What is the Best Thermometer for Fever Syndromes?

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thermometer for fever syndromesWith most any of the fever syndromes, you need a good thermometer, or two in case you misplace one. These ear, temporal, and oral thermometers are some of the most recommended by patients and parents dealing with auotinflammatory diseases.

Best ThermometerBest Ear Thermometer – The Braun

Using an ear thermometer is the easiest way to take a temperature, especially a child’s. It’s quick and you can take your child’s temperature when they are sleeping without waking them up.

The Braun ear thermometer does happen to be a consistent top seller on Amazon, recommended by parents of kids with fever syndromes, and is the brand of ear thermometer used by many doctors’ offices and hospitals.

When placed in the ear properly, a green light will flash. However, I have found this feature to not be very reliable. You can place the thermometer on a child’s belly, head, or big toe, get it flash green, and take a temperature. (Yes there is some game playing in our house when a temperature check is needed.) If your child wiggles and squirms too much while you are trying to take his temperature, the thermometer will error out. If you point it towards the nose while in the ear, it gives a good reading. To get a consistent reading, you want to position the ear thermometer the same direction every time you use it. Since you get a lot of practice taking temperatures when dealing with a systemic autoinflammatory disorder, positioning an ear thermometer becomes second nature.

Pros of the Braun Ear Thermometer:

  • Takes a temperature in just a few seconds.
  • Stores several previous temperatures in the memory. Great for when you need to log temperatures and can’t get to it immediately.
  • Batteries last a long time. Even with daily use, they rarely need replacing.
  • Durable and will work for several years.

Best Temporal ThermometerBest Temporal Thermometer – The Exergen

The Exergen is another Amazon best seller with high reviews and is recommended by fever syndrome patients. It does take some practice to get the technique down, but like the ear thermometer, it soon becomes second nature. You should read the instructions carefully and even watch the videos on the Exergen website to ensure you are using the thermometer properly. With proper use, this thermometer has been shown to be highly accurate. However, incorrect use will not give you accurate or consistent readings. The major con to using this thermometer is your child must be sitting very still. If your child is squirming, you won’t be able to hit all the temporal spots correctly.

Pros of the Exergen Temporal Thermometer:

  • It does not need probe covers like the ear thermometer does. The probe is made of antimicrobial material. Cleaning with alcohol between patients is recommended.
  • Can use on a sleeping child without waking.
  • Long battery life.
  • Lasts several years.

best fever thermometerBest Digital Oral/Axillary/Rectal Thermometer

If you want the traditional oral, axillary or rectal thermometer, most any digital one will be accurate and consistent in its readings, although most agreed they liked the Vick’s digital thermometer best. The cons to using one of these is that they take longer, usually 60 seconds, to take a reading and your child has to be awake. However, they are cheap, reliable, and you don’t have to have any special technique to use them properly.

There are some that are called “quick reading” thermometers, but these can sometimes be more prone to inaccuracies, especially if you have a hard time getting the thermometer positioned correctly.  Also, there are some flexible and soft tip thermometers on the market that may be more comfortable for children.

To learn more about taking temperatures, click here. 

* Top photo from The Flying Lifeguards.

*Updated July 2017

Are Autoinflammatory Diseases Caused by the Environment, Diet, or Lifestyle of the Patient or Parents?

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Updated 2/3/2023

autoinflammatory fever syndrome diet

Genes, not diet, environment, or lifestyle cause most autoinflammatory diseases.

Most autoinflammatory diseases are known to be genetic conditions with a gene identified as involved in causing the symptoms. Although we do not know all the factors that may be involved in triggering flares, or all the genes involved in autoinflammatory diseases, there is little to nothing that one could do to avoid having these diseases. The patient’s environment, diet, or lifestyle did not create the mutation causing the disease. Nothing parents or patients did caused their periodic fever syndrome.

Periodic fever syndromes have been traced back over hundreds, some thousands of years.

