Aa
Someone please
My 8 year old has had 24 colds in 13 months. We started seeing an immunologist because I have thought he is immune compromised.
His blood in May was pretty normal except for a high wbc which it was done about 6 days after a minimal operation.
Fast forward to October.
WBC and rbc in range but both on low end. Neutrophils are only 36 and lymphs 55. Absolute lymphs were 4.1. Ok so doc offered more bw.
Got new panels. WBC. Within range but low end. Very low. Rbc within range but on the low end.
Neutrophils 35
Lymphs 54
Monocytes 9
Cd 8 pos lymphs 17.3 low.
He has had chronic colds that come
With a fever that can last a while and then return. As soon as he is on the mend he gets knocked back down again. And now again he is sick. He has been pulled from school due to the excessive illnesses in September alone. He had had swollen nodes in his neck for a while. Lately he has complained about headaches and leg pain but not a lot. Also develops a
Reddish rash.
Is it time to call a hematologist? I'm starting to worry more. I am waiting for our ped to call. We got back to the immunologist on Monday. Any info is greatly appreciated.
Neutrophils are supposed to be higher then that right?
His blood in May was pretty normal except for a high wbc which it was done about 6 days after a minimal operation.
Fast forward to October.
WBC and rbc in range but both on low end. Neutrophils are only 36 and lymphs 55. Absolute lymphs were 4.1. Ok so doc offered more bw.
Got new panels. WBC. Within range but low end. Very low. Rbc within range but on the low end.
Neutrophils 35
Lymphs 54
Monocytes 9
Cd 8 pos lymphs 17.3 low.
He has had chronic colds that come
With a fever that can last a while and then return. As soon as he is on the mend he gets knocked back down again. And now again he is sick. He has been pulled from school due to the excessive illnesses in September alone. He had had swollen nodes in his neck for a while. Lately he has complained about headaches and leg pain but not a lot. Also develops a
Reddish rash.
Is it time to call a hematologist? I'm starting to worry more. I am waiting for our ped to call. We got back to the immunologist on Monday. Any info is greatly appreciated.
Neutrophils are supposed to be higher then that right?
Update: this immunologist has referred us to another at St Christopher's Hospital in Philadelphia. That appt is Nov 18
This doctor specializes in syndromes and autoimmune diseases which it one is they think he has. Periodic syndrome. (I really don't buy into that yet)
Bloodwork was faxed to a pediatric hematologist & oncologist. That appt is December 1. Doctor looked at that bloodwork. Good news is. Not urgent. Bad news is they do need to see him.
This doctor specializes in syndromes and autoimmune diseases which it one is they think he has. Periodic syndrome. (I really don't buy into that yet)
Bloodwork was faxed to a pediatric hematologist & oncologist. That appt is December 1. Doctor looked at that bloodwork. Good news is. Not urgent. Bad news is they do need to see him.
COMMUNITY LEADER
Thanks for posting that update.
I'd suggest learning as much about Periodic Fever Syndromes as you can before going. That way, you won't waste the very limited time with that specialist in asking questions that you can acquaint yourself beforehand.
Let me know what you find out. I wouldn't give up on Di George Syndrome yet anyway. I don't recall any way how a PFS can cause anemia.
I'd suggest learning as much about Periodic Fever Syndromes as you can before going. That way, you won't waste the very limited time with that specialist in asking questions that you can acquaint yourself beforehand.
Let me know what you find out. I wouldn't give up on Di George Syndrome yet anyway. I don't recall any way how a PFS can cause anemia.
Sending us to a specialist in phily at St Christopher's.
Thinks it's periodic fever syndrome. I am also calling a hematologist. Nodes are really swollen. And last blood his lymphs were still higher than neutrophils while healthy
Thinks it's periodic fever syndrome. I am also calling a hematologist. Nodes are really swollen. And last blood his lymphs were still higher than neutrophils while healthy
Thanks for everything. Yep I noticed that before and it is actually scaring the life out of me. He has the speech issues and all
COMMUNITY LEADER
"They have never noticed a murmur in all his checkups"
That's a relief then, and anyway it's not necessary to diagnose DGS.
Well, I have to go for now. I'd print out that page on DGS and take it to any doc that you see. It's rare and so they maybe won't be that familiar with it.
Good luck.
That's a relief then, and anyway it's not necessary to diagnose DGS.
