Ice Storm

I have been off line since Tuesday cause of a very, and I mean very, bad ice storm.
When our power went out early Tuesday morning we packed up and headed out. Dad at the time still had power and so did Bev. We spent our first night with dad and Shirley even though their power went out at around 7 PM. At least we had running water and the fireplace so even though it was cold we didn't freeze. The next day we headed over to Bev's cause she still had power. We spent a couple of days with her till coming home yesterday.
We have power at the moment but it is iffy. Yesterday it kept coming and going. I am in a mad dash today to get some laundry done and run the dishwasher in case it goes out again. We are also under a boiled water order till further notice.
Yesterday evening Terry and Sammy came up to stay with us while Gary and Greg traveled over 2 hours to buy a generator and pick up supplies that you can't find around here right now. Even though we were in the candlelight most of the time we had a very good visit and I am sure the boys will remember it for life.

Joey, I will try and get some pictures on here so you can see what is left of our yard.

Balloons and Goofy Headband

Cuteness Continued

Cute even in a hospital gown

Hospital Food

Bre thought it was cool to get to eat in a highchair again. I just sat her in it cause I didn't want food all in her bed.

Hospital Stay

Bre ended up in the hospital with pneumonia and a fever up to 105.4. She was one sick baby girl there for awhile. She still isn't 100% but she is much better.
Now Marcus is sick and I am afraid that may be the direction he is heading in too. I am crossing my fingers and hoping for the best.

sick kids

Marcus is worse again...sigh.........

Dylan stayed home sick today with stomach problems

(later that night) Bre is running a fever and throwing up


ahh, the joys of being a mom!

Bicycle

You know Bre couldn't just let a new 'toy' sit in the living room without being part of it!

Sleep Over

Marcus was actually feeling well enough that he went to Sammy's for the night.
Keep your fingers crossed that he only keeps improving.

Puzzle Fun

Goofy Face

Scratches??

I can't beleive I am sharing this but it is a comment I want to remember years from now so here it goes.....

This morning Bre was in the bedroom as I was getting dressed. All of a sudden she got a very concerned look on her face. When I inquired what was wrong she asked me who had scratched me. She was talking about the stretchmarks, from having the boys, on my stomach :-(
Gotta love this kid!

Improvement

Marcus is very devoted to getting better. I am so proud of him. I was afraid that I would have to make him do his stretches and exercises every day but it isn't that way at all. He does them every time without being reminded or told. And it is working! He is getting better. Of course he still has bad days and even worse times throughout the day but overall he is showing a lot of improvement which is wonderful.
The doctors all recommend low impact exercise for him so yesterday I bought him an exercise bike. It is a nice one with a comfortable seat so hopefully it will not hurt him using it. Grandpa Pennington is putting it together for us and will bring it over this evening so he will be able to start on it soon.

HAPPY BIRTHDAY JOEY!

Home school

After seeing how much pain Marcus was in this morning just attempting to get up for school I decided putting him back on homeschooling is the best for now.
The doctor in Ohio told us it would take 6-8 weeks to see a real improvement. I now realize him feeling so good on Monday was just simply a good day, nothing more. Of course I got my hopes up wishing for the best like any mother would. The truth is him going to school isn't a priority right now. Of course his education is important and with a teacher coming into our home daily he stays caught up (sometimes even ahead).

One day at a time...that is our motto right now.

Bestfriends

School Questions

Marcus has had a very bad day today. Going to school was out of the question. But it raises the question of what to do about school??? Put him back on full time home schooling? Let him go just the days he feels like it even if it is only once a week? How do you go about getting a doctor's excuse that will be good for every day that he misses?

I want him in school as much as he wants to be there but I understand when he is in too much pain to deal with it. He misses his friends and they miss him. A visit here and there just can't compensate for the day to day interaction that only school provides.

I don't want to push him to going if he truly doesn't feel like it but at the same time I feel like I must push a little cause after all he is just a child and I am the parent.

If only I had the answers.......

