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

I'm looking for medical knowledge. Doctors, nurses, anyone who has knowledge that they can share with me. This issue concerns my 5 year old boy. His name is Robbie. I'm going to give the basics and will answer any further questions that I can in hopes of getting answers. There are a few different issues. I will try to explain them all.

When Robbie was born he was diagnosed with anemia at the hospital. Twice a week they took blood from his heel until he started walking at 10 months. After that, they took the blood from his head. They continued to tell me he was anemic and that his red blood cells were shaped wrong. He was on iron supplements from the time he was about two weeks old. At about 15 months old they stopped the blood tests saying that as long as he continued the supplements he could have the blood work done yearly. I never got a reason for the blood cells being shaped wrong. That is the words they used....shaped wrong. We were led to believe that it wasn't an issue, just keep him on iron supplements.

The second issue is the fevers. My sweet boy runs terrible fevers for 2-3 days every 3-6 weeks. We know when the fever is coming. He gets pale. He gets dark under his eyes. He shows signs that the fever is coming about 12 hours before it starts. These fevers run between 104 and 106.6. Even with Motrin and Tylenol, I can barely get it lower than 102. Never a cough, rash, runny nose, nothing. With these fevers he does complain of leg pain. So bad that he doesn't want to walk at times. These fevers started when he was a month old.

The other thing is the pain. He complains about the leg pain a time or two per week. It's constant when he has the fever. He points to one spot about 3 inches below his left knee on the shin bone. Always that exact spot.

A month ago I took him back to his pediatrician because I want answers. He was 2 days out from the end of his fever. She ordered blood work. I got a call from her later that afternoon. She said he's back to being anemic and that she ran a test called SED rate. She explained that it was to look for inflammation. Apparently it was very high. She said that she was referring him to Vanderbilt Children's Hospital. I told her I would call our insurance to check if that hospital was covered first. She said she already had and she wanted him seen before the end of the month. His appointment at Vanderbilt was this past Tuesday. The Dr we saw was a pediatric rheumatologist, Dr Gotte. She ordered more blood work and x-ray of his legs. She said these 3 issues, leg pain, fevers, blood issues, may or may not be part of the same problem. She suspects Periodic Fever Syndrome. We were given steroids for the fever. When the fever starts we give 40 mgs. She said if it was the fever syndrome then the steroids would almost immediately abort the fever.

Dr Gotte called me yesterday with some of his test results. Anemia, and high platelets, some about red blood cell width distribution. She said she was having Hematology and a pediatric oncologist go over his test results. She asked about blood disorders in our family. My Aunt had myeloproliferative blood disorder. She was diagnosed until her mid 40s. She died of cancer a year ago.

His next appointment is may 10th. She said plan on coming there about every six weeks until this is figured out. I'm scared to death. This is my baby. I know that no one can diagnose him over the internet and I'm not asking for that. I just want some ideas on what to expect. More than anything, I want to know my baby will be okay. If anyone on here knows about this, please, educate me. I have a copy of his blood test results if anyone knows what they mean.

Thank you for taking the time to read this.

a reply to: Kentuckymama
Sickle cell anemia is a specific anemia that results in a misshapen cell. Is that his type of anemia? It can cause other problems including pain.

I have to take Floradix iron supplement for low iron. It's a plant based iron in liquid form that is more easily absorbed. You can buy it at the health food store. It may be worth looking into.

Hope they figure it out and best of luck!

a reply to: Kentuckymama

I was thinking sickle cell too.

Sickle Cell

a reply to: fictitious

Thank you so much for reading all of that. I looked into it. What I read says that in the U.S. it's almost exclusively in black people and there must be both parents contributing that gene. No one in either of our families have had that. Dr Gotte did genetic testing but the results take almost 2 months to come in.

a reply to: ahimsa

If it were sickle cell anemia then wouldn't they have already diagnosed that? Seems to me that it would be relatively easy to recognize.

a reply to: Kentuckymama

I know you must be terrified...I am so sorry!

Have you looked at this website - rarediseases.info.nih.gov ? It is run by the US government and has a link for GARD - genetic and rare diseases...just a thought. Maybe they can help with information for you. I hope they can give you some answers.

Much love and prayers for you and your baby. I am sending out positive thoughts that he will be fine.

a reply to: Missmissie173

Thank you. I am terrified. I get sick to my stomach just thinking about it. I will check out that website now.

a reply to: Kentuckymama

I don't know, it just sounded like sickle cell to me. Hopefully the doctors figure it out soon.

I agree with others who thought it could possibly be sickle cell.
Be careful with the iron supplements. Too much iron can cause problems.
Best of wishes to the little guy.

a reply to: Kentuckymama

There are many type of disorders of red blood cell, here is a structured list:

Hematologic disease

I think only the docs can pinpoint the exact type.

Maybe a genotyping like 23andme could help.

originally posted by: Kentuckymama
Anyone here who can help me understand my son's blood test results?

Is there some reason why you neglected to have the doctor explain all this to you to your satisfaction?
You DO pay the bill, sign his checks, no?
It is YOUR responsibility to make him explain until you understand!
That's his job, it's for YOU to make him do it!

a reply to: Kentuckymama

Did the doctor describe what the red blood cells look like when they said that they are "shaped wrong"? I don't know what it could be but I'm just curious; is the leg pain in both legs? Do you think he has good circulation?

