ADHD or Bipolar and Risperdal /Clonidine | ADHD Information
Brigitte, are you still out there?The last post I have on this site for you regarding your daughter, Maggie,
was in January of 2006. In the past few years have you established a
diagnosis? Have meds that are working?
My daughter, May, sounds identical to your daughter. As a newborn &
infant, & older she would not eat. Although, she never had any
mechanical problems with her mouth. She was always an extremely light
sleeper, and did not sleep much as an infant. She had frequent ear
infections, and I loved them because I could guiltlessly give her benadryl
and she would sleep.
At three years of age, she could spell her name, her brother's name, knew
all her colors, shapes, could count and was starting to add numbers.
However, her brother was one year old at that time and he was getting a
lot of attention. He had a number of health problems (heart stopping,
stopped breathing). Initially, she just seemed to be jealous of him. Then
she started trying to hurt him, pushing, etc. Then, she became very
defiant. She would not do anything she was suppose to do. Even refused
to get herself dressed.
After a few months, I couldn't handle it. She would sleep only a few hours
a night and her behavior was awful. So, we took her to a psychiatrist. He
immediately put her on risperdal. I thought it was a miracle drug. Within
2 doses she returned to the sweet bright little girl she had been. And she
was actually sleeping at night - so I could too! For 2.5 years she has
been taking the medication, increasing over time as she grew.
When she was 4.5 yrs we took her in to have a brain scan done because
her preschool teacher was concerned that she was not progressing as she
should. She had obviously lost a lot of that which she had known a year
and a half earlier. She was the only child not reading in the class, despite
one on one tutoring for an hour each day at school. The scan indicated
that she may have some issues with attention (ADHD), but nothing was
outstanding or severe. In other words, it was inconclusive.
She is now six and in kindergarten. After Christmas break, I had to teach
her how to spell her name again. She knows less now than she did when
she was three.
I think it may be due to risperdal. I insisted that we take her off of it.
Her psychiatrist was not happy about it, but he gave me clonidine to help
her sleep at night and adderall XL to help her focus in school. He will not
give me a diagnosis for her. He says she is too young and any diagnosis
might effect her future.
The first three weeks of adderall in the morning with the lower doses of
risperdal at night, helped her in school. She actually got 100% on her
next three spelling tests. Before adderall she would maybe write three
letters on the paper, and that was it.
I weaned her off the risperdal over three months. The clonidine was not
as effective as it needed to be for sleep. I was up to .15 mg (one and a
half pills) when I decided to try my benadryl again - the past two nights I
have given it to her, and she is sleeping.
Since decreasing, and stopping the risperdal, she has become defiant,
and she is hypersensitive (falls down and cries hysterically for 5 minutes).
She is also yelling a lot, and has pushed her brother a few times. Once
off a stair onto hard stone flooring. But, even with this "bad" behavior,
she doesn't seem to meet the criteria for bipolar disorder. She is not that
bad.
Last month we took her in to a neuropsychologist who specialized in
diagnosing kids. She had 12 hours of testing spread out over three days,
different weeks. The doctor's result, "Of the over 400 children that I have
done this testing on, she is in the top ten for most difficult." She did give
a diagnosis of ADHD and childhood bipolar disorder, with the caveat that
"due to the intense difficulty in testing her, the diagnosis may be
incorrect." And she kept saying that childhood bipolar may not turn into
adult bipolar. So, I sort of think that she is uncertain about that
diagnosis. She went on to say that there really isn't a diagnosis for my
daughter and that maybe in another ten years they would know more
about how her brain works and have a name to put with it.
I do not know what to do at this point. Her behavior is disruptive enough
(frequent yelling) to cause stress in our household, but not as severe as
described to be bipolar. She is not sleeping. I can't have her on benadryl
forever, can I? She is again doing poorly in school. She is getting 3-4
words correct on her 10 word spelling tests. She did not meet the
minimum standard for her to go to first grade.
Socially, she is great. Other children love her and she loves playing with
them. She has had sleepovers at other kids houses and does well. She
recognizes bad behavior in other kids, and adults. She doesn't fit into the
autism spectrum. That was tested too.
What meds should she be on, if any? What else can I do for her? Does
anyone have any advice, or feedback? Brigette, your daughter and the
symptoms of your daughter seem very similar to mine. How is she doing?
What meds/treatment did she receive? Please let me know.
Welcome Marysmom. While some children are difficult to diagnose, it is your right and your child's right to know exactly what your dealing with so that specific treatment and interventions can be administered to allow your child to have quality of life. Your obviously a very caring and loving parent who has a beautiful child in terrible turmoil. Her behavior indicates extreme anxiety at this point because she has no control over her behavior. No child chooses to be difficult or all out of sorts.
