Sikcell: People living with Sickle Cell
We still Hope
Hello everybody!!!!
How nice is find something like this blog. This will be very helpful, because by it I can communicate with people who live with sickle cell. First, I beg you pardon because my English is not good, then sometimes it will be confuse.
But any way, here I going to tell a little about me and my family.
As we, my husband and I, are carriers of Sickle cell trait, my little baby born with SCA. He was diagnostic in the first blood screening right after he was born, and 2 weeks after his pediatrician call me asking if I knew that anyone in my family had SCD or SC trait. Until that point I knew that my husband had, my father and one of my sisters. I figure out that I also have the trait after we met the hematologist for the first time.
That time I have to confess was the worse day in my life here in USA. The pediatrician had told us that we should go to the specialist to have done the second test, but once there, they start to talk just about the disease, what I don't have any concern, and didn't perform any test. I got very upset when I asked the doctor if we shouldn't do the test on me and my husband, and she just said: "maybe in the future", Oh my Gosh!!!! I couldn't believe that I was hearing that. My baby was just one month old.
After leave the doc's office I said to my husband let's go to our personal docs and ask by ourselves to have this test done. Then I found that I was carrier too.
As was agreed we went again to a specialist when my son was 4 mo, then the nightmare started. Despite his hgb be low and he carrier almost 70% of hgb S, my baby never showed any physical symptom. He never had fever, pain, hand and foot syndrome... He has been always a very active and alert baby boy, who likes to see people talking and pay attention in everything and any movement around. At the second specialist visit, the docs want to do a transfusion on him, just because his hgb was not normal compare to a hgb A person. We almost freak out.
since that second specialist visit we start to look for natural ways to care of my baby. We started to follow the thyocianate diet and completing with L-gluta and vitamins.
After know that my baby has this condition I started to read a lot about the SCD, and 2 mo ago I found a doctor in Nigeria that is doing a study with some supplement that calls Carao, one Costa Rican fruit that is showing exciting results against any type of Anemia. Since then we add the Carao in my baby daily diet.
Now my son is almost 9 mo and looks perfect. He already start to walk and say some syllables. He got his first 2 teeth and some more is come up soon.
But any way, here I going to tell a little about me and my family.
As we, my husband and I, are carriers of Sickle cell trait, my little baby born with SCA. He was diagnostic in the first blood screening right after he was born, and 2 weeks after his pediatrician call me asking if I knew that anyone in my family had SCD or SC trait. Until that point I knew that my husband had, my father and one of my sisters. I figure out that I also have the trait after we met the hematologist for the first time.
That time I have to confess was the worse day in my life here in USA. The pediatrician had told us that we should go to the specialist to have done the second test, but once there, they start to talk just about the disease, what I don't have any concern, and didn't perform any test. I got very upset when I asked the doctor if we shouldn't do the test on me and my husband, and she just said: "maybe in the future", Oh my Gosh!!!! I couldn't believe that I was hearing that. My baby was just one month old.
After leave the doc's office I said to my husband let's go to our personal docs and ask by ourselves to have this test done. Then I found that I was carrier too.
As was agreed we went again to a specialist when my son was 4 mo, then the nightmare started. Despite his hgb be low and he carrier almost 70% of hgb S, my baby never showed any physical symptom. He never had fever, pain, hand and foot syndrome... He has been always a very active and alert baby boy, who likes to see people talking and pay attention in everything and any movement around. At the second specialist visit, the docs want to do a transfusion on him, just because his hgb was not normal compare to a hgb A person. We almost freak out.
since that second specialist visit we start to look for natural ways to care of my baby. We started to follow the thyocianate diet and completing with L-gluta and vitamins.
After know that my baby has this condition I started to read a lot about the SCD, and 2 mo ago I found a doctor in Nigeria that is doing a study with some supplement that calls Carao, one Costa Rican fruit that is showing exciting results against any type of Anemia. Since then we add the Carao in my baby daily diet.
Now my son is almost 9 mo and looks perfect. He already start to walk and say some syllables. He got his first 2 teeth and some more is come up soon.
Comment
-
Comment by Ali on May 4, 2009 at 9:53pm
-
Hello Aline,
I am glad to hear that your baby is growing and doing well. I am going to do some research on Carao for myself. Thanks for the information.