A brief guide for parents
Introduction
The aim of this leaflet is to provide basic information about fibromyalgia and suggestions on management and coping skills. Parents and other care-givers can assist young people to manage a social life, continue with their education and plan for the future despite this troublesome condition. FMS affects children in different degrees but FMS is not life threatening.
Why insist on a diagnosis
If an illness is not identified, a child may be suspected of laziness, school phobia or of faking illness to get attention. As a parent you may be accused of keeping your child away from school without good reason. You know better than anyone else if your child is faking illness. A child that is too tired to play with friends or eat their favourite food is not faking. With a diagnosis, a parent or other care-giver can counter any such notions.
You may have a child who has displayed a confusing combination of symptoms for several months, and it may have been difficult to get a diagnosis. If the main symptoms have been pain, muscle stiffness and fatigue and standard laboratory tests have proved negative, then the diagnosis is likely to be fibromyalgia.
Diagnosing fibromyalgia
It can be particularly difficult to diagnose fibromyalgia in a child. One reason is that symptoms may be overlooked amongst the many changes that take place, both mentally and physically, as a child is growing up. Also, a child will often over-compensate when slowed down by illness. A young child is unlikely to be able to explain how they feel and questions developed especially for the young may be used by a doctor to discover how badly a child is affected.
Teenagers are often easier to diagnose as they are older and more able to describe their symptoms. Fibromyalgia often occurs after a lingering thyral illness, but it can be triggered by other factors such as an accident or a shock. The doctor will discuss the medical history of the child and will probably carry out a physical examination.
Fibromyalgia is diagnosed by testing a number of tender points that are found in precise locations on both sides of the body, above and below the waist.
Pain in various sites all over the body will have been experienced for three months or more. This method of diagnosis will help to distinguish fibromyalgia from other conditions, but it does not represent all the effects of the condition.
Pain, fatigue and muscle stiffness are the main symptoms but, at different times, other associated symptoms may occur such as:-
non-restorative sleep - a disorder that makes a person feel more tired on waking than when they went to bed;
irritable bowel syndrome;
headaches
cognitive disturbances including lack of concentration and word mix-up
clumsiness and dizziness
sensitivity to changes in the weather and to noise, bright lights, smoke and other environmental factors
allergies
As you can see, you are dealing with a very complex condition. Fibromyalgia is not the type of illness that will just run its course and fade away in a week or two. Unlike many childhood diseases, fibromyalgia can be a long lasting condition.
At the moment, it has no cure. Therefore, it must be managed in a way that allows a child to live a full and productive life. With careful consideration of circumstances, this can be achieved.
Treating the symptoms
Obtaining a diagnosis was probably very welcome as it did provide some of the answers. However, it may also have been very disturbing, because you will have learned that the child may have to deal with this condition for many years. So, how do you help a child to live with this condition?
Treatment will be carefully worked out for the individual child, as certain medication may be effective for one child but may make another feel worse. The dosage of medication for a child will be small and should be monitored carefully.
To ease pain and promote sleep, anti-depressant drugs are sometimes prescribed, but in doses that are much smaller than those used to treat depression. Where other health problems are evident, a combination of medication may be prescribed. Always discuss the success or failure of medication with a doctor.
Rest is also an effective treatment for chronic pain a fatigue and can help the body to use its resources fight illness. However, too much rest can mean that the body becomes deconditioned, and even more pa n and fatigue can be the result.