This can be a long, difficult journey for many parents and the children who have behaviors that indicate they are crying out for help. Unfortunately not every specialist is competent enough to make a differential diagnosis even though they should be. It is highly inaccurate for a neuropsychologist to say that childhood bipolar may not turn into adult bipolar. That's totally inaccurate and I question the expertise of such a doctor. Also, stating that there is no diagnosis for your child but in ten years they will know more about her brain is ludicrous. While there is so much medical science still doesn't know about the brain, there is no such thing as a child being undiagnosible. Dont stop until you get clear cut answers. I'm a firm believer in getting an accurate diagnosis first and then putting the child on med's tailored towards their specific needs. A competent doctor will never put a child on med's to try to make a diagnosis. Its actually the other way around and if its not then that is not the doctor you want to be treating your child.
I recommend you do two things at this point. First, always follow your instincts as a parent. You know your child better than anyone. As a parent if your uncomfortable with specific medications prescribed to your child, continue to question the choices made by a doctor and always go with your gut feeling. Also, while your child has been through so much testing, I think its critical to get another opinion by a child psychiatrist. I don't think any med's should be administered at this point until you get an accurate, differential diagnosis. As far as what med's or treatment is best, only a doctor with specific expertise in that area can advise you but only after an accurate diagnosis is made. Its actually a lack of a diagnosis or an inaccurate diagnosis that will affect her future. Please know that you are not alone and there are plenty of people here to help and support you. Please keep us posted.
Hello, I have an 8 year old that was treated for ADHD for 4 years we done all kinds of things finally found a dr. that knew what he was doing. We had Nurological testing done with computers and all kinds of things. The reason the ADHD meds didn't work was because he was Bipolar. The ADHD meds with stims. was adgitating the Bipolar. That is what happens when the Bipolar is dominant. He also has ODD We got him on Abilify and Clonidine and he is doing GREAT. He is gaining weight and doing wonderful.
I hope you find an answer to your problem and I hope this info helps
Brigitte, I stand by what I said earlier. Your daughter doesn't have a clear diagnosis. The doc is trying meds willy-nilly to see what might help, but I wouldn't go along with it until you truly know what you're dealing with. A SPECT scan will not give you a clear diagnosis. Stimulants (Focalin and Adderall) are used for ADHD. Yes, some kids with ADHD have bad reactions, but it's generally because more is going on than pure ADHD. Trileptal is used for 2 reasons -- epileptic seizures and bipolar disorder. It is not used for ADHD. Is the med working? Has she had an EEG to rule out seizures? There's no other way to know. And you say she doesn't have bipolar so why is she on Trileptal? Clonidine is used for the hyperactivity and impulsivity of ADHD (and to help kids sleep), but it does nothing for inattention. Risperdal is used to calm the irritability and rages of bipolar disorder, but again, it does nothing for the inattention of ADHD. My son was on Risperdal for bipolar and had a horrible reaction -- uncontrollable mouth movements and excessive restlessless. I personally would never touch the stuff again.
You need to find a new neuropscyhologist who will spend the necessary time with your daughter to find out what's really going on. And if she has a diagnosis that needs meds, you then need to find a competent doctor (preferably a child psychiatrist) who will manage the meds in a way that's beneficial to your daughter.
