Anyone here who can help me understand my son's blood test results?

a reply to: angeldoll

Thank you also for the kind words.

To everyone,
It helps to know I can ask questions or even just talk to others about this. My husband closes down when he is worried. It is just too much for him to talk about right now. I understand that and accept it, but I'm a talker. These 2 pages have made me feel so much less alone. Thank you all again for taking the time to help ease this worried mom's mind. Your words and concern have meant more than you can know.

Jillian

a reply to: Kentuckymama

When at the doctor's appointment, one can get forgetful. Consider keeping a note pad handy between now and your next appointment and write out your questions as you think of them. Be prepared to take notes when your questions are answered. Some docs will write out the answers if you give them a printed list with room between questions.

a reply to: Kentuckymama

This is the health of your child: Write everything down. Everything.

You're looking at a recurring fever. That's not normal. Your docs should be on that like a duck on a June Bug. If you know his fever is about to present, you need to take that boy to the hospital and let it fire off in their care. The fever range you've indicated is life threatening. If he's under a physician's care it will be taken very seriously ... especially if you can demonstrate it's routine.

This:

does he get little white ulcers in his mouth

Check for it everyday. (Don't forget) Write down your results ... even if they are negative (makes it hard to dispute if you get a hit). Twice a day is not too often. Use a flashlight and take your time. Make it a little ritual.

You need to look your boy over for any bugs that may be imbedded in his skin. Every square inch. It may be embarrassing for him, but you've gotta get down there with that flashlight and look him over where the sun don't shine. I'm not sure how far I'd go, but something might have gotten just past his butt hole. If there's something there and you don't find it ... how are you gonna get him better? I'm sure the docs have looked in all the holes that don't make him squirm. Did they?

Your docs don't seem overly concerned with your son's anemic condition. Kids don't eat well these days. It's probably a condition brought on by vitamin deficiency. I wonder if a Coombs Test has been ordered. I wouldn't worry about it. And, I want you to know if there's some kind of disorder (with his blood chemistry) any modern lab would find it ... unless it's a rare condition (sickle cell would be caught immediately in most labs).

Blood work can be expensive, but talking to the Chief of Microbiology is probably not. Take those things you've written down and show him/her. S/he can make recommendations to your son's physicians and they can simply approve and get your insurance to pay. Your run-of-the-mill docs are not microbiologists ... believe me ... it's better to get 'professional opinions' from all of the medical staff who are willing to participate in your son's care.

You sound like you know your way around. If your docs aren't helping, go to your insurance agency and get referred to another set of eyes. You'll know when.

Best of luck and kindest regards,
Snarl

originally posted by: Kentuckymama
a reply to: Bedlam

Occasionally he says his throat hurts.

Ummm...hello again...I was wondering if when he says his throat hurts...does he also mention that it seems like there's something stuck in his throat...?

The reason I ask is that when I have a flareup of my Gilbert's Syndrome...I get that feeling of something stuck in the throat...What occurs with me is my thyroid gland enlarges along with my liver/spleen and presses inward on my esophagus...

I wanted to ask again as I referenced in my previous post if the doctors ever mentioned that your son had elevated bilirubin levels...?
I know how scary these things are...from the perspective of the one that is experiencing...I also know how much my parents worried...
Please know that you and your son are in my thoughts and that I wish you and yours well...






Yousir

a reply to: Snarl

I have checked him from head to toe many times. Nothing yet. I agree that his pediatrician never acted overly concerned about the anemia. The only explanation I was ever given was that because he was breastfed, he likely just needed the iron supplements until he was eating table food. I'm vegetarian so the amount of fresh fruits and vegetables in this house is astounding. He has usually got a good appetite, except when the fever comes. We don't eat much junk food in this house. I cook breakfast and dinner daily and lunch also on the weekends. The kids eat lunch at school. With the iron supplements and knowing his diet, I can't understand why he's still anemic.

More of his test results were just posted to his e-chart. His SED rate is still high. He was a few weeks out from the fever when that test was done. Dr Gotte said a bone marrow biopsy may be needed next.

a reply to: YouSir

Thank you for replying. No, he's never complained about feeling like there was anything stuck in his throat. The only time I know of that his bilirubin level was checked was right after he was born. He was a little jaundiced for the first week. Thank you for your kind words.

When you get a name (diagnosis), check out the site "Patients Like Me" (patientslikeme.com) - you may find others there with the same diagnosis since this is a site for folks with relatively rare conditions. If so, they may be able to give specific advice about what they did that helped with issues that you are having.

There may be other message boards as well that have groups of patients with a same or similar diagnosis (and possibly on Facebook) that can give you additional help.

