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Confused! Son newly diagnosed
- Thread starter mneds
- Start date
Justinsmom
New member
<P>Hi Amanda,</P>
<P> </P>
<P>This is the first time I have ever posed on this site. We are in the same exact boat as you. My son just turned 7, but our "problems" began when he turned 6. In the end of January his pancreatic elastase level was 148, by early March it was 70 and by July it was down to 25!!!!! He went from 25% bmi to below the 3rd percent. Just before turning 7, he weighed only 41 pounds. We had one negative sweat test (CHOP) and we had a negative Swachman Diamond test (Justin has had blood issues - low iron - liquid Ferris Sulfate 220 11 ml./day since 2 1/2 years old - and low platelets at times) that did show several polymorphisms not know to cause SDS. He also had a genetic test (not Ambry) that showed one "rare" mutation. In early August we meet with the CF clinic and they placed him on enzymes. The pulmonologist did not feel he had CF, but was treating him as if he did. If he did, it was a rare presentation. In September we met with the GI and were told she believes it most likely is CF. Since on the enzymes he has gained 3 pounds (after 0 weight gain in 17 months!!!) He had low vit. D (19) until enzymes which it is now 39. They have made a world of difference. Prior to taking them he had pain and did not digest ANYTHING. He had up to 8-10 stools a day. </P>
<P> </P>
<P>He treats for asthma but only requires an inhailer once or twice a year. Uses Singulair daily. Only had issues when Singulair was too low of a dose. His only symptom at this time is pancreatic. Are there forms of CF that only have GI issues? Does the fact that his pancreas declined so quickly and so low mean that he will become diabetic? </P>
<P> </P>
<P>Any insight from anyone would be GREATLY appreciated.</P>
<P> </P>
<P>Josette in PA</P>
<P>Justin's Mama</P>
<P> </P>
<P>This is the first time I have ever posed on this site. We are in the same exact boat as you. My son just turned 7, but our "problems" began when he turned 6. In the end of January his pancreatic elastase level was 148, by early March it was 70 and by July it was down to 25!!!!! He went from 25% bmi to below the 3rd percent. Just before turning 7, he weighed only 41 pounds. We had one negative sweat test (CHOP) and we had a negative Swachman Diamond test (Justin has had blood issues - low iron - liquid Ferris Sulfate 220 11 ml./day since 2 1/2 years old - and low platelets at times) that did show several polymorphisms not know to cause SDS. He also had a genetic test (not Ambry) that showed one "rare" mutation. In early August we meet with the CF clinic and they placed him on enzymes. The pulmonologist did not feel he had CF, but was treating him as if he did. If he did, it was a rare presentation. In September we met with the GI and were told she believes it most likely is CF. Since on the enzymes he has gained 3 pounds (after 0 weight gain in 17 months!!!) He had low vit. D (19) until enzymes which it is now 39. They have made a world of difference. Prior to taking them he had pain and did not digest ANYTHING. He had up to 8-10 stools a day. </P>
<P> </P>
<P>He treats for asthma but only requires an inhailer once or twice a year. Uses Singulair daily. Only had issues when Singulair was too low of a dose. His only symptom at this time is pancreatic. Are there forms of CF that only have GI issues? Does the fact that his pancreas declined so quickly and so low mean that he will become diabetic? </P>
<P> </P>
<P>Any insight from anyone would be GREATLY appreciated.</P>
<P> </P>
<P>Josette in PA</P>
<P>Justin's Mama</P>
Justinsmom
New member
<P>Hi Amanda,</P>
<P></P>
<P>This is the first time I have ever posed on this site. We are in the same exact boat as you. My son just turned 7, but our "problems" began when he turned 6. In the end of January his pancreatic elastase level was 148, by early March it was 70 and by July it was down to 25!!!!! He went from 25% bmi to below the 3rd percent. Just before turning 7, he weighed only 41 pounds. We had one negative sweat test (CHOP) and we had a negative Swachman Diamond test (Justin has had blood issues - low iron - liquid Ferris Sulfate 220 11 ml./day since 2 1/2 years old - and low platelets at times) that did show several polymorphisms not know to cause SDS. He also had a genetic test (not Ambry) that showed one "rare" mutation. In early August we meet with the CF clinic and they placed him on enzymes. The pulmonologist did not feel he had CF, but was treating him as if he did. If he did, it was a rare presentation. In September we met with the GI and were told she believes it most likely is CF. Since on the enzymes he has gained 3 pounds (after 0 weight gain in 17 months!!!) He had low vit. D (19) until enzymes which it is now 39. They have made a world of difference. Prior to taking them he had pain and did not digest ANYTHING. Hehad up to 8-10 stools a day. </P>
<P></P>
<P>He treats for asthma but only requires an inhailer once or twice a year. Uses Singulair daily. Only had issues when Singulair was too low of a dose. His only symptom at this time is pancreatic. Are there forms of CF that only have GI issues? Does the fact that his pancreas declined so quickly and so low mean that he will become diabetic? </P>
