HELP-How do you define mild mito ??? what can you expect???

[Guest guest]

Hello all. So as always my heart goes out to you all in the middle of crisis and day to day serious medical issues.

I read a lot here all the time and am impressed with how much you all know about the disease. I am finally asking here for some help - because I am a bit frustrated.

Understanding the severity of the mito disease I am at a loss for the real definition of mild mito- and also unable to ask Dr. Cohen for more info until our muscle biopsy next month. We are several hundred miles away and I hate to re-ask the same questions...From what I read " mild" mito seems like an oxymoron.

I am in the process of still understanding my 2 year old Zoes working diagnosis- by Dr. Cohen. Mitochondrial disease...hopefully mild as her brain ( although some malformations in utero- underdeveloped cerebellum, left front lobe malformation, increased choline? related to mito)her brain is currently unaffected by the disease her heart is okay too. Just turned 2, she has some eye movement disorders, sensitivity to heat, dehydration etc, some feeding issues, no seizures although due to nerve cell damage in her front lobe, it is likely she will have them at some point. She doesnt speak per se, but is starting to vocalize more and I am teaching her ASL, she has low tone and her muscles fatigue easily. She has the cutest little old lady walker and does well with it. She does take 3 weeks to work through the simplest virus, has low level crashes only one so far that required hospitalization.

Her lab findings are significant for: 2kg and gluterate on the organic acid profile, high fractions of acylcarnitines in the urine, dicarboxylic acid carnitine esters in the blood and urine, and mild acidosis seen on the complete metabolic panel.

So please tell me experienced parents, pending the muscle biopsy, and given she is two with these symptoms any idea what to expect? Is it possible she can have a serious crash at anytime - I am sure many of you have been down this road in your research. I am pretty tough and right now I am positive but want to be realistically prepared... There has got to be more info than just waiting for symptoms to appear??? Any info, thoughts, experiences etc.. I would LOVE to hear. Much better than just reading and waiting.

Thanks,

Suzanne, mom to Zoe (2) mito ( undetermined type) and O almost 4!

[Guest guest]

Unfortunatly nobody knows how mito will progress on anybody. I really don't know how they come up with mild mito to sever mito. This disease affects kids in so many ways. There are cases where the child is physically well (can walk talk, ect) but has major medical problems, on the other hand there are cases where the person may have horrible physical problems but medically has no major issues. I have asked Dr. Cohen the same question and all he was able to tell me was that he did not think she had a fatal case. Other than that I was to read up on and be prepared for just about anything. Grace was diagnosed about one year ago, and many things have happened. She still looks great, and walks pretty good, her speech is poor (but getting better with SP) but she has alot of medical problems. She does have crashes, but have regained from them all quite well. I think now most of her problems are highly treatable. Our only big issue that she has, and so far no treatment for, is the dystautonomia. For some reason it seems to really be getting worse. (She just got out of the hospital yesterday after a 3 day stay, because she got overheated in 20 min outside.) I guess now I am comfortably prepared for the "what if's". I do not think too much of the future, because I don't want to set goals for her that she may never reach. I also live day to day with her, happy that she is doing well and praying she stays that way. Best wishes.

,Mommy to (9), (7), Bre-Anne (6), Grace (2) and our newest arrival is due Sept. 20thFor the latest baby info, and to see our family check out:www.BabyCountDown.com?baby=4007

[Guest guest]

Dear Carrrie: I feel the same way. I was told Zack has a mild form also and they don't think at this time that it'll be fatal but they have said that mito affects everyone different. We also know that they can have a virus which can literally put them overboard wreaking havoc on their little bodies and that damage can put the mito in full swing where some kids end up dying from complications. Zack also gets overheated quickly and tired from the heat. His sensory problems are still bad along with his emotional outbursts of anger. We have speech, OT and PT which say he has made great progress and doing great. We still can't get him potty trained and he doesn't realize that he has to go until he's going and to go poop well, he is so constipated that he screams when he does actually go and also has problems dealing with the idea that it's poop (sensory) he does not realize when he poops a pebble. And I wonder about his hearing even though it tested fine now after tubes but he puts his ear on the speaker for just about everything..radio, song books, computer, electric piano and it is up very loud so loud that I go into turn it down after he has turned it way up and yet, HIS EAR IS ON IT!!!!! I can't figure it all out. I feel though that I am in the same boat as you. Just taking a day at a time. Mom to Zachary 4 yrs old SCAD Variant, Complex I and Complex IV and 5 yrs old SCAD Variant Re: HELP-How do you define mild mito ??? what can you expect??? Unfortunatly nobody knows how mito will progress on anybody. I really don't know how they come up with mild mito to sever mito. This disease affects kids in so many ways. There are cases where the child is physically well (can walk talk, ect) but has major medical problems, on the other hand there are cases where the person may have horrible physical problems but medically has no major issues. I have asked Dr. Cohen the same question and all he was able to tell me was that he did not think she had a fatal case. Other than that I was to read up on and be prepared for just about anything. Grace was diagnosed about one year ago, and many things have happened. She still looks great, and walks pretty good, her speech is poor (but getting better with SP) but she has alot of medical problems. She does have crashes, but have regained from them all quite well. I think now most of her problems are highly treatable. Our only big issue that she has, and so far no treatment for, is the dystautonomia. For some reason it seems to really be getting worse. (She just got out of the hospital yesterday after a 3 day stay, because she got overheated in 20 min outside.) I guess now I am comfortably prepared for the "what if's". I do not think too much of the future, because I don't want to set goals for her that she may never reach. I also live day to day with her, happy that she is doing well and praying she stays that way Best wishes. ,Mommy to (9), (7), Bre-Anne (6), Grace (2) and our newest arrival is due Sept. 20thFor the latest baby info, and to see our family check out:www.BabyCountDown.com?baby=4007 Please contact mito-owner with any problems or questions.

