Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the tag “low sodium”

Deb’s Story:

 

Deb has helped provide insights into symptoms that are related to CPM/EPM. She’s suffered from the condition for four years, and I am including excerpts from comments that she’s left me in my comments section to help journal some of the symptoms that aren’t recorded in the medical literature.

In the beginning:

I had the headache for about a month before my collapse into a coma. I kept going to the Chiropractor thinking there was something wrong with my neck, but as it turned out it was my sodium.

She further describes her experience:

My initial symptoms were severe. I was in a coma for 4 weeks. Went into cardiac arrest twice. When I woke I was paralized from the neck down, unable to speak or swallow. I had a feeding tube thru my nose while in my coma, but when I woke and they realized I wasnt able to swallow they put one in my stomache. I was then sent to a nursing home where I did 5 hours of phsyical, occupational, and speach therapy daily. I was in a wheel chair for quite a while. I had horrible pain, sharp shooting pains, and alot of cramping. When I woke from my coma my left foot and leg were cramped up, my foot was up to my knee. My hands, were curled up in balls. To make you understand my mind set, when I saw my neurologist for the first time after I left the hospital, he told me I may be in a wheelchair for the rest of my life. My very first words were “F*** you”. They were faint, and hard to get out, but he had to know what I was thinking. Over the next few months I continued my therapy daily. Eventually I was walking with a wlaker. Then my therapy was cut from 5 days a week to 3. And again over many, many months I began to walk with a cane. My tremers are bad in the AM before my meds, my muscles feels like they are constantly being torn. But now I am duing therapy on my own, I can still only lift 2lbs, I have lost over half of my muscle tissue. They say I may never get that back, also eventually I WILL be back in a wheelchair. I can type with 2 fingers, I used to type 80wpm. I have trouble with my vision, My left eye is now considered a “lazy eye”. When I am tired, or look at the computor for too long it gets a mind of its own. My ligaments in every joint are kinda like broken rubber bands, my joints are what they call “free floating”. So, beginning in Sept I am going to start a series of surgeries on them to tighten the ligaments. I have constant pain, never letting up. Not even for a minute. I go once a week to a Chiropractor because my muscles pull my bones out of place. I also have a massage once a week to help keep me limber. Mind you, I am a former swimmer, loved to run, play volleyball, softball, or pretty much any outdoor sport. Now I have the body of a 80 year old (according to all my docs) and the life of one too. CPM/EPM has stolen everything from me. The only thing I enjoy now is watching my kids screw around in the yard and watching birds. My hands are so weak I can’t even enjoy baking or cooking. Hope this helps, I appreciate your site because I don’t have to say all this stuff on facebook, or even inspire. Sick, just sick to death of this disease. Deb

The following describes her experiences with tremors, a problem that I’ve described in previous posts:

The tremors, Mine are really bad in the AM before my meds. After my meds, they get better. If I am doing anything with my hands for too long they will get bad. I have to have an easy hairstyle because I don’t have the control to “do” my hair. If I hold the hairdryer for too long They will start to shake and cramp. I have an experiment for you; Take your thumb and 1st finger and make a “o” with them. Your thumb should point out at the joint closest to your hand. If it doesn’t you have significant muscle loss. Mine is completely flat, my “o” is more the shape of an egg. Give it a whirl. let me know what you find.

In regards to her experience with how she experienced improvements, but over time, she experienced a decline in her health:

Yes, I have had a decline in my health where things initially improved. I have the same issue with recall, I get so pissed at myself! I can remember things that make me angry or upset just fine, but any happy memories just fade away…… My thumbs face a weird way too when I try to make my “o”. My occupational therapist was the first to notcie it. Also, every morning I cry when getting up, all my joints and muscle are so tight it is rediculous! That’s why I do yoga, it help stretch things back out. What is happening is when you sleep your spasticty is causing your joints and muscles to tighten. So, when you wake in the AM, your body needs to move, if you didn’t move would become “stuck” . I have the reading issues as well, haven’t read a book in almost 4 years. All for now. Deb

………I have been pretty lucky as far as docs go. Since they don’t know much about my disease they take my word for pretty much most of the time. My new issues are my thyroid. I now have hypothryoidism. Never had any issues ever before in my life. My memory sucks as well. I have issues with concentration and my spelling. I could spell anything before, now I have to think thru a word, and sometimes I still get it wrong. I am very spastic, my movements are almost robot like. They have gotten better in some ways, and worse in some ways………

You can read more about spasticity through the blog post I made that included the information that Deb provided.