<P></P>
<P>Any insight from anyone would be GREATLY appreciated.</P>
<P></P>
<P>Josette in PA</P>
<P>Justin's Mama</P>
<P></P>
<P>This is the first time I have ever posed on this site. We are in the same exact boat as you. My son just turned 7, but our "problems" began when he turned 6. In the end of January his pancreatic elastase level was 148, by early March it was 70 and by July it was down to 25!!!!! He went from 25% bmi to below the 3rd percent. Just before turning 7, he weighed only 41 pounds. We had one negative sweat test (CHOP) and we had a negative Swachman Diamond test (Justin has had blood issues - low iron - liquid Ferris Sulfate 220 11 ml./day since 2 1/2 years old - and low platelets at times) that did show several polymorphisms not know to cause SDS. He also had a genetic test (not Ambry) that showed one "rare" mutation. In early August we meet with the CF clinic and they placed him on enzymes. The pulmonologist did not feel he had CF, but was treating him as if he did. If he did, it was a rare presentation. In September we met with the GI and were told she believes it most likely is CF. Since on the enzymes he has gained 3 pounds (after 0 weight gain in 17 months!!!) He had low vit. D (19) until enzymes which it is now 39. They have made a world of difference. Prior to taking them he had pain and did not digest ANYTHING. Hehad up to 8-10 stools a day. </P>
<P></P>
<P>He treats for asthma but only requires an inhailer once or twice a year. Uses Singulair daily. Only had issues when Singulair was too low of a dose. His only symptom at this time is pancreatic. Are there forms of CF that only have GI issues? Does the fact that his pancreas declined so quickly and so low mean that he will become diabetic? </P>
<P></P>
<P>Any insight from anyone would be GREATLY appreciated.</P>
<P></P>
<P>Josette in PA</P>
<P>Justin's Mama</P>
Justinsmom
New member
<P><BR>Hi Amanda,</P>
<P></P>
<P>This is the first time I have ever posed on this site. We are in the same exact boat as you. My son just turned 7, but our "problems" began when he turned 6. In the end of January his pancreatic elastase level was 148, by early March it was 70 and by July it was down to 25!!!!! He went from 25% bmi to below the 3rd percent. Just before turning 7, he weighed only 41 pounds. We had one negative sweat test (CHOP) and we had a negative Swachman Diamond test (Justin has had blood issues - low iron - liquid Ferris Sulfate 220 11 ml./day since 2 1/2 years old - and low platelets at times) that did show several polymorphisms not know to cause SDS. He also had a genetic test (not Ambry) that showed one "rare" mutation. In early August we meet with the CF clinic and they placed him on enzymes. The pulmonologist did not feel he had CF, but was treating him as if he did. If he did, it was a rare presentation. In September we met with the GI and were told she believes it most likely is CF. Since on the enzymes he has gained 3 pounds (after 0 weight gain in 17 months!!!) He had low vit. D (19) until enzymes which it is now 39. They have made a world of difference. Prior to taking them he had pain and did not digest ANYTHING. Hehad up to 8-10 stools a day. </P>
<P></P>
<P>He treats for asthma but only requires an inhailer once or twice a year. Uses Singulair daily. Only had issues when Singulair was too low of a dose. His only symptom at this time is pancreatic. Are there forms of CF that only have GI issues? Does the fact that his pancreas declined so quickly and so low mean that he will become diabetic? </P>
<P></P>
<P>Any insight from anyone would be GREATLY appreciated.</P>
<P></P>
<P>Josette in PA</P>
<P>Justin's Mama</P>
<P></P>
<P>This is the first time I have ever posed on this site. We are in the same exact boat as you. My son just turned 7, but our "problems" began when he turned 6. In the end of January his pancreatic elastase level was 148, by early March it was 70 and by July it was down to 25!!!!! He went from 25% bmi to below the 3rd percent. Just before turning 7, he weighed only 41 pounds. We had one negative sweat test (CHOP) and we had a negative Swachman Diamond test (Justin has had blood issues - low iron - liquid Ferris Sulfate 220 11 ml./day since 2 1/2 years old - and low platelets at times) that did show several polymorphisms not know to cause SDS. He also had a genetic test (not Ambry) that showed one "rare" mutation. In early August we meet with the CF clinic and they placed him on enzymes. The pulmonologist did not feel he had CF, but was treating him as if he did. If he did, it was a rare presentation. In September we met with the GI and were told she believes it most likely is CF. Since on the enzymes he has gained 3 pounds (after 0 weight gain in 17 months!!!) He had low vit. D (19) until enzymes which it is now 39. They have made a world of difference. Prior to taking them he had pain and did not digest ANYTHING. Hehad up to 8-10 stools a day. </P>
<P></P>
