Ok...so it has been a while since I have blogged. I had wanted (really wanted) to blog weekly about weight loss and all the fun things going on in the Roberts house! Well, as the Lord does sometimes, plans changed when Brock-Allen's health went down hill.
Let me start from the beginning...it started in August 2011. Our sweet boy would run a random fever here and there with no visible symptoms. We would take him to the pediatrician who would just say it was a virus. But my 'mommy' instinct knew something was wrong. Well after our first pediatrician basically told me that I was over-reacting and that Brock-Allen was fine, we found a new pediatrician. I knew this wasn't normal. By this time, the fevers were pretty consistent, running 1-2 fevers per month. He would also catch everything he came in contact with...the flu, colds, croup, pneumonia...everything...back to back. He never even had a chance to recover from the first illness before a new one would start.
Well our new pediatrician (whom we love!) agreed that this was not normal also. She immediately referred us to Infectious Disease at Emory Children's Hospital in Atlanta. Our doctor at Infectious Disease (who we also love) started running lots of test to rule out or find out what was causing all of this. Test after test came back negative, which was a blessing, but frustrating at the same time. Our boy was still sick and still running fever! After multiple trips to Atlanta, lots of blood work, and being hospitalized for seriously high fevers...our doctors began to nail down what was going on.
Brock-Allen has been diagnosed with -Periodic fever, Aphthous-stomatitis, Pharyngitis, Adenitis (PFAPA) Syndrome-yes a very long diagnosis. He has been put on some experimental medicines as well as steroids when he runs a fever (he runs a fever 1-2 times per month). The promising thing and hope is that there is a chance he can outgrow this, typically by the time he hits puberty. So yes, we have a while to go, but at least we can manage it with medication (we hope). We are so thankful that it was not something more serious and that we have wonderful doctors that are available to us 24/7! We are thankful also for a diagnosis! It has been emotionally and physically draining for Brock-Allen, myself, and Wes.
He is still not 100% better, and probably won't be until he completely outgrows this but we know that the Lord will not give us more than we can handle. We have learned so much through this. We have learned the importance of prayer and just being honest and real with God. Of course we have been worried, scared, anxious...you name it. We have cried lots of tears during this time, but we know that the Lord is walking beside us through this all! I am going to try and stay updated this time with how he is doing. Forgive me if I ramble and share lots of crazy medical information about PFAPA. Please continue to pray for our precious boy. Pray specifically that he will outgrow this disease and that the fevers will not get to terribly high.
Thank you so much! I am going to attach some information about this disease if you would be interested in reading about it more.
(Information from Cleveland Clinic - www.clevelandclinic.org)
Periodic fever, Aphthous-stomatitis, Pharyngitis, Adenitis (PFAPA) Syndrome This syndrome includes recurrent episodes of fever with aphthous-stomatitis (mouth sores), pharyngitis (sore throat with redness and sometimes a throat that has a white covering – exudate - like that seen in a throat with streptococcal infection. PFAPA affects children in early childhood, usually starting at age two to four years. Episodes usually decrease in frequency and resolve after the age of 10 years. This disease was recognized for the first time in 1987 and was called Marshall’s. How common is it?The frequency of PFAPA is not known, but the disease appears to be more common than generally appreciated. What causes PFAPA?The answer to this question is not yet known. No gene defect has yet to be found in PFAPA, although in some cases more than one family member has the disease. No infectious cause has been found in PFAPA, thus it is not a contagious disease. It is clear that the inflammatory process is activated during episodes but it is not clear why it is triggered. What are the main symptoms?The main symptoms are episodic fevers, accompanied by a sore throat, mouth ulcers, or enlarged cervical lymph nodes (glands in the neck, an important part of the immune system). The episodes of fever start abruptly and last for three to seven days. During episodes, the child looks very ill and complains about at least one of the three symptoms mentioned above. The episodes of fever recur every few weeks and often families know the exact day when an attack will start. On the day the fever starts the child will feel a little ill before the attack and the family knows an attack is about to start. Not all children have all symptoms, especially mouth sores. Some children have other symptoms like joint pain, abdominal pain, headache, vomiting or diarrhea. How is PFAPA diagnosed?There are no laboratory tests, or imaging procedures, specific for diagnosing PFAPA. The disease will be diagnosed based on the results of a physical examination and other symptoms. Inflammatory blood tests like the white blood cell count, erythrocyte sedimentation rate and the C-reactive protein are increased during attacks. Before the