In regards to the emotional issues related to CPM/EPM, which I touched upon in my previous posts:

….. I know exactly what you are talking about. I still struggle with these things and my cpm/epm happened 3 1/2 years ago. And your right, I never feel truly happy. I can feel good about things that happen to other people. I have lost all of my family (mom, dad, brother, sister) because I just tell it like it is. Things I kept bottled up for 30 years just came flying out of my mouth, I had no control. It was like I was another person. Most of my husbands family has walked away too. They just can’t handle my brutile honesty. Things just blurt right out. I have no control. Before I know what I am saying people are standing there with their mouthes hanging open, just stairing at me. Whatever I am thinking just fly’s out of my mouth! I am almost always so close to tears all it takes is one weird look from someone, anyone and I am crying. In fact yesterday, I told my husband I think I need to find someone to talk to. Someone who justs listens and has no judgement. Since this happened I have felt useless. I have tried every kind of “hobby” you can imagine. Most I can’t do because of my hands, and the rest I just don’t have the patience for. I have been reading your blog on a regular basis, and I think it;s great!……..

Deb has also left several comments on the importance of using sea salt. There is a growing recognition on how sea salt is the better type of salt to use, but I haven’t researched it myself, so I don’t know where the difference is.

…….Also, I have seizures when my sodium gets down to 128. That is the “magic number”. Since my incident, my sodium has been pretty well controlled. I read an article that if you eat sea salt on everything it won’t raise your blood pressure, but also give you what you need. I eat it on everything!!! ……

…….I have been writing to Dr. OZ for 3 years. Also Dr nancy from the Today show. But they don’t want this info out. It would ruin their “salt is bad” campain. They are right, table salt is bad, but sea salt couldn’t be any better for you………..

I hope to post more regarding how CPM/EPM has impacted others, so please feel free to leave me comments, etc if you would like to participate. I really believe this is the only way we”ll ever be able to express our stories in their fullest. Medical journals do not research symptoms or experiences that we suffer from long term. There’s just not enough information regarding our experiences, so we will have to document them ourselves.

THANKS, DEB!!! Hopefully, you will be the first of many 😉

Savannah Hardin: Murder or Medical Malpractice

Let me start by saying, Savannah’s death is a tragedy, and I pray for her family and her friends. I hope this post might help shed light upon what caused her death.

A friend of mine posted comments regarding a blog she read about a 9 year old girl who was run to death by her grandmother (Joyce Garrard) and step mother (Jessica Hardin). When I read the title, I reacted immediately like I’m sure everybody did. I believed that these abusive people needed to pay for their crime,  then I read further.

The girl was forced to run for three hours because she had eaten a candy bar! Wow, this was definitely abusive. After running for three hours, she apparently went into a seizure. At this point, the step mother (who was 9 months pregnant) and paternal grandmother called 911.

This happened on a Friday afternoon and evening, and the girl died on the following Monday while in the hospital.

The autopsy revealed that she was dehydrated and had low sodium at the time of her death.

The report also stated that Savannah had a medical condition that involved her urinary system that required her to have monthly doctor’s visits. Apparently, eating chocolate could cause her serious complications which provoked the paternal grandmother into punishing her with running.

The step mother and  grandmother are being charged with murder. The grandmother is being charged with capital murder, so if she is convicted, she will face the death penalty.

Most of the information I’ve cited comes from the following article:

http://news.yahoo.com/2-charged-death-ala-girl-forced-run-082216169.html

My question is: what really happened to Savannah Hardin?