Well, I have to go for now. I'd print out that page on DGS and take it to any doc that you see. It's rare and so they maybe won't be that familiar with it.
Good luck.
COMMUNITY LEADER
Are you aware that he might have been misdiagnosed with Asperger's?
I just found this article:
http://************.com/news/2013/09/19/rare-genetic-disorder-may-be-misdiagnosed-as-autism/59695.html
So now I'd forget about getting the WBC and demand a mineral panel for low calcium, and I'd want a doc to listen for a heart murmur. You have to have sufficient reason for a doc to then go on and and do more complicated and expensive testing - ending with the genetic testing for "22q11.2 deletion syndrome" which is also called Di George Syndrome.
I think you have a very good chance that your answer is here.
I just found this article:
http://************.com/news/2013/09/19/rare-genetic-disorder-may-be-misdiagnosed-as-autism/59695.html
So now I'd forget about getting the WBC and demand a mineral panel for low calcium, and I'd want a doc to listen for a heart murmur. You have to have sufficient reason for a doc to then go on and and do more complicated and expensive testing - ending with the genetic testing for "22q11.2 deletion syndrome" which is also called Di George Syndrome.
I think you have a very good chance that your answer is here.
COMMUNITY LEADER
So at this point, DGS (Di George Syndrome) looks like the most promising thing to look into.
Has any doc listened to his heart for a murmur?
Does he have any of these facial characteristics:
Unusual facial appearance – Features may include an underdeveloped chin, eyes with heavy eyelids, ears that are rotated back and small upper portions of their ear lobes. These facial characteristics vary greatly from person to person and may not be prominent in many patients.
Has any doc listened to his heart for a murmur?
Does he have any of these facial characteristics:
Unusual facial appearance – Features may include an underdeveloped chin, eyes with heavy eyelids, ears that are rotated back and small upper portions of their ear lobes. These facial characteristics vary greatly from person to person and may not be prominent in many patients.
He had stys removed from each eyelid in May. He has been bruising more easily but not at an alarming rate. I have noticed that he has woken with some
COMMUNITY LEADER
"And the fact that he is sick again has me baffled. He hasn't been in school"
It could be from a virus that is normally found in almost everybody, but lies dormant -- like Epstein Barr
It could be from a virus that is normally found in almost everybody, but lies dormant -- like Epstein Barr
COMMUNITY LEADER
"Almost like he's a transplant patient who hasn't taken their immunosuppressants"
That would also apply to any transfusions. What was his surgery for?
From that same page on Di George Syndrome:
Surgery can be performed before any immune defects are corrected. If there is a problem with the T-cells, precautions must be taken as with other children with congenital T-cell immunodeficiencies. These include irradiating all blood products to prevent graft vs. host disease and ensuring the blood products are free of potentially harmful viruses.
That would also apply to any transfusions. What was his surgery for?
From that same page on Di George Syndrome:
Surgery can be performed before any immune defects are corrected. If there is a problem with the T-cells, precautions must be taken as with other children with congenital T-cell immunodeficiencies. These include irradiating all blood products to prevent graft vs. host disease and ensuring the blood products are free of potentially harmful viruses.
COMMUNITY LEADER
"Like his body is attaxking itself"
Autoimmunity – Patients with DGS develop autoimmune disease at a rate that is higher than in the general population. Autoimmune disease occurs when the immune system inappropriately attacks its own body. (See chapter titled “Autoimmunity in Primary Immunodeficiency.”) It is not known why this happens in people with T-lymphocyte problems. The most common autoimmune diseases in DGS are idiopathic thrombocytopenia purpura (antibodies against platelets), autoimmune hemolytic anemia (antibodies against red blood cells), autoimmune arthritis, and autoimmune disease of the thyroid gland.
So there as mentioned previously is anemia from destruction of red blood cells. Does he ever bruise easily? That's be low platelets.
Autoimmunity – Patients with DGS develop autoimmune disease at a rate that is higher than in the general population. Autoimmune disease occurs when the immune system inappropriately attacks its own body. (See chapter titled “Autoimmunity in Primary Immunodeficiency.”) It is not known why this happens in people with T-lymphocyte problems. The most common autoimmune diseases in DGS are idiopathic thrombocytopenia purpura (antibodies against platelets), autoimmune hemolytic anemia (antibodies against red blood cells), autoimmune arthritis, and autoimmune disease of the thyroid gland.