Ok, hon. First of all, I don't buy the scan thing. I have bipolar and never had a scan, and didn't need one to know. My symptoms from as early as I can remember were that of a hyper-nervous, explosive, very very unhappy child. I couldn't focus either, but bipolar mania in kids doesn't look like it does in adults. It's more like a rageful/angry ADHD in appearance, but stims make it worse. Trileptal is a mood stabilizer and anti-seizure med, but it's used for bipolar. When I was a little kid, I was very defiant and moody, cried a lot, was VERY creative (big bp positive trait), talked early, but just was very phobic and unhappy. I remember being afraid of bandages at age 3 and screaming if I saw one. Every year I had a new phobia, such as bloody knees, vomiting, stomach aches, and I never slept well...always had nightmares. My mom says that even as an infant I didn't sleep well and everything woke me up. The big cycling started at age 13 with me, but that is very early to start adult like cycling. Kids usually cycle several times a day or even within the hour, but you can't trace it on an x-ray. Anyways, I also remember that I coudlnt' hear "no." Or if my mom told to me to clean my room, I'd cross my arms, slant my eyebrows down and say either, "Make me!" or "You can't make me!" I have no idea why I felt the need to be so contrary, but I did. The teen years were terrible as I was undiagnosed and untreated, but I did get Ritalin for alleged ADHD. Forget it. I got so high I thought I was flying and then crashed so badly I was put in a depression for months. This was on one pill. If there are mood disorders or substance abuse or suicide on either side of the family tree, those are big red flags for early onset bipolar. There is a great book called "The Bipolar Child" By Dimitri and Janice Papalos. It's in all bookstores or you can go to the library. It explains the disorder and all the meds. I'll post a link for you. I'm still thinking that your child sounds more autistic spectrum though. Speech problems aren't part of bipolar or ADHD. They are classic with autistic spectrum. Does your child socialize well? I'd want a NeuroPsych to look at her if she were mine. If she is getting OT and PT they are probably thinking "autistic spectrum" anyways. My son got those services before his diagnosis and they really helped, but, as time went on, he started falling further and further behind in school and seemed to really prefer playing alone. He'd walk around the playground himself. The teachers would tell him to join in and he'd say, "No, thanks." Take care :)
OlderMom38747.6010532407
Dear Pammar:
Thanks for the information. Actually, I did have our scan (done here at the University of Illinois) sent to California to get a second writeup by Dr. Amen's clinic. However, he is not one of the psychs we went to see. Dr. Amen's recommendation portion of the report was to start TeenLink (which contains GABA, 5-HTP, and L-tyrosine) and add a stimulant after 1-2 months. I didn't initially order this because the doctor we took the scan to didn't recommend it - he just put her on Trileptal which is seizure medication.
I'm curious how you knew you had bi-polar at such a young age. What were your symptoms? My daughter has all the classic adhd symptoms. She is very impulsive and innatentive. She doesn't cycle - however - the doctor that says she is bipolar because of the scan says children cycle every hour. Maggie is pretty much the same. No ups nor downs. .She doesn't have any of the types of autism. She is actually way too social - to the point that it is scarry.
So what is next? How do I help her attention if stimulants wont work? One person who replied to me had their daughter on Risperdal. I know this doesn't help the attention portion of adhd but rather impulsiveness. Maggie isn't a tyrant type child. She does need to be watched because her impulsivity leads her to do things she should not be doing. Basically, things that cause me messes or things I don't want her doing.
I hope I'm doing this correctly about the replies. I'm not sure if I am supposed to send these directly to you or post to the list.
Thank you so much.
Brigitte
Hi I'm so very sorry to hear about problem..My daughter was on all kinds of stimulants and they all had bad results from vomiting to severe headaches to where i was getting a call from school because she had a headache and was vomiting..Then there was the severe weightloss...Now she is taking a non stimulany plus a mood stabilizer called Risperdal and to tell you the truth she is doing great and is also gaining weight...Please i hope this helped..Please keep us informed.... Hey, Bridgette. Unfortunately, there is no way to test for ADHD, Spect test or otherwise. I know Dr. Amen's theories, but they aren't shared by other medical professionals. If your child isn't able to speak, I'd take her to see a NeuroPsych to test for autistic spectrum disorder, which also has frontal lobe brain damage (same as for ADHD, which is why that test isn't accurate). My son started out with an ADHD dx. but really has PDD-NOS. Early intervention is the best for a good prognosis. My son broke in really good speech after interventions. He really didn't talk much until four and a half. Frankly, Dr. Amen is wrong about bipolar. I have it now, have always had it, had it at two, three, four, etc. and it developed as I got older. The more I hear about him, the less I trust him. It doesn't sound like bipolar though. Having it myself, I can say it's more like my own son who has autistic spectrum disorder. A NeuroPsych will do a lot of performance tests on your daughter, which can find ADHD, but isn't limited to only that. They spent a lot of time with the kids and are probably the most accurate diagnosticians around. Frankly, I woudln't put much stock in Dr. Amen. His ADHD 6 is Bipolar DIsorder, whether he calls it that or not, but putting a bipolar kid on stims in dangerous. Risperdal is more of a bipolar med, which can calm raging in some kids. Doesn't usually have staying power and wears off in a few weeks/months. It isn't for attention so your doctor is thinking beyond ADHD, but I'd still find another professional. OH, well. Take