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moderated by Admin  Reply to Discussion | New Discussion << previous || next >> 
  Discussion Topic: Suggestions Please! -- page: 1 2

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12-08-2005 @ 5:10 PM                          
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  I have a three-year old son that has always been sickly.  He has been on some form of antibiotics for the past five months (double ear infections, throat infections, boils, etc.).  As you all know the frustrations are mounting.  They did blood work a month ago and said that his white blood cell count was normal but he continues to struggle with these infections.  Finally this week his pediatrician stated that he was concerned that there was a problem with his immune system.  He referred us to a infectious disease specialist.  After searching for answers I stumbled across this message board.  Although it gave me hope that answers may be out there, it also filled me with fear of something that I know nothing about.  That is why I turn to all of you that have been through this.  I would appreciate suggestions as to some questions that I should ask the specialist.   Thank you for your time.

A concerned and frightened father.

This message was updated on 12-15-05 @ 3:43 PM

12-15-2005 @ 9:19 AM                          
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  Im not sure Im of any help but I have an 8 yo son with IgG subclss deficiency. We found this out by repeated infections including pneumonia countless times, once for 6 months. The pulmonologist decided to check his IgG levels and found him low. You should ask for his IgG's and subclasses to be checked. It is important to have his subclasses checked because sometimes the IgG's are normal when the subclasses are low. I hope I am not confusing you.
Right now, my son is doing great. It helps to know the diagnosis. So you know what you are dealing with. We had waited about 6 years to figure out what was wrong. He was tested for cystic fibrosis twice, had tests on his heart, and lots more before it was found. it may take a while. keep your chin up. I understand how you feel. Its hard to have your child sick all the time and not be able to help them. I hope you have an understanding family. It is good to have people who will listen and learn. I have that on my side of the family but my husbands side is in denial. Oh well, I hope you get some answers and your child gets better soon. Please update if u can. If you have any questions for me just ask. I will help as much as I can.

12-19-2005 @ 10:26 PM                          
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  Wow...sorry couldnt help. Being like that dont be surprised if you dont get any replies. All I was trying to say was..ask if he has had his subclasses checked. have fun waiting. But hope your son is better

12-28-2005 @ 2:52 AM                          
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  The best thing you can do before you go would be to contact an immunologist.  They will be able to give you some idea of what questions to ask, and what tests would be most appropriate.
There is a link on this website "Expert Locator" which provides the contact details of immunologists nearest to you.
Some of the tests that were helpful in diagnosing my partner with CVID (primary immune disorder) were:
* The tests suggested by the last person (Immunoglobulin subclasses)
* Vaccination levels- if your child has been recently vaccinated (against just about anything), they can test the levels of antibodies made in response to it.
If the response is low, it would suggest that he may not be producing enough immunoglobulins.
* full blood count- the level of lymphocytes (a type of white blood cell) is decreased in some disorders.
(it can mean the difference in diagnosis btw x-linked and CVID.
* Lymphocyte surface markers.  (It's a type of Lymphocyte that makes immunoglobulins- this can help check you have normal levels.
Something I thought that I'd better mention:
You can have normal immunoglobuin levels and still have a primary immunodeficiency!  Antibodies (immunoglobulins) are just ONE aspect of the immune defence.  An immunologist can helP!

Hope you get this.
Best of luck

01-02-2006 @ 10:26 PM                          
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  I totally understand the frenzy that you are in right now.  I have a 10 year old who has gone through years of chronic what appeared to be typical childhood illnesses.  Please be sure to take him to an Immunologist ASAP and get his B and T cells checked.  My little girl suffered for years and now has asthma due to the delayed diagnosis.  I took her to get checked for allergies since she had chronic sinus infectins after having her tonsils and adnoids out and found out she has asthma and the Dr ordered blood tests for her B and T cells and she has been diagnosed, just in August with CVID which is Common Variable Immune Deficieny.   He immeadiatly after getting her tests back re-immunized her for DPT/Tetnaus and Pneumonia vaccines.  Thank goodness he did.  The pre-vaccination blood test showed that she was bottomed out for all three, she had no immune system sufficient to fight any of these three diseases.  We were fortunate that she responded fabulous to the immunizations.  I also got her to the local Children's Hospital to see an Immunologist for a second opinion and she confirmed the results. Though we are still battling sinus infections and are working with four Drs to get them under control, we are fortunate that we finally got a diagnosis and Drs that are working with us to keep her healthy.  She has to go on atleast 21 days of antibiotics when she gets sick because it takes her longer to fight the infections.