I have very limited information regarding her personal story, but I have a lot of information regarding hyponatremia. (Please see all of my posts regarding hyponatremia to find out more about this very common metabolic condition, and its life threatening consequences).

I really believe that her death was caused by or contributed to by medical malpractice or at the very least lack of appropriate medical care.

When I read the article regarding Savannah, so many questions come to mind. Did the women give the child water while she ran?

It is commonly believed that a person can exercise for long periods of time if they are provided water. (This is the case with many school athletic programs who push children to the extreme every year as long as they provide water breaks every 20 minutes.

Most people don’t realize how dangerous water is when exercising. When a person sweats, they release large amounts of salt through their sweat. If they proceed to drink large amounts of water, this will further dilute their blood sodium levels. It is so dangerous.

If Savannah’s guardians provided her water instead of an electrolyte based refreshment, like Gatorade, then this could have caused her sodium levels to drop dangerously low.

To further complicate her condition, Savannah had a urinary disorder/disease. Depending on what type of disease she had, this might have contributed to her ability to develop low sodium.

The basic symptoms of  severe dehydration and hyponatremia are the same: headache, nausea, vomiting, muscle cramps, seizures, dizziness, delirium and unconsciousness. Some of these symptoms may occur or all of these symptoms may occur. A big differentiation regarding those with dehydration is that they stop sweating.

Dehydration rarely causes seizures though, so I believe that when Savannah experienced seizures after running, it was because she was hyponatremic not dehydrated. It would be extremely difficult to determine without reviewing all of her medical records and questioning her family.

If her family was providing her with water, in combination with her physical condition and intense exercise, this would have been the perfect storm leading to her developing hyponatremia.

Why do I think there could have been medical malpractice?

It has been recognized that the standard treatment at the time of hospitalization for dehydration is IV fluids. These fluids tend to not contain sodium at all. If a person is treated with these nonsaline fluids and they actually have hyponatremia, then this treatment can be fatal.

It dilutes already diluted blood sodium levels. This would cause brain stem and cerebral swelling, further seizures, coma and brain death.

By the time the hospital receives the lab work showing low blood sodium levels, it is already too late to change the IV fluids to a low sodium based fluid, especially in children.

Please read the following information regarding the susceptibility of children for hyponatremia and how it is supposed that it is being caused mostly by hospital malpractice:

 It has now become apparent that the majority of hospital-acquired hyponatremia in children is iatrogenic and due in large part to the administration of hypotonic fluids to patients with elevated arginine vasopressin levels. Recent prospective studies have demonstrated that administration of 0.9% sodium chloride in maintenance fluids can prevent the development of hyponatremia. Risk factors, such as hypoxia and central nervous system (CNS) involvement, have been identified for the development of hyponatremic encephalopathy, which can lead to neurologic injury at mildly hyponatremic values. It has also become apparent that both children and adult patients are dying from symptomatic hyponatremia due to inadequate therapy. We have proposed the use of intermittent intravenous bolus therapy with 3% sodium chloride, 2 cc/kg with a maximum of 100 cc, to rapidly reverse CNS symptoms and at the same time avoid the possibility of overcorrection of hyponatremia.

This same research paper also recognizes that most children that develop it are inflicted by an underlying urinary condition:

 In order for hyponatremia to develop, there must typically be a relative excess of free water in conjunction with an underlying condition that impairs the kidney’s ability to excrete free water (see Table 2). Excretion of free water will be impaired when there is either (1) a marked reduction in glomerular filtration rate, (2) renal hypoperfusion, or (3) arginine vasopressin (AVP) excess. Most cases of hyponatremia are the result of increased AVP production.