One of the most important aspects of rest is a good sleep pattern. This means establishing a bed-time routine with the same events at the same time each night. For a younger child this could mean a bath, snack, brushing their teeth, a story or a chat, and lights out in the same order every night. For older children the routine may be different, but it should still be at the same time every night.
Daily exercise is recommended at a level that does not aggravate the symptoms unduly, either at the time or the next day. As fitness improves, the exercise can be increased. Physiotherapy is often used in fibromyalgia to help maintain muscle tone.
A physiotherapist can help by teaching both muscle stretching and relaxation techniques, and can also correct bad posture so that back pain does not worsen through fatigue related posture habits. A very gentle massage can also help to relieve early morning pain and stiffness.
Managing the conditionThe two most common errors made by parents and care-givers are panic and over-protection. Common sense is your strongest ally. A diagnosis of fibromyalgia does not mean life has to stop. It only needs rearranging. A child troubled with this condition still has to grow and learn and just be a normal child. Whether symptoms are constant or come and go, occasionally it may be hard for a child to take part in activities that were once easy and fun. But the child must be encouraged to carry on with as normal a life as possible.
You can help by finding pastimes that can be enjoyed when physical activities are limited. Provide plenty of books, games, crafts and puzzles, and keep plenty of paper, paint and crayons handy for a younger child. For an older child, encourage craft projects that can be done over a period of time with no pressure to finish. If concentration is not too much of a problem, an older child can benefit from board games and scrabble. These games can keep the brain active and strengthen problem solving skills.
Travel should not be ruled out, as holidays are good fun for everybody - so do not be afraid to travel, but do not be over ambitious in your choice of destination.
Education
It may be beneficial to make an appointment with the school to explain the difficulties experienced with the condition. Early morning symptoms such as stiffness, pain and fatigue means your child may be unable to get ready for school and arrive on time. It is far better to attend late than non attendance for a whole day. If your child has a flare up, suggest work at home. Teach the child to express physical needs clearly to other caregivers and teachers. If requests are polite, they will not be regarded as impertinent. You can help with the words. For instance, "May I have a rest? I am feeling really tired." or 'May I please finish this tomorrow, as I can't concentrate today?" Rest periods during the day can improve stamina. Even ten minutes of rest occasionally, can keep pain and fatigue at manageable levels. You have to make it clear, to both the child and the teacher, that such requests are not just excuses and that you will ensure that any missed work is done later. Encourage the child to develop a positive outlook by emphasising ability and not disability.
In exceptional circumstances home tutoring may be arranged. Your child's education is important - take steps now, your child's future depends on this.
Standing back
Your role is to teach the child to live successfully with this condition and to look after themselves. At the same time, you will have to watch that a younger child does not overdo physical activity and end up in bed for a week. An older child should be allowed to judge what the physical costs are for their various activities. If staying up late, or going to a disco or football match causes more pain and fatigue, they will soon learn to budget their energy so that they can make progress at school and still have some fun.
If you are the main care-giver, ask your partner or a friend to take over while you spend some time with any other children in the family. You must avoid other children resenting the time you spend with their brother or sister.
Support
Many adult support groups exist around the country but, unfortunately there is no group for children and young people.