These Primary Immune Deficiencies are so different for each person, please get a blood work up for him right away.  I swore after she was diagnosed that I would be an advocate to help people whatever way I can.  I have spent countless hours on the INFO4PI.org website.  It actually helped save my sanity amidst the caos and frenzy of tests and Drs visits.

I wish you the best and let me know how things are going.

From a PI Mom who can totally relate.

01-12-2006 @ 5:11 PM                          
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  I have a question to ask you. i wanted to know how did you get your autoimmune disease.

I got mine when i was 17. My system attack mine cells and other agents in my body. I wanted to get actual condition of my disease, but I couldn't find out.  

01-15-2006 @ 12:00 PM                          
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  From what I have read about this, your body normally produces antibodies on a regular basis. Antibodies such as Immune Gamma Globulin (IGG)normally last about a month in people's bodies. This means that your body constantly has to make new ones. But the B-lymphocyte cells that make IGG may just stop doing their job in some people. Doctors don't yet know why this happens. It could be something that is inherited, as, for example, how some men get bald in their twenties, while some men keep their full head of hair. Unless you lose your hair for another reason such as getting burned in a fire, your hair loss is determined by your genetics. The failure of the B-lymphocyte cells to produce enough IgG is probably controlled by genetics. At our current state of medical knowledge, we don't know how to stimulate the B-lymphocytes to produce more IgG.

What we DO know how to do, however, is replace the missing IgG. The IgG is a component of the blood, and it is given via intravenous, because no drug company has figured out a way to give it as a pill or a shot. I am guessing that is because stomach acids would destroy it if you took it as a pill, and if it was injected in the muscles it might not make it into the blood stream where it is needed.

So once a month or so those of us who don't make enough of it, have to get more. I just started receiving my own immune infusions, so I am still getting them in the hospital as an outpatient. I am pleased to see that some people are able to receive the infusions from a visiting nurse. Once my doctor and I get the immune infusions going on a regular basis, and get past the headache, chills, and flu-like symptoms I had with the first one, I intend to request that I receive them from a visiting nurse rather than in the hospital.

03-10-2006 @ 6:47 PM                          
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  HI HEATHER, I TOO HAVE THREE CHIDREN, ALL GROWN NOW BUT THEY'VE HAD SIMILAR PROBLEMS AND WE'VE DEALT WITH CHRONIC RESP. DISEASE WITH ALL THREE. I JUST FOUND OUT THAT I AM IGG DEFICIENT AND OF COURSE WE ARE SUSPEECTING THAT THE BOYS ARE TOO. WHAT A LONG BATTLE IT'S BEEN BUT THE ANSWRES ARE OUT THERE. I SUGGEST GETTING A PULMONOLOGIST TO DO THE NECC. TESTING AND THE LOGER YOU WAIT THE WORSE THE HEALTH OF THE CHILD GETS.GOOD LUCK

06-19-2006 @ 6:52 AM                          
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  hello Dad, I hope your child is fine by now. I figured out something rather interesting: health (anyone's ) is all about oxygen (0xygenating all body cells) and vitamin and mineral balance. Vitamins ARE our natural antibiotics. When there are too few of any vitamins/minerals than illness occurs because the body can't kill off the pathogens. In europe ozone (chamber)therapy has been used to cure all sorts of diseases. Some hospitals in the states have hperberic oxygen therapy (chambers)...they 'kill' viruses, bacteria, staph/strep, parasites. Pharmacutical antibioitcs deplete (kill) the vitamins/mineralsin the body. If someone is sick their vitamins are already depleted. it's important to build up vitamin c (injections?)...the c oxygenates the body cells, and in so doing , kills off the pathogens. There is an ozone tent available for $1000 at research silver medicine (on the internet)I also found information which matches the 'disease' with which vitamins are depleted: Depleted Nutrients by Antibiotic Therapy (internet).
I hope this helps. sooz


12-15-2006 @ 11:31 PM                          
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  Perhaps this will help ease your fear/concern.  I was diagnosis with an immunodeficiency when I was sixteen, after many numerous illness and hospital visits/stays. The fact that your doctor has detected this possibility in your daughter so early on is a very good thing. Since I started therapy over 10 years ago- I live a normal healthy live. In fact I rarely if ever get sick. I have only had two mild cases bronchitis in all those years and no cases of pneumonia or other illness. You daughter can live a normal healthy active life with the correct treatment. The best advice I can give you to try and determine that correct type of therapy for her.  Most, involve monthly- to weekly infusions and there are variety of methods to administration. Currently, I monitor and administrate my own medication on a weekly basic and it fairly easy and fit into my lifestyle.

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