Vera

Hello Vera, my daughter is now 14 months and had a minor crises three weeks ago. she experienced dactylitis in her left hand it was clearly unconfortable but she did not seem to be in much pain. The swelling has only now gone down but we realise now that she was dehydrated. So lots of water later and she is on the mend and I have sworn to make sure that she is always well hydrated now. I am happy to meet you and hope that we can share tips and give each other support along this journey.

I JUST WANNA SAY OUR LUCKY IF YOUR BABY HAS WENT THIS LONG AND HADNT SHOWED ANY SIGNS CAUSE MY BABY WAS 3 MONTHS OLD WHEN SHE HAD HER BLOOD TRANSUIONBUT NOW SHES 3 YEARS OLD AND DONING GOOD NOW BUT ON MY END IM GETTING
WORST I'M IN THE HOSPITAL AS WE SPEAK AND I'M GOIG THRU ALOT

Hi Vera, sorry I took so long to respond. I really did not do anything special, just made sure she got all her shots and some extras on time, gave her as much fluids as she will drink in a day and kept all her clinic appointments. I think also, I was a little extra cautious about being clean, that is washing my hands and hers very often, especially if I had been out of the house at all, as well as insisting that anyone who came to visit washed theirs hands before touching her.

I have been very lucky that my aunt is able to babysit her for me while I go to work so she has not been in a day care environment where children tend to pick up lots of germs and can get sick fairly easily and often.

Thank you, i really appreciate it, that is what made me to create it because i wanted to connect to people that can relate to me and speak the same language like you said...God bless

Actually she received the pneumoccocal vaccine, the menningitis vaccine and the yellow fever vaccine. In Trinidad it is also very hot and we are in the A/C most of the time also. My daughter sweats a lot as well but what I do is when she is moving around during the day I usually leave her in shorts and a t-shirt or vest but at night when she is asleep I dress her in long sleeved pyjamas and socks just to make sure she does not get too cold from the A/C.

Actually, I do not think sweat has anything to do with the condition, I have done a lot of research and have found no such link. However, my daughter also has allergies and sneezes a lot. The slightest allergen in the atmosphere bothers her. But it is no biggie. Have you done research on Nicosan. I have been seriously researching it and will make a decision if she really needs it. So far I have not had to make that decision, thank God.

My daughter attends a sickle cell clinic in Orlando every four months and the doctor she sees did not know about Nicosan. He promised to do some research on it. I found that very strange. Does your baby go to a clinic?

I have never heard of dioscovite but have heard some good things about nicosan. I will do some research on it.

At the clinic they monitor her progress and do blood work every nine months to a year. She has had blood work done both here in Trinidad by her regular pediatrician and haemotologist as well as in orlando at the clinic.

Thank you for your message.. I am a parent trying to understand and gain as much knowledge to keep my baby healthy. I think this is a great way for parents to interact and learning how to deal with the unexpected.. We have a support group here in Los Angeles; however, on a good month three parents will attend. Please lets help all parents learn and advocate for a cure

I haven't logged onto my page in so long..thanks for your response.
So far my oldest daughter diagnosed with Sickle Cell SC is doing well.
When she was a baby it was very difficult but as she has gotten older it has subsided to some degree. My youngest daughter, diagnosed with SS just had her first pain crisis. It was very emotional for us all..she is eleven months. Contact me when you can..she is doing better by the way.