care. pammar38747.5680555556[QUOTE=pammar]Hey, Bridgette. Unfortunately, there is no way to test for ADHD, Spect test or otherwise. I know Dr. Amen's theories, but they aren't shared by other medical professionals. If your child isn't able to speak, I'd take her to see a NeuroPsych to test for autistic spectrum disorder, which also has frontal lobe brain damage (same as for ADHD, which is why that test isn't accurate). My son started out with an ADHD dx. but really has PDD-NOS. Early intervention is the best for a good prognosis. My son broke in really good speech after interventions. He really didn't talk much until four and a half. Frankly, Dr. Amen is wrong about bipolar. I have it now, have always had it, had it at two, three, four, etc. and it developed as I got older. The more I hear about him, the less I trust him. It doesn't sound like bipolar though. Having it myself, I can say it's more like my own son who has autistic spectrum disorder. A NeuroPsych will do a lot of performance tests on your daughter, which can find ADHD, but isn't limited to only that. They spent a lot of time with the kids and are probably the most accurate diagnosticians around. Frankly, I woudln't put much stock in Dr. Amen. His ADHD 6 is Bipolar DIsorder, whether he calls it that or not, but putting a bipolar kid on stims in dangerous. Risperdal is more of a bipolar med, which can calm raging in some kids. Doesn't usually have staying power and wears off in a few weeks/months. It won't help any child's attention span. My son was on it for a while and was so lethargic he fell asleep at school and paid less attention than usual (autistic kids have very short attention spans too). IMHO I'd dump Amen and go to a NeuroPsych with more conventional testing methods. Autistism isn't helped by medication. Interventions in school can do wonders. My son is now med free, since we finally got him diagnosed right, and he's doing wonderfully.MOMOFTWOBOYZ:
Thank you for your kindness. I think one of the hardest things right now for me is finding out if Maggie is adhd or bipolar. To me, she doesn't fit bipolar at all - unless she is cycling every hour and I don't realize it. She is pretty typical in what to expect from her.
Here is the thing: I don't see any difference in using the Trileptal - which is used for seizures, or a mood stabilizer for BP.
The Risperadal scares me too. Some people have luck with it but a lot haven't. Are you going to try a different type of medication for your son with Bipolar?
One thing I forgot to mention is that Maggie is very hyper verbal. A lot of the time. She is very social and at times - like right when she wakes up - she is so talkative it is like she can't stop. She does perseverate at times but can be switched off topic.
Do you belong to the apraxia-kids group? I have been a member for years now and have learned so much from them! I attended a few conferences also.
Sincerely,
Brigitte
Brigitte, there is no way you on your own are going to be able to figure out whether your DD has bipolar, ADHD or something else entirely. I know I have said this before, but it is imperative that you find a competent professional (neuropsychologist is best) to evaluate her. It is dangerous to try med after med without really knowing what's going on with her. She could in fact have a condition that cannot be medicated but rather requires other interventions. But you'll never know without getting her a good solid evaluation. Good luck.
Brigitte- If the trileptal isn't helping I highly recommend taking her off it at your next appt. After that maybe you could ask the doctor to hold off on any more medications until the diagnosis is clearer. If you do not accept the bipolar diagnosis then it is probably not the issue. I know for me when my kids have been diagnosed with the things they have it is REALLY obvious when I am reading about it that it fits my child well. The fact that you said your daughter doesn't fit the diagnosis well makes me think that there is likely something else. You really really need to trust your instincts. If you don't like the answers you are getting maybe you need to think about switching doctors until you get the answers you feel are the right ones. I know there are a LOT of us on here that have had to do that.
Yes, i am going to be trying a different medication for my son. With him I really need to do something because his anxiety, anger and aggression are out of control. Like this morning for example he got mad when his brother brought the newspaper in the house(it gets thrown by our door) and so he kicked my 3yo as hard as he could and then he kicked me when I told him to let his brother do it. He was yelling and then refused to go get in the car to go to school, he clung to a metal pole and refused to let go all because he was angry about the newspaper. And last night I wouldn't let him play a video game and he picked up his brother's toy atm machine and threw it 15 feet across the room and it smashed into the cabinets in the bathroom.
No, I am not part of apraxia-kids although I have read through just about everything on that whole site. Our speech therapist JUST told me that is what is going on with him a week ago so it is a very new diagnosis to us. While he has been in speech therapy since age 19 months we were always told that he had a speech delay even though we have known since he was 2 that motor planning was the root of all his issues I had never heard of apraxia so I didn't put the two together. We have therapy tonight with his private theraist who I will be talking to about all of it to see what he thinks. I am glad that site has helped you so much, I will probably join soon. Thanks for the info. sorry i haven't read this whole thread.. but momoftwoboyz mentioned taking your child off trileptal. your child HAS to be weaned off that.. please do this with the help of a doctor..my son was on risperdal caused him to gain so much weight and drool..he was also on clondine caused him to be very whining and he also would talk in his sleep and wake up crying...i'm sorry your having a hard time finding the right medication.. i know how you feel.. we are playing that game right now.. dillon is taking seroquel right now and so far so good..