[Guest guest]

Have you tried Miralax for the constipation? My daughter is 30 and

takes it. It has been a life saver.

Shelby,mother of , mitochondrial encephalopathy

> Dear Carrrie:

>  

> I feel the same way.  I was told Zack has a mild form also and they

> don't think at this time that it'll be fatal but they have said that

> mito affects everyone different.  We also know that they can have a

> virus which can literally put them overboard wreaking havoc on their

> little bodies and that damage can put the mito in full swing where

> some kids end up dying from complications.  Zack also gets overheated

> quickly and tired from the heat.  His sensory problems are still bad

> along with his emotional outbursts of anger.  We have speech, OT and

> PT which say he has made great progress and doing great.  We still

> can't get him potty trained and he doesn't realize that he has to go

> until he's going and to go poop well, he is so constipated that he

> screams when he does actually go and also has problems dealing with

> the idea that it's poop (sensory) he does not realize when he poops a

> pebble.  And I won! der about his hearing even though it tested fine

> now after tubes but he puts his ear on the speaker for just about

> everything..radio, song books, computer, electric piano and it is up

> very loud so loud that I go into turn it down after he has turned it

> way up and yet, HIS EAR IS ON IT!!!!!  I can't figure it all out.  I

> feel though that I am in the same boat as you.  Just taking a day at a

> time.

>  

>

> Mom to Zachary 4 yrs old SCAD Variant, Complex I and Complex IV and

> 5 yrs old SCAD Variant

>  

> Re: HELP-How do you define mild mito ??? what can you

> expect???

>  

>

> Unfortunatly nobody knows how mito will progress on anybody. I really

> don't know how they come up with mild mito to sever mito.  This

> disease affects kids in so many ways.  There are cases where the child

> is physically well (can walk talk, ect) but has major medical

> problems, on the other hand there are cases where the person may have

> horrible physical problems but medically has no major issues.  I have

> asked Dr. Cohen the same question and all he was able to tell me was

> that he did not think she had a fatal case.  Other than that I was to

> read up on and be prepared for just about anything.  Grace was

> diagnose! d about one year ago, and many things have happened.  She

> still looks great, and walks pretty good, her speech is poor (but

> getting better with SP) but she has alot of medical problems.  She

> does have crashes, but have regained from them all quite well.  I

> think now most of her problems are highly treatable.  Our only big

> issue that she has, and so far no treatment for, is the

> dystautonomia. For some reason it seems to really be getting worse. 

> (She just got out of the hospital yesterday after a 3 day stay,

> because she got overheated in 20 min outside.)  I guess now I am

> comfortably prepared for the " what if's " .  I do not think too much of

> the future, because I don't want to set goals for her that she may

> never reach.  I also live day to day with her, happy that she is doing

> well and praying she stays that way  Best wishes. 

>  

>  

> ,

> Mommy to (9), (7), Bre-Anne (6), Grace (2) and our

> newest arrival is due Sept. 20th

>

> For the latest baby info, and to see our family check out:

> www.BabyCountDown.com?baby=4007

>

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

>

[Guest guest]