For many of these conditions, such as FMF, HIDS, and Behçet’s, the mutations and/or disease can be traced back hundreds of years, sometimes thousands of years. It is because of genetic testing technology and awareness that more cases are diagnosed today. Previous generations suffered without any knowledge of what was making them sick.

Leaps have been made in research and knowledge over the last 30 years.

Frequently, affected parents are not diagnosed prior to having children. Sometimes, it was only after the doctors noted the same characteristics in the child that the parent had been presenting with for years that led to a diagnosis. In many cases, the diagnosis was finally made when doctors studied generations of people in the family with the same symptoms. Many of these diseases had been classified in the 20th and early 21st century, but the genetic causes were not discovered until the last years of the 20th century and early 21st century.  A few autoinflammatory diseases, such as CANDLE and DIRA, were not even classified or their genetic cause identified until just a few years ago.

Elimination diets, “anti-inflammatiory” diets, patients have tried them all in an effort to get relief.

Parents and patients often struggle for years without a diagnosis and have tried all sorts of things to “cure” themselves of their symptoms. This ranges from dietary changes, avoidance of certain flare triggers, such as exposure to cold or cooling temperatures for patient with some forms of CAPS, allergy testing, elimination diets, testing for environmental toxins, and more. Generally, none of these are found to help significantly or prevent the progression of the disease. For some it’s only after years of exhausting all these possibilities that the rare recurring fever syndromes are considered.

There are well-studied effective treatment options for many.

There are various treatments for the autoinflammatory diseases. To treat the condition, the medication must target the specific part of the innate immune system that is causing the symptoms. Medications like colchicine and biologics are common treatment options. For some conditions, there is not yet a good treatment.

When diet might help, but will not cure:

There are some patients that have concurrent, or additional diseases, besides their autoinflammatory disease that may benefit from dietary modifications. Dietary changes to treat food allergies, food sensitivities, and any concerns with various foods should be discussed with your doctor and a registered dietitian.

Some patients have gastrointestinal symptoms as part of their periodic fever syndrome and may benefit from a specific diet. But in general, dietary modification does not “cure” or alter the underlying genetic disease at the level necessary to control chronic inflammation in the body.

Some patients with FMF that are on colchicine have been found to have issues with lactose intolerance, and there are anecdotal accounts from some patients in the online communities that dietary changes have helped with their symptoms, but these changes do not “cure” or treat the underlying autoinflammatory disease.  If someone has food sensitivities or food allergies, consuming those foods can cause an inflammatory response, which stresses the body in general.

When diet changes may cause harm in patients with a periodic fever syndrome:

Some patients with autoinflammatory diseases have anemia of inflammation and chronic disease as a result of their disease.

Some children may have trouble with growth or gaining weight due to frequent flares, symptoms such as vomiting or diarrhea, and/or chronic systemic inflammation.

Some may even be diagnosed with failure to thrive.

Restricting a patient’s diet without proper medical supervision could worsen such conditions and cause more harm rather than help. All diet changes should be discussed with the treating rheumatologist or immunologist, a registered dietician, and the gastroenterologist (if one is involved with the care of patient) before any changes are made to the patient’s diet.

According to Dr. Grom, rheumatologist at Cincinnati Children’s Hospital, “My concern, for example, is that if you decide to go with a gluten free diet, it will limit the number of products that you can buy in a supermarket and use in your cooking. As a result, you may lose important sources of important vitamins. A gluten-free diet could eliminate whole grain bread, it’s a very important source of vitamin B1-B6..When you start playing with diets…you may also put your child at risk to develop some other deficiencies for vitamins, for certain micro elements. To me, I think the diversity of food – fruits, vegetables – is more important than a particular diet.”

Due to these diseases not being common or easily understood, often patients and parents have lived with judgments, blame, and misunderstandings from peers, friends, family, co-workers, and even medical professionals.  This can cause a great deal of distress and stigma for patients to overcome, but nothing the patient or parent did or didn’t do caused the autoinflammatory disease.

