Anyone here have "high risk" kids?

iVillage Member
Registered: 04-17-2007
Anyone here have "high risk" kids?
30
Sun, 10-11-2009 - 12:26am

I've been lurking a little while and am wondering if and how many of you have kids who fall into the high risk category with regard to flu vaccinations.

Let me introduce myself, I'm Shannon and my DD Rowan is 12 months old. She is fully vaccinated on schedule. She has DiGeorge Syndrome which can cause immune deficiency. She had open heart surgery at 7 days old and has a hypoplastic thalmus but a normally functioning primary immune system. Due to issues DiGeorge kids can have with vaccine response she will not be getting any live virus vaccines.

So yes, my DD is getting the seasonal flu vaccine and the H1N1. DH and I will be getting them also. DD also gets Synagis, the RSV medication. Per her immunologist, we are on lockdown now. I can't take her to church, to Target, or anywhere there is a lot of people. The funny thing is that she is quite healthy. She has had one cold with one double ear infection the entire year. Unfortunately, that cold landed her in the ER for dehydration.

My plan before my DD was born was to delay and selectively vax. I had never had the flu shot before DD was born and probably wouldn't consider it for my DD if she were typical. But she's not. All of her specialists are recommending the vaccines so we're doing it.

Anyway, I'm just wondering about everyone else here..any kids with special medical needs that put them in the high risk category? Thoughts?

signature
Lilypie Second Birthday tickers

broken heart
tube

signature

Pages

iVillage Member
Registered: 06-16-2009
Sun, 10-11-2009 - 10:36pm
Hi, I am sorry your have been put in the position you are in.

Photobucket

iVillage Member
Registered: 07-17-2005
Mon, 10-12-2009 - 12:24am

I'm sorry to hear that your child is high risk. I first read your post and wondered why a doctor would risk vaccination of diseases that are almost unheard of in this country (Polio, Diphtheria, Tetanus, Hep B (not likely your child will get it), Mumps...) --- and your child has an IMMUNE SYSTEM disorder? That sounds whacked to me, but I'm no doctor and we all know the doctor's bibles (written by the pharmaceutical companies) are the gospel . I'm sure your doctor knows what's best but it's hard for me to read it, so I do apologize in advance, but I couldn't just say nothing. Some of us here strongly believe that vaccinating damages the immune system and the central nervous system. I'm one of them, but again, we are not doctors so what do we know...

I know its tough to have to quarantine yourselves but if my child was immune compromised I would be careful of what I might carry home with me. I would likely stay home a lot. I would like to suggest that you study up on vaccine shedding. They can say all day long that it doesn't occur but anecdotal evidence says otherwise. It would be nice to have scientific studies regarding every detail of vaccination but no one has an interest in proving the negative aspects of vaccines, they sure have an interest in proving the positives though. Funny thing is, if you pay attention to how those *positives* are worded, it's often a bunch of legal jargon that really doesn't prove a thing.

I wish the best of luck to you and welcome to the board! There's also a board for vaccine support here at IV and you may find one especially for parents of high risk kids too.

iVillage Member
Registered: 06-16-2009
Mon, 10-12-2009 - 1:28pm

I did not mean to imply that I thought your

Photobucket

iVillage Member
Registered: 07-17-2005
Mon, 10-12-2009 - 4:15pm

Oh I know what ya mean!

Did you cringe when you read that the baby is fully vaccinated and on schedule, even though she has an immune system disorder? I just want to stand in front of the doctors and demand answers! WHY? I mean, yes, I can understand that the flu would certainly be harmful...but so is the vaccine. What I can't understand is why they don't weigh the chances of the child getting Polio, Diphtheria Rubella and Mumps and consider it not worth the vaccine risk - at least with those vaccines.

I feel terrible for the OP, regardless.

iVillage Member
Registered: 04-09-2008
Mon, 10-12-2009 - 10:32pm

I think that's an awesome approach! As you know, I don't care what a person does one way or the other, and initally based my decision upon personal experiences (we all do what we do given on any circumstance). I felt much better about my position after reading the VSM. Full of studies! Also full of emotion (relevant, but not scientific) and full of history. All relevant however as a whole, IMPO.


Either way - a person needs to be educated. So I'm glad you're proceding with caution, either way - that's a good thing.

