We have a (temporary)diagnosis for Alexandra at last!

AlexsMom

New member
Update on our 15-month old daughter-what a long journey this has been-We had our first appt.w/ our immunologist doc.yesterday. Remember that pulmo doc.wanted her to be seen by him after her bronch.in July,but old pediatrician refused to make referral-Here's the Dx- He suspects transient infancy hypogammaglobulinemia. Her IGG level-which is the main core of your immune system is low- The low normal limit for that is 553,hers is 296. Basically, she has an immature immune system. There will be more specific blood tests, he said he did not feel from her white cells that leukemia is involved, but there is one more serious thing he wants to rule out that can go along w/this. If it is what he suspects, this would resolve itself by the time she is 6-It manifests itself w/chronic sinusitis,ear infection, and respiratory infections. She is now on a 20 day course of Augmetin, in 1 week starts Nasonex nasal spray,Duradryl syrup(antihistamine/decongestant/mucous suppressor),Xopenex as needed w/ pulmocort x 2,also continue on Prevacid. He will start injections of someting in 3 months(pnuemonacocal? maybe) and monitor her builiding of antibodies? She ccan have no live virus immunizations-if she does not repond to antibiotics, they will monthly give her IV globulins(healthy immune stuff?) will finish later,bad lightning/storming -must disconnect lines-thank-you all so much-words are not enough for the strength you gave me to keep pushing and fighting for her-I have not completely laid the Cf question to rest, I will remain optimistic, but guarded-
 

AlexsMom

New member
Update on our 15-month old daughter-what a long journey this has been-We had our first appt.w/ our immunologist doc.yesterday. Remember that pulmo doc.wanted her to be seen by him after her bronch.in July,but old pediatrician refused to make referral-Here's the Dx- He suspects transient infancy hypogammaglobulinemia. Her IGG level-which is the main core of your immune system is low- The low normal limit for that is 553,hers is 296. Basically, she has an immature immune system. There will be more specific blood tests, he said he did not feel from her white cells that leukemia is involved, but there is one more serious thing he wants to rule out that can go along w/this. If it is what he suspects, this would resolve itself by the time she is 6-It manifests itself w/chronic sinusitis,ear infection, and respiratory infections. She is now on a 20 day course of Augmetin, in 1 week starts Nasonex nasal spray,Duradryl syrup(antihistamine/decongestant/mucous suppressor),Xopenex as needed w/ pulmocort x 2,also continue on Prevacid. He will start injections of someting in 3 months(pnuemonacocal? maybe) and monitor her builiding of antibodies? She ccan have no live virus immunizations-if she does not repond to antibiotics, they will monthly give her IV globulins(healthy immune stuff?) will finish later,bad lightning/storming -must disconnect lines-thank-you all so much-words are not enough for the strength you gave me to keep pushing and fighting for her-I have not completely laid the Cf question to rest, I will remain optimistic, but guarded-
 

AlexsMom

New member
Update on our 15-month old daughter-what a long journey this has been-We had our first appt.w/ our immunologist doc.yesterday. Remember that pulmo doc.wanted her to be seen by him after her bronch.in July,but old pediatrician refused to make referral-Here's the Dx- He suspects transient infancy hypogammaglobulinemia. Her IGG level-which is the main core of your immune system is low- The low normal limit for that is 553,hers is 296. Basically, she has an immature immune system. There will be more specific blood tests, he said he did not feel from her white cells that leukemia is involved, but there is one more serious thing he wants to rule out that can go along w/this. If it is what he suspects, this would resolve itself by the time she is 6-It manifests itself w/chronic sinusitis,ear infection, and respiratory infections. She is now on a 20 day course of Augmetin, in 1 week starts Nasonex nasal spray,Duradryl syrup(antihistamine/decongestant/mucous suppressor),Xopenex as needed w/ pulmocort x 2,also continue on Prevacid. He will start injections of someting in 3 months(pnuemonacocal? maybe) and monitor her builiding of antibodies? She ccan have no live virus immunizations-if she does not repond to antibiotics, they will monthly give her IV globulins(healthy immune stuff?) will finish later,bad lightning/storming -must disconnect lines-thank-you all so much-words are not enough for the strength you gave me to keep pushing and fighting for her-I have not completely laid the Cf question to rest, I will remain optimistic, but guarded-
 

AlexsMom

New member
Update on our 15-month old daughter-what a long journey this has been-We had our first appt.w/ our immunologist doc.yesterday. Remember that pulmo doc.wanted her to be seen by him after her bronch.in July,but old pediatrician refused to make referral-Here's the Dx- He suspects transient infancy hypogammaglobulinemia. Her IGG level-which is the main core of your immune system is low- The low normal limit for that is 553,hers is 296. Basically, she has an immature immune system. There will be more specific blood tests, he said he did not feel from her white cells that leukemia is involved, but there is one more serious thing he wants to rule out that can go along w/this. If it is what he suspects, this would resolve itself by the time she is 6-It manifests itself w/chronic sinusitis,ear infection, and respiratory infections. She is now on a 20 day course of Augmetin, in 1 week starts Nasonex nasal spray,Duradryl syrup(antihistamine/decongestant/mucous suppressor),Xopenex as needed w/ pulmocort x 2,also continue on Prevacid. He will start injections of someting in 3 months(pnuemonacocal? maybe) and monitor her builiding of antibodies? She ccan have no live virus immunizations-if she does not repond to antibiotics, they will monthly give her IV globulins(healthy immune stuff?) will finish later,bad lightning/storming -must disconnect lines-thank-you all so much-words are not enough for the strength you gave me to keep pushing and fighting for her-I have not completely laid the Cf question to rest, I will remain optimistic, but guarded-
 

