The story of my daughter
Mar 23, 2016 16:12:47 GMT
Post by burkov on Mar 23, 2016 16:12:47 GMT
Hello everyone, i'm happy to find this forum, because we have been through so much trouble, and we dont have anyone around that can understand us.
I hope to find some friendly faces, and good advices here. As i'll be happy to help everyone with everything i can.
So here is our story.
My daughter Lina was born a week late, but with low weight. She was only 2100 grams.
She had an infection and stayed in the hospital for 2 weeks, and then was discharged with her mom.
I was sooo happy, that my child was finaly home. I was on top of the world.
For the next two weeks, she didn't gain any weight. On her 29th day, she was looking very bad. She refused to eat, and was sleeping constantly.
We rushed into a hospital and she was admitted, alone. For the next almost 5 months, she was fighting for her life, with severe infections, almost no weight gain even though she was on IV feeding in addition to the normal bottle feeding.
In the end of her second month we were informed that she has SCID, and we should start a procedure for bone marrow transplant.
We were crushed in our tears and sadness. Nothing was going like it should with the transplant.
We had to travel to Itally for this, but the hospital decided that thay dont want her. This is just week before the aranged date.
In the meantime, we only had 5 minutes, twice a week to be with our little girl. Not being able to touch her, just looking at her bright blue eyes.
2 days before cristmas, we were informed that she doesn't have any veins left in good shape and they are taking her off the IV feeding. They told us, that if she survives until 6 of january, she will be put on parenteral feeding. This was another devastating moment in our lives.
On the christmas day, we got a call from the hospital. They told us that she has gained weight. It was the incredible amount of 50 grams. On the next day she had gained 50 more and being just over 3 kilograms
She started to gain weight more and more, we were advised to buy Neocate, a special formula for children with severe diarrhea and milk protein alergy.
It is very expensive, but a lot of friends and our family helped us in this difficult moment.
On the 16th of january 2015 i got the best call in my life. Her doctor told me, that we can go and take her home.
Since january, we were talking to immunologists, we even went to france in the Rober Debre hospital, they got a lot of blood for tests and DNA testing.
Its been a year since our trip to france, but we dont have any diagnose yet. She didn't show any of the known dna mutations.
She is has temporary diagnose for primary immunodeficiency of unknown type.
She has almost no b cells and almost no gamma globulins. With the subcut she is keeping 10 for igG and very low levels of igM and igM, but this is normal i guss.
She is growing well now, with a few more serios infections. At the moment it is her forth c.diff infection, but it is strange because she doesnt get diarrhea.
In the meantime, we got a contact with a good young doctor, who accepted her as a patient.
This might sound strange, but in the city we live (capital), no one wanted to take responsibility for her, so we have to travel 100 miles every time we go to a hospital.
About the gamma globulins.
She started with octagam while she was still in the hospital, 6 months later her new doc, instructed us to make the subcut at home, and since then she is on SC every week.
Anyway, here is a cute photo of her sleeping.
BTW her name is Lina and she is just over 19 months old
Sorry for my bad english, i hope its not that hard to read.
I hope to find some friendly faces, and good advices here. As i'll be happy to help everyone with everything i can.
So here is our story.
My daughter Lina was born a week late, but with low weight. She was only 2100 grams.
She had an infection and stayed in the hospital for 2 weeks, and then was discharged with her mom.
I was sooo happy, that my child was finaly home. I was on top of the world.
For the next two weeks, she didn't gain any weight. On her 29th day, she was looking very bad. She refused to eat, and was sleeping constantly.
We rushed into a hospital and she was admitted, alone. For the next almost 5 months, she was fighting for her life, with severe infections, almost no weight gain even though she was on IV feeding in addition to the normal bottle feeding.
In the end of her second month we were informed that she has SCID, and we should start a procedure for bone marrow transplant.
We were crushed in our tears and sadness. Nothing was going like it should with the transplant.
We had to travel to Itally for this, but the hospital decided that thay dont want her. This is just week before the aranged date.
In the meantime, we only had 5 minutes, twice a week to be with our little girl. Not being able to touch her, just looking at her bright blue eyes.
2 days before cristmas, we were informed that she doesn't have any veins left in good shape and they are taking her off the IV feeding. They told us, that if she survives until 6 of january, she will be put on parenteral feeding. This was another devastating moment in our lives.
On the christmas day, we got a call from the hospital. They told us that she has gained weight. It was the incredible amount of 50 grams. On the next day she had gained 50 more and being just over 3 kilograms
She started to gain weight more and more, we were advised to buy Neocate, a special formula for children with severe diarrhea and milk protein alergy.
It is very expensive, but a lot of friends and our family helped us in this difficult moment.
On the 16th of january 2015 i got the best call in my life. Her doctor told me, that we can go and take her home.
Since january, we were talking to immunologists, we even went to france in the Rober Debre hospital, they got a lot of blood for tests and DNA testing.
Its been a year since our trip to france, but we dont have any diagnose yet. She didn't show any of the known dna mutations.
She is has temporary diagnose for primary immunodeficiency of unknown type.
She has almost no b cells and almost no gamma globulins. With the subcut she is keeping 10 for igG and very low levels of igM and igM, but this is normal i guss.
She is growing well now, with a few more serios infections. At the moment it is her forth c.diff infection, but it is strange because she doesnt get diarrhea.
In the meantime, we got a contact with a good young doctor, who accepted her as a patient.
This might sound strange, but in the city we live (capital), no one wanted to take responsibility for her, so we have to travel 100 miles every time we go to a hospital.
About the gamma globulins.
She started with octagam while she was still in the hospital, 6 months later her new doc, instructed us to make the subcut at home, and since then she is on SC every week.
Anyway, here is a cute photo of her sleeping.
BTW her name is Lina and she is just over 19 months old
Sorry for my bad english, i hope its not that hard to read.