Educate yourself on the various disorders...keep an open mind and be strong
6) Understand that these things take time and patience...lots of observation...often much experimentation
7) You asked about "natural products" There is a natural section on this website. in my humble opinion, I do think a combination approach can be helpful...allowing for LESS use of traditional medications. It is hard to find docs willing to do this or knowledgeable. Fish Oil tablets are said to be helpful...but hard to find tablets for children. You might call the folks at True Hope to see what they know. However, please know that this company is CONTROVERSIAL!

Violence should never be tolerated. Risperdal was a great medication for our child, but side effects were difficult. Abilify...also a very good medication.The only time we use both is in extreme situations and very temporarily.

We started with medicaiton with our child early on. . We went to a top notch psychiatrist at the local university, used very small amounts of medications and went back for check ups often. I do believe it helped her to have a more normal home and school life...although things still were tough. We also started with therapy early as well. Stats show that children who manifest these illness early on have the MOST severe situations and therefore intervention early on is a good thing. I agree with what someone else...most of our kids need a combination approach...more than one medication and more than one treatment. Medication, natural supplements, therapy, perhaps a special school setting....you see....It takes much wisdom and care. My heart goes out to you. Prayers headed your way.

 

[karif]

We had a pretty rough morning. He was angry and screaming most of the morning. I did call the doctor and after waiting most of the day for a call back he finally returned my call at 3.30 p.m. He said that Josh just needed time to get used to the Abilify he also added that he has never had patient like Joshua. I am now looking into a specialist that maybe has seen patients like JOsh. I am just feeling like I have been run over by a truck. I know this isn't as bad as some people have it but our whole family is really feeling the stress of this adventure.