Help! Divorced and I disagree with ex and the doctors

[firehorsewoman]

Hello.

It has been a long time since I was here. I need some "expert" advice. I just cannot go this alone anymore.

When my 8 yr old difficult child was two he was diagnosed with epilepsy, shortly thereafter that he had a neuropsychologist evaluation and was diagnosed with ODD. He took Trileptal and Risperidal and life was bearable for me. His father and I divorced when he was four. It has not been amicable. He grew out of his seizures so the Trileptal was d/c three years ago. He developed high prolactin levels (no clinical symptoms of increased prolactin though) so the Risperidal was d/c. He was retested by the same neuropsychologist group who reclassified him as ADHD and took the ODD away from his diagnosis. I was shocked to be honest because I believe that he is classic ODD and maybe borderline ADHD.

I beleive that his father is way more comfortable with his ADHD diagnosis since it is more accepted by the general public than ODD. Since that time he has been on every stimulant and non-stimulant ADHD medication with little improvement in my opinion. Although the ex agrees that none of the medications have helped his behavior much he still believes that ADHD is primarily his problem. My son has always worked above grade average and never struggled with learning regardless of which medications he has been on. I do think that he is very hyperactive but the main problem that I have seen with him since the day he was born is explosive meltdowns. That has remained constant. There is never a day that goes by without one violent meltdown. His father says that he does not see that behavior in his house. His sister tells me otherwise. The behavior he tends to get into trouble with at school is not violent but is impulsive. He has been sent to the principal's office for not listening to his PE coach when she asked him to stop playing a physical (hitting,choking) "game" with his friend. Recently his father was called by the teacher for my son talking about her vagina. I do not relate these types of behaviors to ADHD. There is something else going on with him for sure.

I have asked his doctors numerous times to try him back on the Risperidal since that is the only drug that seemed to help him. They tell me that it is "too strong a drug." I reply that it was the only drug that decreased the frequency and intensity of his meltdowns. My opinion does not seem to count, only his father and stepmother's do. The group he sees now are psychiatrists. The group that put him on the Risperadal were his neurologists at the same facility but since he is no longer having seizures they won't see him. They originally came to the conclusion to put him on Risperidal after watching his behavior via the 24 hr EEG monitoring unit.

My kids live at my house 1/3 of the month and 2/3 with their dad. He is remarried. His home is very strict and he attributes the problems I have with my son to me not discipling the way he does. I attribute the difference to the fact that my son has always been worse with me and my ex is in denial about the degree of the problem. Now that I am a single mom the problem is exacerbated. When my son is here it is always turmoil. My daughter and I suffer along with him. I want things to be better.

The doctors never give me a clear explanation for how the ADHD causes the explosive violent meltdowns and also no good medical solutions. The latest drug we are trying is 18 mg Strattera once a day. This was supposed to calm the meltdowns as was the Tenex which did nothing. I see no improvement with the Strattera after 5 weeks.

I would like to hear from other divorced parents that have strained relationships with their ex-spouses and how they cope with it. Any suggestions on how to improve things with a person that will not communicate with you?

I would also like to hear from folks regarding getting the doctors to prescribe a trial with Risperdal again. I have asked numerous times and they just blow me off. I am so frustrated and worried. As my son gets older and bigger the violence scares me more and more.

thanks

 

[BusynMember]

Hi there. Welcome to our board (although I'm very sorry you have to be here).

in my opinion this is not ADHD or ODD (ODD is, by many of us, seen as just a catch-all diagnosis anyway) and ADHD does not cause one to choke a sibling. Can you tell us more about his early development? Has he had many caregivers in his life?

There is probably more going on that what has so far been diagnosed and in my opinion a second opinion by another neuropsychologist would be a good idea. Who has primary custody of your son or do you have joint?

 

[keista]

Welcome! (back)
You asked, so I'm going to give you my "expert" opinion. I agree with your ex and the doctors that the ODD diagnosis does not need to be there. Seriously. It just means your kid is REALLY difficult, but doesn't explain why. It doesn't offer any sort of treatment plan, or explanation of the behavior.

