Well we got the results back from his most recent blood tests and his IGG levels are perfect. So we keep infusing the same amount weekly 16ML. We will go back and get his blood tested again in 6 months!
We just got back from Disney for the IDF Conference and what a bunce of great information we received. The best part about the entire conference is my son met another little boy the same age as him the receives the Vivaglobin also. He thought is was great to not be the only person it the world getting infusions.
The bad side of the Conference is it was at Disney so any and every "sick bug" was out and present so he is starting to get sick. He gets his infusion tomorrow so I hoping it will knock the "sick bug" out of his system!
Wednesday, June 24, 2009
Wednesday, June 10, 2009
June 10, 2009
We are still going strong over 1 month now infection free! Jacob got his blood tested yesterday, 6-9-09, we will see how his IGG numbers are in about 2 weeks.
His last infusion went very well no side effects and only took 1 hour 23 minutes. The infusion prior to that one May 29, he had horrible migrains that started on Monday around 5 pm. I kinda had a feeling he was going to get one because we didn't push him to drink on Saturday like we normally do. His Migrain was awful nausea, sensitivity to light and of course the headache part.
I gave him some Tylenol and he passed out on the couch. I woke him up 2 hours later to see if he wanted any dinner and to get him to drink. His head felt better but of course about 3.5 hours later the headache was coming back. He woke up Tuesday with a headache but not a migrain. He had a slight headache for the rest of Tuesday but by Wednesday it was gone! This infusion for some reason took 2 hours and 3 minutes to complete.
We are packing up and leave tomorrow for the IDF convention in Orlando. I know we are going to get a lot of information and Jacob is going to meet a lot of kids that goes through the same stuff as him.
I will update his current IGG levels when we get them.
His last infusion went very well no side effects and only took 1 hour 23 minutes. The infusion prior to that one May 29, he had horrible migrains that started on Monday around 5 pm. I kinda had a feeling he was going to get one because we didn't push him to drink on Saturday like we normally do. His Migrain was awful nausea, sensitivity to light and of course the headache part.
I gave him some Tylenol and he passed out on the couch. I woke him up 2 hours later to see if he wanted any dinner and to get him to drink. His head felt better but of course about 3.5 hours later the headache was coming back. He woke up Tuesday with a headache but not a migrain. He had a slight headache for the rest of Tuesday but by Wednesday it was gone! This infusion for some reason took 2 hours and 3 minutes to complete.
We are packing up and leave tomorrow for the IDF convention in Orlando. I know we are going to get a lot of information and Jacob is going to meet a lot of kids that goes through the same stuff as him.
I will update his current IGG levels when we get them.
Tuesday, May 5, 2009
2008 IG Levels
This year our levels dropped. I will indicate the levels below the effective range to fight infections in blue.
IGG Serum 634 (Range 308-945)
IGG Serum 634 (Range 308-945)
- Subclass 1 406 (Range 592-1723)
- Subclass 2 97 (Range 2.0-112)
- Subclass 3 46 (Range 10-122)
- Subclass 4 6.7 (Range 61-345)
IGG Type B .22 (Range 1.0)
IGG Streptococcus Serotypes: Effective range for ALL serotypes 2.0 The <0.2 means there was not enough antibodies to register a total.
- Type 9 (9N) <0.2
- Type 8 0.6
- Type 68 (9V) 0.5
- Type 56 (18C) 0.5
- Type 51 (7F) 0.2
- Type 5 0.3
- Type 4 1.5
- Type 3 <0.2
- Type 26 (6B) 1.0
- Type 23 (23F) 0.6
- Type 19 (19) 7.3
- Type 14 0.5
- Type 12 (12F) <0.2
- Type 1 <0.2
IGA 58 (Range 33-235
IGM 40 (Range 36-314)
2006 IG Levels
We received the Pneumovax in 2006 to see hom his body responded the IGG boost. This test was taken exactly 6 weeks after the Pneumovax was administered. The numbers in itilacs & red are the previous years numbers.
