im so confused,need help..

needabreak

New Member
i have been so busy these last few days and about to go out of my mine.difficult child has had some really bad moments yelling at me and cussing.i thought i had it under controll.just ignore it they say.but i couldnt any more and just broke down.the things he says to me is so hurtful and mean.and i know he dont mean it but it hurts so bad.and then he is like everything is all right.i really do think i will need medicine befour this is all over.my sister keeps sending me stuff on all this natural stuff and things saying adhd and odd are all made up.is it is all in my head and he knows what he is doing.im so confused.i just want to get up and take my kids away.i would never leave them.and i could never let some one else who is not family take care of my children.difficult child has appointment. tomooror and hopefully i can get some answers that make cense.everyonr keeps saying something different.it is so fusterating.sorry so long im just going crazy and needed to talk thank you all. :sad:
 

neednewtechnique

New Member
It is strange the number of times that this contradiction has come up on this site, and I have only been here a few days. And even stranger, it is this very contradiction that BROUGHT me here in the first place!! The CO-MORBID ADHD AND ODD contradiction is SO COMMON, yet it seems that PDR's find it nearly impossible to treat properly!!! If they focus on the ADHD, the medications they give them tend to make the ODD WORSE, causing agressive, HATEFUL, and sometimes VIOLENT behavior...and if they focus on the ODD, then you have a hyperactive child that cant stay focused on anything and ends up failing in school, and the cycle just goes on and on . . . and I REALLY find it strange the number of times I have seen this very problem come up in the last couple of days. Granted, it isn't always ODD on the opposite end of the ADHD, but some sort of behavioral disorder.

This is me, here at my computer, shaking my head as I TOTALLY IDENTIFY with your PAIN and SUFFERING feeling about the hateful difficult child. It tears you up inside to hear them speak so horribly to you, and it really IS nearly IMPOSSIBLE to ignore.

The new PDR that we are going to start seeing next month has already been reviewing my difficult child's background and has been on the phone with me numerous times in the last few days, preparing me, for her "plan" as to how to treat the two at the same time. And this may be useful for you when you go back to the PDR tomorrow, so hopefully you see it before that. And if you think this sounds good (as I certainly was in agreeance with this plan) DON'T be afraid to speak up and suggest a similar approach to your PDR. If they are REALLY a good doctor, they will take your ideas and thoughts into consideration!!

The "PLAN" is to continue using a Stimulant to treat the ADHD, but to also offer a "stabilizer" that will help with the behavior problems and help to combat the side effects of the stimulant, which always tend to make the behavior problems worse. She said that it is something many PDR's don't consider, and she said it is a very LONG process, because finding the balance of STIMULANT and DOWNER medications is a very FINE LINE. The reason she says that is, is because if given too much DOWNER to stabilize, it will overpower the STIMULANT and it won't work, but if given too much STIMULANT, then it will overthrow the DOWNER and IT won't work. And not only do you have to work at finding the right specific medication combo that will work best for your child, you also have to find the right DOSAGE of each medication that will work for your child. She said that it can take a very long time, as they like to try each combination for at least 1 month to see how it works once the medication has had time to get built up in the system and the body gets used to it. At one point in the past, our difficult child was on a similar "plan" taking 54mg of Concerta along with a good dosage of Seroquel, with the PDR that her BIO Mother had her seeing and it seemed to work very well, so that raised our level of confidence in this plan. However when her mother lost custody to CPS, and they placed her under their guardianship, they refused to continue allowing her to take the Seroquel, as they didn't feel a child of age 12 should take such powerful anti-psychotic medication. And she isn't being handled directly by CPS, either, there is a private organization that works closely with CPS and handles certain cases, which our difficult child happens to be one of. This is good in many ways, as we have avoided most of the unpleasantries that usually accompany working with "the system" but it also has it's drawbacks, because her caseworker, and their entire office in general, doesn't have much experience with the issues surrounding our difficult child, and they have a hard time believing that this sweet child causes that many problems when no one is looking but us.

Here's hoping that everything works out for you at the PDR tomorrow!! If you suggest this to your doctor, I am really interested to see what their reaction is, please keep me updated!!!

Also, a good fix for you, as far as dealing with the hurtful comments hurled at you, the best thing you can do for you is, as soon as your difficult child calms down, go give them a big hug, tell them how much you love them, and most of the time, mine will respond with that same kindness. I know it doesn't exactly make up for "I HATE YOU" that easily, but it helps make you feel a little better to be able to hold them and cry with them, and believe it or not, it really helps them too. Another tip that we got from our difficult child's psychotherapist is, any leverage you give them, they will stretch as far as they can take it. So even in your nice loving moments, be on guard not to reveal anything to your child that they may be able to use against you later. If they scare you or hurt your feelings, you MUST NOT let them know it, because if they know, 99% of them will find a way to use it against you later when they are upset.

