Our story..need all the help we can get

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mamaScarlett

Active member
Hi Hana,
Congratulations on the birth of your baby girl. I'm sorry you are going through this, but you sound like a wonderful mother who is doing everything you can in the best way for your daughter.
If you plan on continuing to live in Jordan, then I think the best thing to do would be to take a trip to meet with a Cf specialist somewhere else, and then have that Cf doctor build a relationship with a local pulmonologist in Jordan so they could talk or email back and forth as needed to get you the best care possible.
I would follow the lead Imogene sent you about the Zain group in Amman, and start researching Israel who would definitely have Cf docs, and possibly Istanbul. I know both of them would be very far for you to go but possibly easier than the US or UK. If financially you can swing the US or UK then there's no problem with finding someone there. I'd really try to find a Jordanian doc or pediatric specialist of some kind that is willing to work with you and a Cf specialist in another country or overseas.
<img src="i/expressions/heart.gif" border="0">

And here is the email address of the Cystic Fibrosis Foundation. I'd try emailing them your situation and seeing if they have any suggestions of doctors in your region.
info@cff.org
Important: Please include your full mailing address, phone number, and fax number in all electronic correspondence.
 
M

mamaScarlett

Active member
Hi Hana,
<br />Congratulations on the birth of your baby girl. I'm sorry you are going through this, but you sound like a wonderful mother who is doing everything you can in the best way for your daughter.
<br />If you plan on continuing to live in Jordan, then I think the best thing to do would be to take a trip to meet with a Cf specialist somewhere else, and then have that Cf doctor build a relationship with a local pulmonologist in Jordan so they could talk or email back and forth as needed to get you the best care possible.
<br />I would follow the lead Imogene sent you about the Zain group in Amman, and start researching Israel who would definitely have Cf docs, and possibly Istanbul. I know both of them would be very far for you to go but possibly easier than the US or UK. If financially you can swing the US or UK then there's no problem with finding someone there. I'd really try to find a Jordanian doc or pediatric specialist of some kind that is willing to work with you and a Cf specialist in another country or overseas.
<br /><img src="i/expressions/heart.gif" border="0">
<br />
<br />And here is the email address of the Cystic Fibrosis Foundation. I'd try emailing them your situation and seeing if they have any suggestions of doctors in your region.
<br /> info@cff.org
<br /> Important: Please include your full mailing address, phone number, and fax number in all electronic correspondence.
<br />
 
M

mamaScarlett

Active member
Hana,
Here is the link to a website for the Pediatric Allergy and Chest Unit at Cairo University Hospital which would be a short plane ride away for you. <a target=_blank class=ftalternatingbarlinklarge href="http://www.pedallchestcairo.totalh.com/
">http://www.pedallchestcairo.totalh.com/
</a>
They have doctors that specialize in Cf treatment for children.
I realize of course, sadly that due to the current unrest in Cairo this may not help you at the moment, but that could change in the near future, and there are good doctors in Cairo. I'm sure many people here, myself included will help keep looking for someone to help you.
 
M

mamaScarlett

Active member
Hana,
Here is the link to a website for the Pediatric Allergy and Chest Unit at Cairo University Hospital which would be a short plane ride away for you. <a target=_blank class=ftalternatingbarlinklarge href="http://www.pedallchestcairo.totalh.com/
">http://www.pedallchestcairo.totalh.com/
</a>
They have doctors that specialize in Cf treatment for children.
I realize of course, sadly that due to the current unrest in Cairo this may not help you at the moment, but that could change in the near future, and there are good doctors in Cairo. I'm sure many people here, myself included will help keep looking for someone to help you.
 
M

mamaScarlett

Active member
Hana,
<br />Here is the link to a website for the Pediatric Allergy and Chest Unit at Cairo University Hospital which would be a short plane ride away for you. <a target=_blank class=ftalternatingbarlinklarge href="http://www.pedallchestcairo.totalh.com/
">http://www.pedallchestcairo.totalh.com/
</a><br />
<br />They have doctors that specialize in Cf treatment for children.
<br />I realize of course, sadly that due to the current unrest in Cairo this may not help you at the moment, but that could change in the near future, and there are good doctors in Cairo. I'm sure many people here, myself included will help keep looking for someone to help you.
 
T

Tammy15

New member
Your welcome Hana, I know how hard it can all be things can be going good and then you are back to square one. But you will do well I am sure it just becomes normal to you. My biggest challenge was dealing with a smart 8 mos who could unhook his IV and squirt medicine all over the wall, and at age 6 after his second bowel obstruction surgery had a nurse call me before I came to hospital then when she left room he told me surgeon told him he could eat and wanted fried chicken so off I go and he was standing at his door way, however his plans were ruined when the nurse caught me before I got to his room. Then came high school years my two and their best friend with CF would eat oatmeal go in restroom spit it in a paper towel mix in soap and show the nurse. So as all of them said they were not well I would have to get them from school. I am sure my two were the ring leaders of these plans lol. Just as you know your body and capabilities your daughter will learn, they know when they have to take it slow. The smiles, cuddles, and I love yous and their outright laughter made it alright for me and out weighs the tough stuff.
 