Pneumococcal Antibody IGG
12 Sterotype Panel range for all 2.0
Pneumococcal Antibody IGG
12 Sterotype Panel range for all 2.0
- Type 1 3.1 1.7
- Type 3 3.5 .06
- Type 4 >10.4 2.3
- Type 26 (6B) 25.8 1.2
- Type 8 >9.2 0.5
- Type 9 (9N) 2.6 0.5
- Type 12 (12F) 0.7 1.3
- Type 14 12.2 2.3
- Type 19 (19F) >23.2 7.5
- Type 23 (23F) 27.9 1.6
- Type 51 (7F) 4.3 1.8
- Type 56 (18C) 16.7 1.8
IGA Serum 40 52 (Range 24-121)
IGA Subclasses
- IGA1 33 (Range 46-378)
- IGA2 7 (Range 13-91)
2005 IG Levels
2005
IGG Serum 691 (Range 533-1078)
IGG Subclasses
Pneumococcal Antibody IGG
12 Sterotype Panel (Range for ALL sterotypes 2.0)
IGG Serum 691 (Range 533-1078)
IGG Subclasses
- IGG 1 492 (Range 315-1100)
- IGG 2 79 (Range 35-285)
- IGG 3 60 (Range 11-66)
- IGG 4 5.9 (Range 1.0-120)
Pneumococcal Antibody IGG
12 Sterotype Panel (Range for ALL sterotypes 2.0)
- Type 1 1.7
- Type 3 .06
- Type 4 2.3
- Type 26 (6B) 1.2
- Type 8 0.5
- Type 9 (9N) 0.5
- Type 12 (12F) 1.3
- Type 14 2.3
- Type 19 (19F) 7.5
- Type 23 (23F) 1.6
- Type 51 (7F) 1.8
- Type 56 (18C) 1.8
IGA Serum 52 (Range 24-121)
IGE Serum 9 (Range 93 or less)
Monday, May 4, 2009
May 4, 2009
We have finished our full course of antibiotics so now it's a waiting game to see how long we can get in between infections. The infusions are going well and his body is tolerating them VERY well. We still need to work on his mental stress from "the sharp needle". Once the needle is in he is fine. He still infuses 16ML of Vivaglobin every Friday. We are doing our best to avoid this "dreaded" N1H1 Flu. Many of the schools around us have closed due to the flu but so far we are in the clear.
He recently participated in a Karate competition, he place third in the sparring . His other extracurricular activities for the week were canceled due the N1H1 Flu.
We are gearing up for the IDF Convention in Orlando. For myself and my husband this is going to great learning experience. For my little guy its going to be an opportunity to go see Mickey Mouse. He also will get to meet other kids that share the same story as him. Hopefully this will help him realize he is not alone. We are in the process of getting him set-up with a pediatric counsler that specializes in children with chronic conditions.
Next month he gets his blood drawn to see where his IGG levels are and to see if his Vivaglobin dosing needs to adjusted.
He recently participated in a Karate competition, he place third in the sparring . His other extracurricular activities for the week were canceled due the N1H1 Flu.
We are gearing up for the IDF Convention in Orlando. For myself and my husband this is going to great learning experience. For my little guy its going to be an opportunity to go see Mickey Mouse. He also will get to meet other kids that share the same story as him. Hopefully this will help him realize he is not alone. We are in the process of getting him set-up with a pediatric counsler that specializes in children with chronic conditions.
Next month he gets his blood drawn to see where his IGG levels are and to see if his Vivaglobin dosing needs to adjusted.
Wednesday, April 15, 2009
April 15 2009 -starting a new antibiotic (not new for the first time taking it)
On Monday we had to start a 21 day supply of Omincef given 2x daily. We have to take 21 days because he has built up such a resistance to antibiotics standard amounts no longer work. Once we finish our 21 day supply we will have to go back to the Dr. for an X-ray and if there are still signs of an infection then we are back on another 21 day supply. Jacob hasn't been on antibiotics for 3 weeks and this is AMAZING for us.
Our current medications are:
Xopenex (nebulized)
Pulmicort (nebulized)
Astalin
Nasonex
Zrytec
singulair
Omincef
and nasal wash
On Friday 4/17/09 we will do our weekly infusion of Vivaglobin.
He has tolerated the transfusions very well. He has very few side effects. The one thing we did learn early on is (1) don't premedicate with Motrin only use Tylenol (Motrin gave his severe headaches) (2) FLUID...FLUID...FLUID it takes 48 hours for your body to adsorb the Vivaglobin the more you drink the less likely to get headaches and abdominal cramps.
He is living the life of any regular 5 year old boy. He is in school, plays soccer and is an orange belt in Karate.
Our current medications are:
Xopenex (nebulized)
Pulmicort (nebulized)
Astalin
Nasonex
Zrytec
singulair
Omincef
and nasal wash
On Friday 4/17/09 we will do our weekly infusion of Vivaglobin.
He has tolerated the transfusions very well. He has very few side effects. The one thing we did learn early on is (1) don't premedicate with Motrin only use Tylenol (Motrin gave his severe headaches) (2) FLUID...FLUID...FLUID it takes 48 hours for your body to adsorb the Vivaglobin the more you drink the less likely to get headaches and abdominal cramps.
He is living the life of any regular 5 year old boy. He is in school, plays soccer and is an orange belt in Karate.
Our journey with CVID
My son Jacob has been diagnosed with CVID. This has been a difficult journey in his 5 years of life. He has currently started (8 weeks ago to be exact) SCIG, Sub-q. He transfuses 16ML of Vivaglobin every Friday. His transfusion takes around 1.5-2 hours through 1 site.
My goal for this blog is to help create a level of awareness and to document our journey. The first thing I did when Jacob got diagnosed was scour the internet for anything I could find from someone living the experience. I wanted real life experience not necessarily medical advice.
I want to post an information sheet I have put together from many different resources to help people understand CVID and what some of its signs and symptoms are.