<P>He treats for asthma but only requires an inhailer once or twice a year. Uses Singulair daily. Only had issues when Singulair was too low of a dose. His only symptom at this time is pancreatic. Are there forms of CF that only have GI issues? Does the fact that his pancreas declined so quickly and so low mean that he will become diabetic? </P>
<P></P>
<P>Any insight from anyone would be GREATLY appreciated.</P>
<P></P>
<P>Josette in PA</P>
<P>Justin's Mama</P>
Hi, <div>I wanted to reply to your specific question about how much information do you tell your child. And my response would be... I really do not know the right answer. That being said, I'll tell you a bit about my situation and you can decided what's best for you and your son. </div><div><br></div><div>I just turned 40 years old in July! ") I have CF. My parents found out when I was 2 years old. Never told me anything about having CF or what my treatments were for. They never told me why I had to take my enzymes... etc. I found out at age 22. Literally, while on the examining table. I really thought the Dr. had me confused with another patient. But I will tell you that my parents had me in every sport, never missed a treatment, or an enzyme. And their reason behind it was so I could live a "normal" life. (There is no such thing as a normal life, it becomes your own normal and what you make it.) I have to say that I have met many parents who have the same question as yours. I cannot relate though. I do not have children. B/C of CF, I was never able to conceive. But, I can say, I admire what my parents did. It may not be the "right" answer for all parents, but I turned out ok! ") I have a very determined attitude and won't let CF run my life. I also wrote a book about my life having CF and my parents' point of view and decision not to tell me. I don't know if this is helpful, but it is my experience. </div><div><br></div><div>For you, keep in mind, you have to decide how much your son can understand. You also have to determine how much you understand and how much you can take. Maybe wait a little bit until you have had time to process and accept this yourself and realize that there is a lot of information and a lot of support out there for you. CF is consuming and it never goes away. It tries my patience. I told my husband once, that if I could leave me, I would. ") Most of the news you receive about CF is doom and gloom. But it doesn't have to be. You have to decide how you are going to handle the disease. Try not to be angry, take a breath and learn about it, learn to accept it, otherwise, if you don't it will for sure drive you crazy. (I understand where you are coming from, but from a different perspective.) Good luck, hang in there! </div><div>If you want to chat, please feel free to write back at my email... </div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">lhuspen@vrc-hr.com.</div>
Hi,I wanted to reply to your specific question about how much information do you tell your child. And my response would be... I really do not know the right answer. That being said, I'll tell you a bit about my situation and you can decided what's best for you and your son.<br>I just turned 40 years old in July! ") I have CF. My parents found out when I was 2 years old. Never told me anything about having CF or what my treatments were for. They never told me why I had to take my enzymes... etc. I found out at age 22. Literally, while on the examining table. I really thought the Dr. had me confused with another patient. But I will tell you that my parents had me in every sport, never missed a treatment, or an enzyme. And their reason behind it was so I could live a "normal" life. (There is no such thing as a normal life, it becomes your own normal and what you make it.) I have to say that I have met many parents who have the same question as yours. I cannot relate though. I do not have children. B/C of CF, I was never able to conceive. But, I can say, I admire what my parents did. It may not be the "right" answer for all parents, but I turned out ok! ") I have a very determined attitude and won't let CF run my life.I also wrote a book about my life having CF and my parents' point of view and decision not to tell me. I don't know if this is helpful, but it is my experience.<br>For you, keep in mind, you have to decide how much your son can understand. You also have to determine how much you understand and how much you can take. Maybe wait a little bit until you have had time to process and accept this yourself and realize that there is a lot of information and a lot of support out there for you. CF is consuming and it never goes away. It tries my patience. I told my husband once, that if I could leave me, I would. ") Most of the news you receive about CF is doom and gloom. But it doesn't have to be. You have to decide how you are going to handle the disease. Try not to be angry, take a breath and learn about it, learn to accept it, otherwise, if you don't it will for sure drive you crazy. (I understand where you are coming from, but from a different perspective.) Good luck, hang in there!If you want to chat, please feel free to write back at my email...<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">lhuspen@vrc-hr.com.
