Feedback: Carrier only w/stomach issues (my sister)

mom2lillian

New member
Ok there is no way I can keep this short so forgive me. My sister is 15 she has been diabetic since 7. She has NEVER been able to have good control of her blood sugars even when she did try. What happens if you try and try and cant do something? You stop caring. Last year she had an A1C of 13, for those of you not familiar its horrendous and is an average blood sugar of close to 400--one chart refers to it as 'suicidal'. She has also always had a vomiting problem, not often enough for the doctors to ever figure out what it is just here or there throwing up. As she got older it is more common but she also has less control over her BS thus making that the cause in the doctors minds.

Ok so now she has been in ICU 3 times in past 6 months for uncontrollable vomiting which promptly throws her into ketoacidosis as well. However the vomiting comes before the ketones. The first couple times they assumed the BS issue preceded the vomiting. Eventually with alot hard work from my mom and an increased tracking my sister was doing better with her blood sugars and the next episode a few months ago my mom 'proved' that the vomiting was first. So she talked to them about this becomign a re-occuring pattern over past eyar and she needed something done. They saw that she was very very full of stool and RX her miralax saying that was probably part of the problem. She had been on miralax in the past and it didnt work.

So now fast forward to the end of January she has been sick ALL the time lately in addition to the stomach and blood sugar issues she is just always sleeping (this has been going on for years) and she is now very depressed and getting some treatment for that. She was however doing a bit better on blood sugars and taking the miralax and this pattern continued.

She was hospitalized 3 weekends ago when my mom was at work my brother found her in the hallway vomiting uncontrollably and got scared and called ambulance. So again off to teh ICU with no results. After spending a wekeend in the hospital and a follow up with her family doctor they finally said they would get her back into the pediatric gastro (she hadnt been there in years). Her doctor said she woudl call to try and get her in sooner as my mom hadnt been able to get her in for months out.

My mom is VERY meek and so each day I call and there is 'no word'. My mom is waking up every 1.5 hours monitoring blood sugar around the clock.


My sister is unable to hold down food on a consistent basis, her throat is swollen and she has a horrid cough most likely from all the acid, because of the food situation ehr blood sugars are all over teh place from either delaying insulin to see if she throws up or taking it right away and then throwing up. She is super tired of course and an absolute mess emotionally. I finally decide to pose as my mom and make calls with her permission (my mom works in a factory with no cell phone reception and out of state, it takes her 10 minutes just to get out of the building from her station and her lunch hour is 30 minutes so good luck getting any doctor calls resolved).

The doctors office got her an appintment for MAY they cant get her in any sooner. I ask exactly how urgent it needs to be in order for her to be seen?

ANyway I got her an appointment with my gastro which is only adults but she is 16, close enough.

<b>She vomits all the time, has a ton of pain when she can eat and keep food down and has BM's that are almost gelatenous alot of times. Any thoughts??</b>
 

mom2lillian

New member
Ok there is no way I can keep this short so forgive me. My sister is 15 she has been diabetic since 7. She has NEVER been able to have good control of her blood sugars even when she did try. What happens if you try and try and cant do something? You stop caring. Last year she had an A1C of 13, for those of you not familiar its horrendous and is an average blood sugar of close to 400--one chart refers to it as 'suicidal'. She has also always had a vomiting problem, not often enough for the doctors to ever figure out what it is just here or there throwing up. As she got older it is more common but she also has less control over her BS thus making that the cause in the doctors minds.

Ok so now she has been in ICU 3 times in past 6 months for uncontrollable vomiting which promptly throws her into ketoacidosis as well. However the vomiting comes before the ketones. The first couple times they assumed the BS issue preceded the vomiting. Eventually with alot hard work from my mom and an increased tracking my sister was doing better with her blood sugars and the next episode a few months ago my mom 'proved' that the vomiting was first. So she talked to them about this becomign a re-occuring pattern over past eyar and she needed something done. They saw that she was very very full of stool and RX her miralax saying that was probably part of the problem. She had been on miralax in the past and it didnt work.

