My brain is all over the place, help me think this one through...

[amo_mea_filiis.]

I've been reading some of the medication threads and the allergy thread and i'm once again rethinking ds.

 

Please do not compare behavior meds to medically indicated meds because i personally do not feel that way.

 

Here are my fairly random thoughts i need to process...( every single question or concern will be discussed with his psychiatrist, but i need to work these out before even attempting to make the appointment)

 

1. If i decide to try meds again with ds, how many am i will to try if he has allergic or behavioral reactions to them? How long do i want to give for possible side effects to decrease or go away?

 

2. I am not willing to medicate behavior X, then medicate a side effect, so which behavior should be my medication aim?

 

3. What if a lack of 100% consistency is all that's required to help him? Is it fair to medicate his developing brain?

 

4. What side effects am i willing to allow? What about permanent side effects? Is his behavior really bad enough to risk anything?

 

5. What if he's reacting to preseratives and stuff i have not yet cut from his diet? Do i still alter his diet? Will i see improvements even on meds and would we have to trial off?

 

6. What if every diagnosis he's ever had is just wrong and whatever he has will be made worse by every single med except some obscure one not even on our radar?

 

7. What if neurofeedback is the way to go? Should i appeal social security for the pathetic amount of money he gets, and argue for a slight increase to afford the gas to do neurofeedback?

 

8. What if he doesnt have autism or a mental illness; what if it is mild brain damage, is it still fair to medicate? Will meds even work if he rages due to brain damage?

 

That's all i have right now, but needed to get it out because i cant function with all this in my head. Regardless of any decisions, nothing happens until after his appointment at the autism research center next month.

 

Thank you for anything you have to offer.

[Jan in SC]

I have thoughts, but first, does your ds have a dx? What testing has he had?

[amo_mea_filiis.]

His dxs vary greatly. All degrees of autism depending on mood on day of visit. Bipolar. Adhd combined type. Oppositional defiant. Poor parenting. Normal. Boy. Language processing. Auditory processing. Posessed. There is not a single dr or therapist who agrees on any of it!

 

I do not see any of his dxs on a consistent basis which is why i have leaned towards brain damage since he was a baby.

[amo_mea_filiis.]

Testing- he has seen a few neurologists who never did any actual tests, just observing (mri has been done). Developmental pediatrician, also just observed. Psychologist, psychiatrist, all observations.

 

His only actual testing has been done by OTs, speech therapists, and schools; none of which can actually diagnose. His ot, who will give me her opinion, is lost on him.

 

His current therapist thinks he's just manipulative.

[justasque]

5. What if he's reacting to preseratives and stuff i have not yet cut from his diet? Do i still alter his diet? Will i see improvements even on meds and would we have to trial off?

 

I don't have the experience to comment on the rest, but eating well is always a good idea. Whole foods, in as close to their natural state as possible, are always worth striving for. There will be lifelong benefits for both your kids and for you.

 

Eating smaller, more frequent meals helps to minimize behavior issues due to low blood sugar, regardless of other issues.

 

On one hand, it takes some work to find things that work for your family, and it takes some time to prepare them. On the other hand, things like skillet-sauteed veg over whole grain rice, pasta, or quinoa, have infinite variations and are quick and simple to make. Fresh fruit is delish. Nuts, beans, eggs are good sources of protein. You can't go wrong with water to drink. Keep it simple.

[Lisa in Jax]

I've been where you are: my son had a bunch of diagnoses (ODD, RAD, ADHD), but none of them fully fit, if that makes sense.

 

We tried parenting, counseling, behavior charts, OT, speech, patterning, you name it. No matter how structured the parenting, or how much counseling, he wasn't getting better. After all that, we tried meds. Meds had side effects, so the psychiatrist added another med to deal with the side effects of each other med, until the fourth med made him appear to have yet another diagnosis (bipolar disorder). We finally said, "Enough!" and stopped all of the meds.

 

A friend firmly encouraged me to try the gluten-free and casein-free diet. I wasn't convinced it could help with all the alphabet soup of his diagnoses, but we were at our wits' end, so we tried it.

 

He stopped acting oppositional. His hyperactivity decreased by 50% (or more). He stopped having 2 hour rages/tantrums. He stopped peeing in the closet out of anger. He slept better, argued less, listened better, cried less, learned more. He was actually "parentable" for the first time since we adopted him at age 4.

 

IMHO, if you have a child with major, complex behavioral concerns, it might be worthwhile to try the GFCF diet for a month or two. It's a pain in the butt to start the diet, but when it works, it's SO worth the time and effort.