Hi,I wanted to reply to your specific question about how much information do you tell your child. And my response would be... I really do not know the right answer. That being said, I'll tell you a bit about my situation and you can decided what's best for you and your son.<br>I just turned 40 years old in July! ") I have CF. My parents found out when I was 2 years old. Never told me anything about having CF or what my treatments were for. They never told me why I had to take my enzymes... etc. I found out at age 22. Literally, while on the examining table. I really thought the Dr. had me confused with another patient. But I will tell you that my parents had me in every sport, never missed a treatment, or an enzyme. And their reason behind it was so I could live a "normal" life. (There is no such thing as a normal life, it becomes your own normal and what you make it.) I have to say that I have met many parents who have the same question as yours. I cannot relate though. I do not have children. B/C of CF, I was never able to conceive. But, I can say, I admire what my parents did. It may not be the "right" answer for all parents, but I turned out ok! ") I have a very determined attitude and won't let CF run my life.I also wrote a book about my life having CF and my parents' point of view and decision not to tell me. I don't know if this is helpful, but it is my experience.<br>For you, keep in mind, you have to decide how much your son can understand. You also have to determine how much you understand and how much you can take. Maybe wait a little bit until you have had time to process and accept this yourself and realize that there is a lot of information and a lot of support out there for you. CF is consuming and it never goes away. It tries my patience. I told my husband once, that if I could leave me, I would. ") Most of the news you receive about CF is doom and gloom. But it doesn't have to be. You have to decide how you are going to handle the disease. Try not to be angry, take a breath and learn about it, learn to accept it, otherwise, if you don't it will for sure drive you crazy. (I understand where you are coming from, but from a different perspective.) Good luck, hang in there!If you want to chat, please feel free to write back at my email...<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">lhuspen@vrc-hr.com.
<br>I am so sorry you are going through this as well. The enzymes have helped my son begin to gain weight as well which I am thankful for. I have read that keeping a healthier weight helps the child be healthier. I recently spoke with my sons pulmonologist and he said a negative sweat test does not mean negative for CF, but once a positive sweat test it does mean positive for CF. I too am interested in whether CF can mainly only affect GI issues. If this is the case does that mean it is how the disease will stay or will it eventually really begin to affect the lungs. My son does have severe sinus issues as well. He has cultured positive for staph once but it cleared with 21 days of antibiotics. Is your son doing the neb and vest treatments or just the enzymes at this point? I am also wondering why my son is supposed to do neb and vest when his lungs appear to be clear unless he is sick. At times I feel like I am taking away his childhood with all these treatments, but on the other hand if they are necessary for a healthy life then it is well worth it. I am concerned because he crys and crys with the hyper sal 7. He says it burns bad! Is this normal, does anyone know? Or is he just emoting so he can try to get out of his treatments? It doesn't work by the way, he still has to do them.
<br>I am so sorry you are going through this as well. The enzymes have helped my son begin to gain weight as well which I am thankful for. I have read that keeping a healthier weight helps the child be healthier. I recently spoke with my sons pulmonologist and he said a negative sweat test does not mean negative for CF, but once a positive sweat test it does mean positive for CF. I too am interested in whether CF can mainly only affect GI issues. If this is the case does that mean it is how the disease will stay or will it eventually really begin to affect the lungs. My son does have severe sinus issues as well. He has cultured positive for staph once but it cleared with 21 days of antibiotics. Is your son doing the neb and vest treatments or just the enzymes at this point?I am also wondering why my son is supposed to do neb and vest when his lungs appear to be clear unless he is sick. At times I feel like I am taking away his childhood with all these treatments, but on the other hand if they are necessary for a healthy life then it is well worth it. I am concerned because he crys and crys with the hyper sal 7. He says it burns bad! Is this normal, does anyone know? Or is he just emoting so he can try to get out of his treatments? It doesn't work by the way, he still has to do them.
<p><br>I am so sorry you are going through this as well. The enzymes have helped my son begin to gain weight as well which I am thankful for. I have read that keeping a healthier weight helps the child be healthier. <p>I recently spoke with my sons pulmonologist and he said a negative sweat test does not mean negative for CF, but once a positive sweat test it does mean positive for CF. <p><p>I too am interested in whether CF can mainly only affect GI issues. If this is the case does that mean it is how the disease will stay or will it eventually really begin to affect the lungs. My son does have severe sinus issues as well. He has cultured positive for staph once but it cleared with 21 days of antibiotics. <p><p>Is your son doing the neb and vest treatments or just the enzymes at this point?<p><p>I am also wondering why my son is supposed to do neb and vest when his lungs appear to be clear unless he is sick. At times I feel like I am taking away his childhood with all these treatments, but on the other hand if they are necessary for a healthy life then it is well worth it. <p><p>I am concerned because he crys and crys with the hyper sal 7. He says it burns bad! Is this normal, does anyone know? Or is he just emoting so he can try to get out of his treatments? It doesn't work by the way, he still has to do them.
