New Here, son prescribed Risperdal, can't bring myself to give it to him

[robp]

Hello,
This is my first post. My son is 5 years old. Has been in Occupational Therapist (OT) since age 3 for sensory issues. Took him to a behavioral therapist - he said he was Bipolar & ADHD during his first appointment. Had him evaluated by a Neuropsychologist right before he turned 5. Her diagnosis was:
ADHD - combined type
Emotional Dysregulation
Rule out Mood Disorder
ODD - provisional diagnosis

She said she did not think he was Bipolar but to watch out for it in the future. She said he had some worrisome behaviors but that he did not have trouble sleeping or wetting the bed and that was a good sign.

She recommended we go to a psychiatrist & a behavioral therapist. Went to psychiatrist two weeks ago. He said my son has a mood disorder and will for the rest of his life. He didn't talk to my son, this was based on family history of depression & mood problems and my son's sometimes aggressive behavior. The P-doctor told me he would eventually need to be on Risperdal + a stimulant (problem Concerta). I said no. He prescribed Tenex as an alternative. This made my son MORE hyper, asked lots of questions in a row, had trouble sleeping, seemed sort of manic to me. Went back to P-doctor. He said no more Tenex. Now he has prescribed Risperdal & Focalin (because it is easier to swallow). I asked him why we couldn't do Depakote, and he said because the liver issues are more pronounced in kids. I CAN'T BRING MYSELF TO START MY SON ON THIS ROLLERCOASTER.
I just don't thin it will ever end.

I have been told I may be on the Bipolar spectrum, and I have tried every medicine there is and react negatively to almost all of them. I am very sensitive.

Has anyone ever had success (with a child like this) with things like:
gluten-free, casein-free diet
Occupational Therapy
Behavioral Therapy
sports (swimming & soccer)?????



Please help.
Mom - age 34, depression, possible Bipolar II, Trichotillomania - take Zoloft
Dad - age 36, no mood issues
DS #1 - age 5, ADHD, ODD - provisional, Mood Disorder - not otherwise specified
DS #2 - age 2.5, no mood issues

 

[Marguerite]

What are the problem symptoms? Not that we can diagnose on this site - nobody can diagnose long-distance and we're not medical experts, we're just parents.

I would be nervous, though, of a bipolar diagnosis apparently made so readily. Especially at 3 years of age, it is very easy to confuse bipolar with Pervasive Developmental Disorder (PDD) in various forms as well as other conditions.

Even when you're older, it is easy to confuse it.

Your instincts are kicking in, perhaps because you feel that more needs to be explained.

I agree with not medicating him until he's been assessed PERSONALLY more thoroughly. A neuropsychologist assessment is definitely a good idea, it is a lifetime investment.
The problem with any diagnosis made by just looking at FAMILY history, is that our understanding of various medical conditions has changed considerably in recent years. Even when difficult child 3 was diagnosed, that was 12 years ago and ideas have changed since then. So in your son's case, the doctor was hearing diagnoses made about people decades ago and who knows what these people would be diagnosed with, if reassessed today?

Regarding the medications - if he's bipolar, I believe a stimulant is risky. However, stims as a rule wash out of your system very quickly so if there is a problem (apart from possible bipolar problems) then you simply stop the medications (no need to wean off) and it's gone.

Risperdal - both my boys took that and again, when they stopped we had no problems taking them off it. We did wean off, but it was a fairly quick process (a matter of days) and there were no problems. I guess because for them, there wasn't a lot of change when they took it anyway.

So in general I wouldn't worry about those medications in terms of "merry-go-round". As for the young age - difficult child 3 was also 3 years old when we started him on stims. There are a nuber of different stimulants, Concerta is only one although it does seem to get chosen first. In our case, we already had found problems with ritalin for difficult child 1 - he was getting rebound. So he was changed to dexamphetamine just as the younger two were diagnosed as needing a stimulant as well, so the doctor put them all on dex. We get it compounded privately and so far it's been the best option. We did try difficult child 3 on Concerta but it just wasn't as good; plus he was also getting rebound like his brother.
Then when the therapist expressed concerns about difficult child 3 being on a stimulant when he also has bad anxiety problems, the doctor tried difficult child 3 on Strattera. THAT was a disaster - he became quite manic, quite irrational and violent, within three days. We stopped it, cold. And although it took a couple of days to wash out of his system (any sustained-release medications take longer to wash out) he is now back to his old self.

So, long-term issues with medication problems - nope. Starting stimulants young - again, not a problem because in fact if the medications are going to be beneficial, you will get a "WOW!" factor encouraging you. If there is no amazing difference, then you can in all conscience stop those medications.

We did cop flak from people for starting difficult child 3 on such medications so young, but we were so delighted by the wonderful improvement in him that we felt confident enough to tell people to go take a flying leap. difficult child 3's language delay was the first and most obvious thing to improve, within a WEEK! For us, it was the WOW! factor which encouraged us to keep on with it.