Photobucket Photobucket

Rands

iVillage Member
Registered: 06-16-2009
Tue, 10-13-2009 - 1:08am

Did you cringe when you read that the baby is fully vaccinated and on schedule, even though she has an immune system disorder?


Absolutely, I actually felt a little sick to my stomach when I read it.

Photobucket

iVillage Member
Registered: 04-17-2007
Wed, 10-14-2009 - 1:28am

Hi Ladies! I'm still reading around but want to give more info about my DD's diagnosis to possibly make the situation a little more clear.

My DD was diagnosed with four heart defects when she was 24 hours old. One of these defects, Interrupted Aortic Arch, is associated with DiGeorge about 50% of the time so they did genetic testing. Before the test results came back my DD had surgery and her surgeon noticed that her thymus is small, which is common with the syndrome. A few days later, we got the positive diagnosis from the immunologist. Now, DiGeorge is caused by a deletion on chromosome 22. This deletion is associated with over 140 possible findings and has had multiple syndrome names, including DiGeorge, VeloCardioFacial Syndrome, and a couple others. The "DiGeorge" symptoms are heart defects, immune deficiency due to an absent or reduced thymus, and hypocalcemia due to problems in the parathyroid. My DD has the heart defect, no demonstrable immune deficiency, and a normally functioning parathyroid. So she is considered to have "partial DiGeorge".

Our immunologist has done extensive bloodwork and has determined so far that my DD's immune system is normal. However, because of her DiGeorge diagnosis, my DD will not get live virus vaccines. There have been studies of kids with the diagnosis who got the live virus vaccines by accident and those studies seem to indicate they are safe. However, recently there was a paper to suggest otherwise so the immunologist has decided against it. Truly immune compromised kids do not get vaccines as a rule.

My DD is primarily considered a heart baby. Because of this, doctors are PARANOID and very cautious about how they deal with her. The reason for the flu vaccines and the RSV shot is because of her heart condition. If she were immune compromised she would already be in the hospital. Or on prophylactic antibiotics to protect her lungs.

I am reading the websites that are on the site. The reason I posted here was to get a different perspective. Am I likely to err on the side of the immunologist, cardiologist, heart surgeon, etc? Probably. I got the speech about the importance of vaccinating while my DD was in the PICU on a ventilator. I fully admit to vaccinating on schedule because the doctors told me to. I'm not particularly defensive about my choices. Promise!

Any info or thoughts are welcome!




Edited 10/14/2009 2:01 am ET by darshana_78
signature
iVillage Member
Registered: 06-16-2009
Wed, 10-14-2009 - 2:14am

If your child is immuno-typical my advice is to research the vaccines as though she is healthy.

Photobucket

iVillage Member
Registered: 04-17-2007
Sat, 10-17-2009 - 12:44am

Thank you for your advice! We are officially postponing vaccines now. We met with a new pediatrician for my DD's one year check up and she was fine with delaying them. It's a good thing too because my DD's vaccine records are a mess! I'm so mad! It's a long story but according to the state vax registry, she received vaccinations I am sure she did not receive. Including the rotovirus vaccine. Supposedly when we were there for her hospital follow-up (my DD was released right at 6wks old) they managed to give her a full round of shots and an oral vaccine that neither myself or my DH noticed. Oh and since my DD couldn't take anything orally at the time, we would have had to put the LIVE VIRUS VACCINE!!!! through her feeding tube ourselves. I don't think so. Seriously, I'm going to strangle the old ped.

But the new ped is awesome! We will revisit the vaccine issue again after flu/RSV season and once her most recent immune work up comes back. Then we go from there.

Thank you again for your thoughts and advice!




Edited 10/17/2009 1:07 am ET by darshana_78
signature
iVillage Member
Registered: 07-17-2005
Sun, 10-18-2009 - 3:26pm

He (Neil Z Miller) is coming out with a new edition of the VSM. I told him on Facebook that I would kindly give my old one to a new Mom but he said:

"You may want to keep the old one as a collector's edition because it has some Congressional Hearings that were not reprinted in the new, updated version. The new version has Tables on Aluminum, Mercury, new studies, additional charts, and more. However, I knocked the page count down so that it isn't so intimidating to new moms and dads."

I'm making room on my bookshelf for both! :)

Pages