I also agree with you that there is more than ADHD going on.

Unfortunately, that's all I can say given' your situation and what you've shared. I'm in the process of divorce and have custody of my kids. FH hasn't made any attempt to see them in years and doesn't even know his kids are on medication. The man has NEVER asked how the kids are doing, so I don't feel obliged to tell him. Especially since when I was volunteering the information, he ignored it all.

Having said that, it seems like your son has 3 adults to take care of him. Risperdal may be decent medication for him, but it IS very heavy duty stuff. And yeah, it was causing a very undesirable side effects. There are other medications out there that may work even better, but no one is looking for them because the adults are arguing. in my opinion, you're right and ex is right and you are butting heads, but at the same time you are both wrong but refusing to back down from your "right" positions and not exploring where you both are wrong - the 'something else' that is part of difficult child's diagnosis (maybe several 'something else' s.)

 

[buddy]

would they at least agree to a complete Neuropsychological Evaluation??? At least then you could get a fresh, more complete picture of whether it is developmental, neurological, mood, and all the sub categories....

in my humble opinion step mom has no say. She has say for what he does within her home, but not for medical or discipline....she can give her opinion to ex h but he has to work it out with you.

I am not married so this is all from my sister's point of view, I wont pretend to know what it actually feels like or what you are going through, just what I have gone thru as a child of divorce and a sister of divorce......

HUGS....tough stuff.

 

[bigbear11]

Hi and welcome.

I don't have any advice for you from the disagreeing with the ex front. I did however, want to comment on Stattera. Before you give up on it make sure that you are at a therapeutic dose. I am not a doctor but you may want ask the doctor about raising the dose. The indication is 1.8 mgs/kg of body weight so for an 8 yo 18 iis a very low dose... I wouldn't expect to see much result. My little girl is 9 and 60lbs and is on 50 mgs per day. Strattera seems to work great or not at all. It may be that it is not right for your difficult child but make sure that you give it a good try... the non-stimulant benefits are huge if it works for your child. Just a thought...

 

[Rob]

I am new here and just posted about my 22 year old daughter. She has had many out bursts throughout her childhood. When she got to be about 12 or 13 it changed from the more hyper violent reaction to more deep anxiety and depression. I can share what I think has worked and what hasn't. She had decent luck with zoloft for a while. But I think what may havegiven her a boost was some hypnotherapy I did when she was about 16. She was fianlly open to it. That started the process of removing the old negative destructive thoughts with more positive affirming ones. She had a CD with the session recordings and used to listen to it all night. Also she went to a camp for kids with these kinds of needs and that was helpful. She ended up working there a couple summers. Her first relationship was healthy, and I think the reason she decided to try college (I never thought she was capable, but she is in her 4th year).

Aside from all that, I will also say that staying healthy yourself is a good idea not only for yourself, but your son. When out bursts happen they will worsen if you react. I know it is hard not to, but leave the room if you have to. Try to see him in a compasionate way - a being in pain struggling. And you are the beacon of peace for him, if you can hold that space. The cloud will pass, and your light can shine as it does, otherwise the skies darken more. I suggest tools of meditation, relaxation, centering prayer, yoga, or whatever can get your mind tranquil despite the surroundings. Yesterday was hard for me. In the evening I went to a meditation center and it didn't take long for me to release it all, come to peace, then come back home with it. I have been practicing a long time, but any amount of mind quieting is helpful for all involved.

 

[soapbox]

Definitely more going on than ADHD (we're a majorly ADHD house here...).
And... I'm another one that doesn't like ODD as a diagnosis, except as a place-holder. Yes, it describes problem behaviours, and you child may have those to a T. But... ODD as a diagnosis provides no interventions, no accommodations, no medications, nothing. As a placeholder, it validates that there is definitely something going on that is "not normal"... but that means more digging is necessary.

You mention meltdowns as something that goes back to infancy. Has he ever been tested for sensory issues? That would be an Occupational Therapist (OT) evaluation. Sensory issues are a HUGE source of meltdowns. No medications, but there are therapies, accommodations and interventions that help.