So now fast forward to the end of January she has been sick ALL the time lately in addition to the stomach and blood sugar issues she is just always sleeping (this has been going on for years) and she is now very depressed and getting some treatment for that. She was however doing a bit better on blood sugars and taking the miralax and this pattern continued.

She was hospitalized 3 weekends ago when my mom was at work my brother found her in the hallway vomiting uncontrollably and got scared and called ambulance. So again off to teh ICU with no results. After spending a wekeend in the hospital and a follow up with her family doctor they finally said they would get her back into the pediatric gastro (she hadnt been there in years). Her doctor said she woudl call to try and get her in sooner as my mom hadnt been able to get her in for months out.

My mom is VERY meek and so each day I call and there is 'no word'. My mom is waking up every 1.5 hours monitoring blood sugar around the clock.


My sister is unable to hold down food on a consistent basis, her throat is swollen and she has a horrid cough most likely from all the acid, because of the food situation ehr blood sugars are all over teh place from either delaying insulin to see if she throws up or taking it right away and then throwing up. She is super tired of course and an absolute mess emotionally. I finally decide to pose as my mom and make calls with her permission (my mom works in a factory with no cell phone reception and out of state, it takes her 10 minutes just to get out of the building from her station and her lunch hour is 30 minutes so good luck getting any doctor calls resolved).

The doctors office got her an appintment for MAY they cant get her in any sooner. I ask exactly how urgent it needs to be in order for her to be seen?

ANyway I got her an appointment with my gastro which is only adults but she is 16, close enough.

<b>She vomits all the time, has a ton of pain when she can eat and keep food down and has BM's that are almost gelatenous alot of times. Any thoughts??</b>
 

mom2lillian

New member
Ok there is no way I can keep this short so forgive me. My sister is 15 she has been diabetic since 7. She has NEVER been able to have good control of her blood sugars even when she did try. What happens if you try and try and cant do something? You stop caring. Last year she had an A1C of 13, for those of you not familiar its horrendous and is an average blood sugar of close to 400--one chart refers to it as 'suicidal'. She has also always had a vomiting problem, not often enough for the doctors to ever figure out what it is just here or there throwing up. As she got older it is more common but she also has less control over her BS thus making that the cause in the doctors minds.

Ok so now she has been in ICU 3 times in past 6 months for uncontrollable vomiting which promptly throws her into ketoacidosis as well. However the vomiting comes before the ketones. The first couple times they assumed the BS issue preceded the vomiting. Eventually with alot hard work from my mom and an increased tracking my sister was doing better with her blood sugars and the next episode a few months ago my mom 'proved' that the vomiting was first. So she talked to them about this becomign a re-occuring pattern over past eyar and she needed something done. They saw that she was very very full of stool and RX her miralax saying that was probably part of the problem. She had been on miralax in the past and it didnt work.

So now fast forward to the end of January she has been sick ALL the time lately in addition to the stomach and blood sugar issues she is just always sleeping (this has been going on for years) and she is now very depressed and getting some treatment for that. She was however doing a bit better on blood sugars and taking the miralax and this pattern continued.

She was hospitalized 3 weekends ago when my mom was at work my brother found her in the hallway vomiting uncontrollably and got scared and called ambulance. So again off to teh ICU with no results. After spending a wekeend in the hospital and a follow up with her family doctor they finally said they would get her back into the pediatric gastro (she hadnt been there in years). Her doctor said she woudl call to try and get her in sooner as my mom hadnt been able to get her in for months out.

My mom is VERY meek and so each day I call and there is 'no word'. My mom is waking up every 1.5 hours monitoring blood sugar around the clock.


My sister is unable to hold down food on a consistent basis, her throat is swollen and she has a horrid cough most likely from all the acid, because of the food situation ehr blood sugars are all over teh place from either delaying insulin to see if she throws up or taking it right away and then throwing up. She is super tired of course and an absolute mess emotionally. I finally decide to pose as my mom and make calls with her permission (my mom works in a factory with no cell phone reception and out of state, it takes her 10 minutes just to get out of the building from her station and her lunch hour is 30 minutes so good luck getting any doctor calls resolved).

The doctors office got her an appintment for MAY they cant get her in any sooner. I ask exactly how urgent it needs to be in order for her to be seen?