Primary Immune Deficiency
CVID
CVID (Common Variable Immune Deficiency) is a disorder characterized by low levels of antibodies and an increased susceptibility to infections. CVID is the most common immunodeficiency, hence, the word common. However, CVID is registered with the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that CVID affects less than 200,000 people in the US population. The clinical signs and symptoms also may vary from severe to mild. Frequent and unusual infections may first occur during early childhood, adolescence or adult life. In the majority of patients, the diagnosis is not made until the 3rd or 4th decade of life. However, about 20% of the patients have symptoms of disease or are found to be immunodeficient under the age of 16.
The cause of CVID is unknown. In some cases, more than one individual in a family may be affected, while in other cases this is no not the case. There is a decrease in the number of immunoglobulins (antibodies) in the affected person. Immunoglobulins are produced by the body and are necessary in fighting infections.
The following are the most common symptoms of CVID. However, each person may experience symptoms differently.
Recurrent infections that can affect the ears, sinuses, and lungs (the more these infections occur, the greater the risk of scarring and permanent damage to the lungs and breathing tubes) these infections respond poorly to antibiotic treatment
inflammation in the joints of the knees, ankles, elbows, or wrists
stomach and bowel disorders
increased risk of developing cancer
poor titer levels in response to vaccination
Other symptoms of CVID include:
chronic swelling of lymph glands
enlarged spleen
pernicious anemia
tiredness
bacterial overgrowth of the intestine
Primary Immune Disease can be easily diagnosed by blood test ordered by an Allergy, Asthma & Immunologist. You can also request blood test be done on a newborn in the hospital.
The well know case of Immunodeficiency Disease is “The Bubble Boy Disease”. Medical treatment has improved that patients no longer live their life in a bubble. Patients can now receive several different treatment options. Treatment usually consists of immunoglobulin therapy, which is an infusion of human antibodies harvested from plasma donations. This is not a cure, but it strengthens immunity by ensuring the patient has “normal” levels of antibodies, which helps to prevent recurrent infections.
Intravenous immunoglobulin (IVIG) done in a hospital setting, usually done every 3-4 weeks and takes 8 hours to infuse
subcutaneous immunoglobulin (SCIG) done at home, done every week and takes 2-8 hours to infuse depending on how many sites (needles) are used
intramuscular immunoglobulin (IMIG) not a popular treatment method, less effective and painful
http://www.primaryimmune.org/
http://www.jmfworld.org/
My goal for this blog is to help create a level of awareness and to document our journey. The first thing I did when Jacob got diagnosed was scour the internet for anything I could find from someone living the experience. I wanted real life experience not necessarily medical advice.
I want to post an information sheet I have put together from many different resources to help people understand CVID and what some of its signs and symptoms are.
Primary Immune Deficiency
CVID
CVID (Common Variable Immune Deficiency) is a disorder characterized by low levels of antibodies and an increased susceptibility to infections. CVID is the most common immunodeficiency, hence, the word common. However, CVID is registered with the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that CVID affects less than 200,000 people in the US population. The clinical signs and symptoms also may vary from severe to mild. Frequent and unusual infections may first occur during early childhood, adolescence or adult life. In the majority of patients, the diagnosis is not made until the 3rd or 4th decade of life. However, about 20% of the patients have symptoms of disease or are found to be immunodeficient under the age of 16.
The cause of CVID is unknown. In some cases, more than one individual in a family may be affected, while in other cases this is no not the case. There is a decrease in the number of immunoglobulins (antibodies) in the affected person. Immunoglobulins are produced by the body and are necessary in fighting infections.
The following are the most common symptoms of CVID. However, each person may experience symptoms differently.
Recurrent infections that can affect the ears, sinuses, and lungs (the more these infections occur, the greater the risk of scarring and permanent damage to the lungs and breathing tubes) these infections respond poorly to antibiotic treatment
inflammation in the joints of the knees, ankles, elbows, or wrists
stomach and bowel disorders
increased risk of developing cancer
poor titer levels in response to vaccination
Other symptoms of CVID include:
chronic swelling of lymph glands
enlarged spleen
pernicious anemia
tiredness
bacterial overgrowth of the intestine
Primary Immune Disease can be easily diagnosed by blood test ordered by an Allergy, Asthma & Immunologist. You can also request blood test be done on a newborn in the hospital.
The well know case of Immunodeficiency Disease is “The Bubble Boy Disease”. Medical treatment has improved that patients no longer live their life in a bubble. Patients can now receive several different treatment options. Treatment usually consists of immunoglobulin therapy, which is an infusion of human antibodies harvested from plasma donations. This is not a cure, but it strengthens immunity by ensuring the patient has “normal” levels of antibodies, which helps to prevent recurrent infections.
Intravenous immunoglobulin (IVIG) done in a hospital setting, usually done every 3-4 weeks and takes 8 hours to infuse
subcutaneous immunoglobulin (SCIG) done at home, done every week and takes 2-8 hours to infuse depending on how many sites (needles) are used
intramuscular immunoglobulin (IMIG) not a popular treatment method, less effective and painful
http://www.primaryimmune.org/
http://www.jmfworld.org/
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