The paper discusses what I mentioned above regarding how the symptoms for the cerebral edema in relation to hyponatremia can easily be diagnosed as other conditions, such as dehydration:

Hyponatremic encephalopathy can be difficult to recognize, as the presenting symptoms are variable and can be nonspecific (see Table 3). The only universal presenting features of hyponatremic encephalopathy are headache, nausea, vomiting, and lethargy. These symptoms can easily be overlooked, as they occur in a variety of conditions. There must be a high index of suspicion for diagnosing hyponatremic encephalopathy, as the progression from mild to advanced symptoms can be abrupt and does not follow a consistent progression.

The information that is quoted above comes from:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874061/

Now, here’s the take home message from the above article: if your child is being treated for ANYTHING in the hospital be sure they receive  .9% saline IV fluids.

I believe the hospital will be determined at least partially responsible for Savannah’s death. If the hospital had treated her for hyponatremia instead of dehydration in the beginning, Savannah might still be alive, and the reason I believe that they did not treat her for hyponatremia was because her autopsy showed that she was hyponatremic after being in the hospital for three days.  The media also implied that she was hospitalized for dehydration.

Please do not mistake that I condone the punishment the girl received: I DON’T. I really believe her punishment was harsh, but I am almost positive that her grandmother and step mother did not intend to cause her death, and I further believe that having the girl run that long did not DIRECTLY cause her death. It was a series of unfortunate events complicated by common ignorance, a medical condition, and the hospital incorrectly treating Savnnah for dehydration instead of hyponatremia.

 I hope that over the next few weeks or  months, more information becomes available so that people will better understand what happened to her.

We live in a democratic society, in which a person is presumed innocent until proven guilty. In our country, this has changed. We now get our information from the press, and we are quick to become the jury and the judge in such cases. I wonder if it will be a matter of time before we regress to a time where we will prosecute a person without a trial. This seems especially true in cases that involve children.

Who needs a judge or a jury, we have the press!

It is easy for me to sit back and criticize people for this type of reaction, but I am the same way. I read a story about a woman who microwaved her baby to death while in a drugged stupor, and my first reaction is that woman deserves to die a horrific death.

However, I refuse to read what the press publishes and believe that it is the whole story.

I may have several ideas as to what happened to Savannah, but it’s based on my very limited information. In order to know exactly what happened to her, a person needs to know: how long she ran; if she was provided fluids and what kind while she ran; what the treatment was that she received when she was transported in the ambulance and at the hospital; did the hospital recognize that she was hyponatremic and/or how long did it take for them to figure it out; what type of medical condition did she have and what was her urine osmolity?

If you are reading this, I pray that you pass this information along. It’s important that people know and understand the dangers involved with hyponatremia, especially regarding children. The more people realize the threat, the more pressure there is on a hospital to change their procedures for dehydration, and the fewer the number of children who will die or be forever brain damaged from hyponatremia.

UPDATE: According to news sources like the Huffington Post and ABC news, Jessica Hardin (Savannah’s Step-mother) is in the process of working out a deal with the prosecutors. Hopefully, the charges will be reduced, or her bail will be dropped to $500,000.

I do believe that there was a medical condition that caused Savannah to suffer from hyponatremia and that led to her death. I am hopeful that the charges will be dropped completely if it was, but unfortunately, innocence comes with a price.

http://www.cbsnews.com/8301-504083_162-57517645-504083/jessica-mae-hardin-ala-stepmom-accused-of-savannah-hardins-running-death-seeks-lower-bond/

Hyponatremia: treatments

This topic might take several days to compose because there is so so much to discuss regarding this.

I’m sure it’s not surprising to most that each type of cause of low sodium is unique, so the treatments will be unique as well. This is true to an extent, but I have a few universal key facts for everyone who is being treated for low sodium.

Please take note of these KEY Treatment facts, and then look at your specific cause of low sodium for additional treatment information.

1.) It is absolutely imperative that you limit your intake of water once you develop low sodium. Increasing your water levels while you are experiencing low blood sodium will further DECREASE/DILUTE your blood sodium. If your sodium levels increase with just fluid restriction, then there should be no further treatment needed.

