Re: Behavioral issues

August 2, 2004

You just described our daughter, non affected. She is very high strung and has also been kicked out of daycare, and one kindergarten tried. She is now 7 and we finally found help, after years of battles and people thinking she was just a bad kid.

For her it all came down to her being ADD. I guess everybody always overlooked this possibility because she is not hyper. For her she is just unable to concentrate, and cannot control her impulses. She gets very agitated, and aggressive when she is corrected a thousand times for the same thing. Now we know it is because she cannot control herself.

She now takes the lowest dose of Ritalin available in all day strength. It really works well, and she even reminds me when she needs it if I forget, or when I need to order new ones when they are low. She used to have what we thought were soft signs of mito too, migraines, GI problems, not eating well. Since the Ritalin everything has stopped, and we have since learned that all of the problems she was having before were caused by stress. It is not a perfect cure, as she still has bad days but the everyday life with her has greatly improved. You can do a search on ADD/ADHD online, you will be amazed on how many things can be associated with it other than what is the typical. Please feel free to email me if you have any questions. Best wishes with him. I know how you feel, it is very hard to deal with.

August 2, 2004

When my son was little he would become very hyper and aggressive when he was actually tired. His teachers used to complain and I would explain when he starts this behavior he's exhausted. At home if we had him lie down he would fall right to sleep. It was hard to convince his teachers this. We modified his school day, and his behavior improved.

Lori Behavioral issues

I'm in a bind. My son, who is not diagnosed but has had some signs, is going to be kicked out of daycare for the second time. I have nowhere else to put him! I have heard mention of behavioral issues with mitochondrial. Can anyone expand on this regarding personal experience? What were the symptoms and what did you do? It is my daughter Lily who has mito, but I've seen signs with Austin. He is almost 5 and is hyper and agressive. We've tried everything. He says he tries to be good. His teacher also doesn't think it's intentional. Any thoughts? Thanks. Amy, mother of Lily, 2 and Austin 5Please contact mito-owner with any problems or questions.

August 3, 2004

Hi. I never talk on this list anymore because I don't seem to have time to keep up, but I thought I'd pipe in here, if you don't mind. I'm Jeni, and I have a daughter (7) with a mitochondrial disease (MIDS) with lots of mito issues and profound autism. I also have 2 boys, who are relatively healthy, but thought to be mildly affected as well. My boys are 8, and 2. My older son has always had problems with attention, impulsiveness and self-control. He is not at all aggressive, but is very emotional on all levels. He was diagnosed in first grade with ADHD, and dyslexia in second grade. In kindergarten, he had a lot of problems, and it turned out he couldn't hear well at all, due to his ear infections/fluid,etc. He had tubes in his ears and his tonsils/adenoids removed. This helped somewhat, but he still had a lot of issues. In first grade, he was found to have a visual problem, convergence insufficiency, where his eye muscles were weak, and he couldn't cross his eyes, or pull them together enough to stop seeing double. We also tried Ritalin near the end of the year. Both the reading glasses/visual therapy and the ritalin made a big difference. He does not have seizures (yep, we checked), or any other "terrible" thing, just a host of "little" problems that needed attention. He still needs attention, and at times, is more frustrating than my extremely affected child. My two year old is the king of tantrums, has no self -control at all, and pays no attention to his safety (but he's 2, so some of this is probably normal). He is not autistic, but if he is not ADHD, I'll be beyond surprised. Sigh. My only advice to you is to look for those "little problems" that might be adding to his frustration. Does he hear? See? Can he understand what is said to him? Could he have an auditory processing issue? Sensory integration concerns, is he tired all the time? etc. Perhaps you could have him evaluated and see if they can pick up on something that could be addressed. 5 is a little young for medication, but not really, especially if he is extremely affected or bothered. We just switched to Straterra, the non-stimulant ADHD medication, and so far, so good. Of course, I don't really know your situation, or your little boy, so I could be waay off base here. If that is the case, I apologize. I would just wonder if his issues and aggression are his ways of expressing frustration....and if so...why?

Jen, (mom to Mark (8), (7-MIDS) and Adam (totally 2)

August 3, 2004

Hi Amy,

Not much advice, just sympathy. My 2 are very hyper. Much more

hyper when they have been sick or are under stress. The only thing

that seems to calm them at all is epson salt baths or maybe a really

good video. No doc (even thought they complain about their behavior

every time they are seen) will medicate them for the issues (they

just turned 3). My more affected child does not walk after he has

had significant stress----he only jumps and runs (we literally have

to secure him in a high chair when he is like this because he wears

himself out and makes matters worse). My two have also been known to

go days without sleeping.

Best of luck,

Kris

> I'm in a bind. My son, who is not diagnosed but has had some signs,

> is going to be kicked out of daycare for the second time. I have

> nowhere else to put him! I have heard mention of behavioral issues

> with mitochondrial. Can anyone expand on this regarding personal

> experience? What were the symptoms and what did you do? It is my

> daughter Lily who has mito, but I've seen signs with Austin. He is

> almost 5 and is hyper and agressive. We've tried everything. He

says

> he tries to be good. His teacher also doesn't think it's

> intentional. Any thoughts? Thanks.

>

> Amy, mother of Lily, 2 and Austin 5

August 3, 2004

Hi,

I to do not post often because my son is medically pretty well, but

I have to say that this is my life also. I am not a big supporter of

medication because my kids have had bad reactions to them. Our

Geneticist told me that ADHD can be neurologic or metabolic. If it

is metabolic there is only a 50/50 chance that the medication will

work. It wasn't a good enough chance for me to take with my

youngest son who has never been medicated. He is 5 1/2 and a

special preschool program really helped teach him how to behave in

school. It was tough at first, but he learned very quickly that if

he wanted to do the things he enjoyed he had to do what was expected

of him.

My now 7 yr old son did not get that help. He did do wonderfully in

Kindergarden, but 1st grade was a nightmare and he is in a special

classroom now. He is with teachers who know how to deal with his

behavior which is quite aggressive. They also know what they are

seeing and don't believe that my son wants to be this way. His

other school blamed him. Said he chose to be that way. We are

having a metabolic and neuologic work up done on him this month

also. All of his blood tests have come back basicly normal, so we

are doing a 23hr EEG and an MRI/MRS. He doesn't remembe any of his

outbursts after they happen. It is quite scary.

I agree that behavior is always for a reason. It would be good to

have a developmental evaluation done. The family medical backround

should be reason enough to do it. I also do feel that there are

times when medication needs to be used. My 7 yr old son takes

Clonidine. I calms him so that he is less impulsive. It has helped

a lot getting him back into school and saved his little brother from

being hit daily. It also is not a stimulant. His sister had severe

side effects to both stimulants and anti depessants. Almost

Psychotic. She is never to take them again.

If you need to talk about anything. Please email me. I'd be happy

to talk about it anytime. I know how it feels when people make you

feel like it is your fault that your child misbehaves or worse, like

it's the childs fault. Then they expect you to fix it all on your

own. I wish that medicating them would be the answer, but I'm not

really sure.

Barbara Mom to: 10, ADHD/Asperger's Syndrome, Phonologic,

Symantic and Pragmatic Speech Disorder., Max 7, Asperger's Syndrome

and Corbin 5, Probable inborn error of energy metabolism,

hypoglycemia, lactic/pyruvic acidosis, Heat intolerance, Oral

motor/motor planning dyspraxia, fine motor delay, Possible PDD.

August 3, 2004