ANyway I got her an appointment with my gastro which is only adults but she is 16, close enough.

<b>She vomits all the time, has a ton of pain when she can eat and keep food down and has BM's that are almost gelatenous alot of times. Any thoughts??</b>
 

mom2lillian

New member
Ok there is no way I can keep this short so forgive me. My sister is 15 she has been diabetic since 7. She has NEVER been able to have good control of her blood sugars even when she did try. What happens if you try and try and cant do something? You stop caring. Last year she had an A1C of 13, for those of you not familiar its horrendous and is an average blood sugar of close to 400--one chart refers to it as 'suicidal'. She has also always had a vomiting problem, not often enough for the doctors to ever figure out what it is just here or there throwing up. As she got older it is more common but she also has less control over her BS thus making that the cause in the doctors minds.

Ok so now she has been in ICU 3 times in past 6 months for uncontrollable vomiting which promptly throws her into ketoacidosis as well. However the vomiting comes before the ketones. The first couple times they assumed the BS issue preceded the vomiting. Eventually with alot hard work from my mom and an increased tracking my sister was doing better with her blood sugars and the next episode a few months ago my mom 'proved' that the vomiting was first. So she talked to them about this becomign a re-occuring pattern over past eyar and she needed something done. They saw that she was very very full of stool and RX her miralax saying that was probably part of the problem. She had been on miralax in the past and it didnt work.

So now fast forward to the end of January she has been sick ALL the time lately in addition to the stomach and blood sugar issues she is just always sleeping (this has been going on for years) and she is now very depressed and getting some treatment for that. She was however doing a bit better on blood sugars and taking the miralax and this pattern continued.

She was hospitalized 3 weekends ago when my mom was at work my brother found her in the hallway vomiting uncontrollably and got scared and called ambulance. So again off to teh ICU with no results. After spending a wekeend in the hospital and a follow up with her family doctor they finally said they would get her back into the pediatric gastro (she hadnt been there in years). Her doctor said she woudl call to try and get her in sooner as my mom hadnt been able to get her in for months out.

My mom is VERY meek and so each day I call and there is 'no word'. My mom is waking up every 1.5 hours monitoring blood sugar around the clock.


My sister is unable to hold down food on a consistent basis, her throat is swollen and she has a horrid cough most likely from all the acid, because of the food situation ehr blood sugars are all over teh place from either delaying insulin to see if she throws up or taking it right away and then throwing up. She is super tired of course and an absolute mess emotionally. I finally decide to pose as my mom and make calls with her permission (my mom works in a factory with no cell phone reception and out of state, it takes her 10 minutes just to get out of the building from her station and her lunch hour is 30 minutes so good luck getting any doctor calls resolved).

The doctors office got her an appintment for MAY they cant get her in any sooner. I ask exactly how urgent it needs to be in order for her to be seen?

ANyway I got her an appointment with my gastro which is only adults but she is 16, close enough.

<b>She vomits all the time, has a ton of pain when she can eat and keep food down and has BM's that are almost gelatenous alot of times. Any thoughts??</b>
 