If you suspect that there is any element of ADHD, then you could try to familiarize yourself with the things that either "go with" ADHD, or "look like" ADHD in some form.
For example, lots of families on this board have had a child diagnosed as ADHD, and it ended up being Autism Spectrum Disorders (ASD), or even BiPolar (BP).
Others, like our family, have ADHD "plus".

Some of the "plus" elements can be:
- sensory (Occupational Therapist (OT) testing)
- learning disabilities (dyslexia, dyscalcula, etc.)
- motor skills issues (fine and/or gross, both of which are a huge problem in school) - Occupational Therapist (OT) testing
- auditory processing disorders - including the ones not always tested for, like auditory figure ground (difficulty picking out the important sounds in the presence of background noise). (Speech Language Pathologist (SLP)/auditory specialist in APDs)

Do some research. See if anything jumps out at you.
From the way you describe your X, he may be more open to things that "go with" ADHD if he is already comfortable with the ADHD diagnosis.
Maybe just approaching it from this aspect might get buy-in for some more detailed testing?

 

[susiestar]

Hi! Others have given great advice. PLEASE get a private Occupational Therapist (OT) evaluation for sensory issues. If you don't have them then you have NO idea how much they can destroy you. I have always had them and there was never any real help for me. Even as a kid all that had to happen to destroy my day and almost everything was to put me into something that itched. I could not focus, function or cope and I was very explosive. Luckily my mom was partly raised by great aunts who dressed her the way old ladies thought girls should dress and that meant in itchy clothes. So she swore that her kids would NEVER wear itchy clothes. Bless her heart, she followed through 110%.

Occupational Therapist (OT) help for sensory issues can do a LOT. My difficult child got a LOT more control once we were able to help with the sensory issues.

If you have not read What Your Explosive Child is Trying to Tell You by Doug Riley, it is a must read. It can really help.

The link in my sig will help you create a super powerful Parent Report - which is one of the best tools a Warrior Mom can have. It is a report ALL about your child and you take it to all appts and keep everything in it so that you can let docs/teachers/whomever have copies of the sections that will help them and you can get all the info they need to them efficiently. Moms here before me created the outline and the thread will help you create one. It truly is a HUGE help and well worth the time it takes to create it.

As for risperdal, if it caused the prolactin problem then it isn't SAFE for your son to take it again. They can try other medications and should, but you have to understand that they are refusing to try it again for his own good. been there done that with medications and it is frustrating.

I am not sure how to work it with your ex because I have never had one. But maybe the two of you could meet wtih a therapist to work things through for your chld's sake. You both owe your son two parents who work together because he needs that from you.

He also should have an evaluation for assistive technology through the schools. There are a lot of ways that they can help him.

I hope this helps!

 

[firehorsewoman]

Thanks to all for the advice especially to Susiestar for the link to the form. I try to go to the appointments with my ex but if I am going many times he will not. If I cannot make it, then I type a letter for him to give to the doctors. The last appointment was five weeks ago and we were both there. The person we saw that day (a fellow-since it is Texas Children's hospital we see different people, residents etc and then the attending doctor usually makes an appearance but she was out of town so they had another senior doctor take her place after the fellow became overwhelmed by us) seemed totally overwhelmed by our situation.