Good luck, I am here if you want to talk!!
 

BusynMember

Well-Known Member
Sorry you're having such a hard time. Are you sure the ADHD/ODD diagnosis. is correct? Is he on medications? Who diagnosed him? History of any substance abuse or mood disorders in the family? The reason I'm asking is that ADHD/ODD is often a misdiagnosis when it is something else, often a mood disorder. If so, stimulants will not help and can make things worse. I recommend seeing a Child Psychiatrist (forget the Psycologist) for diagnosis. Since Pervasive Developmental Disorder (PDD) is in the family, another genetic diagnosis., you may also want to see a neuropsychologist to rule it out. If you see a neuropsychologist they do intensive testing and can also look for ADHD, but, to be honest, in my layperson's opinion and having had a child misdiagnosed with ADHD/ODD I think it's over-the-top for that. I hope you get another fresh evaluation or two and it works out better for you. Meanwhile, be good to yourself and make sure you take time to relax. You may look into respite until he is stable. Here is a link you may want to have a look at.
http://www.bpchildresearch.org
 

Marguerite

Active Member
difficult child 3 has a close friend whose diagnosis is autism plus ADHD. We've known this since the child was 4. He is now 8. His mother has been slow to follow through even with the diagnosis and definitely with the medications, because she's been surrounded by people (her mother, her hippy neighbours and friends) who insist that there's nothing wrong with the child, and if she is concerned then she should NEVER give him stimulants but instead should dose him with [insert complementary medicine of the week here].

So instead of taking her son to the pediatrician as she should have (and kept telling me that she would, because she knew he needed the diagnosis written up in a letter for school as well as a prescription for the medications) she instead went out and spent hundreds on the latest 'natural remedy'. And they really can't afford it. She tried evening primrose oil. She's tried fish oil capsules. She's tried vitamins. The latest expensive experiment was goji juice. Meanwhile, genuine therapists have gone unpaid or she's simply missed treatment sessions, because she's been told she shouldn't go, by well-meaning friends and family.

All this time she and I would also talk. I stopped pushing her a long time ago. Four years ago I drove her across Sydney to see an expert in autism. At the request of this expert (who was also seeing difficult child 3) I gave my friend a list of names and phone numbers so she could begin getting support and treatment for her son. She saw the pediatrician once then never went back because he suggested trialling medications and her friends told her not to.

The problem wasn't that her friends had her brainwashed. Instead, they had her confused. The ones selling her the natural therapies were people she considered more educated or more qualified than she sees herself. They had her bamboozled, totally (and they were getting money form her when they sold this stuff to her). And when someone you trust and respect tells you forcefully that you shouldn't poison your child with drugs to dope them into submission, you tend to do what they say, especially if you know your own education is patchy.

She's finally "drugging" her son. She's still a sucker for the latest fad, but at least now she has seen with her own eyes that her son improves on dex when nothing else ever made the slightest difference.

At the end of the last school term, I found myself having lunch with the most forceful of these friends. And she even made ME feel pathetic and inadequate (no mean feat!). I toyed briefly with lying about "drugging my child" but instead I confronted her. When she began to quote credentials ("my husband is a pharmacist") I quoted mine right back at her. And my most important credential - I am a mother of several kids on the spectrum, who are also diagnosed with ADHD. We've tried it without the medications. We've tried it with. And thank you, the medications have proven themselves to me, in the case of my children. At least with the medications I know what my kids are taking. If they drink some herbal concoction, how will I ever know what is in it? Those people never divulge the contents.

And those who persist in denial - do they know more than all the doctors in the world who DO recognise the validity of these conditions? Is your sister so highly medically qualified that she can over-rule your child's specialists?

Is she immune to sarcasm, or can you say, "Thank you so much for your educated enlightenment. Up until now I'd been tempted to follow the advice of my son's [insert specialist here], who has had [insert relevant number] of years training to be first a doctor, then a specialist, but with the benefit of your wisdom and extended training I see the light. Clearly, you have been educated on this to a far greater extent than Dr G and every single one of his colleagues. When next we see Dr G I will strongly urge him to throw away his medical journals, give up his long hours maintaining his medical credentials and instead to begin reading gossip magazines and knitting patterns in order to be truly enlightened on this topic."

Have faith in yourself and your instincts as a parent. Also, stop trying to convince her about your son. She will never accept it, so forget it. What's important is that YOU accept and understand. If you need someone to dump on, dump on us. Swap recipes with your sister, but swap ideas about difficult children with us. it's what we all do for each other.

Marg
 

Wiped Out

Well-Known Member
Staff member
Hugs to you. I know how hurtful those comments from difficult children can be. It's hard to grow a rhino skin to let it shield you. Many days I can blow off his comments some nights I don't and just cry.