 

HIH,

 

Lisa

[amo_mea_filiis.]

I think i will have to try gluten and dairy free. This will be our first step. The research center appt. is on oct 17th and i'd rather not make any changes this close to it. I will menu plan for food shopping after then.

 

The kids do drink mostly water. On really bad days, i've thrown a soda at him hoping he just has some extreme adhd and the caffeine will help, but it never has (on its own). I try to feed them as best as i can, but i read something once that i remember when ds fights food; something along the lines of nutritious foods only being nutritious if they're actually eaten. He will fight so bad at times that all i care about is calories.

 

I always go back to sleep thinking in my frazzled ramblings, and have yet to get a single question answered. How many spontaneous arourals, if any, are normal? At what point do the arousals affect sleep quality?

 

And my other one- if the cerebellum is partly responsible for some of behavior/language/motor problems he has, why is his "4mm low and minimally encroached" cerebellum not a problem? (this isnt making sense on my reread; cerebellum plays a part in language, impulse control, executive functioning, etc. all problems for him. His is not completely normal. Why is not indicated as a cause for him?).

 

He has a major love of breads and all bread type products. I've been cooking all day: roast on the stove, mashed potatoes in the oven, gluten free bread in the bread machine. So after hours of cooking, he comes down and singles out the smell of the bread! The bread is the least strong smell.

[Jan in SC]

After the MRI, did the doctor mention a possible chiari malformation?

[amo_mea_filiis.]

Chiari was ruled out due to the minimal encroachment (not enough for chiari) and his lack of specific symptoms (mostly balance related). I may send his scan to a chiari center and see if i can get an opinion from them.

[amo_mea_filiis.]

The first report of his scan, if i remember correctly, said "low lying cerebellar tonsils, not a chiari malformation."

[Twinmom]

You might consider having a QEEG completed by a neuro-psychologist...the diagnostic testing often run prior to neuro-feedback. We have three kiddos with special needs who have received every diagnosis in the book save schizophrenia, and we truly had no clarity on any of them until the Q. The doctor actually took a detailed view of how each kid's brain was functioning...not just how it looked structurally (all of them would have looked normal) but rather how it was working electrically, etc. We were able to tell specifically what was wrong with each kid and to rule out a variety of diagnoses.

 

Oddly, all three kids actually had different underlying issues than anyone was able to observe from the outside! One actually had a minor anoxic brain injury. the other two global developmental brain delays (not related to IQ...will catch up) vs the raging ADHD and other diagnoses previously given. In fact, we were told that had we given one of the twins the ADHD meds that were being recommended to us, we literally could have cemented in the delay and caused him permanent damage. For the child with the anoxic brain injury, a combination of both meds and neurofeedback has basically produced a new, functional child. A good diagnosis based on actually examining the brain itself is key, IMO. As a mental health social worker, I've seen far too many kids diagnosed based on arbitrary opinions of behavior rather than an objective measurement of the brain (and many have turned out to have the wrong diagnosis!!). As our neuropsych told us, the mental health field is probably the only health discipline that doesn't diagnose by examining the actual organ under consideration. Kind of scary if you think about it that way, but also very true.

 

Summarize all that to say, I love QEEGs! ;) Perhaps getting one done will help answer some of the very good questions you are asking. HTH.

Edited September 26, 2012 by Twinmom

[amo_mea_filiis.]

Dd had a QEEG done during her eval for autism (originally dx autistic spectrum disorder, changed to asperger's later) and i have never ever questioned her dx. I dont have to believe or not believe, it's just simply the correct diagnosis.

 

After the research center, i will go forward with the neuropsych eval. I'll do some research and even see if the research center has a recommendation for a good dr.

[swellmomma]

You might consider having a QEEG completed by a neuro-psychologist...the diagnostic testing often run prior to neuro-feedback. We have three kiddos with special needs who have received every diagnosis in the book save schizophrenia, and we truly had no clarity on any of them until the Q. The doctor actually took a detailed view of how each kid's brain was functioning...not just how it looked structurally (all of them would have looked normal) but rather how it was working electrically, etc. We were able to tell specifically what was wrong with each kid and to rule out a variety of diagnoses.