Latest ResearchStudies in America have identified an imbalance in the Central Nervous System (CNS) and altered blood flow to parts of the brain.
It is thought that a deficiency in Serotonin in the CNS is responsible for the loss of restorative sleep and an increase in the levels of Substance P, the latter giving rise to elevated pain messages.

Overview
Fibromyalgia is a chronic musculoskeletal syndrome characterized by pain, achiness, tenderness, and stiffness in the muscle tissue, ligaments, and tendons. It most frequently affects the neck, shoulders, chest, legs, and lower back. Pain is generally accompanied by sleep disorders, fatigue, gastrointestinal disorders, and depression. Many of its symptoms are similar to those of chronic fatigue syndrome, myofascial pain syndrome, and temporomandibular joint syndrome (TMJ).
Incidence and Prevalence It is estimated that 6 to 8 million people in the United States suffer from fibromyalgia. About 80% of patients are women. While fibromyalgia can occur at any age, the highest incidence occurs among women 20 to 40 years of age.
There have been reports of fibromyalgia in children. What may be considered "growing pains" might in fact be fibromyalgia, especially if the child complains of having difficulty sleeping.
Risk Factors
Risk factors for fibromyalgia include the following:
Age (more common in young adults)
Gender (more common in women than men)
Genetic (familial patterns suggest the disorder may be inherited)
Sleep disorders (whether sleep difficulties are a cause or a result of fibromyalgia is unknown)
Causes
Causes of fibromyalgia are not known. The condition produces vague symptoms that may be associated with diminished blood flow to certain parts of the brain and increased amounts of substance P, which is thought to be a sensory neurotransmitter involved in the communication of pain, touch, and temperature from the body to the brain. Researchers have identified several other possible causes, including the following:
Autonomic nervous system dysfunction
Chronic sleep disorders
Emotional stress or trauma
Immune or endocrine system dysfunction
Upper spinal cord injury
Viral or bacterial infection
Signs and Symptoms
While the symptoms of fibromyalgia can be debilitating, they are not life threatening. Symptoms vary, depending on stress level, physical activity, time of day, and the weather. Pain is the primary symptom, found in virtually 100% of cases—specifically, pain and tenderness in certain areas of the body when pressure is applied to them. These areas, which sometimes are called tender points, include:
Back of the head
Elbows
Hips
Knees
Neck
Upper back
Upper chest
Pain may be aching, burning, throbbing, or move around the body (migratory). Many patients also experience muscle tightness, soreness, and spasms. The patient may be unable to carry out normal daily activities, even though muscle strength is not affected. The pain is often worse in the morning, improves throughout the day, and worsens at night.
Fibromyalgia is a chronic condition and symptoms may be constant or intermittent for years or even a lifetime. Other common symptoms of fibromyalgia include:
Sleep disorders (e.g., restless leg syndrome, sleep apnea)
Gastrointestinal (e.g., abdominal pain, bloating, gas, cramps, alternating diarrhea and constipation)
Numbness or tingling sensations
Chronic headaches (may include facial and jaw pain)
Heightened sensitivity to odors, loud noises, bright lights, various foods, medicines, and changes in weather
Painful menstrual periods (dysmenorrhea) and painful sexual intercourse (dyspareunia)
Frequent urination, strong urge to urinate, and painful urination (dysuria)
Rapid or irregular heart rate, and shortness of breath
Sensation of swelling (edema) in the hands and feet, even though swelling is not present
© 1998-2008 Healthcommunities.com, Inc. All Rights Reserved.

