EEG results.

iVillage Member
Registered: 03-26-2003
EEG results.
7
Thu, 05-19-2005 - 12:31am

I am still real confused. I don't know whether I am on the road to understanding and good stuff, or on my way down a very scary road. Either way here we go.

Dave's EEG showed "generalized diffused cortical dysfunction". Meaning there was an abnormality throughout the brain, not just one area. It was consistent with "chronic encpalopophy" (I know i didn't spell that right again, lol). They want to test him for metabolic dysfuctions since this is one of the more common causes for the chronic encepha-whatever. Along with chronic drug use, parkinsons, and I can't remember what else.

Well, on the one hand I have done alot of reading where autism may be caused by metabolic dysfunction and that actually goes along with my diet and supplement principals. It is also genetic, so I wonder if this may be what is affecting all the kids and now we will know what to do maybe? Maybe, just maybe if they can find the right part of the right chain for what isn't metabolizing then maybe we will have some good ideas.

On the other hand, nothing of what I read on encepalophy and metabolic disorders was particualarly consoling. Often referring to them as progressive and once the damage is done it is done. Some of the severe metabolic disorder lead to death. All that kind of lovely stuff.

I know a blood test and urine workup are on the list of neccessities. But I have read about spinal taps and muscle biopsies too. I don't even want to go there.

They are consulting with the head of the mitochondrial and metobolic disorders stuff at children's (that is where my neuro is) and will get back to me with the list of tests that should be done. There are also some other questions the NP who talked to me had about the EEG results and she is going to check what some of the terminology meant and get back to me.

They couldn't rule the seizures in or out. He didn't have them while hooked up, but I guess the ritalin really could have exacerbated things and he may have infact been having absence seizures on the ritalin. So no more of that!

So I am not nuts. There is something neurologically going on causing Dave's behaviors, moods and quite possibly the history of regressions that he had.

Someone get me a drink.

Renee

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iVillage Member
Registered: 10-09-2003
In reply to: rbear4
Thu, 05-19-2005 - 1:37am

Drink is in your hand, bottle on your right.

~ Chelsea
iVillage Member
Registered: 03-26-2003
In reply to: rbear4
Thu, 05-19-2005 - 7:14am

hi renee,

sorry to hear things are worrisome right now.

since chelsea has the important goodies covered, i thought i would send you some cyber lilacs from rochester. they are in full bloom this week and beautiful.

thinking of you, valerie

~Valerie
iVillage Member
Registered: 12-24-2004
In reply to: rbear4
Thu, 05-19-2005 - 7:18am

Renee,

This is very interesting. I think you are on the road to understanding something important about your kids, and you should let he experts continue to examine the issues. It is possible that your kids could get into a very useful study, which would give your whole family free treatments of some sort and might help all of them.

I have long believed that there were many subtypes of autism, and this "whole brain" type, which is linked to metabolic issues, has been talked about a lot in the literature. I think the word you were struggling with was ecephalopathy, which literally translated means "head sickness" or "head malfunction." Not comforting, I know, but that's the terminology. A common finding in these types of brains once you are able to biopsy them postmortem is that they have an overgrowth of white matter, which is an immune system response. The immune system has overproduced white matter to attack something, but we don't know why it did this. Some brains practically encased in the stuff. These kids often have more rapidly growing heads in infancy. Did your children show this pattern of very rapid cranial growth? If there was no detectable departure from the norm in head growth, then the white matter overgrowth is probably not that extreme, which is very positive. I suspect that Cait, who has the most impairment, should show this pattern if any of them do. Autistics and high functioning autistics generally are the one's who have been studied with respect to this white matter issue.

Can the dammage be undone? Well, I think the symptoms can be ameliorated somewhat. Theoretically, the white matter could retreat somewhat if you treat the metabolic disorder. The white matter does get in the way of dendritic growth and the growth of new cells, but it does not stop it completely. Even the most impaired autistic people, show improvements with treatment, and they can show improvements at ages beyond puberty when the right treatment is found for them. In NT adults, growth of new cells is now being seen beyond the age of 70. Dendrites (the connections between cells that grow because of learning) are growing all the time, even in autistic brains. I think you have to work harder to see such cell growth in an autistic person, but the change does occur in spite of this so called "dammage." It is just more of an uphill battle for these kids.

Remember that the neuro's who are working on your kids are really well trained in diagnosis, but they don't do much treatment. This background will lead them to say things like "once the dammage is done, it cannot be undone." A person who works primarily on treatment would not use this kind of wording. Also, there have been many statements like this made throughout science, which are later proven to be untrue. Paraplegic's are sometimes able to walk again because they can regrow cells in their spinal column. People with strokes recover functioning. Kids with Down's Syndrome used ot have average IQ's in the 30's, but they can now reach above average IQ levels.

Anyway, I think there really is hope in what they are finding out about Dave. This could lead to helpful treatments for all your kids. From what you have said, it all looks very positive to me.

