Jump to content
ACN Latitudes Forums

my immuno compromised son


Recommended Posts

Ok, here are some things about my poor sick son- DS9. I hope people will weigh in.

 

He presents as a strep carrier, asymptomatic but there's more.

 

He is pretty much asymptomatic to any illness. His immune system refuses over and over to take on illnesses physically. It sends all the illness to his brain. The brain has no protection from viruses, infections, etc.

 

For example, we just did a steroid burst. We are finishing up today the five day course. Over the first three days we did not see any change, not for the better or worse. The objective was to stop the endless exacerbation.

 

With the burst, my son's immune system of course became more compromised. He is already low igg.

Around the end of the third day, sniffles began to appear.

 

On the fourth day, he had a rough day at school, ripping up his shirt and crumpling up paper.

He came home and was surprisingly untemperamental. In fact, he read aloud to his mother for a long stretch, something he had not done for a month or more, and went off to bed by himself without a squawk. While he was somewhat demanding during this time, he was not abrasive or mean. He was quite civil and nice to his little brother. Tics were quieter. He did not of course notice that this change had occurred.

 

In the night, all heck broke loose. He woke up often, complaining about being congested, that he had a cold, it wasn't fair, he couldn't breathe DO SOMETHING!!! This morning, all his bad symptoms reared up again with profanity, yelling, etc.

 

The congestion, which could be a cold or allergy- he is extremely allergic- lost. The brain invasion won. Last evening, his immune system started to fight the cold/allergy. In the night, it gave up and attacked his brain again, as it does every day.

 

I have noticed when my son DOES get a stomach bug or some sort of ailment that stops him in his tracks, all his symptoms disappear. It is not unlike the study that was done showing when autistic children get fevers, their autistic behavior ceases.

 

His brain appears to be trained to be the main stopgap against disease or infection of any form.

 

So it appears that we must race to monthly IVIG as soon as we can to begin straightening out the immune system issues. BTW, we presented my son's teachers with PANDAS information from here and they read it and told us, "Oh, does he EVER fit the profile!" Duh.

 

Michael

Link to comment
Share on other sites

Hi Michael, thanks for sharing your story. It was very interesting to read how you articulate the "Brain Invasion" and it seemed to present such a clear picture of how this directly effects our kid's brains, my daughter included in that. May I ask (sorry if you already posted) how long your son has had this? I truly believe that if we fix the immune system and stop the infection our kids are going to get better. My daughter also had basically no symptoms when she had a sickness of any type, fever especially I remember. What doctor are you working with? We have seen good improvement since my daughter's been receiving ivig. I think it takes a long time to repair and heal, and the first step is to get those good antibodies into them.

Link to comment
Share on other sites

May I ask (sorry if you already posted) how long your son has had this?

WHO KNOWS REALLY? ABSOLUTELY CERTAIN SINCE LAST MAY

 

I truly believe that if we fix the immune system and stop the infection our kids are going to get better. My daughter also had basically no symptoms when she had a sickness of any type, fever especially I remember.

 

THANKS I AGREE, GOOD TO HEAR YOU ARE MAKING PROGRESS SINCE YOUR DD IS SIMILAR TYPE

 

What doctor are you working with?

 

KEN BOCK AND ROSARIO TRIFILETTI

 

We have seen good improvement since my daughter's been receiving ivig. I think it takes a long time to repair and heal, and the first step is to get those good antibodies into them.

 

YES, HAVE TO GET TONSILS/ADENOIDS OUT FIRST, THEN IVIG. WAITING FOR INSURANCE CO, SHOULD BE ANY DAY NOW

Link to comment
Share on other sites

Hi Michael,

I can ditto my son not really getting sick much and when he does it passes quickly, and he also seems to cease ticcing for the short duration of fever/virus, think we've discussed before. As far as immuno, we just had some immuno testing done with our immunologist/DAN doc and it looks like there are no deficiencies. I don't know if he did all the stuff you did, I hve to have someone interpret, but the doc said everything was normal, no deficiencies, subclass 4 was actually designated as 'high'.... :wacko:

 

what was your question again?....... :)

 

glad little guy is home. why are you getting tonsils out? we too, for apnea in two weeks.

 

-Faith

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...