Unfortunately CF is a progressive disease and while the lungs may not be affected right away, eventually due to infections, extra thick sticky mucus... they will be. DS' issues are mainly digestive; however, he has cultured typical CF bugs -- pseudmonas, steno. maltophilia, H. flu.... He also tends to have more sinus issues. That same sticky mucus keeps his nose from running -- in fact until he started pulmozyme at age 2 1/2 I'd never ever seen his nose run.
It's important to be aggressive and proactive with treatments -- cpt or vest, nebs, vitamins... To keep the lungs as healthy as possible
It's important to be aggressive and proactive with treatments -- cpt or vest, nebs, vitamins... To keep the lungs as healthy as possible
Unfortunately CF is a progressive disease and while the lungs may not be affected right away, eventually due to infections, extra thick sticky mucus... they will be. DS' issues are mainly digestive; however, he has cultured typical CF bugs -- pseudmonas, steno. maltophilia, H. flu.... He also tends to have more sinus issues. That same sticky mucus keeps his nose from running -- in fact until he started pulmozyme at age 2 1/2 I'd never ever seen his nose run.
It's important to be aggressive and proactive with treatments -- cpt or vest, nebs, vitamins... To keep the lungs as healthy as possible
It's important to be aggressive and proactive with treatments -- cpt or vest, nebs, vitamins... To keep the lungs as healthy as possible
Unfortunately CF is a progressive disease and while the lungs may not be affected right away, eventually due to infections, extra thick sticky mucus... they will be. DS' issues are mainly digestive; however, he has cultured typical CF bugs -- pseudmonas, steno. maltophilia, H. flu.... He also tends to have more sinus issues. That same sticky mucus keeps his nose from running -- in fact until he started pulmozyme at age 2 1/2 I'd never ever seen his nose run.
<br />
<br />It's important to be aggressive and proactive with treatments -- cpt or vest, nebs, vitamins... To keep the lungs as healthy as possible
<br />
<br />It's important to be aggressive and proactive with treatments -- cpt or vest, nebs, vitamins... To keep the lungs as healthy as possible
scrapper1264
New member
So sorry for all the confusion! It is a lot for you and your family to digest!!! See if you can get your son on 5% hypertonic saline, and that may help him. My 9yo son started on this a few years ago and has been doing great on it. Pulmo asked if we wanted to increase since that is what the trials used, but until it's not working we will stick with the 5%.
scrapper1264
New member
So sorry for all the confusion! It is a lot for you and your family to digest!!! See if you can get your son on 5% hypertonic saline, and that may help him. My 9yo son started on this a few years ago and has been doing great on it. Pulmo asked if we wanted to increase since that is what the trials used, but until it's not working we will stick with the 5%.
scrapper1264
New member
So sorry for all the confusion! It is a lot for you and your family to digest!!! See if you can get your son on 5% hypertonic saline, and that may help him. My 9yo son started on this a few years ago and has been doing great on it. Pulmo asked if we wanted to increase since that is what the trials used, but until it's not working we will stick with the 5%.
D
drdanika
Guest
My daughter was diagnosed 2 weeks ago today with a sweat test at 120. We have been in the hospital since the day after we found out... 4 more days til we get to go home (probably)... I just have to say that I am so glad we are here. We went through the last 2 years with faulty asthma diagnosis as well as non-specific childhood diarreah. She was screened as a newborn, the first test positive, the second negative. Since there are so many false positives on the first screening, her pediatrician assumed that was the case for her, and never thought to sweat test. Her chronic cough and frequent respiratory infections were attributed to starting preschool. From this expreriance, and can offer one piece of advice... You are your child's best advocate in health care. If you feel like you are getting the brush off, go somewhere else. If your clinic visit leaves you with more questions then answers, don't let them push you out the door until you are content.
As I said, I am so happy I am here. The time period between finding out friday afternoon, and then checking into the childrens hospital saturday morning was horrible. I felt like my baby's life was over. I felt like my life was over. Once I got here, and met with the first set of doctors, the clouds have been clearing day by day. The pulmonary attening and fellow come in every morning and check on Danika and ask us if we have any questions, which we always do... we make a list on the dry erase board in the room. The resident comes in a bit after, and then the whole team comes by around 12 and they do rounds. They describe the case, the plan for treatments, what's working and not working from the days before, and most importantly, when we mioght be able to go home. They are also 100% prepared to support our trip home with in home respiratory therapists to get us started (they are working on getting us a vest) a nutricianist, a social worker, 2 RNs, and many many many doctors. I hope that all CF kids get this treatment. If not there is something wrong. Danika started here with a super fast respiratory rate, a horrible cough, pancreatic insufficiancy, and o2 at 89%. She's almost back to normal. A normal that I haven't seen in far too long.