diagnosis is confirmed, it is important to exclude all other diseases that may present with similar symptoms (especially a streptococcal throat). The dramatic response to treatment (see below) also helps diagnose PFAPA. How is PFAPA treated?There is no specific treatment to cure PFAPA. The aim of treatment is to control symptoms during the episodes of fever, to shorten the duration of episodes, and in some children to prevent attacks from occurring. In most children, the disease will resolve by itself without treatment, usually after the age of 10 years. The fever does not usually respond well to Tylenol or nonsteroidal anti-inflammatory drugs. A single dose of steroids (usually prednisone), given when symptoms first appear, has been shown to shorten an episode and sometimes even end the episode. However, the interval between episodes may also be shortened with this treatment, and the next episode may occur earlier than expected. In some patients using cimetidine (a medicine that is used to treat stomach ulcers) may prevents attacks from occurring. In patients with very frequent attacks, a tonsillectomy (removing the tonsils by surgery) may be considered. What is the outcome and course of PFAPA?The disease may last for several years. Over time, the intervals between the episodes will increase and usually after the age of 10 years resolve by itself. Children with PFAPA continue to grow and develop normally. Periodic fever, Aphthous-stomatitis, Pharyngitis, Adenitis (PFAPA) Syndrome This syndrome includes recurrent episodes of fever with aphthous-stomatitis (mouth sores), pharyngitis (sore throat with redness and sometimes a throat that has a white covering – exudate - like that seen in a throat with streptococcal infection. PFAPA affects children in early childhood, usually starting at age two to four years. Episodes usually decrease in frequency and resolve after the age of 10 years. This disease was recognized for the first time in 1987 and was called Marshall’s. How common is it?The frequency of PFAPA is not known, but the disease appears to be more common than generally appreciated. What causes PFAPA?The answer to this question is not yet known. No gene defect has yet to be found in PFAPA, although in some cases more than one family member has the disease. No infectious cause has been found in PFAPA, thus it is not a contagious disease. It is clear that the inflammatory process is activated during episodes but it is not clear why it is triggered. What are the main symptoms?The main symptoms are episodic fevers, accompanied by a sore throat, mouth ulcers, or enlarged cervical lymph nodes (glands in the neck, an important part of the immune system). The episodes of fever start abruptly and last for three to seven days. During episodes, the child looks very ill and complains about at least one of the three symptoms mentioned above. The episodes of fever recur every few weeks and often families know the exact day when an attack will start. On the day the fever starts the child will feel a little ill before the attack and the family knows an attack is about to start. Not all children have all symptoms, especially mouth sores. Some children have other symptoms like joint pain, abdominal pain, headache, vomiting or diarrhea. How is PFAPA diagnosed?There are no laboratory tests, or imaging procedures, specific for diagnosing PFAPA. The disease will be diagnosed based on the results of a physical examination and other symptoms. Inflammatory blood tests like the white blood cell count, erythrocyte sedimentation rate and the C-reactive protein are increased during attacks. Before the diagnosis is confirmed, it is important to exclude all other diseases that may present with similar symptoms (especially a streptococcal throat). The dramatic response to treatment (see below) also helps diagnose PFAPA. How is PFAPA treated?There is no specific treatment to cure PFAPA. The aim of treatment is to control symptoms during the episodes of fever, to shorten the duration of episodes, and in some children to prevent attacks from occurring. In most children, the disease will resolve by itself without treatment, usually after the age of 10 years. The fever does not usually respond well to Tylenol or nonsteroidal anti-inflammatory drugs. A single dose of steroids (usually prednisone), given when symptoms first appear, has been shown to shorten an episode and sometimes even end the episode. However, the interval between episodes may also be shortened with this treatment, and the next episode may occur earlier than expected. In some patients using cimetidine (a medicine that is used to treat stomach ulcers) may prevents attacks from occurring. In patients with very frequent attacks, a tonsillectomy (removing the tonsils by surgery) may be considered. What is the outcome and course of PFAPA?The disease may last for several years. Over time, the intervals between the episodes will increase and usually after the age of 10 years resolve by itself. Children with PFAPA continue to grow and develop normally.
And just so you know...I have lost 0 pounds...yes 0! With everything going, losing weight has been at the bottom of my list. Oh well, I still have an online subscription to Weight Watchers and hope to get started again soon. Brock-Allen and his health is much more important right now :)
Blessings,
Meagan
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