References

  1. Colchicine-induced lactose malabsorption in patients with familial Mediterranean fever
  2. Unbiased Science Podcast: Don’t be Gluten Pumishment
  3. Science-Based Medicine: Risks of a Gluten-free Diet
  4. Systemic JIA Foundation: SJIA Parents’ Questions Answered by Doctors at Family Day
  5. Unbiased Science Podcast: The Autoimune Protocol (AIP) is full of Inflammatory Claims

 

Are Periodic Fever Syndromes Real?

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are fever syndromes real

Just because something is rare does not make it less real.

Periodic fever syndromes, which are generally rare autoinflammatory diseases, are most certainly very real conditions that have been researched extensively by expert doctors from around the world. Genetic mutations are involved in most known autoinflammatory diseases, so these diseases are affecting people throughout the cells of their body.

Unfortunately, there are some people, sometimes even medical professionals, who may not take these conditions as seriously as they should, often due to a lack of understanding and awareness about these diseases.

Just because a disease is very rare, newly discovered or classified, or not well understood yet does not make the condition any less of an affliction. Also, these are lifelong diseases, in most cases, so most patients will not “grow out of it.”

Some patients with a number of significant chronic and systemic afflictions from their autoinflammatory disease have been asked, “Is this all in your head?” These sorts of statements, especially for some adult patients that suffered for decades undiagnosed can have a negative impact, causing great emotional suffering. Some of these patients give up after awhile on seeking a diagnosis, because they start to feel that it is hopeless to expect to ever have a diagnosis, or they feel that no one believes them.

A few parents have been questioned to see if they were causing these symptoms to occur, which is a serious, and very distressing accusation.  A general misunderstanding about the symptoms and severity of suffering that the patients endure can lead to questions from teachers, spouses, family members, and employers about if the patient is “really that sick,” if they are “just being lazy,” or “trying to get out of things.”

Such questioning and implying that a patient is lying, faking or over-exaggerating their symptoms is very traumatizing to the patient and family, and inappropriate.  People do not usually ask people these sorts of questions with common diseases, such as diabetes, cancer, or Alzheimers, yet it seems all too common for people to question people with a rare disease that does not make the news if it is legitimate.  This is very inconsiderate and demeaning on many levels.

Many patients strive to function fully in their role in society as a student, employee, spouse, and/or caregiver despite their significant challenges with their autoinflammatory disease. In general, the majority of patients with these diseases desperately want to be accepted and perceived as “normal.” They do not want stand out as having a disease.

They endure great pain and frequent, even daily symptoms in some cases, but struggle to get through each day, until they can go home to rest.  If they are having significant flares of symptoms, they may need to take time off from work, school, or a break in their household duties. Many may not take time off when they should, as they are often very concerned about their job, career, how they are perceived by others and their relationship in their family.  Not resting stresses the immune system and could possibly prolong or worsen the flare.

compassion for rare diseasesIf someone is having challenges with their disease, please accept that this is significantly affecting them, and that it is a real health crisis. The pain, fatigue, and other symptoms may at times be so debilitating that patients must miss school, work, and special events. In a severe flare, which may happen regularly and without warning, (as is the nature of periodic fever syndromes,) they may not be able to function at their usual capacity during their flares.

Patients with autoinflammatory diseases generally have a high pain tolerance. Many do not even go to the doctor, or start to complain until they have reached a severe level of suffering.  This can sometimes be risky if they are experiencing for some complications from their disease, such as dehydration, peritonitis, pericardial effusions, brain inflammation (also known as aseptic meningitis). Amyloidosis can develop over time, which can cause liver, kidney or other organ failure if untreated. This high level of pain tolerance leads many people–doctors included, to greatly underestimate the severity of the illness.

As T. R., a parent of a child with NOMID (a form of CAPS) said, “These kids have lived with pain beyond our imagination. How do [you use a] scale of 1-10 when your life probably started out as a 6 or 7 [on the pain scale]?  I was always so frustrated with the sad-happy face spectrum or the 1-10 scale because they assume everyone has a pain free starting point.”

For many with these conditions, their symptoms started at birth. They have never had a pain free starting point as reference, and their condition is very real.