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January 2015 Moms
southernyankeegirl
member
Pretty scared (potential autoimmune issue)
southernyankeegirl
member
I just had a meet-and-greet with a potential pediatrician (who is now definitely going to be our pick) and I'm kind of freaked out right now. Like really, really, really, really freaked out right now.
I mentioned off hand that my Dad's family has a history of autoimmune type issues (Lupus, Hashimotos, etc.) and that my brother in particular was born without a functioning immune system. This has always just been part of my story, and I don't remember the scary bits - just the happy ending (his immune system started functioning when he was 5 years old, and he now has a low-normal functioning immune system as a happy adult in his mid-20's). Mostly my thinking was that if my son has repeated illnesses, I want this looked into more than it would be for someone who doesn't have a family history. I wasn't really concerned.
Well, that was all the pediatrician needed - she started asking probing questions about my brother's issue, and I realized I knew very little. She threw out a few terms and diagnoses, and I was quickly saying, "I don't really remember, I was just a kid." She said, "Well, it sounds like SCIDS but it probably isn't because so few kids survived from that in the 80's..."
So I called my Mom...
Turns out my brother had SCIDS. He's one of only around 300 babies who were diagnosed with that condition in the late 1980's, and he's one of the 1-in-10 who survived. Yikes... I never really knew all that...
So it seems it may or may not be an X-linked chromosomal issue. And if it is, I have at least a 50% chance of being a carrier. And if I'm a carrier, my son has a 50/50 chance of inheriting this condition.
The prognosis is better now than it was when my brother was born, and there's ways to screen for it. But now I have to research this - I have to find out if I can be tested as a carrier (and if so, will insurance cover it? How expensive?) and then I have to find out if my son can be tested, how soon after birth, whether insurance will cover it, and how much we'll have to pay?
And then I will want to know what our first steps will be if he has it - it seems the most common early treatment (from my rudimentary initial internet research - damn you, Dr. Google!) is done within 3 months of birth for best results, and involves chemotherapy to kill off the baby's immune system (or what there is of it, anyway) and then a bone marrow or cord blood transplant. For best results, from a sibling, which there are none. So we'd be scrounging our families to find a donor, who would then have to travel a long way to come down here (assuming, of course, DH and I aren't matches - we each have only a 1-in-200 shot of being a match with a child). Or we'd have to hope that there was an anonymous donor in the system that would match our son.
I'm panicked, no kidding. Absolutely freaking out. I'm trying to get my head on straight for how I can best tackle this now, but I really just want to curl up in a ball and sob about how unfair it all is, that I don't want to have to worry about my newborn potentially going through chemotherapy and a bone marrow transplant.
Sorry for being such an AW about an issue that isn't even an issue yet, but I'm just really scared and I feel like I need to calm down before I tell DH all this because he's also going to be really scared. And I feel like it will be a big mess if we're both really scared together - I need a plan and more information before he gets home from work so I can tell him without really freaking him out.
I mentioned off hand that my Dad's family has a history of autoimmune type issues (Lupus, Hashimotos, etc.) and that my brother in particular was born without a functioning immune system. This has always just been part of my story, and I don't remember the scary bits - just the happy ending (his immune system started functioning when he was 5 years old, and he now has a low-normal functioning immune system as a happy adult in his mid-20's). Mostly my thinking was that if my son has repeated illnesses, I want this looked into more than it would be for someone who doesn't have a family history. I wasn't really concerned.
Well, that was all the pediatrician needed - she started asking probing questions about my brother's issue, and I realized I knew very little. She threw out a few terms and diagnoses, and I was quickly saying, "I don't really remember, I was just a kid." She said, "Well, it sounds like SCIDS but it probably isn't because so few kids survived from that in the 80's..."
So I called my Mom...
Turns out my brother had SCIDS. He's one of only around 300 babies who were diagnosed with that condition in the late 1980's, and he's one of the 1-in-10 who survived. Yikes... I never really knew all that...
So it seems it may or may not be an X-linked chromosomal issue. And if it is, I have at least a 50% chance of being a carrier. And if I'm a carrier, my son has a 50/50 chance of inheriting this condition.