I think I am going to go the route of yet another doctor. It sounds like a neuropsychologist would be best. We had neuro psych testing done recently but Im not sure if this doctor is considered a "neuro" psychologist or he is just capable of doing testing. I did really like him though.
Momoftwoboyz: I hope a different medication will work for your son. Maggie isn't aggressive in that sense. She just does a lot of things she knows I wouldn't want her to do. Goofy things around the house. However, it appears she doesn't get it when it comes to behavior at stores at times. She gets so distracted by everything around her that she tunes me out and is like a pin-ball with having to touch everything.
You will really enjoy the apraxia list-serve. They are wonderful. Is your slp positive your son has apraxia? I ask because a lot of times it is misdiagnosed and is really a phonological delay. My daughter had it pretty severe - along with dysarthria which is low tone of the mouth - that really impacts her clarity. She is making gains - just slow ones. She can put a lot of words together now but still cannot make many of the phonetic sounds - G, C, L, R, F, etc. Having a child with apraxia is a lot of work! Hopefully your little one will want to work with you at home too. Maggie used to but is getting burnt out and actually does much better with our private therapists and the ones at school. Does he have any other motor planning issues - such as with scissors, dressing, drawing, etc?
I do realize I will have to wean her off the Trileptal. We go next week to the doctor. Is there any way to tell what therapeutic dosage should be used? It doesn't go by weight does it? Right now for the last week Maggie has been on a total of 600 cc per day. Which is 2 tsp.
Thanks, B.
According to the book The Bipolar Child, the therapeutic dose for kids with BP is between 900 to 1,200 mg Trileptal per day, but some children may require as much as 1,500 to 2,400 mg.
Thank you for checking on that. I went to the bookstore before picking my daughter up today and got to look at the book quickly. I plan on going back when I have more time.
I did come across a section. It was a quote published from a study that gave descriptions differentiating a majority of the behaviors of ADHD vs. BP.
I'm probably going to purchase the book so I can copy a few pages and bring it with us to the doctor next Wednesday. This guy really got to me - dx'ing somebody just by looking at a scan and not asking any real questions about the patient. At least this way I can go over this with him if he insists she is BP just by a lot of hyperperfused areas in her brain.
Maggie is very tiny for her age. She looks more like a 4 year old and she will be 6 at the end of April. She also requires much less of things than her body weight suggests. For the spect scan I asked the doctor to give her less than the recommended dosage of chlorilhydrate. He did give her less plus she spilled some out of her mouth and she was still out of it the whole day. She also had a pretty severe reaction to morphine which was given to her w/out my permission after a tonsillectomy 2 years ago. That is a whole other story! Talk about being furious. Maggie is on 600 mg. I wonder why the doctor mentioned to me that after this we might try "another" method and or get blood work done to see how she is metabolizing the medication because he said children metabolize much faster than adults.
Thanks again.
If you don't want to purchase the book, you may want to check out the authors' website, www.bipolarchild.com. There's a lot of good info from the book on the website.
According to the book, blood levels are typically done prior to a child taking Trileptal to check electrolyte levels. A drop in sodium blood levels can occur in 3 percent of those taking Trileptal. It is therefore suggested that every 4th drink should be a sodium-containing drink, such as milk or Gatorade. After the initial lab work, there are no blood levels that need to be taken while on Trileptal.
BTW, kids generally do metabolize meds faster than adults.
And my 3 kids are tiny, too -- all below the 3rd percentile.
Great! Thanks for the information about the website.
I do remember reading somewhere on another site about sodium levels dropping in a small percent of people.
I am of average height and my husband is 6.2. My just turned 3-year old is almost just as tall as Maggie. Sometimes I wonder if she is smaller because of the fact that she did not get proper nutrition in her early months. Right from birth she didn't suck correctly. I should of been recommended to a feeding specialist right off the bat but the doc had us come in 2x/week for weight checks. Maggie was not to her birth weight until over 2 months of age! The doctor never did anything but tell me to make her drink 20 ounces of formula. And how do I make an infant do that? We didn't know it until our slp/feeding specialist came into our lives at 13 months of age but Maggie has dysarthria (low tone of the mouth) too - along with apraxia and other things.
Hi. I am new to this group. My daughter Maggie is 5 1/2. She has verbal apraxia (speech disorder) and hypotonia, and we also believe ADHD. She has a horrible time attending, is extremely distractable, very impulsive, hyperverbal, etc. etc.