-
Comment by Nina on May 2, 2009 at 11:52am
-
Hi Vera,
Thank you very much. I'm glad you asked me about the thiocyanate diet. This supplement you can find in all seeds, and fruits like strawberries, blueberries, blackberries, pears... foods like yucca, African yam, wheat, millet...
Yes I found some Doctor in Sokoto, Nigeria. He is a pediatric hematologist and work for some institute for SCD patients there, and is doing some study with Carao.Carao is a fruit from Costa Rica, but the company is donating it to this doctor do the study. You can get the Carao from this web site http://anemiaanswer.com/. It's very easy to deal with it. The smell is very strong, but when we think in the results nothing matters.
Good luck!
-
Comment by Vera on May 1, 2009 at 5:50pm
-
Good to know your son is doing fine.You surely are doing a great job.
Please tell me more about the thiocyanate diet.What foods is your son taking?Where do you get your supply of carao from.You mentioned a Nigerian doctor.Is it available in Nigeria?
-
-
Hi DrD,
Thank you very much. My baby Hgb F still high. We have done the 6 mo Blood work and nothing change. By this exam we can see the picture of his hgb as adult. About the immunization and antibiotics he is taking all his shoots and he is on penicillin.
But I'm a little bit upset with his doc. He has Folic Acid deficiency and they seems don't see it. She said the level of MCV is related with the Hgb F, but it's clear it's not. While my son was breastfeeding his MCV was normal and his Hgb F was high. He stop to breastfeed by himself with 4 1/2 mo and after that his MCV start to increase, but his Hgb F decrease less than 0.01%. Now we are giving him Folic Acid supplement and his MCV start to decrease again, going to a normal average.
About the symptoms of SCD is complicated, I've read a lot about it, and I don't know if you have the knowledge about the level of trait that is consider inactive. Even if the person has the trait, can have minor symptom based on the levels of hgb S (> 45%). In my country lots of people live with trait up to 45%, many even with SCD and don't know. And they are asymptomatic. One example is my husband. My husband has almost 50% of hgb S and never felt nothing neither had anemia. It's sure related to the nutrition and life style.
That's why we are crazy to do everything to make sure that my baby will have a better life.
Later I will share with you in the community some studies that I've read.. It's amazing.
By the way, do you know if here they do the classification of SCD? I'm very eager to know if my son has BEN, CAR or Bantum type.
See you soon.
-
Comment by DrD on April 29, 2009 at 2:18am
-
Hello Aline,
Welcome to this community. I am happy to hear that you son is doing will. We all hope and pray that he continues to do well. You are doing a great thing for your son by being educated about all aspects of sickle cell disease. I am sure you have come across fetal hemoglobin. It is made in babies and stays with them for up to 9 months. While it is there, it protects the babies from sickle cell. As it disappears and is replaced by HbS, the features of sickle cell could manifest. Talk to your doctor about this and if possible ask about immunizations and antibiotics prophylaxis.
I look forward to continuing to hear about your son's wonderful progress on these pages.
D
-
-
Hey Sickle Cell Warrior, thanks.
My son blood level was 4.5 and 2 weeks after was 5. We did another test last week but the nurse made him to much upset and the result was compromised. Yes it's amazing the results of Carao. I'm very confident. About my son blood level I am trying to figure out what type of SCD he has then we can be more peace. I'm in contact with some docs in my country because they have a lot of studies about it.
Again, thank you a lot!!!!
It's good to know that I have some place to talk about it, because I'm getting sick here and sometimes I can't believe that this docs are called specialist.
-
Comment by Sickle Cell Warrior on April 28, 2009 at 6:39pm
-
Hey Aline, Welcome to the board and thanks for sharing your story. I hope that your son continues to do well. Many people have told me that they've used Carao with good results. What are his blood levels looking like? He sounds like a cool little tot. Take care of him and let me know if you ever have any questions (not about kids though! lol)
Top Content
Notes
Events
Groups
© 2024 Created by Ade Dotun.
Powered by
Badges | Report an Issue | Privacy Policy | Terms of Service
You need to be a member of Sikcell: People living with Sickle Cell to add comments!
Join Sikcell: People living with Sickle Cell