Check with the doctor about the long -term strategies (he may have to monitor his blood throughout his life, but otherwise no real problems.) Check also with your medical insurance and see if they have patient education resources that can help you.

It's quite a burden for a mom. You have my sympathies.

Hi. I don't know anything and haven't read the whole thread.

But, my child had Spontaneus Fever. She would be perfectly normal, then lay down and her temp would go as high as 104. She'd fall asleep for a couple hours then wake up perfectly normal.

I was never able to get her to a doctor in time. It's something I found years later reading on line.

She seemed to outgrow it.

Just a suggestion.

a reply to: Kentuckymama

One thing that's hard to detect is a vitamin B12 deficiency. That could easily explain several of the symptoms your son is presenting. And, (no criticism implied) it's also a symptom of your described household diet. If you agree that this may be an issue, you should consider feeding your son a portion of fresh red meat with his dinner meal, and see what happens to 'his anemia' after a period of months.

There are a couple or three tests. There are supplements. And there's a whole bunch of things you better know like the back of your hand before you start walking down that path. The first one is: how many fillings are in his teeth? If you didn't know to ask that first and what it implies ... disregard any advice I may have appeared to offer in this paragraph.

Again, I wish you the best of luck in your endeavors.

a reply to: Snarl

I should have clarified, I'm the vegetarian in this house. My husband and children eat meat. I was just trying to get across that they have a healthy diet. As for the fillings, he's never had a cavity. Thank you for taking the time to reply to me.

Hi there!

First, I want to tell you that I can both relate and sympathize. There is nothing worse than knowing something is wrong with your baby, and not know what it is. You are NOT alone, and you have every right to be asking questions, digging, and brainstorming. Blind faith in doctors can be a VERY dangerous thing. (and this is coming from someone who has worked in the medical field for years) I'm not saying you shouldn't trust the doctors, I'm just saying that what you are doing right now is being an advocate for your child, and that is a GOOD thing, because no one cares, or is invested as much as you.

Now, I agree with those that have suggested writing things down. Make a list of your questions and take it with you to the next visit. Take notes while there, and ASK your questions. Ask for copies of all the lab work and radiology reports. PUSH for answers (if you need to).

I also agree with the poster about taking him in when he has the high fever. They are right that 104 -106 is life threatening. I know you said you get it down to 102 with medication, but If I were you, I would be taking him in to the ER if your doctor can't see and draw blood ASAP. It sounds like this is an immunological disorder, and the fever is an indication that whatever process is at work is revved up. THAT is when you want the blood work drawn, because all the results will be exaggerated and it may make it easier to get a diagnosis.

Please keep us posted (if you are able) on his results, and I pray that you get answers as well as a simple solution!

a reply to: Byrd

Thank you for that website. I will check it out when we get a diagnosis.

a reply to: Kentuckymama

Once you have a diagnosis (or even a partial diagnosis) you can also keep your eyes on the Clinical Trials website. While your son may do fine on the treatment the doc recommends, you can get an idea of what scientists and doctors are trying (they often test "complementary treatments").

Looking up the words and figuring out the meaning can help give you things to talk to your doctor about.

vαndєrвílt chíldrєn'ѕ hσѕpítαl íѕ α wσrld clαѕѕ fαcílítч, rσввíє íѕ ín grєαt hαndѕ. ít'ѕ *vєrч much* gσσd nєwѕ hє'ѕ gєttíng rєѕєαrch & trєαtmєnt frσm thєrє. rєmαín pαtíєnt, thєч'll gєt tσ thє вσttσm σf ít.

єtα: íf gєnєtíc tєѕtíng вєcσmєѕ αn σptíσn, αѕk fσr thє rєѕultѕ tσ вє ѕєnt tσ єmσrч unívєrѕítч ín αtlαntα - thєч'rє wσrld clαѕѕ ín gєnєtíc rєѕєαrch. вєtwєєn thє hσѕpítαl αnd thє unívєrѕítч gєnєtícѕ lαв thєч cαn ѕσlvє juѕt αвσut αnч díєαѕє σut thєrє.

My husband was just diagnosed with Tick Borne Relapsing Fever, may be something to keep in mind if there doesn't seem to be any answers. He doesn't get the fevers so his was misdiagnosed for the last three years. There is a lot of information on the web that you can check out to see if anything sounds familiar in your son's case.

They need to do a specialized blood test to diagnose it, it is similar to Lyme disease. Take care and hang in there, nothing is harder than seeing your babies sick.