We did a brain SPECT scan back in October. I was intrigued after reading Dr. Amen's book on ADHD and after trying Focalin and Adderall prior to the scan. 5 mg of the stimulants did nothing and 10 mg made Maggie so overfocused and emotional. She couldn't stop focusing and talking about our cat. It was like she was driven by a motor. It broke my heart. I couldn't wait for it to wear off. So after our spect scan we saw a few different psychiatrists. One put her on Trileptal for overactivity in the brain region that controls seizure activity. She doesn't appear to have any seizures, however. She is still on it and he keeps upping the dosage every 2 weeks. This doctor said that by looking at her brain scan he thinks she has bipolar. He never even talked w/my daughter. She doesn't cycle nor fit into this category at all at this time. I've taken all the checklists and she has all the symptoms of severe adhd. We just went to get a 2nd opinion with another well-respected psych. who does spect scans. He is also a neurologist. He said no way is she bi-polar and people shouldn't be dx'ing 5-year olds with this. He had us try 6.25 mg of Adderall. I sent her to school w/out telling anybody. When I picked her up and asked her aide how her day was she said not good. She didn't know what was wrong w/her. Very anxious, crying, sort of crawling out of her skin. So this new doctor said it might be good to try Risperdal over clonidine. Both I guess are supposed to help hyperactivity and impulsiveness.
Frankly, that drug scares the heck out of me. I know it is supposed to be different when you treat for adhd as opposed to schizophrenia. However, as a very strong advocate for my daughter, I don't know what to do. She is still on her seizure medication and we go back to dr. number 1 next week. He doesn't know we got a 2nd opinion yet.
Does anybody have any experience with Risperdal? Maggie is a smart girl. However, she is going to fall further behind in school because she cannot attend. She gets OT, PT, and speech in school and privately. The school's biggest issue on not meeting any of her goals is that she has a hard time attending. At home she loses interest after trying to trace her letters before one of them is done. This is a girl who learned the abc's before turning 3. She does have huge motor planning issues but she still cannot independently write a letter on her own.
I worry every day about her to the point I feel sick some times. I know drugs can be trial and error for people. After what I read I'm pretty sure her side effects from the Focalin and Adderall and not common ones. I'm thinking she cannot take this class of drugs due to the overactivity in many of her brain regions.
If your still reading....thanks. Any insight is welcomed.
Brigitte
Brigitte, welcome! If you haven't taken your daughter to have an evaluation by a neuropscyhologist, I strongly encourage you to make an appointment now. Neuropsychs can assess for many childhood disorders, including but not limited to ADHD. Your daughter doesn't have a clear diagnosis, and before you start trying these very strong meds on her, you should know where her challenges lie. Neuropsychologists can be found through university and children's hospitals.
Again, welcome and good luck.
Hi. Thanks for the reply. Actually, we did have private neuropsych testing done last March. The reason for the testing was to help with placement for kindergarten. Her IEP was in April. Maggie only had about 2 hours of testing. Due to her age and also because she wanted to escape from that situation. Great psychologist but not so great testing room - his office. She did very well with things she knew - but anything that involved motor planning was difficult and she didn't want to sit still for it.
At the time of the visit I mentioned about her being very defiant (this has gotten a little better) and the doc said that we need to treat the symptoms as opposed to try and figure out if she is adhd, odd, etc.
She does have a lot of hyperactivity going on - as the brain scan shows. I guess this is why the stimulants are doing the opposite for her.
Sincerely,
Brigitte
brigitte- hopefully I can be of some help here! First of all I do understand what it is like to have kids on both ends of what you are dealing with. My older son(6yo)has ADHD/ODD/BP and my younger son(3yo) has speech apraxia. I do not, however have to try to deal with both things in one child! I am sure that makes it really difficult, each one by itself is difficult enough to treat. I agree that it sounds like the docs don't really have a good idea what is going on behaviorally. What smallmom said about trileptal is right though. It is either used for seizures or as a mood stabilizer in bipolar. It can be useful for impulsive behaviors. I personally am not a big fan of risperdal. My son is currently on it and I am going to request at his next appt that he be taken off it immediately. It is causing major anxiety with him and major constipation. It is only proven to help short term anyway. But it doesn't help my son at all. It is causing more issues than it is helping. I would definitely push for more answers. I hope you find some soon! Good luck!I am sorry to hear this it is a big reminder of what I used to go through with the gro store I would never take Hunter with me to the store because the way he acted.I don't think a nuro and a physchlosist are the same thing. We have seen phsycologist , phyc and everything in between.lol They didn't do much for Hunter only put him on 15 pills a day a diet which we couldn't follow beacause our goal was just to get him to eat because he wouldn't sit down long enough to do that so it had to be something he liked or else he didn't eat at all. The Dr. we see is a peds ADHD BP even touretts syndrom ect... He only done a test that took 1 hr. the most part was on computer with heart monitor on. Hunter was ask some questions. That he answered then a team of Dr's looked over this and then the main Dr. confrenced with them and they came to the conclusion that it was BP/ADHD with Bp being dominant. Bp kids or (mine) seems with the major impulsiveness was the worst he would call names even hit other kids and his brother and myself. That and the mood swings was the worst. i am not familar with the drug you mentioned although hunter has been on everythin Concerta, Strattera, Buspar, Addraell and Addraell xr just to mention a few the last 4 were at one time not counting all the oc meds he was on.