Suzi

iVillage Member
Registered: 12-22-2003
In reply to: rbear4
Thu, 05-19-2005 - 9:34am

Renee-

I'm sending you a "cyber" 0 limit gift card to the home improvement store of your choice. I know you like to do that kind of stuff, and perhaps it will give you some time to think about something other than autism for a while. ;-)

(((Renee)))

Amy W.

Meez 3D avatar avatars games

iVillage Member
Registered: 09-27-2002
In reply to: rbear4
Fri, 05-20-2005 - 9:50am

Good Morning,

I am glad to hear that you got the results, as confusing and scary as they may seem right now, you are on your way to understanding and helping your child. I often wonder if these children are given to us because someone out there knows we will take great care of them and work to make their world a beautiful as it can be. I have never come acrossed such a dedicated, tired, worried, supportive, strong, and humorous group of mothers then those whose children are struggling with this.

I am sending p&pt to you and your family. I have limited advice, as I do not know exactly what is going on. In fact, I only know what you know, and there's a lot that together we just don't know. HOwever, I will say this. Begin small. Start with blood and urine. We can tell a lot of things from just that in and of itself.

Spinal taps and muscle biopsies are not fun to have done, and they are scary to watch, as a parent or a healthcare provider. It is one of those things that we just do not like to see or have done. However, in the grand scheme of life, we must always choose the path that is right for our child. And that decision always comes back the the previously mentioned worried and scared mother who is working so hard to move the heaven for her babies! Whenever I meet with a family who is facing something unknown or scary or are undecided about procedures, I always have the same advice which I myself live by and that is this:

Not everyone in the world will always agree with your decision. People in the medical field know what we have been taught and that is our reference for what we recommend and believe is the right thing to do. HOwever, you wake up everyday and take care of this child. You know when something is right or wrong, and what needs to be done, or not done. It's amazing how often mother's discover problems with their children, from something major, to just the sniffles by instinct alone. Follow that. Always follow your gut on your children, fight for what your instinct says. And if the decision you make is something you know they are going to hate, always be sure to hug them tight and sit through whatever they are going through. YOu are always their comfort and their safe place, and that is an amazing position to be in.

Now, on the flip side, I wish that I could provide some comfort to those of us who are comfort and safe places. You can always see the worry and wear on the faces of us mothers who care. Remember to breath and take time to do something you enjoy daily. It helps to make us better mothers, and keeps us sane.

Here's a drink for you. A hair of the dog that bit you from all the drinks last night. I say we all show up and build you a nice deck, tie up the sunshine and bring that along and have a tea..uh..margarita party :)

All the best in the universe for you and your family. I will be thinking and praying for you each moment until you have comfort.

*~*PJ*~*

Pj: 31 Healthy  Kris: 38, Wonderful husband, Vasectomy at 23, Failed reversal x1

IVF#1: ER: 05/11/10  ET: 05/14/10  HPT+ 05/24/
iVillage Member
Registered: 09-17-2003
In reply to: rbear4
Fri, 05-20-2005 - 10:04am

Renee,

I'm sorry that you are going through this. We are in the same boat. Kadan has significant slowing and poorly organized alpha wave activity (along with a bunch other things) on his EEG's. He also has lesions on his brain consistent with mitochondrial disorders that show up on his MRI's. He definately has seizures, but they have never showed up on any of his EEG's - and he's had alot of them. He has had all the blood work and testing that we can do - short of a muscle biopsy and spinal tap, which we won't be doing unless things get worse.

So far nothing has definatively shown up on any of the tests. We know that there is something there, but we just can't seem to put our finger on exactly what it is. We are on the same road and we still aren't sure where it is headed either. Part of me would like to find an answer, just so I know. But on the other hand, if the answer is some kind of mitochondrial or metabolic disorder, I really don't want that either. Kadan regressed about 2 years ago and since then he has stayed pretty stable, not much better but not any worse either.

Have you had evoked potentials done? They are the least invasive of the tests we have seen. Good luck with all of the testing.

Beverly

iVillage Member
Registered: 03-26-2003
In reply to: rbear4
Fri, 05-20-2005 - 10:26am

Beverly,

I think you hit on my fears best. Mike had a regression a couple years ago we always attributed to stress. His is not as bad as Kadans, but it was there. They are saying the mito/metobolic is genetic so I am wondering if it is that. Plus from what I have read, some of out symptoms definitely fit. Cait's hypotonia, movement disorders (both kids could qualify for TS diagnosis as well) as well as some of the behavioral stuff.

Dave has always been a scary one for us. He has had periods of regression dating back to when he was 20 months. My biggest fear is that he will have a big regression and there will be nothing we can do about it. Fortunately in the past he has always regained most of his skills but from what I have read of this stuff it can be progressive.

oh well. here waiting again. Boy I would like some answers but even the doctor told me that they often do all the tests and find nothing out.

Ugh.

Renee

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