T

Tammy15

New member
Your welcome Hana, I know how hard it can all be things can be going good and then you are back to square one. But you will do well I am sure it just becomes normal to you. My biggest challenge was dealing with a smart 8 mos who could unhook his IV and squirt medicine all over the wall, and at age 6 after his second bowel obstruction surgery had a nurse call me before I came to hospital then when she left room he told me surgeon told him he could eat and wanted fried chicken so off I go and he was standing at his door way, however his plans were ruined when the nurse caught me before I got to his room. Then came high school years my two and their best friend with CF would eat oatmeal go in restroom spit it in a paper towel mix in soap and show the nurse. So as all of them said they were not well I would have to get them from school. I am sure my two were the ring leaders of these plans lol. Just as you know your body and capabilities your daughter will learn, they know when they have to take it slow. The smiles, cuddles, and I love yous and their outright laughter made it alright for me and out weighs the tough stuff.
 
T

Tammy15

New member
Your welcome Hana, I know how hard it can all be things can be going good and then you are back to square one. But you will do well I am sure it just becomes normal to you. My biggest challenge was dealing with a smart 8 mos who could unhook his IV and squirt medicine all over the wall, and at age 6 after his second bowel obstruction surgery had a nurse call me before I came to hospital then when she left room he told me surgeon told him he could eat and wanted fried chicken so off I go and he was standing at his door way, however his plans were ruined when the nurse caught me before I got to his room. Then came high school years my two and their best friend with CF would eat oatmeal go in restroom spit it in a paper towel mix in soap and show the nurse. So as all of them said they were not well I would have to get them from school. I am sure my two were the ring leaders of these plans lol. Just as you know your body and capabilities your daughter will learn, they know when they have to take it slow. The smiles, cuddles, and I love yous and their outright laughter made it alright for me and out weighs the tough stuff.
 
M

MyBabyCeline

Member
mamaScarlett thank you so much for the suggestion, it definitely makes sense what you said about linking between the CF specialist that we see abroad and our pediatrician here. I didn't think of that really <img src="i/expressions/face-icon-small-smile.gif" border="0"> We are seriously considering going to the UK, this seems to be our best option now. I will also email the CFF and see if they have any other suggestions.

Thanks again <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

MyBabyCeline

Member
mamaScarlett thank you so much for the suggestion, it definitely makes sense what you said about linking between the CF specialist that we see abroad and our pediatrician here. I didn't think of that really <img src="i/expressions/face-icon-small-smile.gif" border="0"> We are seriously considering going to the UK, this seems to be our best option now. I will also email the CFF and see if they have any other suggestions.

Thanks again <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

MyBabyCeline

Member
mamaScarlett thank you so much for the suggestion, it definitely makes sense what you said about linking between the CF specialist that we see abroad and our pediatrician here. I didn't think of that really <img src="i/expressions/face-icon-small-smile.gif" border="0"> We are seriously considering going to the UK, this seems to be our best option now. I will also email the CFF and see if they have any other suggestions.
<br />
<br />Thanks again <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
T

tammykrumrey

Guest
Just want to say welcome and congratulations on your new bundle of joy!! Those before me have given great information and I don't have much to add to it besides hang in there and lean on others, such as this forum, to help you through it! Sounds like you are on the right track! I have two daughters, both who have CF. My oldest nephew has CF, and he is engaged to a beautiful young lady-who also has CF!

Again, welcome and congrats on your sweet baby girl!
 
T

tammykrumrey

Guest
Just want to say welcome and congratulations on your new bundle of joy!! Those before me have given great information and I don't have much to add to it besides hang in there and lean on others, such as this forum, to help you through it! Sounds like you are on the right track! I have two daughters, both who have CF. My oldest nephew has CF, and he is engaged to a beautiful young lady-who also has CF!

Again, welcome and congrats on your sweet baby girl!
 
T

tammykrumrey

Guest
Just want to say welcome and congratulations on your new bundle of joy!! Those before me have given great information and I don't have much to add to it besides hang in there and lean on others, such as this forum, to help you through it! Sounds like you are on the right track! I have two daughters, both who have CF. My oldest nephew has CF, and he is engaged to a beautiful young lady-who also has CF!
<br />
<br />Again, welcome and congrats on your sweet baby girl!
 
M

MyBabyCeline

Member
Thank you Tammy...

I wish your two little girls always stay well and healthy, and your nephew and his fiancee all the luck and happiness in the world <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MyBabyCeline

Member
Thank you Tammy...

I wish your two little girls always stay well and healthy, and your nephew and his fiancee all the luck and happiness in the world <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MyBabyCeline

Member
Thank you Tammy...
<br />
<br />I wish your two little girls always stay well and healthy, and your nephew and his fiancee all the luck and happiness in the world <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
F

froggymama

New member
Hana,

Welcome and congratulations on your little girl! Celine is a beautiful name. Everyone on this forum knows how tough the first few months after the diagnosis are, so you're in good company. And know that is does get easier. I promise. Soon you'll look at your daughter and not see CF, you'll just see your little girl.