Hunter was the same way he knew what he was doing would get him into trouble, but concenquences didn't matter. I could tell him not to do something and oh my gosh he would do it or die.
He told me the other day that his meds are working because he can think about things now before he does them and he knows things that will hurt him or get him into trouble he shouldn't do. He also said it makes him feel better because he doesn't get fussed on as much now. All the attention he got before was mostly negative his self esteem was terrible. but now his selfesteem is much better. But he isn't getting into trouble as much . He is still 100% boy but it is just normal boy things now it isn't anything major like before.
I hope this helped. If i can help anymore please let me know.
Brigitte,
My Son was very defiant at a very young age I noticed as early as 2 but worse when he went to school (as if he was very angry). It was not constant only at times (often but not all the time). He would hit his brother and me at times, he would go off at times if routine changed. If I went to the gro store on a day I usually didn't go that was reason for rage. We have to stay in strict routine so that he knows what to expect and when to expect it Right down to bath time and the time he gets up in the mornings.That is soooo very important with BP as well as ADHD. As far as meds every stim we tried only mad him much worse and more defiant than I ever seen a child. The specialist we see said that stims will adgitate BP he is also ADHD, but we had to controld the BP to get to the ADHD because BP was dominant. We take him 2 hours away from home and another state away to see his Dr. due to every one wanted to try this and try that we have done everything from meds to Bio-feedback (nuro-feedback), but the prob was that noone would do the nurological testing that he needed, but now we are on the right road his Dr. said it is a 6 month journey, but we would get through it together. The support of a good Dr. means alot as well. He also said we would hit pot holes in the road and seem like we had made a complete u-turn but we would have everything under control in 6 months and we are 2 months in and we haven't had a really bad day since we started with these meds we do have ups and downs, nothing like before. I hope this info helped you I wished I had this web-site 4-5 years ago it would have helped me soooo very much. I hope things get better for you and remember there are no dumb questions we all have some no matter how silly they seem please ask it is better for your sanity to ask then to not and go throught the nightmare alone.
C.M
Brigitte,
I am sorry I forgot to add one part of info.
My son was 7 when he had the testing I was told by those results that I had a 7 year old little boy with a 9 year olds brain and acted like a 4 year old untreated. We will have testing in 6-9 months to see the results that the meds have on this.
Hi C.M.:
Thank you for the information. Sometimes I feel like I know more than the specialists we have seen. I was wondering, is a neuropsychologist somebody different than a psychologist who does neuropsych testing?
My daughter has a severe speech disorder along with all her adhd-like symptoms. What you said about being 7 with a 9-year old's brain but acting like a 4-yr old sort of reminds me of Maggie. She is a smart girl but does have a lot of motor planning difficulty - sort of globally. However, she is very immature. Due to the fact that she was in preschool for 2 years I rarely shopped with her. I would take my younger child when she was in school. I took her to the grocery store back in December right after school when we had a blizzard. We were supposed to go to speech but didn't due to the weather. Well, I knew sort of what to expect even though I explained to her we were going to get a few things. She wasn't at all rageful - she enjoys going to the store - but she acts worse than a 2-year old. She has to touch everything, won't listen to me, and even took a bite out of a tomato while I was ordering at the deli. It is so embarassing! It's like she is way over-stimulated or something and the impulsivity is way too much. She totally knows better but can't control herself - and she starts smiling and giggling. This is one of my biggest issues with her - the fact that she doesn't listent o me at all! She needs so much redirection all the time. I get sick of hearing myself do it too.
After getting feedback from everybody on this forum - I'm beginning to wonder if she should even be on the Trileptal. This psychiatrist we went to see read our first reading of her spect scan and said she was bipolar w/out even meeting her. This doesn't seem right to me. We haven't really noticed any difference with anything anyways. Our speech path thinks she is able to sit better to play games but I don't think it is the meds. Do you know what others have done for the impulsivity issues with our children? Just today our slp said that maybe once we get the impulsiveness and restlessness worked on then maybe she would start to be more attentive. But right now she is all over the place.
