Why is this happening to our family?

[bellaswan]

Hi Everyone,
I am new here and writing this with desperation and hopelessness. I have a 5 year old son who has serious problems. He wasn't "typical" from birth, although at the time I didn't know that since he was my first. I have since had another child and now understand that the way my son has acted since birth was not normal. From the time we brought him home from the hospital he screamed, cried and had fits. My husband and I did not sleep for the first 6 months of his life. The ONLY time my son would sleep was if I was holding him firmly sitting up or rocking in a rocking chair. We were told he was just "colicky." I would complain to my friends about how hard it was and how exhausted I was and they would just look at me funny. My maternity leave was such a nightmare that I was glad to go back to work. Since then things have only gotten worse. My son began getting in trouble at daycare at age 2. We also could not do anything to control his behavior at home either, despite trying everything, and I do mean everything. He started Kindergarten this year and is already on a behavior plan. Last Friday he punched another child and was formally written up so now we have a meeting with the principal. I'm pretty sure I know how this meeting will go...she will tell me what happened and look at me like it's my fault and I should know how to fix it. Well I don't. Before I had children I thought these types of behaviors were reserved for kids who were abused, neglected or exposed to drugs/alcohol. My son suffered none of these and comes from a loving, stable home. Here are some of his behaviors: no fear/respect for authority, does not listen to or follow instructions, deliberately annoys those around him, hitting/aggressive behavior, extreme hyperactivity, unable to focus on one thing for longer than a minute, lies, steals, tantrums/rages. He has been evaluated by a psychiatrist with a working diagnosis of ADHD and Mood disorder. We have tried Adderal, Ritalin, Vyvanse, Focalin and some others and they either didn't work or made him worse. We also started on Abilify with slight success but even that has fizzled out, even with increased dosages. We tried Zyprexa last week which made him scream for 3 straight hours. Now I guess we'll have to go back to the drawing board yet again. I don't know what to do to help him anymore. Some days I just don't think I can face another day of dealing with him. I feel like such a horrible mother for saying this but sometimes I have to dig really deep to remember that he is my son and I love him. Which of coarse I do. My husband also tries so hard but this is tearing our family apart. Thank you for listening to my story, maybe somebody else out there has the same story as me.

 

[InsaneCdn]

Hi, and welcome.

First... it isn't YOU. (you knew that, but I had to tell you anyway.)

Sounds to me like the "working diagnosis" isn't working... ADHD + mood disorder not otherwise specified?
How long since the last evaluation?

I'd be looking into a comprehensive evaluation - someone who will spend multiple hours looking at things from all sorts of angles.

And, because those take time to get in to see, an Occupational Therapist (OT) evaluation would also be useful - they can test for sensory and motor skills issues, and have therapies and interventions that help. The way you describe your son's first 6 months really makes me think there must be sensory issues. Sensory overload is a huge behavior trigger.

 

[buddy]

Hi! I'm sorry you had to search us out but glad you found this awesome forum. My son has all of those symptoms too and he is diagnosed with Autism Spectrum Disorder and brain injury because he had a brain mass which was found and removed at age two. He was treated as behavior only when very young and even a neurologist he saw for seizures refused to say anything was wrong until someone forced the states hand (he is adopted from foster care) and a new neurologist sent him for an emergency cat scan and he went into brain surgery that day. I tell you that not because I think your son has a brain mass but to let you know that many professionals miss things and if your son is this intensively challenged, my instinct would be that there is something going on beyond adhd and a mood disorder. Those are actually symptoms of other issues and another option is that there are other issues that are making him look as if he has adhd/mood disorder. My son's mood disorder when he got older turned out to be temporal lobe seizures. he was tested for that and they said no..that's not it, so medicated him for years for anxiety. (and yes, he is anxious BUT...) in the end another neuro. group found the seizures and he now has some relief. It is really a lot of work to dig through all this, right? I know what you mean about needing to force yourself to feel loving some days. As you said, of course I always love my boy but there are days I feel like if he was gone I would not miss him a bit and even worse, some days I wish he would hurt as much as he is hurting me (he can be aggressive). My grown up brain would never go there but just that fantasy/feeling is sad to me.

I agree that a really hopeful option for you would be to have a comprehensive evaluation done by a specific kind of evaluator that is not purely connected to neurological disabilities nor mental health conditions. A neuropsychologist is a good professional who is a psychologist who has expertise in assessment and connecting how the brain works with behaviors. They can help sort through the many options for diagnosis and even if there is not a diagnosis they can help you with obtaining the right direction for therapy and further evaluations.

I fully thought the same as IC that I wonder if there is a sensory processing problem and it is very sad that many doctors do not recognize this in infants when they go on far beyond the colic types of crying. I would still try to get a neuropsychologist evaluation but they can take a while and you can often get in to see an occupational therapist (Occupational Therapist (OT)) much sooner. Make sure when you can for the evaluation you say you specifically want someone very skilled in evaluating sensory integration.

IT might be subtle so you might not notice this but just in case, is he sensitive to clothing textures, picky about food, does he make noise for noise sake (like loves echo types of places), or cover his ears in noisy places, or maybe he touches everything or refuses to let people touch him? My son has smell sensitivities and sound and searches for extra input like smashing his body into walls and hugging people too hard, etc.