Now, what do you do while you're waiting for a diagnosis? You don't want to try medications, you've made that clear, but there are more things you can do. A lot of us on this site have found a lot of useful direction in "The Explosive Child" by Ross Greene. You take from this book what feels a good fit and leave the rest. But always revisit the book because as things change and your child gets older, different tactics can be tried.

There is a sticky thread on this Early Childhood forum which discusses how to adapt this book for younger children. The thread can also give you some advance ideas that can work. It doesn't matter what the diagnosis, these kids often develop similar problems and often the usual parenting techniques, the sort of stuff you'd find in Dr Spock or other parenting books, not only don't work with these kids but can actually make them worse. difficult child 3 was on the point of getting diagnosed with ODD when we began using Explosive Child techniques on him. It turned it around. We still need to keep these techniques to the fore in how we handle difficult child 3 but the improvement is always happening.

Welcome to the site, glad you found us.

Marg

 

[robp]

Thanks for the reply. My son is actually 5 years old, not 3. He was a difficult baby, colicky, etc. Had normal pregnancy/delivery but had to go to the NICU after birth for tachypnea (fast breathing) and had to have oxygen for 8 hours. I took Zoloft during pregnancy. We were sent home from the NICU and then had to go back to the hospital when he was 7 days old for more tachypnea (fast breathing) and were admitted for a week. He had a spinal tap and was put on anti-biotics for possible meconium aspiration. He had bad reflux for the first year and was put on Zantac & Reglan.

He had no developmental delays, talked early. Had/has no language delays. The neuropsychologist said she feels confident that he is NOT on the autism spectrum so I assume that means he could not have Pervasive Developmental Disorder (PDD)? I read a list of Pervasive Developmental Disorder (PDD) symptoms and he might have 2 or 3 of them but has no language delays. He also does not fit the diagnosis for Aspergers from what I've read.

His main symptoms are:
Hyperactive - extreme
Impulsive - when I say no, he almost always has to say or something to lash out ("i don't love you!", slams doors, etc.)
Defiant
Moody
Shy
Mean - this is not a clinical term (LOL), but he can just be mean & spiteful sometimes
Rigid/controlling
Sensitive - to touch, clothes, medicines, foods, sugar, dyes, chocolate
Has severe peanut allergy & seasonal allergies
Hard time with transitions - cries after school almost every day on way home
Has oral needs - chews on shirt (esp. when nervous), obsessed with snacks, sugar, etc., gum

Positive things:
REALLY good at sports
creative
social (after warming up)
competitive
good memory - neuropsychologist said he has memory of an 8/9 year old

I am not against medicine. I am just nervous because he (and I ) are so sensitive to medications. And Risperdal seems to have a lot of negative side effects.

We have tried Occupational Therapy for 2 years, and it doesn't seem to be helping much anymore. He starts Kinder in 9 months (is in 5day Pre-K now), and I'm trying to get things under control before he is in Public school. Trying to experiment with medicine now before I have to disrupt things in his first year of school.

So glad to have found you all! Thank you so much.

 

[Marguerite]

My son is actually 5 years old, not 3.

Sorry. Blame it on my need for reading glasses!

We recommend you don't use real names here (yours or his) so at any stage now or in the future, you can vent here and know that the person you're venting about (child, spouse, doctor, teacher, anybody) can't Google your name or the child's name and find out what you are saying about them. It's a security thing for your benefit and the child's. I know there were a few times when I accidentally used a real name or location and had to let that thread die, because I didn't know how to edit it out. (although editing is easy, I've worked out how to edit my own posts now).

The early history of breathing problems/needing oxygen - some of it sounds like a precaution (ie in case he swallowed meconium, or worse - aspirated it) but the problems they feared thankfully didn't eventuate. However, there can be other more subtle long-term problems. Or the problems you're having now could be completely independent.

For example, I have a nephew who stopped breathing a few times after he was born. In those days the babies were kept in the hospital nursery, only were given to the mothers at feeding time. My sister entered the nursery to find her son was blue. Another time he stopped breathing while she had him for feeding time. Each time she shook him and he began breathing again, but she always wondered what happened when she wasn't there to see. Long-term with him - some slight spasticity and some mild intellectual delay. You wouldn't really know it these days. He's a deep thinker, but not an intellectual.

Another example - difficult child 1. He was born only three weeks early but had difficulty breathing for the first few hours. They didn't give him oxygen, just noted a pigeon chest and the way his diaphragm moved as he struggled to breathe. It settled after a few hours; but then he developed bad jaundice and spent two days in a humidicrib. Despite all this we do not believe his later Asperger's plus ADHD were due to this tricky start.

