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My son gets sick after expending physical energy.

My 14-year old son has been failing in health for the last four years. Five out of seven doctors have told me that he's just depressed and making things up to get attention, but I KNOW my son and he is very sick. The most recent blood work revealed that he has kidney and liver damage, as well as a swollen spleen. However, the doctor that finally ordered these blood tests doesn't know what to do for him and wants me to take him to a pediatrician -- but his pediatrician was the first doctor to tell me he was pretending just to get attention! I don't know what to do for him and the local doctors don't either.  However, he is extremely sick and basically bedridden.

His other symptoms include:

Loss of appetite
Loss of weight
Immense loss of muscle tone
Hand tremor
Stiff legs
Joint pain in his legs
Debilitating fatigue
Increasing difficulties in cognitive functioning: can't think clearly, can't follow the plot of movies
Sensitivity to light
Sensitivity to sounds
Aversion to strong flavors or strong scents
Increasing difficulty putting thoughts into words; has a hard time communicating
Inability to tell when he is hungry/thirsty
Swollen lymph nodes
Stunted development for his age
Uncontrollable muscle spasms: can't hold still when awake, will jerk himself awake when asleep
Weird headaches
Poor hand/eye coordination
Aggressive (never used to be)
No longer has beautiful handwriting, although he did before
Has an extremely difficult time reading (didn't use to)
Has regressed mentally
Not where he should be developmentally
Hot, clammy forehead
Cold, clammy hands; VERY clammy hands
Poor balance, occasionally complains of being dizzy
Frequent infections & colds, never seems to be able to get well
Doesn't appear to feel pain much anymore

The first thing I noticed four years ago was that he would get sick after any expenditure of physical energy. At first, it would only be for a few days. Within a year, it progressed to where four hours of playing at Carnaval was followed by a month of being very sick.

Now, he is never well. Each time there is an expenditure of physical, mental or emotional energy, his health takes a steep decline and even if it levels off, he never gets back up to what he was before.

I do know that his maternal great-uncle, in adulthood, had his myelin sheath stripped. He also had stiffness in his legs and hands, but that's all I know.

The regular blood work, CBC, smear, etc., all comes back normal, but he is going down hill, and he's going down hill rapidly. I don't know what sort of specialized tests to ask for. The doctors have said he does not have epilepsy, or leukemia.

But, after being repeatedly told by various doctors that he was just faking it, a year ago, a new internist diagnosed him with 1) pansinusitis; 2) bronchitis; 3) an ear infection; and, 4) a large cyst in his front nasal cavity. The pansinusitis, bronchitis, and ear infection have all cleared up with antibiotics, but he still has all of the above symptoms. He's still sick and I don't have a lot of faith in the doctors telling me there is nothing wrong with him.

I've thought of taking him to the US for medical treatment, but the trip would be too difficult for him while he's this sick. In my country, I don't need a doctor's prescription to order blood work. I can order them myself. However, I'm not a doctor and I don't know what to order! Any suggestions on specialized tests I could order to find out what is going on would be greatly appreciated. Please help. He is so sick and going down hill rapidly.
1 Responses
Avatar universal
We're not doctors here.  He needs a specialist, obviously.  The sinus problems were probably just allergy, and the antibiotics probably did him more harm than he's already in because of the effect they have on the immune system.  You also say he was diagnosed with kidney and liver problems but wasn't sent to a specialist?  That makes no sense.  It could be nutritional deficiencies that are compounding his problems over time as they're not being addressed, it could be disease, but again, there are no doctors on this forum who are able to diagnose illness.  Your profile says you're in Ecuador, and there are a lot of good specialists in large cities in South America.  And from there, it's not that far to the Mayo Clinic.  You gotta do what you gotta do if you can afford it.
Thank you, Paxiled. I am continuing to try to get answers. I've taken him to a variety of specialists, trying to get answers. It was a rhuematologist that finally ordered the right tests to show the liver and kidney damage, and the enlarged spleen, but then she wanted me to take him to a pediatrician! That just feels like a waste of time.

Anyway, I'm not giving up. Thank you for responding.
Not sure what the rheumatologist saw, as they are not liver and kidney docs.  That's probably why she referred you to a pediatrician, who could do an exam geared to a young person and who could then refer you to the proper specialists if necessary.  My guess also is it wasn't kidney or liver damage that was found but indicators of lack of full function, such as elevated liver enzymes.  Because rheumatologists only give pain shots and not much else, you were sent to someone for a better understanding and where to go from there -- that's my guess, anyway.  Good luck with this.  It must be very difficult.
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