I'm not happy for the diagnosis, but I'm happy that there are so many qualified people taking care of her, and teaching us how to do the same. So try to see the light at the end of the tunnel I guess...
Amanda, as for telling your son what's going on... I'm an advocate of full disclosure. your son probably knows more already then you think he does, just from listening to you talk to doctors, family friends ect. The only thing we are leaving out is the possibility of a short life expectancy. I know she will figure that out in her own time, and I don't want that looming over her childhood. It is very present in my mind, which is why I will do my best to give her everything.
There are a couple youtube cartoons directed at kids that might be helpful for you. One is by the CFF, and the other it's UK counterpart. Both explain things very well in kid friendly terms and in a less scary way. just search cystic fibrosis cartoon, and scroll down to the educational clips section. I found those helpful for the other kids in the family aswell, that spend time with danika nd have been coming to visit her here.
Danika has taken to calling her mucus "monsters" and fights much less with her treatments when we remind her what they are for. The vest helps shake the monsters out of their hinding spots, and the nebs help you cough them out. The IV kills them, and the enzymes make you stronger to fight them.
I guess that's it. WOW, I can't believe how much everything has changed in 2 weeks.
Caitlin
As I said, I am so happy I am here. The time period between finding out friday afternoon, and then checking into the childrens hospital saturday morning was horrible. I felt like my baby's life was over. I felt like my life was over. Once I got here, and met with the first set of doctors, the clouds have been clearing day by day. The pulmonary attening and fellow come in every morning and check on Danika and ask us if we have any questions, which we always do... we make a list on the dry erase board in the room. The resident comes in a bit after, and then the whole team comes by around 12 and they do rounds. They describe the case, the plan for treatments, what's working and not working from the days before, and most importantly, when we mioght be able to go home. They are also 100% prepared to support our trip home with in home respiratory therapists to get us started (they are working on getting us a vest) a nutricianist, a social worker, 2 RNs, and many many many doctors. I hope that all CF kids get this treatment. If not there is something wrong. Danika started here with a super fast respiratory rate, a horrible cough, pancreatic insufficiancy, and o2 at 89%. She's almost back to normal. A normal that I haven't seen in far too long.
I'm not happy for the diagnosis, but I'm happy that there are so many qualified people taking care of her, and teaching us how to do the same. So try to see the light at the end of the tunnel I guess...
Amanda, as for telling your son what's going on... I'm an advocate of full disclosure. your son probably knows more already then you think he does, just from listening to you talk to doctors, family friends ect. The only thing we are leaving out is the possibility of a short life expectancy. I know she will figure that out in her own time, and I don't want that looming over her childhood. It is very present in my mind, which is why I will do my best to give her everything.
There are a couple youtube cartoons directed at kids that might be helpful for you. One is by the CFF, and the other it's UK counterpart. Both explain things very well in kid friendly terms and in a less scary way. just search cystic fibrosis cartoon, and scroll down to the educational clips section. I found those helpful for the other kids in the family aswell, that spend time with danika nd have been coming to visit her here.
Danika has taken to calling her mucus "monsters" and fights much less with her treatments when we remind her what they are for. The vest helps shake the monsters out of their hinding spots, and the nebs help you cough them out. The IV kills them, and the enzymes make you stronger to fight them.
I guess that's it. WOW, I can't believe how much everything has changed in 2 weeks.
Caitlin
D
drdanika
Guest
My daughter was diagnosed 2 weeks ago today with a sweat test at 120. We have been in the hospital since the day after we found out... 4 more days til we get to go home (probably)... I just have to say that I am so glad we are here. We went through the last 2 years with faulty asthma diagnosis as well as non-specific childhood diarreah. She was screened as a newborn, the first test positive, the second negative. Since there are so many false positives on the first screening, her pediatrician assumed that was the case for her, and never thought to sweat test. Her chronic cough and frequent respiratory infections were attributed to starting preschool. From this expreriance, and can offer one piece of advice... You are your child's best advocate in health care. If you feel like you are getting the brush off, go somewhere else. If your clinic visit leaves you with more questions then answers, don't let them push you out the door until you are content.