When easy child 2/difficult child 2 was born, the previous history of two babies with jaundice had the pediatrician trying something different - I was asked to express my breast milk and boil it in the microwave. He said that in some cases (he believed in my case) there is an enzyme in the mother's milk which is breaking down the baby's fetal hemoglobin. Once the baby is a little older tis is not a problem; it's only in the first few days that a little bit of jaundice can rapidly become a big problem if this is not addressed. Once the jaundice eases enough, the baby's liver can cope with the enzyme. So we broke the vicious circle by heating my milk enough to destroy the enzyme - more of a simmer than a boil, and only for a minute. And amazingly, easy child 2/difficult child 2 recovered from the jaundice within a few days. So we did the same with difficult child 3 - same story. The first two kids had jaundice for six weeks or more, but the last two were clear of it fast.
And yet when you look at the diagnoses - difficult child 1 is not significantly worse. And easy child, who had a lot of problems from before birth, is the least Pervasive Developmental Disorder (PDD) of the lot.

so we had this early neonatal history, but we don't think it's relevant to the Pervasive Developmental Disorder (PDD) stuff.

Sometimes it's relevant, sometimes it's not. But of course it's always important to mention it.

I hope this helps.

Marg

 

[tiredmommy]

Welcome! Your list of attributes sounds eerily similar to my Duckie, except she's not good at sports (visual tracking problems). My daughter has had autism/Pervasive Developmental Disorder (PDD) and mood disorder ruled out for now despite a strong family history. What she does have in common with your son is allergies and sensory issues. AND she was diagnosed with cough variant asthma just over a year ago. And the strangest thing has happened since we got her asthma and allergies well controlled: her ODD is *almost* gone. Not quite gone, but I know there is some learned behavior going on and it flares up when she's stressed or not sleeping well from being sick.

FWIW, I'm under the understanding that a mood stabilizer is generally tried first and titrated up to a therapeutic level for bipolar before a stimulant is given. Stimulants, I believe, can fuel mania in unstable bipolar patients.

I think I would like to see your son to have a multi-disciplinary evaluation at a Children's or university hospital, they may be best equipped to see if his behavior stems from medical rather than mental or neurological causes.

 

[robp]

Thanks for the info about your daughter. If my son truly has a mood disorder, do you think there is anything a hospital can really do to help him? I have a mood disorder so I am pretty confident that the dr. is right on. Though I know my son's allergies do exacerbate his symptoms. I have also read about PANDAS and wondered if maybe this might be contributing to his symptoms, but PANDAS is episodic, and my son's problems do not change much (excpet for in the summer when he is really active outside).

I spoke with the P-doctor today. I had questions about starting my son on Abilify instead of Risperdal. He said Abilify does not have less side effects, but I have read otherwise. He said he has never had any patient develop TD (Tardive Diskensia) from Risperdal or have any issues with Prolactin (I've read that some male patients can develop breasts that didn't go away). I'm thinking of getting a second opinion before starting him on this. Meanwhile, the Tenex that he has been taking (which made him more hyper) is also improving lots of things - less sensitive to touch, able to concentrate better, holds good conversations with us (instead of constant complaining or asking for things). I'm kind of hesitant to stop this medicine. Ughh, so confusing.

 

[tictoc]

Robp,
Your story sounds a lot like ours. My difficult child is now 7 and we are inching closer and closer to the BiPolar (BP) diagnosis.

Like you, we were very reluctant to jump on a BiPolar (BP) diagnosis and we are reluctant to try APs (though I'm officially there now). My son also has been in Occupational Therapist (OT) for 2 years (since he was 5) and we have seen some improvement in his sensory issues over time.

What I think is most obvious in your messages is that you 1) don't have confidence in the diagnosis and 2) think going straight for Risperdal is a bit drastic. So, I would say that first you need to get very confident in the diagnosis. Get a second opinion if necessary. Once you feel like you have gotten the best opinion you can get at this time, with what is currently known, then it will be easier to tackle the medication question.

As for medications...I know how you feel about jumping to APs. But, if you son does turn out to be bipolar, there is a good chance you will end up there. However, there are other mood stabilizers available, such as Trileptal, Topomax, or Depakote, that are not anti-psychotics. I would recommend the book, "Straight Talk about Psychiatric Medications for Kids," by Timothy Wilens. It is a great starting point for thinking about medications and their possible side-effects.

For what it is worth, my son had an identifiable episode of mood cycling (ramping up, hypomania, followed by depression), between Thanksgiving and Christmas. Our psychiatrist wanted to prescribe Abilify, but husband vetoed that. So, we went with Trileptal. I think a lot of psychiatrists do go straight for APs these days, but I know where you are coming from on wanting to do something else first.

Good luck.

 

[jal]

robp,

I started to see signs of Prolactin when difficult child was on Risperdal at age 4. Got him off it immediately.