 

Oddly, all three kids actually had different underlying issues than anyone was able to observe from the outside! One actually had a minor anoxic brain injury. the other two global developmental brain delays (not related to IQ...will catch up) vs the raging ADHD and other diagnoses previously given. In fact, we were told that had we given one of the twins the ADHD meds that were being recommended to us, we literally could have cemented in the delay and caused him permanent damage. For the child with the anoxic brain injury, a combination of both meds and neurofeedback has basically produced a new, functional child. A good diagnosis based on actually examining the brain itself is key, IMO. As a mental health social worker, I've seen far too many kids diagnosed based on arbitrary opinions of behavior rather than an objective measurement of the brain (and many have turned out to have the wrong diagnosis!!). As our neuropsych told us, the mental health field is probably the only health discipline that doesn't diagnose by examining the actual organ under consideration. Kind of scary if you think about it that way, but also very true.

 

Summarize all that to say, I love QEEGs! ;) Perhaps getting one done will help answer some of the very good questions you are asking. HTH.

 

This is a fabulous post. We are having funding issues right now, getting it sorted out but this is the route we are going. I have been planning on neurofeedback for ds14, but have decided to first focus on the QEEG and THEN decide if we will go this route once we know the actual functioning of the brain. I am doing the same with DS9. He has so many delays that it is worth looking deeper.

 

I would not medicate without getting one done. We used to medicate ds14, and honestly some days I very much wish he still was. BUT without knowing the actual functioning of the organ I would not do it again.

 

Until you can do a QEEG I would do a gluten and casien free diet, I would take a very objective look at my parenting (and trust me when it comes down to it, this is never a pretty thing). Parenting does NOT cause or cure issues, but it can minimize or exaserbate issues that are in play. Based on things you have posted on the forums as an outsider it looks like you are actually at time accidentally feeding the behaviours making them worse, and at times even creating situations that the behaviours occur in without even thinking about it. It is not a malicious thing, you are not intentially doing that, but as an outsider reading your posts I see that.

 

I make the same mistakes. We all get into patterns with our kids, positive and negative and unless we make a very concerted effort it is easy to slip into them and create a sh*t storm and then sit there in the fall out wondering what the heck just happened. Like I said the parenting aspect will not "cure" your son nor did it cause his issues, but it does have a huge impact. Just like diet, and sleep and physical activity does.

 

That part of it is a work in progress for me each and everyday. I am the type of a person with a very small amount of patience, I have kids with multiple issues like your son that require me to have the patience of a saint. IF I fall into old patterns, I get growly and snarly, and snap commands, and raise my voice, and the sarcasm leaks through. And then the kids ramp up more, and they all start fighting with each other and me, and snarking on each other, and yelling and tantrumming, and then I want to medicate us all and call it a day. When in the end if I had kept my cool, spoken respectfully, and ignored the snark coming my way(still disciplining but not escalating kwim) the sh*t storm could have passed without much more than a blip. The kids will not suddenly be fine, and gain all the abilities they don't currently have, they will not suddenly gain IQ points, or be able to process what they see or hear. They will not suddenly have mastered control over their mood swings. They will not suddenly become less quirky, or more focused. But we would have more over all peace, they would be working towards those things.

 

In the end meds may still be the route to go, but not without the rest of the peices along side it. Not until every avenue has been tried and that includes, a good long look in the mirror, diet changes, further testing like teh QEEG, safe alternatives like fish oil supplements, daily physical fitness and better sleep habits.

 

My theory is if I, as a NT grown up, can not keep from being snarly and snarky, how can I expect my SN kids to? If I know that processed foods or foods dyes are being shown to cause more issues for everyone including NT people why would I not rule out my SN kid perhaps being more sensitive to those things? We all know how nasty a tired or hungry 2 year old can be, it doesn't get much better when they get older for a NT kid, a SN kid with behaviour issues often already lacks the filter that a NT uses to at least keep the mood associated with hunger and sleepiness to a dull roar. The SN is more like the 2 yr old in that regard. We all feel antsy when we have pent up energy. I liken kids to be like dogs, you can not just physically exercise them, you have to mentally exercise them too or there is nothing but trouble to find. The best way is to do both together. Organized sports, or building things where physical labour is needed, etc are great because there is so much thinking and strategy going on, team work and those social skills being stretched, along with the physical. Yes school should exercise their minds, but for some kids especially SN it may not because they do not learn in the way it is being taught.

 

Take my 14 yr old son for instance. The boy struggles to write a story, or have a proper discussion(auditory processing issues), has major ADHD etc. school work doesn't tire his mind out in the right way. It is tired alright but in that cranky 2 yr old way. That same boy comes up with elaborate plans and storylines for the survival game he is playing with neighborhood kids daily. Up and down trees, running from each other and imaginary creatures, focusing on the minutae of those details, reading field guides about different berries, and moss and animals in the clump of trees they play in etc. He is completely worn out mentally and physically at the end of that play he becomes somewhat compliant. (I say somewhat because he is still newly into puberty and has a suspected mood disorder, not a good mix).