As I said, I am so happy I am here. The time period between finding out friday afternoon, and then checking into the childrens hospital saturday morning was horrible. I felt like my baby's life was over. I felt like my life was over. Once I got here, and met with the first set of doctors, the clouds have been clearing day by day. The pulmonary attening and fellow come in every morning and check on Danika and ask us if we have any questions, which we always do... we make a list on the dry erase board in the room. The resident comes in a bit after, and then the whole team comes by around 12 and they do rounds. They describe the case, the plan for treatments, what's working and not working from the days before, and most importantly, when we mioght be able to go home. They are also 100% prepared to support our trip home with in home respiratory therapists to get us started (they are working on getting us a vest) a nutricianist, a social worker, 2 RNs, and many many many doctors. I hope that all CF kids get this treatment. If not there is something wrong. Danika started here with a super fast respiratory rate, a horrible cough, pancreatic insufficiancy, and o2 at 89%. She's almost back to normal. A normal that I haven't seen in far too long.
I'm not happy for the diagnosis, but I'm happy that there are so many qualified people taking care of her, and teaching us how to do the same. So try to see the light at the end of the tunnel I guess...
Amanda, as for telling your son what's going on... I'm an advocate of full disclosure. your son probably knows more already then you think he does, just from listening to you talk to doctors, family friends ect. The only thing we are leaving out is the possibility of a short life expectancy. I know she will figure that out in her own time, and I don't want that looming over her childhood. It is very present in my mind, which is why I will do my best to give her everything.
There are a couple youtube cartoons directed at kids that might be helpful for you. One is by the CFF, and the other it's UK counterpart. Both explain things very well in kid friendly terms and in a less scary way. just search cystic fibrosis cartoon, and scroll down to the educational clips section. I found those helpful for the other kids in the family aswell, that spend time with danika nd have been coming to visit her here.
Danika has taken to calling her mucus "monsters" and fights much less with her treatments when we remind her what they are for. The vest helps shake the monsters out of their hinding spots, and the nebs help you cough them out. The IV kills them, and the enzymes make you stronger to fight them.
I guess that's it. WOW, I can't believe how much everything has changed in 2 weeks.
Caitlin
As I said, I am so happy I am here. The time period between finding out friday afternoon, and then checking into the childrens hospital saturday morning was horrible. I felt like my baby's life was over. I felt like my life was over. Once I got here, and met with the first set of doctors, the clouds have been clearing day by day. The pulmonary attening and fellow come in every morning and check on Danika and ask us if we have any questions, which we always do... we make a list on the dry erase board in the room. The resident comes in a bit after, and then the whole team comes by around 12 and they do rounds. They describe the case, the plan for treatments, what's working and not working from the days before, and most importantly, when we mioght be able to go home. They are also 100% prepared to support our trip home with in home respiratory therapists to get us started (they are working on getting us a vest) a nutricianist, a social worker, 2 RNs, and many many many doctors. I hope that all CF kids get this treatment. If not there is something wrong. Danika started here with a super fast respiratory rate, a horrible cough, pancreatic insufficiancy, and o2 at 89%. She's almost back to normal. A normal that I haven't seen in far too long.
I'm not happy for the diagnosis, but I'm happy that there are so many qualified people taking care of her, and teaching us how to do the same. So try to see the light at the end of the tunnel I guess...
Amanda, as for telling your son what's going on... I'm an advocate of full disclosure. your son probably knows more already then you think he does, just from listening to you talk to doctors, family friends ect. The only thing we are leaving out is the possibility of a short life expectancy. I know she will figure that out in her own time, and I don't want that looming over her childhood. It is very present in my mind, which is why I will do my best to give her everything.
There are a couple youtube cartoons directed at kids that might be helpful for you. One is by the CFF, and the other it's UK counterpart. Both explain things very well in kid friendly terms and in a less scary way. just search cystic fibrosis cartoon, and scroll down to the educational clips section. I found those helpful for the other kids in the family aswell, that spend time with danika nd have been coming to visit her here.
Danika has taken to calling her mucus "monsters" and fights much less with her treatments when we remind her what they are for. The vest helps shake the monsters out of their hinding spots, and the nebs help you cough them out. The IV kills them, and the enzymes make you stronger to fight them.
I guess that's it. WOW, I can't believe how much everything has changed in 2 weeks.
Caitlin
D
drdanika
Guest
My daughter was diagnosed 2 weeks ago today with a sweat test at 120. We have been in the hospital since the day after we found out... 4 more days til we get to go home (probably)... I just have to say that I am so glad we are here. We went through the last 2 years with faulty asthma diagnosis as well as non-specific childhood diarreah. She was screened as a newborn, the first test positive, the second negative. Since there are so many false positives on the first screening, her pediatrician assumed that was the case for her, and never thought to sweat test. Her chronic cough and frequent respiratory infections were attributed to starting preschool. From this expreriance, and can offer one piece of advice... You are your child's best advocate in health care. If you feel like you are getting the brush off, go somewhere else. If your clinic visit leaves you with more questions then answers, don't let them push you out the door until you are content.
