Jump to content
ACN Latitudes Forums

IVIG and Immune Deficiencies


cab40

Recommended Posts

My son has the same problem with no protection for strep pneumoniae. He had pneumovax vaccine and his protection one moth later was 100%. 4 months later his protection dropped to 50%. So he was diagnosed with an immune deficiency. he will get 30. Grams of IVIG over 4 hrs every 4 weeks indefinitely. In Sept 2010 he had high dose 1.5 kg over 2 days and did ok the first month and then developed a severe case of mono that lasted 10 weeks even though he has mono 12 yrs before. He is 28 and was diagnosed with PANDAS at age 14. He has not responded to antibiotic, but a six day prednisone taper helped. So if I were you I would not do the HD IVIG because I do not think it helps the immune problem. it is a complex issue and I still have many questions about what immune deficiency disease he has since there are about 20 different sub categories. Also I believe he may need this for the rest of his life. he was getting all kinds of staph infection and warts which is a virus. I hope this information helps.

Link to comment
Share on other sites

My ds14 is similar to your son in that he has IgG deficiencies to 10/14 s. pneumoniae serotypes. He has also developed IgA deficiency in the last year. We are doing HD IVIG (1.5g) every 8 weeks with Dr. B. It works well. He had a very bad exacerbation with his first IVIG about 8 months ago - I think this was because he was 13 years old and had PANDAS most of his life due to chronic, unrelenting sinusitis. Since the first IVIG, he has shown improvement with each IVIG. He has not had a single sinus infection since the first IVIG, so I know it is doing something to keep him healthy. Now that we are no longer dealing with tics and constant OCD, we are able to do cognitive behavioral therapy and nutritional interventions to help him develop good behaviors and keep him healthy.

 

If I had anything to do over I would have started IVIG sooner.

 

I do not know how long he will be receiving IVIG. I am going to do it for at least 1 year and then the we will decide if we can start cutting back.

 

We are very fortunate because insurance has covered this. I had to change insurance plans - (which meant waiting 8 months for open enrollment) but it was worth it. We could not afford this otherwise.

Link to comment
Share on other sites

My ds14 is similar to your son in that he has IgG deficiencies to 10/14 s. pneumoniae serotypes. He has also developed IgA deficiency in the last year. We are doing HD IVIG (1.5g) every 8 weeks with Dr. B. It works well. He had a very bad exacerbation with his first IVIG about 8 months ago - I think this was because he was 13 years old and had PANDAS most of his life due to chronic, unrelenting sinusitis. Since the first IVIG, he has shown improvement with each IVIG. He has not had a single sinus infection since the first IVIG, so I know it is doing something to keep him healthy. Now that we are no longer dealing with tics and constant OCD, we are able to do cognitive behavioral therapy and nutritional interventions to help him develop good behaviors and keep him healthy.

 

If I had anything to do over I would have started IVIG sooner.

 

I do not know how long he will be receiving IVIG. I am going to do it for at least 1 year and then the we will decide if we can start cutting back.

 

We are very fortunate because insurance has covered this. I had to change insurance plans - (which meant waiting 8 months for open enrollment) but it was worth it. We could not afford this otherwise.

Link to comment
Share on other sites

Did you do the prednisone taper before or after ivig? how long had your son had symptoms before trying steroid taper? did benefits sustain?

 

 

My son has the same problem with no protection for strep pneumoniae. He had pneumovax vaccine and his protection one moth later was 100%. 4 months later his protection dropped to 50%. So he was diagnosed with an immune deficiency. he will get 30. Grams of IVIG over 4 hrs every 4 weeks indefinitely. In Sept 2010 he had high dose 1.5 kg over 2 days and did ok the first month and then developed a severe case of mono that lasted 10 weeks even though he has mono 12 yrs before. He is 28 and was diagnosed with PANDAS at age 14. He has not responded to antibiotic, but a six day prednisone taper helped. So if I were you I would not do the HD IVIG because I do not think it helps the immune problem. it is a complex issue and I still have many questions about what immune deficiency disease he has since there are about 20 different sub categories. Also I believe he may need this for the rest of his life. he was getting all kinds of staph infection and warts which is a virus. I hope this information helps.

Link to comment
Share on other sites

Dr B takes insurance (if you can get there before it runs out).

 

I believe you might get a free flight from Angel wings (?) and free accommodations if there is a nearby Ronald McDonald House.

 

The other option is Tanya Murphy and All children's hospital in FL. There is a Ronald McDonald house within walking distance there.

 

Will your son be eligible for Medicaid?

 

Our state (NJ), I believe, has an insurance program for free for all uninsured kids- you have to enroll, though. Maybe your state has something like this.

 

I can imagine how scared you are- hang in there. Be persistent.

Link to comment
Share on other sites

Did you do the prednisone taper before or after ivig? how long had your son had symptoms before trying steroid taper? did benefits sustain?

 

 

My son has the same problem with no protection for strep pneumoniae. He had pneumovax vaccine and his protection one moth later was 100%. 4 months later his protection dropped to 50%. So he was diagnosed with an immune deficiency. he will get 30. Grams of IVIG over 4 hrs every 4 weeks indefinitely. In Sept 2010 he had high dose 1.5 kg over 2 days and did ok the first month and then developed a severe case of mono that lasted 10 weeks even though he has mono 12 yrs before. He is 28 and was diagnosed with PANDAS at age 14. He has not responded to antibiotic, but a six day prednisone taper helped. So if I were you I would not do the HD IVIG because I do not think it helps the immune problem. it is a complex issue and I still have many questions about what immune deficiency disease he has since there are about 20 different sub categories. Also I believe he may need this for the rest of his life. he was getting all kinds of staph infection and warts which is a virus. I hope this information helps.

Link to comment
Share on other sites

He had PANDAS for 12 yrs before a doctor tried prednisone taper. It was only 6 days taper and only lasted improvement for a few days and this was before the IVIG. IVIG helped for one month and then developed severe mono and just recently diagnosed with primary immune deficiency. Good luck with you children. I will let you know how my son does.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...