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My Son With ADHD....and More
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LoriAnne67 posted:
Hello, I am new to this, but was encouraged by my 23 yr. old daughter to seek online communities where i could talk to other parents who have children with ADHD and other type dis-ordes, and maybe even seek medical professionals advice and/or tips. So, here goes.... I am a 44 yr.old Mother, with a 7 yr. old son(8 in a couple weeks) who was diagnosed (at age 3) with ADHD-Combined Type, this was extremely hard as a Mother to hear that i needed to medicate such a young child, and I almost didn't! But then, i sat down, cried, and then thought to myself...am I being selfish? This is about my baby, not me, he is not comfortable in his own body, so i decided to get with the program and medicate him and began taking him to therapy and a child psychiatrist. We knew even as a baby that "JoJo" had "something" going on, he never(and i mean never) slept through the night his whole first year, he barely slept at all, he would just scream and cry, and we could do nothing to comfort him, I felt totally helpless. I remember trying to hold him and walk with him, and having a hard time because his whole body was stiffened straight. As he grew, more things became very apparent...he was extremely active(Hyper) had a hard time focusing and/ or staying on task, had spells where he "zoned" out, could not handle any type of transitioning, began having aggressive behaviors, had severe tantruming, and the list goes on......
Fast forward to 2012, JoJo is in 2nd grade in an integrated classroom, but is on an IEP with pullouts for special needs. He has been in the same school since Kindergarten, so they know him well, know his history, his behaviors, his" dis-orders", JoJo has, over the years been also diagnosed-- PDD-NOS, IED, mentions of Anxiety,OCD disorders have also been mentioned. There have been several medication changes over the years, But we never seem to be able to get him where he needs to be, just able to cope with every day life, comfortable in his own skin. At this time he is having major behavioral issues, he cannot cope with things not going the way he wants or "needs" them to be, he is lashing out in school and at home, both physically and verbally,having severe meltdowns to the point of sometimes having to be removed and taken home from school. He recently had a 1 week hospital stay, where they stopped one med and introduced another(without success) as we have seen since being brought home and going back to school. Again medication change(within the last week) no improvement as yet, in fact i had to go remove him from school this very day. We, at this time feel extremely lost as to how to help him, what to do next, where to go, what to try. We feel like we keep hitting a brick wall. We have had, now 2 child Psych. Docs who get to a point where they are asking us "what do you think we should do? " Guess they hit a brick wall also. It's a very stressful,trying,emotionally and physically draining time for us, but for none more-so than JoJo, I just want a happy, normal, fun, liveable life for my son. We feel at this time that, that is so far out of reach for him. We will never stop fighting for him, trying to find the right answers, treatments and Drs. I Love my son more than any words could describe! I have to keep faith that we will be able to find the right course of treatment to make his life comfortable, just happy to be a little boy. Thank you for letting me speak my mind and I hope to hear from anyone who would like to offer advice,tell their story or just plain comment on this thread. LoriAnne
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momuv4girls responded:
Hi LoriAnne,

You sound like a wonderful advocate for your son!! Kudos to you!

I understand how difficult it is to have a child with disabilities - its heartbreaking, exhausting, frustrating and on and on and on.....

I hate to say this, but from reading your post, it sounds like you need a new Child Psychiatrist for your son. There is a shortage of smart, qualified, board certified Child Psychiatrists, but they are out there. Another deterrent is $$.
My daughters Psychiatrist takes no insurance, and I found in our area no top-notch Dr.s do, so I have to pay out-of-pocket, then request my insurance company to reimburse me (of course its a small fraction of what I pay the Dr.).....BUT, my daughter's Dr. is amazing, smart and kept my daughter from being hospitalized.

Here is a link for you to explore:
http://www.aacap.org/cs/root/child_and_adolescent_psychiatrist_finder/child_and_adolescent_psychiatrist_finder

You don't mention what meds your son is on, but
as you probably know.....stimulant medications can make OCD and anxiety way worse, so this maybe part of the equation , but I suspect there is a complex diagnosis behind this young boy.

Keep up the good fight, and write back anytime.......if you note your city and state, I can look for some local resources for you.

Take care and (((((Big Hugs)))))
-Kathleen
 
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LoriAnne67 replied to momuv4girls's response:
Hi Kathleen
Thanks so much for the support and the praise(although i don't feel i need the praise-lol) but i'll take it occassionally.
You are right about us needing to change his Doctor, which we are actually in the process of, we are trying to get him into the "Cleveland Clinic" system, where they have lots of experts, one Doc in particular whom has worked with Joanah during his hospital stay and is trying to get us into their system. We have high hopes for their care of him.
As for Meds at this time Joanah is taking(long list) Metadate, Strattera, Intuniv and the 2 newest Haldol and Benztropine....sad right? That a boy so young has to take so many meds and yet still struggles.
As I am sure you figured out, we are in Ohio, a suburb of Cleveland area. I need to say that, I totally agree with you(and have said so for years) that there is a more complex diagnosis to Joanah, I know that they say it is more important to treat the symptoms than obsess over the names of disorders, but if there is a bigger picture that is being missed, we sure want to know that and learn how to begin treating him properly!
Again , Thank you Kathleen for responding, i will check out that link and please feel free to reply again, anytime!
Sending ((((((((((Hugs)))))))))) back at you and yours! God Bless!
Lori
 
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momuv4girls replied to LoriAnne67's response:
Hi again Lori,

I am pleased to hear that a Dr. is helping you get your son into good system. One thing I have learned is to not sit and wait.....call, call and call, see if you can get in on a cancellation.
Big clinics can be good, but they can also be challenging to deal with because there are so many people employed by them and they often don't talk to one another.

As I mentioned in my earlier post.......anxiety / OCD behaviors, aggression can be made worse with stimulant meds (Metadate) and your son is on 3-adhd meds, and still not better ?? I understand your concern and worry.

I am a bit short on time this morning, but wanted to pass along this link for local resources. There may be one or two in your area that can help you and your son.
http://www.yellowpagesforkids.com/help/oh.htm

I really hope Joanah can get a top-notch Dr. to treat him and he can feel better soon.

Take care Lori !!!!!
(((((((((((((((((Big Hugs))))))))))))))))
-Kathleen


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