I think it's incredible you're looking at all options to keep your baby healthy, even relocating. Your daughter is lucky to have such dedicated parents.

When my daughter was diagnosed at 4 months, she was severely malnourished, despite nursing all the time. This was before California did newborn screening, so the fact that you knew at birth is wonderful. I'll tell you what meds/treatments our clinic started at 4 months.

First they did a full blood panel to check her vitamin levels. Because she was malnourished, her vitamin levels were extremely low. They started her on Vitamax (a vitamin that CF kids can absorb). She also started taking iron (ferrous sulfate), and pancreatic enzymes. Be careful they do use a CF clinic approved enzyme like Zen pep, or Creon. For some awful reason, our hospital gave my daughter viokase, which gave her a bloody diaper rash. It is no longer used for CF because of the side affects and it isn't very effective. They also started her on Prevacid (an acid blocker) that helps the enzymes work better.

They also started my daughter on 20 minutes of percussion twice a day. We used a little rubber percusser and tapped her on her chest, sides and back. We also did albuterol twice a day and Pulmozyme once a day. Every two months the docs at her clinic did a throat swab to check for pseudomonas and staph, etc.

I hope that helps. My five year old is super healthy and doing great. She's cultured pseudomonas a couple times but (knock on wood) has been clean for a few years. Good luck to you, and I hope you find a good CF clinic or at least a great team of Pulms, and GI docs who have a good understanding of CF. Take care. Elise
 
F

froggymama

New member
Hana,

Welcome and congratulations on your little girl! Celine is a beautiful name. Everyone on this forum knows how tough the first few months after the diagnosis are, so you're in good company. And know that is does get easier. I promise. Soon you'll look at your daughter and not see CF, you'll just see your little girl.

I think it's incredible you're looking at all options to keep your baby healthy, even relocating. Your daughter is lucky to have such dedicated parents.

When my daughter was diagnosed at 4 months, she was severely malnourished, despite nursing all the time. This was before California did newborn screening, so the fact that you knew at birth is wonderful. I'll tell you what meds/treatments our clinic started at 4 months.

First they did a full blood panel to check her vitamin levels. Because she was malnourished, her vitamin levels were extremely low. They started her on Vitamax (a vitamin that CF kids can absorb). She also started taking iron (ferrous sulfate), and pancreatic enzymes. Be careful they do use a CF clinic approved enzyme like Zen pep, or Creon. For some awful reason, our hospital gave my daughter viokase, which gave her a bloody diaper rash. It is no longer used for CF because of the side affects and it isn't very effective. They also started her on Prevacid (an acid blocker) that helps the enzymes work better.

They also started my daughter on 20 minutes of percussion twice a day. We used a little rubber percusser and tapped her on her chest, sides and back. We also did albuterol twice a day and Pulmozyme once a day. Every two months the docs at her clinic did a throat swab to check for pseudomonas and staph, etc.

I hope that helps. My five year old is super healthy and doing great. She's cultured pseudomonas a couple times but (knock on wood) has been clean for a few years. Good luck to you, and I hope you find a good CF clinic or at least a great team of Pulms, and GI docs who have a good understanding of CF. Take care. Elise
 
F

froggymama

New member
Hana,
<br />
<br />Welcome and congratulations on your little girl! Celine is a beautiful name. Everyone on this forum knows how tough the first few months after the diagnosis are, so you're in good company. And know that is does get easier. I promise. Soon you'll look at your daughter and not see CF, you'll just see your little girl.
<br />
<br />I think it's incredible you're looking at all options to keep your baby healthy, even relocating. Your daughter is lucky to have such dedicated parents.
<br />
<br />When my daughter was diagnosed at 4 months, she was severely malnourished, despite nursing all the time. This was before California did newborn screening, so the fact that you knew at birth is wonderful. I'll tell you what meds/treatments our clinic started at 4 months.
<br />
<br />First they did a full blood panel to check her vitamin levels. Because she was malnourished, her vitamin levels were extremely low. They started her on Vitamax (a vitamin that CF kids can absorb). She also started taking iron (ferrous sulfate), and pancreatic enzymes. Be careful they do use a CF clinic approved enzyme like Zen pep, or Creon. For some awful reason, our hospital gave my daughter viokase, which gave her a bloody diaper rash. It is no longer used for CF because of the side affects and it isn't very effective. They also started her on Prevacid (an acid blocker) that helps the enzymes work better.
<br />
<br />They also started my daughter on 20 minutes of percussion twice a day. We used a little rubber percusser and tapped her on her chest, sides and back. We also did albuterol twice a day and Pulmozyme once a day. Every two months the docs at her clinic did a throat swab to check for pseudomonas and staph, etc.
<br />
<br />I hope that helps. My five year old is super healthy and doing great. She's cultured pseudomonas a couple times but (knock on wood) has been clean for a few years. Good luck to you, and I hope you find a good CF clinic or at least a great team of Pulms, and GI docs who have a good understanding of CF. Take care. Elise
 
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