Lymphocytes, IgM, and poor antigen response

[2boyzmama]

I'm so lost! My son's lab results show decreased lymphocytes, decreased IgM, and a very poor antigen response to tetanus.

It was a Hematologist/Oncologist/Immunologist that ordered the labs and I just got a call from his Case Manager who said the dr reviewed the results and says there's no cause for concern.

What?

First of all, clinically he shows signs of an immune deficiency. He's had decreased T-cells his whole life as a result of a thymus defect (he has 22q11.2 Deletion Syndrome) He's been experiencing lots of illnesses that are somewhat difficult to treat and some that have led to hospitalization. So we suspected that there might be more than just a slight t-cell deficit, and sure enough these labs seem to suggest that.

So why is the dr not concerned? I would understand if the dr said "the results were abnormal, but it's not a treatable deficiency, so just keep doing what you're doing" but instead he just said "not concerned." ??

[Chakra]

I'm so sorry you have to go through this! My two year old son has stage 4 liver disease. Now listen...I learned the hard way!

Doctors are not created equal. Your mommy gut is telling you that something is not right, so listen to your little inner voice and don't ever ignore it!

For almost the fist two years of my sons life we were flying to another state to see a specialist. My son kept getting worse and the doc. told us that this is normal for his disease. I always had a bad feeling after the doctor visits and never left happy. The doctor never once said anything about a liver transplant. Soooo I started looking for other specialist for a second opinion. During our first visit with the new doc. he said my son will need a transplant. He was put in the hospital for one week for a transplant evaluation. Before we were sent home my son was approved for transplant! So one doctor says no transplant and the other doctor says yes he needs a transplant or he will die. Then we go to another hospital to see another doctor bcus our ins. won't pay for my sons transplant in our home state and the new doctor says the same...Yes he needs a transplant NOW!

Sooo please get a second opinion. I hope everything works out. Hugs and love.

ps: sad but true - some doctors just don't give a shi*.

[tanyalynn]

Originally Posted by 2boyzmama

So why is the dr not concerned? I would understand if the dr said "the results were abnormal, but it's not a treatable deficiency, so just keep doing what you're doing" but instead he just said "not concerned." ??

It's not a technical answer, but I would assume in your situation "not concerned" mostly means "I don't know what to do about it" from a doctor who just doesn't like to say that. I've seen your other posts--and clearly I don't know anything helpful--but this doesn't sound run of the mill. You have more experience than I do, but some doctors just don't like to say "I don't know how to deal with this."

[2boyzmama]

Thanks

Chakra, did your son get his transplant? I hope he's doing well

I'm trying not to get overly frustrated yet, we have a follow-up appt in Feb where I can ask all these questions in detail.

This specialist was supposed to be the one who WOULD listen and take us seriously. I wasn't fully happy with the way our local specialist was managing Connor, so I asked his Geneticist for a referral to someone who was more knowledgeable. That was this dr. Sigh.

I'm going to send an email to the renowned expert in Connor's syndrome (the Dr who named the syndrome, he practices out of New York and surprisingly answers emails!) and see what he says.