Thanks, B.
To Concerned Mom: What type of symptoms of bi-polar did your son have at age 5? A few people mention to me autism. Maggie is not autistic at all. She was dx'd with hypotonia (low muscle tone) at 14 months by a neurologist. Our private slp dx'd her with verbal apraxia and dysarthria (low tone in the mouth) at 22 months. Apraxia is a neurologically based speech disorder that involves planned motor movements. The brain has to plan, then execute and coordinate lips, jaw, palate, etc for speech. It seems like Maggie has a lot of undeveloped origins going on.
She has a lot of motor planning issues which are getting better - such as getting dressed, scissor cutting, writing, etc. She was very defiant and is not as much now. She did not have any behavior issues until the age of 3. She does talk and can say about 7 word sentences. She is still about 2 years behind in her language though. She leaves small words out of sentences.
Anyhow, if a child has the types of symptoms from stimulants that she did, does that mean they are bi-polar? I'm not a doctor, but to me it just doesn't add up. Unless she is cycling every hour and I don't know it. She is defiant at times and I do feel I have to tell her something 20 times or make her do something because she won't do it on her own. She isn't rageful.
To small mom: As of now, the first psychiatrist we saw keeps upping her dosage of Trileptal every 2 weeks. After next week we go to see him because as of now we aren't seeing any benefit with the Trileptal. We did have an MRI and EEG about 2 1/2 years ago that came back normal. According to Dr. Amen and the brain scan, the part of her brain that controls seizure activity is on fire. I'm surprised some of you don't see the benefits of a scan. I don't think it is a cure to everything, but I do believe it can aide in finding out what could be going on with a person. An acquaintance of mine from speech had her son have one. His mri and eeg came back normal but our slp swore he was having seizures. Well, finally one doctor ordered this spect scan and it showed numerous seizures going on. He is now on the proper meds and doing great.
I guess I am so disappointed that I have done all this leg work - getting the scan done - getting 3 opinions from psychiatrists including Dr. Amen, and I feel like nobody can truly help Maggie. My biggest concern is her impulsivity - she can't sit still - and the fact she is so innatentive it is jeopardizing her curriculum. I don't know what to do.
Have any of you tried things like the TeenLink or Brightspark?
Brigitte, again I'm suspicious of the info you got from your SPECT scan. There's no one part of the brain that controls seizure activity. You can have seizures that originate in the temporal lobes, the frontal lobes, etc. So putting your DD on Trileptal when she doesn't have seizures and doesn't have bipolar doesn't make a whole lot of sense. I'll repeat my advice again -- go get a re-evaluation with a new neuropsychologist. Find out what's going on for real with your daughter. And then put the proper interventions into place.
BTW, if a child does not respond well to stimulants, it does not mean he/she has bipolar. It could mean the dx is not right, the med is not the right one or the dose is not right. If she is not having angry, violent, aggressive or lengthy melt-downs, it is likely not bipolar disorder. We can't diagnose over the internet. All we can do is point you in the right direction to get the proper help.
SmallMom38747.8927546296Smallmom:
Thank you for the advice. It doesn't appear the Trileptal has done anything anyway. And no, she is not violent, aggressive, nor angry. She does have some behavioral issues though.
The only reason the psychiatrist put her on Trileptal was because her scan showed what is referred to as "Ring of Fire ADHD" or as he thought - bi-polar. I did not realize until just recently that the Trileptal is widely used for Bi-polar. I was assuming he put her on it because he thought she was having too much activity going on.
It sounds like I need to make an appointment with our neuropsychologist. Maggie did see one for short testing. I basically at the time did it to help with our next IEP meeting. He also wrote up a lenghthy behavioral plan for us. Very similar to 1,2,3 Magic. It worked for a short while. Partially due to us not doing it properly and consistently. Our insurance pays for 50% of these doctor visits. The 2nd psychiatrist we saw last week billed our insurance 0.00. He is the one who said she is definitely not bi-polar but he also recommended (after the Stimulant failed the one day we tried it) Risperdal to help w/the impulsiveness and hyperactivity. It is frustrating to get so many different opinions and diagnoses from professionals. I know they are not God, but I'm running myself ragged trying to figure out what to do next all the time... sigh
I'm so thankful I found this group. We go back to the doctor who prescribed the Trileptal next Wednesday and I'm going to talk to him about weaning her off of it.
Just so I get this straight - for children with Bi-polar - they are usually more on the aggressive side with huge meltdowns frequently??
Thanks again, Brigitte