I would suspect a hemoglobinopathy of some sort. A persistence of hemoglobin F or hereditary elliptocytosis, easily diagnosed by hemoglobin electrophoresis. These abnormal cells are sequestered by the spleen at an increased rate and can result in spenomegaly. This can cause a compensatory release of cells by the marrow, perhaps resulting in recurring fevers. ESR stands for erythrocyte sedimentation rate and measures the rate of sedimentation of the red cells, a basic test often elevated due to the presence of increase plasma proteins caused by inflammation. Anemia can cause ESR to be falsely elevated. RDW stands for red cell distribution width. It is a measure of the degree of variability of the size of the red cells. When someone has increased red cell destruction, the body usually compensates by releasing immature red cells from the bone marrow. Depending on the degree of the hematopoietic response you can see NRBCs, nucleated red cells, and polychromatophilic RBCs, i.e. reticulocytes, on peripheral blood smear. These are immature red blood cells and are larger than their mature brethren, hence the Increased RDW. I recommended you visit Mayomedicallaboratories.com and look at their online test catalog. There is a clinical and interpretation tab for virtually every lab test known to man. It is an outstanding resource that I frequently utilize as a medical professional. I wish you and your child the best.

I will try to speak clearly.
You know what chronic anemia treated?
 - Chronic anemia when hemoglobin is low in the blood, low red blood cell, blood cell deficiency. Medicine treats chronic anemia treated with iron preparations. Not a piece of iron, of course, provide chew and give pills of iron salts. Now in medical science - a long-known fact worthy of Looking Glass that iron salts are not absorbed by the body, and do not treat anemia in no way, and not in the least! Moreover, this iron, vedёnnoe in organisms is a cell poison. That is, these molecules of iron, as a foreign body, not only absorbed, but can not even withdraw from the body by any conventional separation methods, ie through the liver or kidneys. That is, if the iron fell into the body - it is because it can not be inferred nothing. For the body, these iron molecules are foreign bodies. And how the body fights with them? - As usual in these cases, it insulates them. The body immune system and includes iron molecules begin be eaten by phagocytic white blood cells - is leukocytes and lymphocytes, and deposited therein.
So if you take iron supplements for a long time, all the white blood cells are overloaded with iron, lose their function and are deposited in the connective tissue in the depot. This condition is called "Hemochromatosis" www.heel-az.com...
. What characterizes this "hemochromatosis"? Since white blood cells are mainly engaged in iron deactivation, white blood cells lose their immune function. That is to say that? - That's right - your own damaged body immunity, ie plus to untreated chronic anemia after "treatment" iron preparations added more what? - That's right - immunodeficiency! That is to say that? Say, say that word do not be afraid, do not fear - correctly AIDS. That is hemochromatosis primarily characterized by "speed." This is in fact not a disease? - Is not a disease. Syndrome? - Syndrome. Acquired? - Purchased. Immunodeficiency? - Immune!
That is to say that iron supplements? - The cause of AIDS!
Nevertheless, throughout the world and in the vaunted American medicine, if a person, usually a woman, chronic anemia - than her, so to speak, "treat"? - She napropisyvayut different preparations of iron! - For money! Well I would freely give poison. But the fact and the nature of their handwriting, they rope for hanging and sell more!
What's this? Theatre of the Absurd? - I thought so too, until he was a young doctor. But when I saw the face of those who develop health policy at the highest level, and the remaining doctors are then carried out their purpose, and that is called, say, "medical education"; then that, seeing them live; I realized that here we are dealing with a very cunning, insidious, and an order of magnitude higher than us earthlings intelligence beings

a reply to: dickrichards

Thank you for the website. When I get a diagnosis I will check out this site to help me understand the tests. There are more test results added to his chart about every day now. I have so far resisted the overwhelming urge to just randomly search. No x-ray results yet. Just waiting and very anxious. Thank you for helping.

a reply to: mangust69

mangust69, you are out of line posting that and scaring this poor mother...YOU do not know whats wrong with her boy

I agree with the other poster about writing down any questions you think of at any time before going to an appointment and bring it and write down what they say, or have them give you print outs.

I also agree, take him in when he is in one of these fever episodes so they can run tests during it...how different will the results be when he is in one of these as to when he is seemly normal.

doesn't sound like sickle cell, you were told his blood cells are elongated?? sickle cell is exactly that, instead of the cells being round they are shaped like a sickle or a quarter moon

you are his advocate and we are here for you! hang in there!!!

Do you have a blood panel of any sorts ? I would ask for a lime disease test. Then change his food. If he is getting inflammation that's a sign of food allergens or lime disease. Its way more common than even doctors want to believe. I know a girl who got it in the Florida keys not a place known for ticks.