AlexsMom

New member
Update on our 15-month old daughter-what a long journey this has been-We had our first appt.w/ our immunologist doc.yesterday. Remember that pulmo doc.wanted her to be seen by him after her bronch.in July,but old pediatrician refused to make referral-Here's the Dx- He suspects transient infancy hypogammaglobulinemia. Her IGG level-which is the main core of your immune system is low- The low normal limit for that is 553,hers is 296. Basically, she has an immature immune system. There will be more specific blood tests, he said he did not feel from her white cells that leukemia is involved, but there is one more serious thing he wants to rule out that can go along w/this. If it is what he suspects, this would resolve itself by the time she is 6-It manifests itself w/chronic sinusitis,ear infection, and respiratory infections. She is now on a 20 day course of Augmetin, in 1 week starts Nasonex nasal spray,Duradryl syrup(antihistamine/decongestant/mucous suppressor),Xopenex as needed w/ pulmocort x 2,also continue on Prevacid. He will start injections of someting in 3 months(pnuemonacocal? maybe) and monitor her builiding of antibodies? She ccan have no live virus immunizations-if she does not repond to antibiotics, they will monthly give her IV globulins(healthy immune stuff?) will finish later,bad lightning/storming -must disconnect lines-thank-you all so much-words are not enough for the strength you gave me to keep pushing and fighting for her-I have not completely laid the Cf question to rest, I will remain optimistic, but guarded-
 
M

Mommafirst

Guest
A potential diagnosis and a promise for this to eventually clear up are GREAT news!! I'm glad you are finding some answers.
 
M

Mommafirst

Guest
A potential diagnosis and a promise for this to eventually clear up are GREAT news!! I'm glad you are finding some answers.
 
M

Mommafirst

Guest
A potential diagnosis and a promise for this to eventually clear up are GREAT news!! I'm glad you are finding some answers.
 
M

Mommafirst

Guest
A potential diagnosis and a promise for this to eventually clear up are GREAT news!! I'm glad you are finding some answers.
 
M

Mommafirst

Guest
A potential diagnosis and a promise for this to eventually clear up are GREAT news!! I'm glad you are finding some answers.
 

Alyssa

New member
This is very nice news! Wow -- you've learned a lot! I'm so happy you got the the correct doctor, sounds like he is on the right path. Really nice to hear it will get better and go away by age 6!

Did he address the low weight gain? Is it just a result of low immune system, and once you get all of that cleared up the weight gain will follow or is there a digestive component still unanswered for you?

I would like to save some of this basic information (diagnosis, type of doctor, normal IGG level info) in order to pass it along to mothers who might find themselves here in the future ~ very helpful information to know.
 

Alyssa

New member
This is very nice news! Wow -- you've learned a lot! I'm so happy you got the the correct doctor, sounds like he is on the right path. Really nice to hear it will get better and go away by age 6!

Did he address the low weight gain? Is it just a result of low immune system, and once you get all of that cleared up the weight gain will follow or is there a digestive component still unanswered for you?

I would like to save some of this basic information (diagnosis, type of doctor, normal IGG level info) in order to pass it along to mothers who might find themselves here in the future ~ very helpful information to know.
 

Alyssa

New member
This is very nice news! Wow -- you've learned a lot! I'm so happy you got the the correct doctor, sounds like he is on the right path. Really nice to hear it will get better and go away by age 6!

Did he address the low weight gain? Is it just a result of low immune system, and once you get all of that cleared up the weight gain will follow or is there a digestive component still unanswered for you?

I would like to save some of this basic information (diagnosis, type of doctor, normal IGG level info) in order to pass it along to mothers who might find themselves here in the future ~ very helpful information to know.
 

Alyssa

New member
This is very nice news! Wow -- you've learned a lot! I'm so happy you got the the correct doctor, sounds like he is on the right path. Really nice to hear it will get better and go away by age 6!

Did he address the low weight gain? Is it just a result of low immune system, and once you get all of that cleared up the weight gain will follow or is there a digestive component still unanswered for you?

I would like to save some of this basic information (diagnosis, type of doctor, normal IGG level info) in order to pass it along to mothers who might find themselves here in the future ~ very helpful information to know.
 

Alyssa

New member
This is very nice news! Wow -- you've learned a lot! I'm so happy you got the the correct doctor, sounds like he is on the right path. Really nice to hear it will get better and go away by age 6!

Did he address the low weight gain? Is it just a result of low immune system, and once you get all of that cleared up the weight gain will follow or is there a digestive component still unanswered for you?

I would like to save some of this basic information (diagnosis, type of doctor, normal IGG level info) in order to pass it along to mothers who might find themselves here in the future ~ very helpful information to know.
 
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