Chapter 7: Fibromyalgia in Children
Excerpted from Fibromyalgia: A Comprehensive Approach by Miryam Williamson Copyright 1996.
Until recently, fibromyalgia was considered an adult disorder; children were thought not to get it. Then, in a study published in the Journal of Rheumatology in 1993, a team of doctors in Israel reported that 6.2 percent of 338 healthy schoolchildren between the ages of nine and 15 met the criteria for the fibromyalgia syndrome. At nearly the same time, a rheumatologist in the US asserted that 45% of the children referred to him had FM. Of these 15 children, nine had been diagnosed incorrectly with juvenile chronic arthritis, three had been told they had growing pains, and two had been given a psychiatric diagnosis. Since then, doctors have been paying more attention to children's complaints of pain and are diagnosing FM with increasing frequency. [...]
Children's complaints of pain must be taken seriously, lest they grow up with untreated FM. Growing pains are a particularly pernicious myth. It should not hurt to grow, and the child whose pain is brushed off that way is a very unfortunate little person. FM is often a family affair [...]That is not to say that your children are sure to have FM if you do, but I hope it will motivate you to be extra vigilant. Children need us to take their complaints of pain seriously. Fibromyalgia can make a child's life miserable at school and on the playground. The child with FM needs a great deal of special help and understanding.
Many adults think of childhood as a carefree time, full of fun and excitement. Some find it hard to comprehend the depth to which children can feel pain, both emotional and physical. Small children want nothing so much as to please the adults around them, and to gain their respect and affection. If parents place a high value on stoicism, then their child will believe that the way to gain approval is to grin and bear it, and is likely to miss badly needed medical attention.
Detecting FM in Children
FM in children often starts with a flu-like illness from which the child seems never to have fully recovered. Sometimes, particularly in children before puberty, the ailment simply comes on gradually, without any obvious precipitating event. Very young children may not remember a time without pain, and thus may not complain at all. [...]
You should suspect fibromyalgia in a child who sleeps restlessly, kicks or twitches during sleep, and has a difficult time getting out of bed in the morning. [...] Insomnia coupled with pains or aches is a trouble signal and should not be ignored, particularly if one of the child's parents has FM.. Sometimes an alert teacher is the first to notice a problem. [...]Children with fibromyalgia often have trouble in school. A considerable amount of schoolwork requires memorization. The cognitive difficulties that often accompany FM may make this difficult, if not impossible.
FM for me as a child consisted of intermittent severe diarrhea, difficulty controlling my bladder, shooting pains in my legs, deep aches in my calf muscles that felt as though my marrow was burning, frequent severe headaches, lack of stamina, and insomnia. Some of my earliest school memories are of teachers joining in with my classmates to taunt me because I wasn't always sure where my feet were. Needless to say, I was never the first chosen for any team game. [...]
Children who squirm and fidget in class may be trying to keep themselves from falling asleep. They may also find it painful to sit in one place for long periods of time. Some symptoms of FM may manifest themselves in the classroom as Attention Deficit Disorder (ADD). Not all children with ADD are hyperactive, as was once thought. There is a form known as "quiet-ADD." Some pediatricians say this may be an early symptom of fibromyalgia in some children. A sharp pediatrician can tell the difference between ADD and FM by performing a tender point examination.
[...]Another characteristic of children with fibromyalgia is that many of them have hypermobile joints — that is, they are "double-jointed." [...] Being double-jointed is not a sure sign of FM, but it should make a parent suspicious.
All parents, particularly those with FM, should see to it that their children are examined for fibromyalgia as soon as they are old enough to say if they feel pain during a tender point examination. Early intervention is important; proper treatment may save the child from a lifetime of suffering.
Tips for dealing with FM in children
Some doctors put children with FM on a very small dose of a tricyclic agent or muscle relaxant. Others prescribe Benadryl at bedtime for sleep. A child who learns good nutritional habits early in life, grows accustomed to going to bed at the same time every night, and is encouraged to take part in a suitable exercise program will be well equipped to avoid FM flareups throughout life.
If your child is diagnosed with FM, you will need to do some explaining. What you say and how you say it will have a profound effect on the child's reaction. Children are particularly vulnerable to thinking that anything that goes wrong is their fault. You must stress that FM is nobody's fault and that nothing anyone could have done would have prevented it. How much you explain about fibromyalgia will depend, of course, on the child's age and intellectual development. Above all, the child must understand that FM can be controlled. [...]
Raising a child who has fibromyalgia is a real challenge. You will need to remember that some days are worse than others, and allow the child to set the pace. Household chores should be adjusted to fit the situation, and flexibility should be the overriding principle. Teachers and school administrators should be informed about your child's FM. They must understand that the child can feel well one day and terribly the next, and that people with fibromyalgia almost always look better than they feel.
Any condition that interferes with a child's learning ability entitles the child to a special needs assessment and education plan, according to US Public Law 94-142, which provides for the education of children with special needs. If your child is having trouble with schoolwork, you may have to be persistent in getting the school to agree to this assessment, but it is your right and you will eventually prevail if you keep at it. Among the accommodations that have been granted to children with FM are two sets of school books so that the child need not carry books to and from school; a tape recorder to eliminate the need to take notes; and a flexible class schedule that allows the child to take her most difficult classes at the time of day when she is feeling her best.
If your child's classmates are making his or her life miserable with teasing, a word with the teacher is in order. Children generally take their behavior cues from their teachers. If the teacher makes an offhand remark about the FM child's clumsiness, or chides the child for being lazy when fatigue strikes, the teacher's attitude will surely lead to teasing by the other children. It is up to you to cultivate the kind of relationship in which your child can confide in you about such problems. An appointment with the school's guidance counselor can often set things right. Proper treatment can make a world of difference. [...]
There is evidence that fibromyalgia in children may not be a lifetime sentence. One study found that 30 months after diagnosis, 11 of 15 children with FM (73%) were no longer fibromyalgic. "We suggest that the outcome of FM in children is more favorable than in adults," the doctors who conducted the study wrote. Guaifenesen has been found to bring some children to a pain-free state, according to their parents. Early intervention seems to be the key in children with fibromyalgia.
Copyright ©1997, Miryam Ehrlich Williamson - ALL RIGHTS RESERVED