 

I would look into all of those things and try absolutely everything before turning to meds. Meds have their place for sure, and many many adhd/behaviour kids are helped greatly by them. DS14 was on ritalin for years before it started triggering violent rages in him. It was like a miracle drug when it was working. BUT that is just a bandaid really, it does not get to the heart of the matter. The meds treat the symptoms not the underlieing issue. And like anyone who has had to deal with mental health issues, psychiatry for these kids is based on treating the symptoms, not testing further for a better understanding of the functioning of the brain.

 

Personally I think that all people suspected of ADHD, mental illness etc should have a QEEG done, and I think it should be covered by the health plans before any diagnosis or meds are given. This is especially true with young children when the plan is to start them on stimulant medications, or antipsychotics or any off label meds used for childhood mental health issues.

[amo_mea_filiis.]

Thank you everyone, and thank you swellmomma!

 

Dd's puberty + aspie moods are making things very challenging right now. Some things that were exclusive to ds are now coming from dd. She's jumping at me and ds with things like never before. She is still more compliant in a way, and if i stay on top of her, things will be done.

 

I dont know how to exercise ds's mind. I hope drums will help this. He doesnt get aling with kids his age and isnt interested in sports or able to follow the point. He does set up very extensive "wars" with his toys, but isnt able to verbalize a story. There is a TON going on his brain with the wars, i can see it, but he doesnt even talk to himself. He will line up 260 small lincoln logs (standing up) in perfect rows and groups. The other day he had 4 rows with 5 in each group and i swear it looked like he took a ruler to measure position. He'll have very tiny dialogs, once in a blue moon, but you have to have been watching him all day to have any clue what's going on. The day he had all thise lincoln logs, he went to his room and grouped all his other little toys and said something like they're just going to give up becsuse they have 260. I think it basically meant that he has no other toy with that many pieces, so the lincoln logs win. Unfortunately, nothing ever happens between the toys, except maybe in his head so its not even like i could jump in and join his game. Basically, i think the wars do exercise his mind a bit. It needs to be done more.

 

I have more, but got sidetracked and lost my train of thought.

[Twinmom]

Personally I think that all people suspected of ADHD, mental illness etc should have a QEEG done, and I think it should be covered by the health plans before any diagnosis or meds are given. This is especially true with young children when the plan is to start them on stimulant medications, or antipsychotics or any off label meds used for childhood mental health issues.

 

:iagree::iagree::iagree:

[swellmomma]

Thank you everyone, and thank you swellmomma!

 

Dd's puberty + aspie moods are making things very challenging right now. Some things that were exclusive to ds are now coming from dd. She's jumping at me and ds with things like never before. She is still more compliant in a way, and if i stay on top of her, things will be done.

 

I dont know how to exercise ds's mind. I hope drums will help this. He doesnt get aling with kids his age and isnt interested in sports or able to follow the point. He does set up very extensive "wars" with his toys, but isnt able to verbalize a story. There is a TON going on his brain with the wars, i can see it, but he doesnt even talk to himself. He will line up 260 small lincoln logs (standing up) in perfect rows and groups. The other day he had 4 rows with 5 in each group and i swear it looked like he took a ruler to measure position. He'll have very tiny dialogs, once in a blue moon, but you have to have been watching him all day to have any clue what's going on. The day he had all thise lincoln logs, he went to his room and grouped all his other little toys and said something like they're just going to give up becsuse they have 260. I think it basically meant that he has no other toy with that many pieces, so the lincoln logs win. Unfortunately, nothing ever happens between the toys, except maybe in his head so its not even like i could jump in and join his game. Basically, i think the wars do exercise his mind a bit. It needs to be done more.

 

I have more, but got sidetracked and lost my train of thought.

 

This is how ds14 started. He still does this. I will walk into the bathroom and find the cat food and dog food in formation to head to war. I will find the math manips on his bedroom floor same thing. Outside is lines of pebbles. I just by sitting next to him and asking questions about the different troops, etc. Sometimes my questions were regular ones, like "What is this troop called?" to silly ones like "Does this troop do the ballet when they fight?" It got him talking through it more and learning to put a storyline together along with someone else without realizing he was doing it. Ds14 has very few kids he is even allowed to play with (most other parents have banned him), but that doesn't stop him from playing his survival games. It helps that dd13 and ds9 will play with him when no one else will.