First, resist digging deep online if you don't know any specific details because it is stabbing in the dark...and all the possibilities will make you more anxious and fearful.

Second, ask questions 100 times to the doctors until you understand it. Ask for a printout of any disease or illness if they don't offer one!

If it was specifically sickle cell, I would think they told you. Anemia has lots of forms...did they JUST say generic anemia? Ask for a specific type.

Sickle cell is, I believe, a recessive trait. That means he could have it if both you and his dad carry the recessive gene. That means neither of you would actually have to HAVE it in order to pass it down. It would be a 25% chance of any of your kids having it. So, it is possible he might have it even if you two don't. Just ask because it is easy to diagnose.

Don't be intimidated! Doctors are used to questions!

Have confidence in Vanderbilt's Children's Hospital. They are EXCELLENT! It is a really great hospital in general with connections to lots of specialists if you need them.

Stay positive! I hope you get answers!

a reply to: Kentuckymama

Maybe a second opnion will give you some peace and quiet...

Hope things will improve..

Hi. I was diagnosed m.e (myalgic encephalopathy) a few years ago. It started off with a cold for a couple months then running high temperatures without cold or flu like symptoms, I was explained to that these symptoms vary with different people and ages however the common symptoms with nearly all m.e sufferers is anemia and disturbances in blood cells and counts. Platelets counts being very low along with the red blood cells. Another symptom is the pain and aching in muscles and joints which have left myself and other sufferers bed bound for days even weeks on end, tiredness and irregular sleep patterns ( sleep for 12 hours but feel like you've only had a cat nap. Thought I'd post this as it was something I'd never heard of but have been told that due to the symptoms it can be missed as it looks like other illnesses like fibromyalgia. Hopefully you can get to the bottom of his illness, thought I'd post this as even if it isn't m.e it's something else to be ruled out..

All the best

Mick in scotland

a reply to: Kentuckymama



Ummm...I have a hereditary condition in which my red blood cells are curled up rather than the normal lozenge shape...they also die off much quicker than normal...I also have the dark eyes and jaundice...

My condition is Gilberts Syndrome...or hyperbilirubinemia...its caused by a mutation in liver enzyme production...My liver can't get rid of bilirubin efficiently...The bile then builds up and causes massive red blood cell die off...these two factors then become toxic and are responsible for a number of other issues...reflux...environmental allergies...etc...

Have your doctors ever mentioned a high bilirubin count in your sons blood...?
A great source of information is www.gilbertssyndrome.com

Some other things...does your son complain of abdominal pain on either the right or left or both sides...primarily under the bottom ribs...if so this is likely due to the spleen and liver swelling up...it can be quite excruciating...

I hope this helps...Gilberts flares are no picnic...however for what it's worth...I was first diagnosed when I was twelve years old...I spent most of that year in the hospital...however...I'm currently 55 and just attended an anime/comic con last night as the character "Agent 47...Hitman"...
Even with the painful swollen organs...I'm going back again to cosplay as Agent 47 again today...

Also...wwe lucky Gilberts Syndrome inheritors are also extremely sensitive to not only allergins and some foods...but medications as well...







YouSir

a reply to: Kentuckymama

I'm sorry about what's happening to your little one, I am a mum too and I can understand how you feel right now. I second another poster who said to stop googling his symptoms, that can only do you more harm than good, he is in the hands of good doctors and soon they'll find out what's going on.

I also immediately thought of Sickle cell which is not exclusive to black people, Caucasians from south Europe can also get it. You need two parents with the condition to get the full disease but if only one has it the child gets Sickle Cell trait. It doesn't make you ill but it does give you deformed red blood cells, for life. I know because my oldest son has Sickle Cell Trait.

Periodic fever is also genetic, as far as I know, and the most common one generally affects Mediterranean people, including caucasians from South Europe.

Hight platelets may be caused by an infection or a bone marrow disorder, but the best for you to do is to wait for the tests results before making assumptions. Like the doctor said, the symptoms may be unrelated. I am a nurse and I know that sometimes what seems terrifying ends up having a very simple explanation or cause, you just have to be patient and wait for all tests to be done. I send your little one lots of love.

a reply to: Kentuckymama

The doctors in my area aren't great so what I do is look over my test results, look at what is abnormal, and then Google it. Of course if someone has no medical background then you can actually give yourself more stress by thinking you may have a condition that you don't. I'm glad your doctor is taking this seriously and they are adamant to find out the problem. I know your scared, but I think it's scarier to live with something that your unaware of. At least your son can hopefully be treated when they find out the problem. Sending blessings to your family!

When he's running the fevers, or during the 'wind up' period just before, does he get little white ulcers in his mouth? The sort you might get by accidentally biting the inside of your lip?

a reply to: namelesss

I knew when I posted this there would be at least one person who couldn't understand that I am asking OTHER people's opinions. Do YOU have any idea what it feels like to be in this situation? Have YOU ever gone to the Dr only to remember another question after you left the office? Maybe you haven't. This is very scary for me. I'm worried sick about my child and asking for help. I want to hear from other people that have been through a similar situation. Not someone who takes the time to read a post only to be snarky and make me feel bad for asking. Did you really think that at almost 2 am I could call the Dr when more questions popped in my head? Thanks anyway.