<br />
<br />As I said, I am so happy I am here. The time period between finding out friday afternoon, and then checking into the childrens hospital saturday morning was horrible. I felt like my baby's life was over. I felt like my life was over. Once I got here, and met with the first set of doctors, the clouds have been clearing day by day. The pulmonary attening and fellow come in every morning and check on Danika and ask us if we have any questions, which we always do... we make a list on the dry erase board in the room. The resident comes in a bit after, and then the whole team comes by around 12 and they do rounds. They describe the case, the plan for treatments, what's working and not working from the days before, and most importantly, when we mioght be able to go home. They are also 100% prepared to support our trip home with in home respiratory therapists to get us started (they are working on getting us a vest) a nutricianist, a social worker, 2 RNs, and many many many doctors. I hope that all CF kids get this treatment. If not there is something wrong. Danika started here with a super fast respiratory rate, a horrible cough, pancreatic insufficiancy, and o2 at 89%. She's almost back to normal. A normal that I haven't seen in far too long.
<br />
<br />I'm not happy for the diagnosis, but I'm happy that there are so many qualified people taking care of her, and teaching us how to do the same. So try to see the light at the end of the tunnel I guess...
<br />
<br />Amanda, as for telling your son what's going on... I'm an advocate of full disclosure. your son probably knows more already then you think he does, just from listening to you talk to doctors, family friends ect. The only thing we are leaving out is the possibility of a short life expectancy. I know she will figure that out in her own time, and I don't want that looming over her childhood. It is very present in my mind, which is why I will do my best to give her everything.
<br />
<br />There are a couple youtube cartoons directed at kids that might be helpful for you. One is by the CFF, and the other it's UK counterpart. Both explain things very well in kid friendly terms and in a less scary way. just search cystic fibrosis cartoon, and scroll down to the educational clips section. I found those helpful for the other kids in the family aswell, that spend time with danika nd have been coming to visit her here.
<br />
<br />Danika has taken to calling her mucus "monsters" and fights much less with her treatments when we remind her what they are for. The vest helps shake the monsters out of their hinding spots, and the nebs help you cough them out. The IV kills them, and the enzymes make you stronger to fight them.
<br />
<br />I guess that's it. WOW, I can't believe how much everything has changed in 2 weeks.
<br />
<br />Caitlin
<br />
<br />As I said, I am so happy I am here. The time period between finding out friday afternoon, and then checking into the childrens hospital saturday morning was horrible. I felt like my baby's life was over. I felt like my life was over. Once I got here, and met with the first set of doctors, the clouds have been clearing day by day. The pulmonary attening and fellow come in every morning and check on Danika and ask us if we have any questions, which we always do... we make a list on the dry erase board in the room. The resident comes in a bit after, and then the whole team comes by around 12 and they do rounds. They describe the case, the plan for treatments, what's working and not working from the days before, and most importantly, when we mioght be able to go home. They are also 100% prepared to support our trip home with in home respiratory therapists to get us started (they are working on getting us a vest) a nutricianist, a social worker, 2 RNs, and many many many doctors. I hope that all CF kids get this treatment. If not there is something wrong. Danika started here with a super fast respiratory rate, a horrible cough, pancreatic insufficiancy, and o2 at 89%. She's almost back to normal. A normal that I haven't seen in far too long.
<br />
<br />I'm not happy for the diagnosis, but I'm happy that there are so many qualified people taking care of her, and teaching us how to do the same. So try to see the light at the end of the tunnel I guess...
<br />
<br />Amanda, as for telling your son what's going on... I'm an advocate of full disclosure. your son probably knows more already then you think he does, just from listening to you talk to doctors, family friends ect. The only thing we are leaving out is the possibility of a short life expectancy. I know she will figure that out in her own time, and I don't want that looming over her childhood. It is very present in my mind, which is why I will do my best to give her everything.
<br />
<br />There are a couple youtube cartoons directed at kids that might be helpful for you. One is by the CFF, and the other it's UK counterpart. Both explain things very well in kid friendly terms and in a less scary way. just search cystic fibrosis cartoon, and scroll down to the educational clips section. I found those helpful for the other kids in the family aswell, that spend time with danika nd have been coming to visit her here.
<br />
<br />Danika has taken to calling her mucus "monsters" and fights much less with her treatments when we remind her what they are for. The vest helps shake the monsters out of their hinding spots, and the nebs help you cough them out. The IV kills them, and the enzymes make you stronger to fight them.
<br />
<br />I guess that's it. WOW, I can't believe how much everything has changed in 2 weeks.
<br />
<br />Caitlin