I believe it is absolutely necessary to listen to your body while being treated for low sodium, so if you are on a fluid restriction, but at some point start to develop extreme thirst (not dry mouth but thirst), then you should listen to your body and consume more fluids. However, in some cases, there is a psychological disorder that makes a person drink extreme amounts of water, so in some cases, this would not be logical.

Fluid restrictions are common when being treated for hyponatremia, but my suggestion is to listen to your body if you develop thirst is  my opinion. It’s not a medical fact or medical suggestion. You will probably find the medical community does not agree.

Let me stress that fluids that do not contain sodium are extremely dangerous during this period, but consuming higher sodium fluids are fine, i.e. chicken or beef broths.

My opinion:

Might I even suggest diluting something like a fleet laxative. Fleet oral laxatives work because they are extremely high in sodium. Your body dumps EXCESS sodium through urine and the GI tract, and where sodium goes water follows. Typically, this causes the liquid stools that GI doctors require for a colonoscopy. However, if your body needs sodium, it will absorb the sodium through the GI tract and release the sodium it doesn’t need.

I have no medical research to back up my idea that using fleet or other sodium solutions will increase your sodium levels more effectively than IV saline solution. I will try to research this more and contact my GI doctors for their opinions in the future.

2.) IV saline of 3% is the typical starting treatment for hyponatremia. This is typically done in conjunction with water restriction. However, in some medical circles, it is believed that ONLY fluid restriction should be used. This is dependent upon the type of hyponatremia you have, as well as your starting sodium.

3.) A person’s blood sodium levels should be evaluated every 2 to 4 hours to prevent a rapid rise in sodium. (This should be done regardless of your starting sodium levels).

A rapid in rise of blood sodium levels can be catastrophic and lead to CPM/EPM, or death. I will discuss this topic in the future.

4.) If a person’s sodium level stabilizes while being treated with an IV saline solution of 3%,  no further treatment should be administered. In this case, stabilizing means that the levels do not decrease further, but remains the same or increases slightly over a 24 hour period.

5.) Prescription drugs like Samsca (tolvaptan) should NOT be used at the same time IV saline solutions are being administered. It is ABSOLUTELY dangerous to use IV saline solutions and most prescription drugs TOGETHER to treat hyponatremia. If a person you know or you are being treated for hyponatremia, be certain that you check the medications you are being given. The contradictions for these medications are typically found online.

A few of the oral prescription drugs used to treat hyponatremia:

Samsca Oral

sodium chloride Oral

tolvaptan Oral

5.) A 6 to 8 mmol/L increase in blood sodium concentration per every 24 hour period is the MOST a person’s sodium should be raised during a 24 hour period. ANYTHING greater than 6 to 8 mmol/L in a 24 hour consecutive frame is considered DANGEROUS!!!  Let me stress that it is a 24 hour consecutive time frame that needs to be considered. Do not consider a CALENDAR day as the 24 hour period. (Some studies suggested that an 10 to 12 mmol/L increase was acceptable, but most doctors now agree that 6 to 8 is the highest it should rise.) Let me stress: THE MOST your sodium level should rise is 6 to 8 mmol/L in a 24 hour period. Consider this point the RED zone. That means it is at this point that you are on the borderline of causing brain injury. The goal should be NOT to reach this RED zone because once your surpass these levels (which can be VERY difficult to control), you will be at high risk for brain injury.

Let me define how to classify a 24 hour period; if your levels were checked between 12 am, Jan 1st and 12 am Jan 2nd and your levels were only raised 5mmol/L, that is fine, but between 2pm Jan. 1st and Jan 2nd, your levels were raised 10 mmol/L, your levels were raised TOO much for a 24 hour consecutive period. A rapid correction of blood sodium levels can cause brain damage and/or death.

 I cannot think of any additional absolutes for the treatment for hyponatremia. These are the key treatment facts. 

Please be on guard if you are being treated for this condition. I will post tomorrow more on what I think are important ideas on the treatments for hyponatremia that are opinion based, but I will include  additional facts regarding specific treatments for the different causes of hyponatremia.

Please, pass this information forward. It might save your life or someone else’s.

 

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