Replies to This Discussion

Permalink Reply by stephanie eccles on January 24, 2013 at 2:59am

Hi Janet,

I don't know if I will be much help. I have SCD (SS) my mom says I was diagnosed at 6 months. So I don't know about my first episode and its different for everyone. But seeing that you have a boy please read up on the chance of priapism cause it is very painfully. and just be aware that joints are where they expect a lot of pain and babies will cry without relief while in pain. Ask your pediatrician about the vitamins and dietary needs that can help with decreasing or hopefully preventing them.

Good luck and God bless with your new addition. Trust your instincts as a mom but also let him live his life as normal as possible. Cause he has a disease that can be some what managed, the disease does not have him so don't let it have you either ok.

:o)

• ▶ Reply

Permalink Reply by Janet O. on January 24, 2013 at 10:08pm

Stephanie,

Thanks for your advice!  I am reading more about priapism and how sometimes SCD is harder on boys than girls.  I've also been looking into what kind of supplements he would benefit from so I can bring it up with his doctor at his next appointment. Hopefully he will not have any episodes so young, while I am not a really over protective mother (well I wasn't with my first), I will try not to be the same with him.  Probably when he's older and is able to communicate his discomforts with me I'll be able to take it more easy with him since I wont have to be guessing what's going on.

 

• ▶ Reply

Permalink Reply by Harriet A on January 24, 2013 at 10:22pm

My daughter is now 14 months and hasn't had a crisis yet. From my readings - most people have their first experince around 6 years old or older due to reduction and stabilization of fetal hemoglobin levels.

• ▶ Reply

Permalink Reply by Thomas Logan on January 25, 2013 at 5:45am

My first pain crisis was at the age of 3. My parent told me that is when it happened , but they didn't tell me I had sickle Cell until much later around 7 or 8 years old. So up until then I thought it was normal and everyone went to the hospital just like me

• ▶ Reply

Permalink Reply by Renaud Valerie on February 11, 2013 at 1:25pm

Hi, I'm new to this as well. My first crisis was at the age of 5. I used to live in Trinidad so at that time they didn't know that I had it. It wasn't until I came to NYC that the doctors found out I had it. I was sick for 3+ weeks with non stop full body pain.

• ▶ Reply

Permalink Reply by Austyn Hart-Tinsley on February 15, 2013 at 5:11pm

I was diagnosised at 3 years with (SS) but my mom knew i had it at just 3 months she said i would cry a lot for nothing and it was very hard to get me to sleep sometime she said that holding me or even light massage were she though i was in pain ( back, arms, legs) would help, it did sometimes. Not much you can do to help but to love and support n hope the baby can push through the pain. But when i was a child there was not much luck in finding things to help. I hope you find more answers now that SCD is better known. Hope that help some 

austin

• ▶ Reply

Permalink Reply by Yoseph on March 8, 2013 at 4:23pm

My 15 month old son is sickle cell diseased SS.. he started getting high fevers at the age of 9 months but no sicklecell complications. At the age of 12 months he got his first spleen sequestration. At 15 months his second spleen sequestration and now he is put on. regular blood transfusion/ or exchange untill the age of 5 where it will be safe to remove his spleen.

• ▶ Reply

Permalink Reply by Monica. Wilson on March 9, 2013 at 5:11am

My mom said I was two when I had my first crisis and that was also when it was discovered that I had the disease I too am sc and my mom said I would not stop crying and I was balled up in the fetal position for the better part of the day, I can't really say what to look for in the baby myself because none of my babies have it you really just have to pay attention to them and go off instinct I don't know if this helps you out any but good luck!!!

• ▶ Reply

Permalink Reply by Asia Noel on March 11, 2013 at 7:58pm

Hi Janet,

I'm not only glad that you found this site, I am also glad that you are investing time to educate yourself about the disease.  

I have SCD (SS), my mom has SS and my dad has the trait so the doctors knew I'd have SS.  I had my first crisis/ infection/ hospitalization at 3 months when I got double pneumonia.  

I don't think there is any rhyme or reason to attacks.  Sometimes they come because something specific happens but there have been time where I was just sitting there watching TV and had a horrible attack.  

One thing I do advise you to do is to pay attention to your childs temperature.  FEVER= INFECTION and infections need to be treated quickly.

Janet, I wish you and your child the best :)  

Oh, and more advise, keep your baby WARM.  Being cold is my (and every SCD patient I know) #1 trigger.

• ▶ Reply

Permalink Reply by Maurice Lamount Alford on March 13, 2013 at 3:01am

Welcome new member to the Sickle Cell community! It's very good that you found this site and have joined the community as it will benefit you and your son. I was 2 when I had my first pain crisis and I don't remember it. My grandmpther and my mom(who was in nursing school at the time) were both told to have me drink a lot of fluids, juice and water but mostly water and to watch me and teach me to take it easy and not exert myself to much or over do it which were the most helpful things that I could do to prevent a lot of pain crisis. Now as a 43 year old warrior staying hydrated is the number one thing that I do to help prevent and alleviate pain crisis. I hope that this info helps you and your son as much as it has helped me. Also prayer works wonders! Take care and I'll be praying for you and yours.

 

• ▶ Reply

Permalink Reply by Janet O. on March 13, 2013 at 10:16am

Thanks everyone for your replies!  I really appreciate them and take everything into consideration for the care of my son. 

• ▶ Reply

Permalink Reply by Jalen Joyceline on September 11, 2013 at 8:33pm

I was diagnosed at birth, I believe? My parents got tested in the West Indies (USVI). My dad knew he had SS, and because of lack of idk.. proper testing (not clear what had happened) they told my mom she didnt have the trait. I think they eventually figured she did, when they blood tested me as a baby. But if I was diagnosed the earliest it could have been was 3 when I came to the states. 

I remember being sick during pre-school, I was always going in and out or leaving early, but I don't think I knew what was going on. In kindergarten, I was more aware. I lived in Florida, very hot, very humid, and I was getting sick and getting hospitalized almost every month. 

I think you should watch signs for discomfort. Because as a child, I couldn't have explained what I was feeling as well as I can now. I would say, "I hurt. It just hurts." and sometimes, you can be in pain, and it's too painful to cry. So I would look for constant figiting, saying, "the pain wont give me a break, no matter which position I'm in" Mood and health is linked as well. If your child seems more sensitive, irritable, or impatient suddenly, he could be in pain. 

I don't believe we get sick as babies because we're making good cells at that time. It's at a certain age where his bones will start creating sickle cells, and I think he will be old enough to convey his pain through actions, if not words.

• ▶ Reply