Miralax is Polyethylene glycol 3350. The 3350 is the molecular weight. Antifreeze is ethylene glycol, so polyethylene glycol is not the same thing, but "in the family". PEG is used in colon clean out procedures. In large amounts, electrolytes must be added (colyte, golytely). In theory, the 3350 molecular weight is too large to be passed through the intestinal tract or absorbed by the body. However, with a surprising number of autistic or SID kids who have leaky gut issues, they exhibit behavioral changes that indicate that the product probably IS indeed being absorbed. There have been a growing number of adverse effects to the FDA's adverse events reporting system. Considering that MOST families do not take time to do this, the number of cases is considered an underestimate. Also, when families go to their docs and say, hey, my child now has tics or my child is having frequent urination or my child is becoming obsessive compulsive or hyper-- the docs say it is unrelated because they have been told that this product is completely safe and not absorbed. I have a mom friend whose daughter entered an autistic state while on Miralax (she was SID only). She took her to the ER where they diagnosed "Miralax toxicity". She has made friends with a doc who got into the medical journals/studies on PEG and she is going to send me the info on it. Basically about 4 percent of PEG IS absorbed. So if you think of our leaky gut kiddo's -- are they absorbing even more than this? The literature on PEG states that it is nephrotoxic if absorbed by the body. That means it is toxic to the kidneys. Given our kids issues already, it is no wonder that it probably doesn't take much to damage their liver and kidneys even further. One neurologist hypothesized that the PEG entered the bloodstream, where it drew water towards it, thus pulling salt away from the brain (cerebral salt-wasting condition) and resulted in the neurological changes. Some other reports she has say that when they studied PEG toxicity in rabbits-- they all died of renal failure. So I guess I am fortunate that I put two and two together with Ethan and that he was only on it for two months before something REALLY bad happened to him. What happened to him? Well, he developed tics, dysarthric (slurry) speech, difficulty walking in a coordinated manner--almost drunken at times, difficulty with motor skills, eyes got very dark and intense looking, he was having obssesive compulsive thoughts and behaviors, paranoia, facial grimacing... at first, he had frequent urination. Initially he moved his bowels easily with Miralax, but after a couple of weeks, it was as if neurologically, he could not control that anymore-- he knew he wanted to go, but was unable to push them out. We were told it was a behavior. I have found other moms whose kids also experienced this problem-- I think it became neurologically impossible for them to regulate themselves. They told us to increase the dosage, but that still didn't work. Then they put him on a combination of Miralax and Enulose. It was just a nightmare. The dosage is something else that scares me. Most all kids get started out on the adult dose-- I think it is 17 mg's per day. That is too much for a little body to handle! And then to think that some kids are increased even higher! The package insert advises not to use for more than 2 weeks and I think that should be honored. I think the manufacturer knows all about the small percentage that is absorbed and by advising a two week limit, they are basically trying to tell us that if you continue, you run the risk of absorbing too much and it becoming nephrotoxic. Plus, when families try to get their kids off of it, it is as if they can no longer "go". They are dependent on it. Ethan would complain of a burning sensation as he passed bowel movements after being on Miralax. This continued for a very long time-- I think because it irritated his intestinal tract so much. It seems like a quick-fix product, but it is actually like a trip to hell and back. It is a chemical. Period. It is perceived by the body as an irritant. It doesn't belong in the body and certainly not in such delicate bodies as our kids have. [My thanks to for writing this information and allowing me to use it on my site.]

from: www.danasview.net

Re: HELP-How do you define mild mito ??? what can you expect???

Have you tried Miralax for the constipation? My daughter is 30 and takes it. It has been a life saver.Shelby,mother of , mitochondrial encephalopathy

Dear Carrrie: I feel the same way. I was told Zack has a mild form also and they don't think at this time that it'll be fatal but they have said that mito affects everyone different. We also know that they can have a virus which can literally put them overboard wreaking havoc on their little bodies and that damage can put the mito in full swing where some kids end up dying from complications. Zack also gets overheated quickly and tired from the heat. His sensory problems are still bad along with his emotional outbursts of anger. We have speech, OT and PT which say he has made great progress and doing great. We still can't get him potty trained and he doesn't realize that he has to go until he's going and to go poop well, he is so constipated that he screams when he does actually go and also has problems dealing with the idea that it's poop (sensory) he does not realize when he poops a pebble. And I won! der about his hearing even though it tested fine now after tubes but he puts his ear on the speaker for just about everything..radio, song books, computer, electric piano and it is up very loud so loud that I go into turn it down after he has turned it way up and yet, HIS EAR IS ON IT!!!!! I can't figure it all out. I feel though that I am in the same boat as you. Just taking a day at a time. Mom to Zachary 4 yrs old SCAD Variant, Complex I and Complex IV and 5 yrs old SCAD Variant ----- Original Message -----From: albregra@...Sent: Thursday, July 15, 2004 8:45 AMTo: Mito Subject: Re: HELP-How do you define mild mito ??? what can you expect??? Unfortunatly nobody knows how mito will progress on anybody. I really don't know how they come up with mild mito to sever mito. This disease affects kids in so many ways. There are cases where the child is physically well (can walk talk, ect) but has major medical problems, on the other hand there are cases where the person may have horrible physical problems but medically has no major issues. I have asked Dr. Cohen the same question and all he was able to tell me was that he did not think she had a fatal case. Other than that I was to read up on and be prepared for just about anything. Grace was diagnose! d about one year ago, and many things have happened. She still looks great, and walks pretty good, her speech is poor (but getting better with SP) but she has alot of medical problems. She does have crashes, but have regained from them all quite well. I think now most of her problems are highly treatable. Our only big issue that she has, and so far no treatment for, is the dystautonomia. For some reason it seems to really be getting worse. (She just got out of the hospital yesterday after a 3 day stay, because she got overheated in 20 min outside.) I guess now I am comfortably prepared for the "what if's". I do not think too much of the future, because I don't want to set goals for her that she may never reach. I also live day to day with her, happy that she is doing well and praying she stays that way Best wishes. ,Mommy to (9), (7), Bre-Anne (6), Grace (2) and our newest arrival is due Sept. 20thFor the latest baby info, and to see our family check out:www.BabyCountDown.com?baby=4007 Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.