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Old 01-03-2011, 05:48 PM   #1
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Join Date: Jan 2011
Location: Pennsylvania
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triplets4me HB User
CVID -11 year old son 1st IVIG tomorrow

Hi,

We are taking my 11year old son to get his first IVIG tomorrow morning. He was diagnosed with CVID 2 days before Christmas. His levels are 227 for IgG and basically 0 for IgA, IgE and IgM. He had several bouts of pneumonia 2 years ago and in the past 6 months has been dealing with constant coughing and sinus infections. We are grateful to finally have a diagnosis, but really nervous about what is to come.

Does the IVIG help at all with non-existent IgA? I'm really worried about him continuing to have issues with sinus infections and pneumonia.

Also, any thoughts on what we could reasonably ask his school to include in an IHP (individual health plan)? I spoke with the nurse and principal today and they are very receptive to help in any way they can.

Thanks so much for your help. I'm desperate to connect with others who understand this condition and can relate to what we are dealing with. Anyone we've told has never heard of it which a very isolating feeling.

Thanks in advance!!

 
Old 01-04-2011, 01:42 AM   #2
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Join Date: Nov 2009
Location: Beachwood
Posts: 23
markincleveland HB User
Re: CVID -11 year old son 1st IVIG tomorrow

I've been on IVig for over 25 years and have teenagers with CVID.

First question, there is no treatment for IgA deficiency. It is far more common than IgG deficiency, but none of the products have enough IgA to improve it. Many people with only IgA deficiency do well with no therapy at all.

Regarding an IHP, to be honest I've never heard of one. To my knowledge it has no legal standing under the Federal Law.

Do you mean an IEP? Our kids qualify for them under the other health criteria. I recommend them. A kid does not have to be educationally behind for challenged to qualify.

I would highly recommend you contract the Immune Deficiency Foundation. They have a very active forum and a special section for parents of kids with a primary immune disease. They also have a annual meeting that draws well over 1000 people and have kids programs so kids can learn about their condition and interact with other kids who are similarly effected. They also publish many useful books; a guide for school, a book about the immune system for kids and an excellent patient guide. They are all free, just call and ask for them.

You'll need to google to get the website

Good luck, the diagnosis is far from the end of the world. In the latest research published by the IDF, over 60% of PIDD patients rated their health as excellent or very good. The good news for you is that your kidlet was diagnosed early enough that he hasn't suffered any long term side effects.

My kids have done very well with the condition. My daughter attends an Ivy League university and my son was the president of his college student body last year.

Philadelphia has two of the best physicians in the world who specialize in primary immune diseases. They are at CHOP. I'll be glad to share their names if you want.

Lastly, I highly recommend you look into getting your kids infusions at home. It is far more convenient and less stressful. You will need to do the first few in an infusion center, but after those you doc should allow you to get them at home. For one, they are at least 75% less expensive, at least in our experience.

Good luck - feel free to contact me if you need more information.

Quote:
Originally Posted by triplets4me View Post
Hi,

We are taking my 11year old son to get his first IVIG tomorrow morning. He was diagnosed with CVID 2 days before Christmas. His levels are 227 for IgG and basically 0 for IgA, IgE and IgM. He had several bouts of pneumonia 2 years ago and in the past 6 months has been dealing with constant coughing and sinus infections. We are grateful to finally have a diagnosis, but really nervous about what is to come.

Does the IVIG help at all with non-existent IgA? I'm really worried about him continuing to have issues with sinus infections and pneumonia.

Also, any thoughts on what we could reasonably ask his school to include in an IHP (individual health plan)? I spoke with the nurse and principal today and they are very receptive to help in any way they can.

Thanks so much for your help. I'm desperate to connect with others who understand this condition and can relate to what we are dealing with. Anyone we've told has never heard of it which a very isolating feeling.

Thanks in advance!!

Last edited by markincleveland; 01-04-2011 at 01:47 AM. Reason: link not published

 
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Old 01-04-2011, 10:20 PM   #3
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Join Date: Mar 2009
Location: Bakersfield, CA, USA
Posts: 98
kelli1b HB Userkelli1b HB User
Re: CVID -11 year old son 1st IVIG tomorrow

Quote:
Originally Posted by triplets4me View Post
Hi,

We are taking my 11year old son to get his first IVIG tomorrow morning. He was diagnosed with CVID 2 days before Christmas. His levels are 227 for IgG and basically 0 for IgA, IgE and IgM. He had several bouts of pneumonia 2 years ago and in the past 6 months has been dealing with constant coughing and sinus infections. We are grateful to finally have a diagnosis, but really nervous about what is to come.

Does the IVIG help at all with non-existent IgA? I'm really worried about him continuing to have issues with sinus infections and pneumonia.

Also, any thoughts on what we could reasonably ask his school to include in an IHP (individual health plan)? I spoke with the nurse and principal today and they are very receptive to help in any way they can.

Thanks so much for your help. I'm desperate to connect with others who understand this condition and can relate to what we are dealing with. Anyone we've told has never heard of it which a very isolating feeling.