So there as mentioned previously is anemia from destruction of red blood cells. Does he ever bruise easily? That's be low platelets.
Almost like he's a transplant patient who hasn't taken their immunosuppressants. Like his body is attaxking itself
I wish there was a simple answer to all this. Hopefully I will find out soon because this is driving me batty now. And the fact that he is sick again has me baffled. He hasn't been in school
COMMUNITY LEADER
It's funny you say Di George because this is the first page that I looked at:
http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/digeorge-syndrome/
Has your son had a mineral panel to look for hypocalcemia? That might explain various motor problems. too. That's not an expensive test. I'd ask for that test.
There's been such a lot of hype about vitamin D in recent years, but I'd want that tested too to see if he is very low.
I also happened upon this for starters:
"It is also proposed that deprivation of sunlight and vitamin D at higher latitudes facilitates the development of autoimmune diseases by aggravating the CD8+ T-cell deficiency"
http://www.hindawi.com/journals/ad/2012/189096/
That's not a 'high impact' journal, but is good for starters.
http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/digeorge-syndrome/
Has your son had a mineral panel to look for hypocalcemia? That might explain various motor problems. too. That's not an expensive test. I'd ask for that test.
There's been such a lot of hype about vitamin D in recent years, but I'd want that tested too to see if he is very low.
I also happened upon this for starters:
"It is also proposed that deprivation of sunlight and vitamin D at higher latitudes facilitates the development of autoimmune diseases by aggravating the CD8+ T-cell deficiency"
http://www.hindawi.com/journals/ad/2012/189096/
That's not a 'high impact' journal, but is good for starters.
Within my research thus far along with lymphoma there is something called Di George syndrome which kind of makes sense.
This is by far frustrating. He is on home instruction and will remain until these docs get this under control. Only one problem he doesn't take medication by mouth so come when they do figure it out until he can manage that I don't know what we will do.
He has the periods of illness and they linger. I'm waiting for ped to call me our local lab closes by 3pm today I think (I have to look)
This is by far frustrating. He is on home instruction and will remain until these docs get this under control. Only one problem he doesn't take medication by mouth so come when they do figure it out until he can manage that I don't know what we will do.
He has the periods of illness and they linger. I'm waiting for ped to call me our local lab closes by 3pm today I think (I have to look)
COMMUNITY LEADER
"And now again he is sick."
I'd get an order for a CBC phoned in today. I don't guess there is reason to think that he is in critical danger... so the best thing is to gather as many clues as you can.
What he has is not common or else the docs would have found it.
Btw, being susceptible to infection can result from low cells counts, as you know - but also from low cell activity.
"He has SpD, aspergers, dyspraxia and motor functioning impairments."
Ohhh... okay, I'd think that is critical info, and suggest that you research how those conditions can lead to his periodic infections or immune activation. Finding other parents is what I'd want at first, looking for anecdotes.
Web searches for journal articles might be productive... I'll look quick.
I'd get an order for a CBC phoned in today. I don't guess there is reason to think that he is in critical danger... so the best thing is to gather as many clues as you can.
What he has is not common or else the docs would have found it.
Btw, being susceptible to infection can result from low cells counts, as you know - but also from low cell activity.
"He has SpD, aspergers, dyspraxia and motor functioning impairments."
Ohhh... okay, I'd think that is critical info, and suggest that you research how those conditions can lead to his periodic infections or immune activation. Finding other parents is what I'd want at first, looking for anecdotes.
Web searches for journal articles might be productive... I'll look quick.
Hello, nope. No travel outside of our state. Never been out of the country. He does not take medication by mouth. He has SpD, aspergers, dyspraxia and motor functioning impairments.
Diet can be a possibility. He is a very selective eater.
Diet can be a possibility. He is a very selective eater.
Hello, nope. No travel outside of our state. Never been out of the country. He does not take medication by mouth. He has SpD, aspergers, dyspraxia and motor functioning impairments.
Diet can be a possibility. He is a very selective eater.
Diet can be a possibility. He is a very selective eater.
Have an Answer?
You are reading content posted in the Leukemia and Lymphoma Community
An interview with the co-discoverer of one of the biggest breakthroughs in cancer research
From causes to treatment options, get answers to your questions about CML, a type of blood cancer
New drug options on the horizon may make CML, a type of blood cancer, one of the few success stories in cancer treatment
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
