I am SOO frustrated with drs. No one seems to have answers for my TJ. (Or for me for that matter) I just keep getting the Dr runaround.. being sent from dr to dr with no one having real answers. Maybe someone here has better answers than his dumb Drs. Here is a list of my many concerns:
Low Immune system...Working with an immunologest. He gets sick very frequently, had to pull him out of school year before last as he gets every little thing that goes around. if he goes to school for a week, then he out the next week sick, all year. A minor cold he catches worse than my other kids, as well as he catches major illnesses easily. Mostly Viral. a list of some major illnesses in the last 4 years: Viral Menengitis X2, another entroviral drs say was same "family" as viral menengitis, Full on Mono with enlarged spleen and liver(hepatitis) RSV at least once a year, strep 2-3 times a year... Anyway, the immunologest found an abnormality in his T-cell antigen specific test. He sent it to a 2nd lab and same results. It is something the Dr has never seen before, and never found studies about. The dr did the "same test" and applied the antigens to Tjs arm, one of the 3 did have a reaction so the dr dropped it, and assumes his body is responding properly. I know its not! 7 colds a year are average for children.. Tj has that within the first 3 months! (so far this year he has had 10) Colds are also a trigger for his asthma, so that makes his colds so much worse. Not to mention his other severe illnesses.
Sore neck with swollen lymph glands... He has had this for over a year and half..(not counting the 6 months or so that drs say glands can be swollen from Mono) MRI and CT show swollen lymph nodes, however none over 1cm which is the biopsy point. seen PT, Rhumotology, ENT, and pedi-Orthopedic. Most of them feel the neck pain is from the glands, no one knows why glands stay swollen, but get worse when he getting sick. Next step may be biopsy, which we have been putting off due to 2 bad reactions to anesthesia. We are going back to the ENT dr to decide what to do. Our concern is Lymphoma.
Mystery low grade fever... many times a week, not major hinderence, but still want to note it. Fever ranges from 99.5 to 101. Will even have it for couple hours, then it goes away and comes back few hours later, I do not give him meds for it, I only give ibuprofen or tylenol if he gets a fever over 102.
Bad reactions to Anesthesia: The first time was when he got his tonsiles and adnoids removed. He had apnea and snoring. The reaction was that his lungs filled with fluid, and started collapsing, Hi fever. The second time they did a milder one as it was only for his MRI so different anesthesia was used. This time he ran high fever, vomiting, and severe headache. and his normal rash showed up. This is why we have put off the biopsy of his lymph glands.
Mystery rash: He gets flush redish pink spots on him for no apperent reason. It is a concern as it comes and goes all the time. When I see the spots it looks the same as when he has viral menengitis or strep(his strep is BAD he gets as sick and similar symptoms as to when viral menengitis is coming on..sudden hi fever 104+, rash, vomiting, lethargy, stiff neck and severe headache. only way to tell the difference is that his throat shows up sore) These spots blanch, but with the viral menegitis, they usually dont, and they turn worse. That is one way to tell them apart, but when he gets the rash, I watch him close for other signs of illness. This rash is more and more frequent.
Bad headaches: Usually he gets these with illnesses, but more and more he gets them without being sick. Because he is sick SO much, Drs have a hard time trying to figure out if its illness related or not. (he will have had an illness within a week of the headache etc.)
Fatigue: He sometimes gets VERY fatigued after a busy day. One very active day can leave him whiped for several days. Other times he is just fine with active days. He also has days of general malise. nothing pinpoint besides the sore neck, but just not feeling good in general.
Just this past few months a few more things have cropped up:
Heat Intollerence: even when its not that warm out say 75 degrees, he cant be out very long His cheeks turn beet red and bumpy, turns white around the lips, gets sick feeling to his tummy, dizzy etc. All this in 15-20 min of playing outside. Its faster and worse the warmer it is outside.
Occasional bad bruising: He is a typical boy, with bruises on shins etc, but he sometimes gets bruises all over his legs and arms, on the calf or back of thigh, or arms with no apperent reason. These are large bruises, and he will sometimes wake up with them on him when they wernt there when he went to bed, He has no idea of bumping them, like his "normal" boy bruises. Also sometimes when he DOES bump himself, it will be a huge bruise, larger than it shoulda been for the minor bump.
My son also has asthma, since he was 7 months old and had RSV. He was born 9 weeks preemie. His asthma used to only trigger with colds, but now is changing and he has more and more problems even when he isnt sick. He also has numerous food allergies, and is gettinging more and more of them the older he gets. He also has dyslexia. Jeez did I leave anything out?? Probably the poor kid has quite a history. Anyway ss for such a long post, but I am extremely frustrated after yet another fruitless Dr visit. Laying it all out together makes me feel better, and maybe someone out there has a suggestion that we havent tried yet. Thanks for listening it makes me feel better!
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