Thanks in advance!!
Hi there! First, Mark gave you some excellent advice. I would think it would be greatly recommended to get your child an IEP. Likely he will not feel well for at least a day after the infusions and, if he is on a 4 week infusion schedule he may suffer fatigue and infections during the 4th week because IVIG has a 3 week half life. That means he is at his lowest on the 4th week. He may miss school or just not be absorbing while there because he is missing. I'm sure if you google IEP for illnesses you can get some suggestions (send homework packets home, give extra time for tests, dark quiet place to take a rest if needed, extra time for homework, just some ideas).

Also, another option is SCIG (subcutaneous Immune Globulin). Its little needles you stick in yourself, tummy, thighs, etc. Very NON invasive. You do it once a week in your own home and in a couple hours (versus 8 hours for me) you are done. Very minimal side effects compared to IVIG.

If he starts not feeling well during infusion, feel free to ask the nurses to slow down or even take a break if necessary. Hydrate well the day before (I use smart water) and have plenty of gatorade on hand for after. Helps really good with the headaches.

Lastly, YOU ARE NOT ALONE! We have a wonderful CVID support group. Feel free to pm me and I can give you the info. Good luck, deep breath...getting the diagnosis is 90% of the battle. You saved you child years of illness and damage that is irreversible.

 
Old 01-12-2011, 04:32 PM   #4
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Join Date: Jan 2011
Location: Pennsylvania
Posts: 3
triplets4me HB User
Re: CVID -11 year old son 1st IVIG tomorrow

Hi mark,

Thank you so much for your words of encouragement...it really helps hearing positive stories of people living with cvid. You and your kids are really living well! You have to be so proud of them.

My son's first ivig went extremely well. The iv lasted only 5 hours...which wasn't bad when we were expecting 6-8 hours. Also, he had basically no symptoms...just a slight headache. We are very encouraged!

Thanks for writing....I appreciate it!

 
Old 01-12-2011, 04:48 PM   #5
Newbie
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Join Date: Jan 2011
Location: Pennsylvania
Posts: 3
triplets4me HB User
Re: CVID -11 year old son 1st IVIG tomorrow

Hi kelli.....

Thanks very much for you note. It is so nice to hear from people that " get it"!

My son already has an iep for other unrelated issues....so we could amend this document if we need to. His school has been very supportive and anxious to help in any way. So far so good.

The ivig went great....so I'm thinking that we'll stick with that for now especially since the nurses said that the third treatment will go more quickly. We might be able to get it down to 3-4 hours. We'll just have to see how far his levels dip in between.

How painful is the subq? It seems like it would be uncomfortable...does your skin get irritated? It's great to have the option to switch if we need/want to.

Also, he just finished antibiotics on friday and he is starting to cough today. Nothing horrible yet....but i'm watching him like a hawk! The poor boy probably feels like he is under a microscope.

Thanks so much for listening!



Quote:
Originally Posted by kelli1b View Post
Hi there! First, Mark gave you some excellent advice. I would think it would be greatly recommended to get your child an IEP. Likely he will not feel well for at least a day after the infusions and, if he is on a 4 week infusion schedule he may suffer fatigue and infections during the 4th week because IVIG has a 3 week half life. That means he is at his lowest on the 4th week. He may miss school or just not be absorbing while there because he is missing. I'm sure if you google IEP for illnesses you can get some suggestions (send homework packets home, give extra time for tests, dark quiet place to take a rest if needed, extra time for homework, just some ideas).

Also, another option is SCIG (subcutaneous Immune Globulin). Its little needles you stick in yourself, tummy, thighs, etc. Very NON invasive. You do it once a week in your own home and in a couple hours (versus 8 hours for me) you are done. Very minimal side effects compared to IVIG.

If he starts not feeling well during infusion, feel free to ask the nurses to slow down or even take a break if necessary. Hydrate well the day before (I use smart water) and have plenty of gatorade on hand for after. Helps really good with the headaches.

Lastly, YOU ARE NOT ALONE! We have a wonderful CVID support group. Feel free to pm me and I can give you the info. Good luck, deep breath...getting the diagnosis is 90% of the battle. You saved you child years of illness and damage that is irreversible.

 
Old 01-12-2011, 09:17 PM   #6
Inactive
(female)
 
Join Date: Mar 2009
Location: Bakersfield, CA, USA
Posts: 98
kelli1b HB Userkelli1b HB User
Re: CVID -11 year old son 1st IVIG tomorrow

Hi there! So good to hear that the IVIG's are going well. Hopefully they won't push him too quickly (speed wise).

Let me tell you subq is not painful at ALL. The needles are itty bitty. I would be happy to send you a pic if you like since I do mine every friday He would be in his own home while doing them, he can lay around watch tv, play video games, be on the computer, way less constricting than having an IV in your vein. Also, for me, my levels doubled which means less infections. You have complete control. There are great videos on the manufacturers websites showing the subq. I would watch a quick video or two.

Yes please do watch him. CVID can be progressive - the more infections the more damage the more susceptible.

Feel free to private message me if you would like pics of the needles. We also have a fabulous support group too if you are interested. We even have some parents of cvid kids on there. Good luck. WE are in the same boat so we do "get" it I'm actually getting ready to go to a lung hospital because of the cvid blech

 
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