This is a complicated scary case and we are worried sick. If anyone can sit here and painfully read this that might have any alternative ideas, please leave me your comments.
My son is allergic to fire ants and once had an anaphlactic rx to them when he was three. He has been bitten since and rx not as severe. Normally the bite is localized with maybe a knot and some fever/swelling in area but goes away within a day.
My son had a spot that "looked" much simular to this type of bite but couldn't recall being bitten by anything. This was a Thursday one month ago. It went away but that Saturday he developed a low grade fever and by Sunday he had emesis x 2 but no other gi problems. Monday he was better still running low grade fever but complaining of leg pain and muscle soreness. By Weds. he spiked a fever at school and we took him to the peds doc that day. CBC showed elevated WBC but doc wasn't sure if it was truely viral or bacterial and wanted us to come back next day for re-evaluation. Was seen by different doc this time, but no repeat labs were done and he continued to complain of joint pain/fever, malaise. Doctor said he was anemic and this was probably reason for infections. Sent home with iron supplements. That evening fever spiked 104 and took him to the ER where I work. They repeated CBC which clearly showed left shift and mono spot test neg. Son lethargic complaints of leg pain, h/a. Sent home with Omnicef. Returned to Ped doc on Friday and Peds doctor switched to Augmentin. By day two he had energy back was eating and no fevers. Still complaining of leg pain, and now shoulder pain localized on left side. By Wed morning child awoke at 6am and was unable to move left side or walk with all over body aches, conjunctivi looking eyes and high fevers. Called 911 went to children's er and spent 12hr first day. They did more lab work, MRI and xray of hips (which showed bilat fluid) and several consultations with rhumetoid, eye and ortho. Fluid was too small amount to tap and radiology refused to attempt. Sent home and told to return the next day for re-evaluation and to get off of antibotics. Early am child was improved but by afternoon his condition began to deteriorate. WBC went from 18000 to 24000 overnight still showing a left shift. Er docs thinking possible juvenille arthritis and inflammation causing problems but Tordol and other NSAID's did not relive my child's screaming pain. ER docs scratching their head stating something was clearly wrong, but since they couldn't determine a source wanted to send me home a second day after 16hrs in ER. Refused to go and Infectious Disease doc called in on case. Son meanwhile developed pitechial rash and it was decided then to admit to hospital. Child put on Vanc, Doxy, and Clafrin. ID doc thinking possible Rocky Mountain Spotted Fever and son was greatly improved with tx within 24hrs. Send home after 3days in hospital, child regained use of legs but still stiff, on 7 day coarse of doxy. Kept child out of school entire week and did great. No fever no more joint/hip pain, could walk fine, clear white eyes, but still had bed wetting problems (which started with disease onset btw) and tired.
Went back to school on Monday and began running low grade temp that afternoon. Tuesday, school called and said he was lethargic and running 99.8. A few of his classmates are out this week and one is very ill just happens to sit next to my son in class. He was not there this week, however worried about secondary infections. Called his ID doc and she said not to worry probably viral but to go ahead and keep him home all this week. Test they ran in hospital (bartnella, CMV, cat scratch, other tick born illness all came back negative including RMSF titer) Tuesday last day of doxy and child still running low grade fevers, tired, bedwetting, and little to no appetite.
I know this is a long history, but I didn't want to leave anything out here. I am literally sick of him being sick. I am tired of everyone scratching their heads saying "virus" when really they just don't know what they are dealing with. They have run every test imaginable, but no clear answers. Has anyone heard of someone being chronic for that long with no real true cause? I think a lot of this depends on interpretation and it has us all frazzled. If anyone knows of another specialist or has any thoughts about the matter, please let me know. We are concerned, scared parents. Thank you.
Im afraid these types of diseases are out of my scope. From what has happened it does seem like a immune response to infection, but for it to occur that amount of times can only mean a immunodeficiency disease. But the mention of the WBC increase i can only think of is an autoimmune disease.
Here is where i am in unfamiliar waters, i had a look at the list of autoimmune diseases and matched it to the symptoms that you have described. FMF (Familial mediterrianean fever) came out on top.
Beloy i have supplied the link that i read. hope they let me post it up...had posting link issues. still new to this site.
I hope this is of use, and that your son gets better
Hi texasfire. I am sorry your son is so sick, I know it is heartbreaking.
I think it is possible he has Lyme disease. Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It can cause many seemingly unrelated symptoms.
Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first. Is this the test he had done? Also, many people test negative early in the infection.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
Lyme disease is treated with antibiotics. I think his reaction to antibiotics is significant.
Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.
The only Lyme pediatrician in the country is Dr. Charles Ray Jones in New Haven, CT. If you think this may be a possibility, maybe your son's doctor could consult with him?
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.
I hope you get answers soon. You are a good parent!
Thank's to everyone whom read my post and responded. M12, the link worked and that was great information. Scary but something I would never have thought of. Ticker, yes his original peds doc only did a titer and of coarse it came back negative. He never developed the typical bullseye rash that I thought normally came with Lyme. I was quite concerned about this disease b/c I read somewhere that it has been suggested you can catch this disease from mesquitos. My son plays football and he was out 4nights a week and he was eat up with bites despite our persistent use of OFF spray with DEET.
His ID doctor will repeat all labs on Tuesday and she kicked around the idea about testing for autoimmune things. Totally lost in this area. He had a pretty good day today. No fevers, but his eyes have that redlike irritation thing again and he still looks sickly. His school is wanting to put him on a temporary home school program and sent me paperwork to have my doctor sign off for this. They are kind of scared of him, and for him too. His principal said she was worried that due to the fact there are so many kids sick right now, they fear it could create more problems or complicate what's going on with him if he caught something else. Is that the right thing to do? This is breaking my heart to not know how to fix my baby. I am physically sick, worried and upset.
Thanks for all your responses. Hugs.
Hi texasfire. I can understand your being upset. Know that you are doing everything you can to find out what is wrong.
Although a bulls-eye rash is a definite sign of Lyme disease, only about 50% of people who get Lyme ever get a rash. Many people are bitten by ticks without knowing. They are tiny, they inject a numbing agent so you cannot feel them, and they often go in hard-to-see places.
Of course I do not know what is wrong, but I do think his reaction to antibiotics is significant. Tick-borne illnesses are treated with antibiotics. Lyme disease and tick-borne illnesses can be difficult to diagnose largely due to the unreliability of testing.
If you think this is a possibility, it is important to have testing done at a Lyme reputable lab such as IgeneX in Palo Alto, CA. There is one test called the Western Blot. It lists a series of numerical bands with a + - or IND rating after each one. Even if the test is not positive by CDC standards (the majority are not), it is relevant if certain bands are positive. Some are specific for Lyme disease. This lab uses more sensitive testing and lists more bands on the Western Blot.
Lyme symptoms can be cyclic. They can wax, wane, and migrate around the body.
Do not give up. You will find out what is wrong. Please keep me posted on how your son is and how things are going okay?