How does he do with other kids when he plays? What kinds of things does he like to play with ? Does he make eye contact consistently? Is he super interested in some things like trucks, trains, colors, numbers, anything?? Does he do pretend play that is more than imitation of what he sees and hears?

If you decide to get further evaluations, I will share that it is important to state that you want teh evaluations, not to ask if you think that he should have one. many doctors will poo poo it and you are beyond that. Not that you have to be mean or anything, I just go in to our pediatrician. and say I need a referral for X. He has learned now that when I do that (after all these years) it is because something is going to be found. HE has learned a lot from us, lol.

Take care and please know you are not alone.

 

[DammitJanet]

You pretty much described my son his first few months until we took him completely off of formula. Is your son allergic to milk per chance? Even if you dont think he is, try taking it away for a month and see if it has any effect. My son screamed bloody murder until we took away all formula and then he became a pretty normal baby. He then became a pain in the rear as he grew older though.

If they believe your son has a mood disorder of any kind they are giving him completely wrong medications at least in my opinion and I have bipolar and I raised a son with a mood disorder. Go get the book The Bipolar Child and read it. In there you will find medication recommendations but I can give you a short synopsis of what they say. Normally with a mood disorder you start with a mood stabilizer like depakote, lithium, tegretol, etc. You may even need two of them. Then they may add on an anti-psychotic like risperdal, abilify, seroquel etc. Normally they dont give the ADHD stimulants or any depression medications to anyone with a mood disorder because it tends to make them worse.

At least not until they are completely stable on the mood stabilizers and you arent there yet.

Now obviously I cant tell you what your son has or doesnt have because I am not a doctor and I certainly cant see him. I do know he sounds a whole lot like other little boys I know who I have met who have had mood disorders and have done well on medication. Also...ask the school for an IEP. You will need one.

 

[BusynMember]

I agree with a total evaluation for your son. I'd like to ask a few questions that can help us help you

1/Does your son make good eye contact with both you and strangers? Does he have any strange quirks or obsessive behaviors? Did he talk and walk and potty on time?

2/Are there any psychiatric problems or neurological differences on either side of his family tree? Any bipolar? Autism? Schizophrenia? Depression? "Funny" relatives who had nervous breakdowns, but did not get diagnosed?

3/Does he do well in his classes? Can he relate well and play normally with his SAME AGE peers?

4/Can he transition from one activity to another without crying?

5/Does he cover his ears if he hears loud noises? Will he refuse to eat certain textured foods? Is he fussy about what he wears because of the feel of the material? Does he "mouth" things a lot, like suck his shirt or put objects into his mouth?

6/Does he make any loud, high pitched noises for no reason or scream for no reason (I do not mean during a tantrum). Does he know how to engage in imagniative play? Does he repeat things he has heard verbatim, such as cartoons or things his teacher says?

I am thinking your child is probably wired differently than other kids and is misunderstood and it may look as though he can control his behavior, but maybe he really can't. I would give him a complete neuropsychologist evaluation. You probably won't get the right diagnosis. at his age, but you can go in the right direction. To avoid getting him labeled the "bad" kids and to get him badly needed help in school, you will need one of these evaluatioins. Then you can advocate for help so that he can be more successful and perhaps even calm down.

Keep us posted!!! Good luck

 

[nvts]

Welcome to the crowd! You've got some really good advice - my pediatrician was on the "he's just a little boy" when I kept asking...Buddy is right - the professionals can be wrong...go with your gut and do a full evaluation - and Janet could really be on to something with the food allergies - they don't always show up as rashes or hives or something...if you can get an allergist that can test him, it would potentially have you headed in a different direction!

We're here is you need...and again, welcome - it's a great group of people Beth

 

[firehorsewoman]

Hi and welcome.
Your son's early years sound exactly like my son's. The pediatricians tried every type of formula on the market. He was put on baby Zantac. Nothing helped. His father stayed at work as many hours a day as possible and would tell me, "I just can't take the crying anymore."

My son developed pretty bad epilepsy at age two so he was put on Trileptal to control seizures. This drug is also used as a mood stabilizer. Even though he was on a drug that stabilizes his mood, during one of his 24 hr EEGs the doctors noted his violent behavior towards me and the medical staff so he was put on Risperdal which is an anti-psychotic.

He started preschool at three years old and was dismissed from the first three that he attended. On the second day of kindergarten I was met by his teacher and the principal. His father and I got a divorce when he was four years old. If no one has warned you and your husband that families with kids like this are high risk for divorce I am warning you now. His therapist warned us when he was four years old but by that time it was too late.

My son has had two neuropsychologist evaluations and currently holds the same diagnoses as your son. He was taken off the Trileptal after he grew out of the seizures and taken off the Risperdal due to really high serum Prolactin levels. You can read from my signature all of the medications that we have tried.

I wish that I had a happy ending for you or some useful advice. The best advice that I can give is do whatever you can to preserve your marriage because divorce only complicates a situation like this.

I just wanted you to know that you are not alone. There are people out there who have, "the same story" as you.

hugs