For Joey

Joey, I know you are busy and may not have the time to research childhood fibromyalgia. So when I find something that I feel relates to Marcus I will post it here for you to read.

Spoke To Soon

I had to go and pick Marcus up from school today around noon cause he was in too much pain to finish out the day :-(

Back to School

Joey, I wanted to let you know that Marcus went back to school today and made it the whole day. I took his wheelchair for him to sit in and so he doesn't have to walk over to the cafeteria, library, etc. He is still in pain but said it was no worse than sitting at home all day long.
Maybe, just maybe things are turning around for the better (fingers crossed).

Treating Lupus-why we didn't

I have been asked before that if the other doctors were so sure Marcus had Lupus then why did we not treat it with anything but pain pills.
Doctors at St. Louis along with his regular ped told us that some of the medicines could be toxic if used in someone without Lupus. In other words the very medicine that could really help someone with Lupus could kill someone that took it and didn't actually have the disease.
We did consider one medicine but after researching it and knowing it could cause permanent retinal damage we deciding against it till receiving a second opinion which is what lead us to Cincinnati. Thank goodness we waited for another doctor's advice cause we might have put him on something that could have caused blindness.

Hope

So why did we end up in Cincinnati so soon?

Joey had drove to Memphis to start his flight back to Brazil. After he was already in TN he finds out that his flights had been rescheduled for the 1ST cause the rig had been moved.
During this time back at home I was becoming more and more worried about Marcus, he looked awful. He was pale white with dark black circles under each eye. His pain level was through the roof too.
When Joey got back home I told him to go and have a good look at Marcus. He said the same thing I had been thinking, we could no longer wait to get a diagnosis and help.
By 10PM that night we were on the road heading to Ohio.
We took him through the ER and rheumatology meet us. There is no other way to put it than to say God was watching out for us. The top doctor over the department came down to exam him. We didn't know it at the time but Dr. Lovell was named one of the top doctors in 2008 (as well as 2005). Maybe we got him cause we said we wanted the best they had but I think the whole situation was above that.
After reviewing his records from St. Louis, asking many questions and a very good exam he told us without a doubt he does NOT have Lupus! He has Juvenile Primary Fibromyalgia Syndrome. Yes it can be a chronic disease and he will have pain from time to time but it can get better with the proper rest and exercise. This was the greatest thing I have ever heard in my life----it WILL get better! I know Joey and I were both fighting back the tears and the desire to hug this doctor who just told us that there was a light at the end of this very dark tunnel we have been stuck in for almost a year now.
He sent us down to see a physical therapist who fitted him with special inserts for his shoes. He instantly started walking better, less of a limp and straighter. She also showed him some exercises to do to loosen yet strengthen his muscles that are so tense and causing all the pain.
He has been wearing his shoes, doing his exercises, and taking his sleeping pill and is already doing much better. Right now he is sitting at the kitchen table doing his homework without being forced to and it is all because he feels better overall.

One Word

After a very quick, unplanned trip to Ohio it seems we may have an answer summed up in one word-Fibromyalgia.
Juvenile Primary Fibromyalgia Syndrome (JPFS) to be more specific.

You can read more about it here
http://www.cincinnatichildrens.org/health/info/rheumatology/diagnose/jpfs.htm

For now I am tired and heading to bed but for the first time in a long time I have hope and that is a wonderful thing to feel again!