The prognosis is better now than it was when my brother was born, and there's ways to screen for it. But now I have to research this - I have to find out if I can be tested as a carrier (and if so, will insurance cover it? How expensive?) and then I have to find out if my son can be tested, how soon after birth, whether insurance will cover it, and how much we'll have to pay?
And then I will want to know what our first steps will be if he has it - it seems the most common early treatment (from my rudimentary initial internet research - damn you, Dr. Google!) is done within 3 months of birth for best results, and involves chemotherapy to kill off the baby's immune system (or what there is of it, anyway) and then a bone marrow or cord blood transplant. For best results, from a sibling, which there are none. So we'd be scrounging our families to find a donor, who would then have to travel a long way to come down here (assuming, of course, DH and I aren't matches - we each have only a 1-in-200 shot of being a match with a child). Or we'd have to hope that there was an anonymous donor in the system that would match our son.
I'm panicked, no kidding. Absolutely freaking out. I'm trying to get my head on straight for how I can best tackle this now, but I really just want to curl up in a ball and sob about how unfair it all is, that I don't want to have to worry about my newborn potentially going through chemotherapy and a bone marrow transplant.
Sorry for being such an AW about an issue that isn't even an issue yet, but I'm just really scared and I feel like I need to calm down before I tell DH all this because he's also going to be really scared. And I feel like it will be a big mess if we're both really scared together - I need a plan and more information before he gets home from work so I can tell him without really freaking him out.
************************SIGGY WARNING***********************
Me: 29 DH: 32
Off birth control March 2012 - Actively trying Sept 2012-April 2014
Off birth control March 2012 - Actively trying Sept 2012-April 2014
Unexplained Infertility
BFP on May 5th after Follistim & IUI #3
BFP on May 5th after Follistim & IUI #3
Ryan Henry - born 1/10/15, 7 lb 5 oz, 20 1/4 inches
NTNP for a sibling starting March 2015
Waiting on cycle to resume while EBF
This discussion has been closed.
Re: Pretty scared (potential autoimmune issue)
If my son has this condition and is in a pediatrician's waiting room with an unimmunized child who has a vaccine-preventable condition, I'm going to be forced to key that parent's car. Because how DARE YOU!!!!!!!!!!!
Kids with SCIDS don't retain vaccines, and will contract any viruses or bacteria that they are exposed to because their bodies can't fight it off. So lucky ducks, those parents whose kids are strong enough to fight off chicken pox so they don't want to subject their poor babies to an extra vaccine - want to know what happened to my brother when I got the chicken pox as a child? He ended up getting admitted to an isolation unit in the pediatric center of one of the country's top children's hospitals preemptively for two weeks. Simply because I had gotten chicken pox as his sister. If he had actually caught the disease, it would have almost certainly been fatal.
Ya know what, just having fear of this condition makes me want to key anyone's car who doesn't immunize their child. Because I realize more how fully selfish that decision is to others who don't have a choice. HOW MOTHER F-ING DARE YOU put anyone else's child at risk like that?!
So yeah, you've been warned - any anti-vaxxers now aren't getting even delicate words from me...
Off birth control March 2012 - Actively trying Sept 2012-April 2014
BFP on May 5th after Follistim & IUI #3
It's typically about 2 months after birth that the child's own immune system has to take over, and so we have a teensy bit of time to test him as a newborn and then plan our attack if needed to confront this beast. But his own cord blood will be useless to him if he has the condition.
However, if he's healthy but a future child ends up with the condition, a sibling has a 1-in-4 chance of being a bone marrow match.
Off birth control March 2012 - Actively trying Sept 2012-April 2014
BFP on May 5th after Follistim & IUI #3
This is so much for you to be going through alone. Call the insurance company and get your answers about getting tested and the costs. Then tell your husband. That's all you can do for now. One step at a time! Hopefully you're not a carrier and you don't have to worry about the rest.
Here, have a donut on top of a cupcake!
I worked at a cancer institute for a bit, and dealt with bone marrow and stem cell transplants. We were able to send kits to any family member that wanted to be tested (either by mouth swab or a blood kit they could take to any lab) to see if they were a match so that the family member wouldn't have to travel all the way just to give a sample. I'm sure the same thing can be done for you guys, if needed, so don't worry about that part. We've seen lots of matches with extended family, so there's a bright spot for you there as well.
