My son was diagnosed with IgG subclass 1 deficiency his total serum level is also decreased in IgG. He gets fatigued extremely easy and it seems sports and stuff make him sick. He has muscle aches and joint and neck pain alot. He does not have an autoimmune disorder. The immunologist gave him the pneumococcal vacine. Would IVIG help with his fatigue??? Does anyone else experience these types of symptoms? I feel soo bad for him. He has not been to school for 5 weeks because of the fatigue and he just gets on thing after another. I am soo frustrated. My doctor says some of his symptons are probally not the IgG but I see many people here have fatigue also.?????



allie

Allie,

About a month ago I was diagnosed with CVID. I also have a decreased total IgG and IgA and only deficient in IgG subclass 1. My main issues are fatigue and sinus infections. From what my immunologist tells me, I'm constantly fatigued because my body is constantly fighting some kind of infection. I'm waiting on the results of my antibody response to the pneumococcal vaccine and tetnus vaccine. If I don't have a significant response I will start the IVIG and my doctor said once I build up enough IgG to fight infections then my energy level will also increase. In short, my doctor says yes the IVIG will help the fatigue.

I hope your son gets some treatments soon and begins feeling better.

Heather



Diagnosed with CVID 2/3/06

Thank You soooo much for responding I have felt so alone and confused with this whole process. These 6 weeks can not seem to go fast enough. We too are waiting to see his response to the pneumoccocal vaccine. He has many many sinus infections also. Atleast I know we are not alone. I really hope that you feel better soon. I know what you must feel like I see my son suffer almost everyday. Good Luck to you and keep us posted on your results and treatments, so we can compare notes on what helps and what dosen't.



allie

One thing my immunologist has done is to put me on daily antibiotics for prevention. I've been on these for a month and have since had one infection on which I doubled up on my antibiotics and it cleared up a little faster than before the diagnosis. My treatment choices will be either continue on antibiotics if my response is good or move on to IVIG if bad.

How old is your son? If you don't mind me asking. I have a 10 month old who goes to daycare and has been to the doctor at least once a month since he was born. We are contemplating getting him tested but our doctor wants to wait and see if he grows out of this. We will revisit getting him tested around 2 years old.

You're definitely not alone.



Diagnosed with CVID 2/3/06

My son is 9 but has battled infections his entire life.He was born premature so that just thought that was his problem until this year when he just one infection after another and could not fight EBV. Apparently there is something called transient hypogammaglobulinemia (i think thats what it is) you should look into it. From what I read babies and children younger than 4-5 may have this and outgrow it but they still need to be treated during that time. Also I read that young children don't start really making IGG until 2(I think) I definitely would look into it though. I do not think my son would have had to suffer soo long had he been diagnosed earlier. It seems like he has lived on antiobiotics my friends used to joke with me and call me a hypochndriac!!!



allie

First of I am sorry your son has to go thru this. My son has the same symptoms. He tells me once he gets his infusion he feels stronger. He has had over 30 surgeries due to infections. I wish I could say all the infections are gone now that he is on I.V.I.G but its not so. He does have less bouts with infection but as long as he feels better I will do whatever the docotrs tell me too.........Melissa

Thanks for responding Melissa how old is your son? I really think that I want to try the IVIG. His nurse practitioner said after the pneumococcal results are in we will talk about it,she thinks we should just atleast try it to see if he has more energy.The doctor sort of talked in circles I much prefer the Nursr Practioner.From what I understand this is pretty rare and different doctors have different opinions on treatment. I think that hearing it first hand from people who are going through it is much more beneficial. I know it is expensive but if it means he will have more energy,less infections and lead a more "normal" life I want to try it!!!!!



allie

Allie -

I have three PIDD kids - and my oldest, who is 5, also suffers from fatigue. I just wanted you to know - you are not alone! Where do you live? There are many support groups that are super active that might make you feel less alone!

Dayna



Some great links:
www.igliving.com
www.immunedisease.com
www.primaryimmune.org
www.info4pi.org
www.jfmworld.org

Check out yahoo groups for other PI support groups

Oh my goodness thank you soo much for responding. He is still not able to go to school still more testing before we can begin IVIG. I am soooo tired!!!!
Now they found protein in his urine anyone else ever had that problem?
I live in Baltimore MD.



allie

I believe my daughter's IgG subclass deficiency is the same...she was diagnosed in November and began IVIG in January...they have just moved her treatment up to every 3 weeks.

She has missed almost 2 months of school - she came down with meningitis just before time for a treatment so her levels were decreased again (which is why they moved her from 4 weeks to 3)

She was having debilitating, chronic daily migraines since meningitis. Four days of hospitalization and a special IV therapy has releived the headaches, but her fatigue and leg and neck pain continue and the immunologist has no answers. She too (usually) plays sports but she has quit even talking about it (she is missing her entire high school swim season). We are trying to get her in with a rheumatologist.

I am baffled regarding her fatigue and muscle and joint pain also - one doctor thinks it might be fibromyalgia. As I said, she is already on IVIg. I am losing sleep with worry...if you find any answers, please let me know and I will do the same. The IVIg would probably keep him healthier overall...

We seen a rheumatologist he stated that my son was fine. You know anytime the body is under alot of stress for a long period fibromyalgia is a possibility... We meet with the head of ped immunology on June 9 to determine whether or not infusions will benefit my son...He had a positive reaction to the pneumoccocal vaccine and his IGG went up a bit. By the way how low was your daughters intial IgG level???? I wonder why they are taking soo long to put my son on IVIG...Have you looked into Chronic fatigue Syndrome someone mentioned it to me..I dont know much about it though...Did they do the antibody testing on your daughter??? You know where they give you the vaccine and then see if they make the antibodies???

Why is it taking until June 9 for them to determine if infusions will help? Waiting for blood work? What immunologist are you seeing? What state do you live in? We see a wonderful immunologist in southern California.

My daughter's initial IgG level was something like 630 and the normal range is somewhere between 842- 2033. They gave her both the pneumococcal and influenze (?) and she showed a poor pneumococcal response. Three weeks after the antibody results, they began her on the IVIg. As far a fibromyalgia goes, I have it...and the meningitis could be considered a triggering event. I just never knew it would be so difficult to see a rheumatologist.

I hope you get some results for your son soon.

Wow I never really put myself out like this because I know how some feel about fibromyalgia but I too have it!!!! What a samll world his intial IgG was only 425 now 535(after the pneumococal vaccine)..I guess because he had a response to the pneumococal vaccine is why they are questioning the infusions...Good luck finding a ped rheumatologist for fibromyalgia I've seen two and neither were big advocates for it...I live in Baltimore and we will be meeting with the doctor at Hopkins in June..They also said they wanted to make sure they weren't missing anything like kidney disease or JRA or GI problem...We have had a colonoscopy,seen a kidney specialist and a rheumatologist..NOTHING except irritable bowel and a bit of protein and albumin(nothing to worry about) I really am getting a bit frustrated and angry at my doctors...Maybe I should get a second opinion...