As for your sister-well try to let that roll off too. She isn't dealing with what you are dealing with and doesn't get it.

You need to be taking care of yourself. Find some me time. Do you have access to any type of respite? It is so important to take care of you.
 

needabreak

New Member
thank you all.i am getting ready to leave to go to sheppard pratt with difficult child.i do hope everything is ok.all i want is some answers.i know he needs help and it hurts me cause i dont know what to do.and i have so much more going on its just so much.ill let you all know how things go when i have time to sit down again.thanks again i appreciate the support i get here.i know you all understand what im going through.i feel a little better now.but it still hurts. :crying:
 

Sunlight

Active Member
aw hon, I hope you get a break soon. ADHD and ODD are not made up. it is real. the misinformed need more education about it.
(((HUGS)))) and hope you get some support.
 

givnmegryhr

New Member
I'm sorry you are going through this, we all know how exhausting physically and mentally it is. Try to take time for yourself. Know that this is truly an illness and when you can get him the right diagnosis and medications he should do better. When he does act like nothing happened try to focus on that. I know it's hard, but we have to try. I'm not a psychiatrist, but the changing like that sounds so much like my son. He is BiPolar (BP) and has rapid cycling. We call is Dr. Jekyl and Mr. Hyde.Some days are better than others and I am learning to relish them . Is your son on any medications? If they have put him on something for ADHD does it help or make him worse? I hope you get some answers.
 

needabreak

New Member
well we had the appointment. today and it seemed to go good.she said he is young to be diognosed BiPolar (BP) but it could still be a possibility.we are going to stick with the behavior therepy at kki.and she decided to try focilin 10 mills.in the morning to see how that works.for me to try it over the weekend to see how it goes.now when he took the rittalin he was a completly different child.so i will see how this works.she just wants to find a way to get the dosage lowered with still having a good effect.so i will give ti a try.anyone know about focilin.i have not had time to check it out.today was a little better.but i am so tired.also we just found out my cousin commited suicide last week and now he is in the news and it just has been crazy.i need a break hope to get one soon.trying to smile.thanks for listign
 
F

flutterbee

Guest
You know what? You advocate for your child. You search for answers. The love for your child is obvious in your words. You are a wonderful mother.

It's hard not to second-guess ourselves. Lord knows I do it ALL the time. When those we love and trust second-guess us, it makes it harder. When your difficult child is being mean and hateful, it hurts and wears you down. You do eventually develop a thick skin. My difficult child told me tonight that she hates me. My only reaction was surprise that she didn't say, "Why do you hate me?!!?"...her typical response to anything that doesn't go her way. LOL It used to rip my heart out, though.
 

neednewtechnique

New Member
As I mentioned, in a few of my other posts to the board, we VERY BRIEFLY tried the FOCALIN, and I have learned more about it in the last few weeks than I ever cared to know about it. I am sure that some children will react wonderfully to the medication and I am not knocking it, by any means, and I don't want to scare you. So rather than tell you my horror story about that medication, I will tell you the hard facts that I got from our daughter's PDR and Pharmacist about what the medication actually is. Focalin is a VERY NEW medication, and is supposed to be a new and improved version of RITALIN. They refer to is as "purified" ritalin. The first difference between the two, is that Focalin is supposed to have less adverse side effects than Ritalin, which is a bonus. The second difference between the two is that since Focalin is more "pure", the dosage has double the effect. So your son taking 10mg of Focalin should have the same EFFECT as if he were taking 20mg of Ritalin, but since it is actually only HALF the dosage, should cause less side-effects than the 20mg of Ritalin. I know that is a little confusing, less medications doing more work but still having less side-effects, and I hope it makes sense... As for what they told us to keep an eye out for: they said that for agressive children, this medication may make the agression worse, more frequent, or cause the child to turn violent. If this is the case, they said not to stop the medication until talking to the psychiatrist, but should call right away. If you already have a child that is violent, they say that it could again, make the violence worse, more frequent, or cause them to turn on someone that they ordinarily behave very well for. They also told us to be CERTAIN not to administer ANY SORT of sinus medication without speaking with psychiatrist or Pharmacist first. The reason is that the stimulant is stronger than in other ADHD medications, and can cause more adverse reactions if you don't use the proper sinus medications.

On the other hand, they say these side effects are more rare than with other ADHD medications, so you may not have any problems. I think that the problems we had were more because she was taking Focalin in ADDITION to Concerta, but possibly if she took the Focalin by itself, maybe it would have worked better for her. There are some great websites on Focalin, just google it when you get a chance, but the more helpful information came from our psychiatrist and our Pharmacist.

Good luck, I am interested to see how this medication works for your son, keep me posted!!!
 
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