We're here for you!!!!
I'm so sorry that you're going through this right now! I'll be sending lots of good vibes and thoughts your way.
You're already leaps and bounds ahead of most in your situation. Doing the research and having plans in place is a huge, huge step. And it's great you found a pediatrician who you trust and is knowledgeable about the whole thing. IF you have to deal with it, (a big IF!) you'll be prepared!
The one bad thing about advancements is just this. They scare you to death. My DH's mom had a little girl with hypoplastic heart syndrome. As soon as we told our Dr.....more advanced tests and US's. His heart is fine! But of course they found all this other stuff in the meantime, a shortened humerus (we found out nothing), too much fluid in lateral ventricles in the brain.....scaring us to death. We've done the research and now are prepared in case the results turn out to be something. My point is that it may be nothing at all! They have to tell you the worst scenario just in case, but there's such a good chance that it's nothing and that your LO will be just fine! We'll all be sending thoughts and prayers your way that it is nothing. Hang in there.
TTC #1 5/13 BFP #3 5/2/14 DD born 1/19/15
NTNP #2 8/17 BFP 12/13/18 ED 8/21/19
The good news is that you found an awesome doctor that caught on to this. Hang in there and as you come up with questions, write them down. It is so easy to forget by the time you are sitting down with the doc.
Thinking of you!
and yeah, with the table-flipping rage on vaccines. totally justified.
BFP#1 EDD 04.20.2010, SUNSHINE baby boy born 03.31.2010
BFP#2 EDD 12.07.2014, natural mc 04.09.2014 at 5w3d
BFP#3 EDD 01.14.15, RAINBOW baby girl born 01.16.2015
jan'15 january siggy challenge: baby fails
DH is also bringing home a pizza because he doesn't think I want to cook tonight. A pizza on a stressful night is so much better than flowers!
And thank you all so much for your support. It's all pretty scary at the moment. Remember all the people who freaked about a 1-in-200 chance for Downs Syndrome with the NT scan a few months ago? Well, right now I'm facing a 25% chance that my son will have this condition, so 1-in-4. And this would mean certainly hospitalizations, blood transfusions, and potentially chemo and a bone marrow transplant for my newborn. I would sooooooo rather be facing a 1-in-4 chance of Downs Syndrome. (And why the ever loving HELL didn't my parents talk to me more about this before?! My Mom was under the wrong impression that both parents have to be carriers, so she thought it was a 'lighting won't strike twice' kind of thing. Except it's X-chromosome linked so if I am a carrier, my son has a 50% chance of having it.)
I keep trying to remind myself that still means 75% chance right now that he's fine. But it's really fucking petrifying.
Off birth control March 2012 - Actively trying Sept 2012-April 2014
BFP on May 5th after Follistim & IUI #3
Sending lots of good thoughts and hugs your way!
*********************************************************
I know how scary the what ifs can be with autoimmune issues. I've been periodically freakin out about passing on either my diabetes or Hashimotos to my LO. My only words of advice are to try and take things one day at a time.
You have taken all the right steps and that is all you can do right now. Try and be kind to yourself. And if you need to freak out for a bit you are more than allowed to do that to. Just try to not let it consume you too much.
Sending love and good juju!
BFP #1: 4/2/12 -- DD born 12/15/12. BFP #2: 4/1/14 -- CP. BFP #3: 4/28/14 -- EDD 1/10/15
Jan 15 NOV siggy challenge:
Off birth control March 2012 - Actively trying Sept 2012-April 2014
BFP on May 5th after Follistim & IUI #3
No, I still don't know the exact name of the test. My insurance clarified that genetic testing would be covered when it affected the care of the patient, meaning they'll cover it for LO but not to see if I am a carrier.
I don't think I want to know, because if I am a carrier then I know it's much more likely my baby has it. I would rather just wait and test him so I can keep convincing myself that I am not a carrier. I don't want to spend money just to worry more when there isn't anything more we can do besides test him when he's born.
Off birth control March 2012 - Actively trying Sept 2012-April 2014
BFP on May 5th after Follistim & IUI #3