I first started educating myself on conduct disorders six years ago and was pretty active on this site but under the name tiredcheryl. I am in no way an expert but not a newbie either. Also, my nephew in another state has Aspergers and sensory processing disorder (SPD) so I read up on those too. My son's first neurologist thought that he had sensory stuff going on and wanted him to see an Occupational Therapist (OT) but between all of his other appointments and the divorce it never happened. I have put this all in writing to his current doctors (also at TCH) and they ignore me. My ex does not believe that our son has anything besides ADHD. I remind him how our son is always taking his shoes off, can't stand to have one drop of water on his clothes or must change, is sensitive to noise and light, but he just doesn't see it.
His neuropsychologist exam done at TCH about a year ago was supposed to be complete. So, his doctors and my ex do not see any need for further testing.
As far as the Risperdal goes, I believe that they are covering their butts by not giving it because of the elevated prolactin. I think we should treat the patient and not the labwork. My son was not growing breasts nor lactating. Elevated prolactin is not that scary a risk in itself. I would like to put him back on it and of course monitor prolactin and physical symptoms closely. But they refuse.
He has another appointment this coming Friday and I will try to go depending on my work schedule. I wish that it were mandatory for both of us to be there in the same room with the doctors at each appointment.
The thing that I just can't get across to them is the degree and frequency of the meltdowns this kid has. I am going to start videotaping them.
We have joint conservatorship with my ex having primary custody. I get them about ten days a month. We arranged it that way because my ex works for himself and has a flexible schedule, he has a very involved mother and a wife at his beck and call. I have no family or friends in this area to help me, work very long hours, and decided that they were better off with their dad than with a nanny.

Having a child like this is difficult even under the best circumstances but when you do not get along nor communicate with the other parent it exponentially worse.

thanks for the advice!

 

[DDD]

What does your easy child share with you about her brother's behavioral pattern at Dad's house? I would think her input would be valuable unless the friction between parents/households has been ingrained. Do the children go to the same school when staying at different homes? Have the same social schedule/friends?

Since you are not a newbie I'll speak a bit more frankly. Is it remotely possible that your difficult child is displaying different behaviors at your home due to the stress of adapting? I was divorced with children in elementary and even the PCs showed signs of stress when they visited their Dad. Could that be a big factor?

It sure seems like you have accessed quality professionals so that doesn't send up a red flag. Have you kept a brief journal showing when your son gets upset (times of day, activity preceeding outburst, degree of tantrum) etc. so that you can "see" and also "share" patterns and frequency? That's been very valuable for many of us.

Glad you're back but sorry you need to be. Hopefully "the family" will help you find resolution. Hugs DDD

 

[JJJ]

If your son is better behaved at his fathers house, it may not be due to his stricter rules as much as a stricter routine. I understand that there is friction between you and your ex, but maybe you can determine what the routine is when he is there and see how much of it you can mimic. While I agree with your ex that ADHD is a real diagnosis (where as ODD is more of a placeholder while they figure out what is reallygoing on), I agree with you that this sounds like more than ADHD.

Have you spoken with the doctor about trying Clonodine? It is often used on kids with ADHD that don't respond to stims. It may be a way to get your son on a medication that helps while allowing your ex to still say it is "just" ADHD.

 

[firehorsewoman]

Hello again.

The Strattera was suggested for the same reason JJJ you are suggesting Clonodine. He has only been on a low dose of Strattera for the past five weeks, was also taking Tenex and Adderall at the same time until just this past week. I will look into the Clonodine.

As to the questions regarding the differences in behavior at the two homes: My ex does have a stricter routine but also uses more physical punishment...in his words " beat his ass." I brought this up at the last appointment with both my ex and the doctor. All she said was that "we recommend that both parents try to be consistent in their discipline strategies". I sometimes resort to physical activity with him mostly shoving him away from me, etc but I do not spank nor "beat his ass." That is one difference. Another is that my ex is big and male. Also, I have to be both mom and dad when the kids are at my house. He quickly remarried and they have a "mom" figure there. She is also very strict. My daughter tells me that the outbursts happen at his home but do not get as out of control as they do at mine because her brother is afraid of his dad.

All that being said, I do realize that my son has always had a problem with me. Prior to the divorce I was the main trigger and target of his meltdowns. Now I would say that I share that 50/50 with his sister. When I was married my ex did not think my son had any behavior problem until he was asked to leave three different preschools. If you ask him about that today he will make excuses for why my son left those schools but I have paperwork from the last one asking us in writing to remove him. I also have paperwork from the second one where they brought in someone to evaluate him his behavior was so extreme. I was relieved when the epilepsy docs recommended antipsychotic medication after observing him for 24 hrs via camera. I finally felt like I was not the one that was imagining how severe his problem is. My ex was not there for the 24 EEG and ignored the information though did not object to Risperidal.

When he was in kindergarten he was in private school. On the second day of school I was met by his teacher and the principal because they found his behavior so troubling. We got through the year okay mostly because my son is very smart and his teacher eventually got used to his behavior. My son now attends public school and is in 2nd grade. He gets straight "A's" but usually gets an "N" (needs improvement) on behavior with an occasional "S" satisfactory about once per quarter. His daily behavior chart always says "not following directions and talking" and then there have been the inappropriate things I mentioned previously.

Perhaps part of the problem is me? I would be easier to fix so I would welcome that. But then I think back to the first year of his life, cried constantly, put on baby zantac and every colic remedy out there, changed formula umpteen times, swaddled him and carried him in a sling 24 hrs a day to get him to calm down....my ex would just stay at work as long as he could and tell me "doesn't this kid ever stop crying?" So for me, this is how it has been since he was born. Was I doing something wrong when he was an infant too?

My ex blamed me for the behavior problems and it was a huge contributor to the reason we got divorced. He is still blaming me. I am happy that my son does fairly well in school and at his dad's but I want things to be better here. It is hard for me to be as structured in our routine since the days I have them vary and are never strung together. My son definitely does not transition well but there is more to it than that. Even when I was married and his dad was here the majority of the really bad meltdowns happened with me or at preschool.
I have had him this entire week because his father is on vacation. The routine and flow of the day has gone smoother the longer the kids have been here but I have seen no improvement with the frequency nor intensity of the meltdowns. So there has got to be more to it than structure and routine.

I am just so tired and confused.

ugh

 

[firehorsewoman]

I think that Clonidine is the same or similar to Tenex. We tried that for several months and recently took him off after seeing no change.

 

[firehorsewoman]

I also wanted to ask parents of bipolar kids how they were diagnosed, if their children have concurrent ADHD and what medications have worked for them.

I realize that many of these disorders overlap but the more I read about BiPolar (BP) the more I wonder if that is what is going on. Some of the symptoms that I read about BiPolar (BP) fit my difficult child: talks non-stop, has trouble falling asleep, sometimes nocturnal behavior, will suddenly start laughing hysterically (usually at night) for no reason and this will go on for a LONG time and becomes more vigorous the longer it continues-almost to the point that I was wishing that he was having a meltdown instead, has a fascination with talking about anything sexual or physical (bowel movement, penis, vagina, uterus, "man-boobs", etc), quick to anger, impulsive, likes to take all of his clothes off and refuses to put them back on (luckily hasn't happened in public recently.)

Does any of this sound like BiPolar (BP) to you guys?

 

[JJJ]

He is having problems across ALL environments -- your house, dad's house, school and in the hospital (during the EEG). This is not a parenting issue, it is a mental health or developmental issue.

Is he still in a private school?
Do you have joint legal custody?

 

[buddy]

I think that Clonidine is the same or similar to Tenex. We tried that for several months and recently took him off after seeing no change.

It is in the same category but one may work and the other may not... Just like in all the categories of medications. Doesn't mean it will, just that you dont know if it wont either it is such a frustrating thing.

 

[firehorsewoman]

He is having problems across ALL environments -- your house, dad's house, school and in the hospital (during the EEG). This is not a parenting issue, it is a mental health or developmental issue.

Is he still in a private school?
Do you have joint legal custody? /QUOTE]

No. Public school, second grade
Joint conservatorship, primary custody is dad, I get him about ten days a month

 

[DDD]

I wish I had something brilliant to suggest but in lieu of that....I really think that if you keep a brief record of his behaviors every time he is with you a pattern will display itself. The sleeping pattern is important. The vulgarity or inappropriate comments are important. Aggression is important. Sometimes we know there are problems but they seem almost completely random...until we record and review. Obviously you are not in the power position parenting but if you can demonstrate consistent issues you will be prepared for the next round of parental conflicts. Hugs DDD