mom2lillian

New member
Ok there is no way I can keep this short so forgive me. My sister is 15 she has been diabetic since 7. She has NEVER been able to have good control of her blood sugars even when she did try. What happens if you try and try and cant do something? You stop caring. Last year she had an A1C of 13, for those of you not familiar its horrendous and is an average blood sugar of close to 400--one chart refers to it as 'suicidal'. She has also always had a vomiting problem, not often enough for the doctors to ever figure out what it is just here or there throwing up. As she got older it is more common but she also has less control over her BS thus making that the cause in the doctors minds.
<br />
<br />Ok so now she has been in ICU 3 times in past 6 months for uncontrollable vomiting which promptly throws her into ketoacidosis as well. However the vomiting comes before the ketones. The first couple times they assumed the BS issue preceded the vomiting. Eventually with alot hard work from my mom and an increased tracking my sister was doing better with her blood sugars and the next episode a few months ago my mom 'proved' that the vomiting was first. So she talked to them about this becomign a re-occuring pattern over past eyar and she needed something done. They saw that she was very very full of stool and RX her miralax saying that was probably part of the problem. She had been on miralax in the past and it didnt work.
<br />
<br />So now fast forward to the end of January she has been sick ALL the time lately in addition to the stomach and blood sugar issues she is just always sleeping (this has been going on for years) and she is now very depressed and getting some treatment for that. She was however doing a bit better on blood sugars and taking the miralax and this pattern continued.
<br />
<br />She was hospitalized 3 weekends ago when my mom was at work my brother found her in the hallway vomiting uncontrollably and got scared and called ambulance. So again off to teh ICU with no results. After spending a wekeend in the hospital and a follow up with her family doctor they finally said they would get her back into the pediatric gastro (she hadnt been there in years). Her doctor said she woudl call to try and get her in sooner as my mom hadnt been able to get her in for months out.
<br />
<br />My mom is VERY meek and so each day I call and there is 'no word'. My mom is waking up every 1.5 hours monitoring blood sugar around the clock.
<br />
<br />
<br />My sister is unable to hold down food on a consistent basis, her throat is swollen and she has a horrid cough most likely from all the acid, because of the food situation ehr blood sugars are all over teh place from either delaying insulin to see if she throws up or taking it right away and then throwing up. She is super tired of course and an absolute mess emotionally. I finally decide to pose as my mom and make calls with her permission (my mom works in a factory with no cell phone reception and out of state, it takes her 10 minutes just to get out of the building from her station and her lunch hour is 30 minutes so good luck getting any doctor calls resolved).
<br />
<br />The doctors office got her an appintment for MAY they cant get her in any sooner. I ask exactly how urgent it needs to be in order for her to be seen?
<br />
<br />ANyway I got her an appointment with my gastro which is only adults but she is 16, close enough.
<br />
<br /><b>She vomits all the time, has a ton of pain when she can eat and keep food down and has BM's that are almost gelatenous alot of times. Any thoughts??</b>
 

saveferris2009

New member
Send her to another gastro who has an appt sooner.

Either that or show up in your gastro's office with her and sit there all day long, showing them how serious you are about being seen ASAP. I'm serious.
 

saveferris2009

New member
Send her to another gastro who has an appt sooner.

Either that or show up in your gastro's office with her and sit there all day long, showing them how serious you are about being seen ASAP. I'm serious.
 

saveferris2009

New member
Send her to another gastro who has an appt sooner.

Either that or show up in your gastro's office with her and sit there all day long, showing them how serious you are about being seen ASAP. I'm serious.
 

saveferris2009

New member
Send her to another gastro who has an appt sooner.

Either that or show up in your gastro's office with her and sit there all day long, showing them how serious you are about being seen ASAP. I'm serious.
 

saveferris2009

New member
Send her to another gastro who has an appt sooner.
<br />
<br />Either that or show up in your gastro's office with her and sit there all day long, showing them how serious you are about being seen ASAP. I'm serious.
 

JennifersHope

New member
I agree with Amy.. The only way I was able to get dx with Addison's disease was to drive myself to a very good hospital in New York City and walk into the emergency room and get treatment..

Don't let it wait... Even if you have to drive a distance, drive to a good teaching hospital and get her the help she needs.. Waiting until may is not an option

I am sorry you are going through this, that is horrible
 

JennifersHope

New member
I agree with Amy.. The only way I was able to get dx with Addison's disease was to drive myself to a very good hospital in New York City and walk into the emergency room and get treatment..

Don't let it wait... Even if you have to drive a distance, drive to a good teaching hospital and get her the help she needs.. Waiting until may is not an option

I am sorry you are going through this, that is horrible
 

JennifersHope

New member
I agree with Amy.. The only way I was able to get dx with Addison's disease was to drive myself to a very good hospital in New York City and walk into the emergency room and get treatment..

Don't let it wait... Even if you have to drive a distance, drive to a good teaching hospital and get her the help she needs.. Waiting until may is not an option

I am sorry you are going through this, that is horrible
 

JennifersHope

New member
I agree with Amy.. The only way I was able to get dx with Addison's disease was to drive myself to a very good hospital in New York City and walk into the emergency room and get treatment..

Don't let it wait... Even if you have to drive a distance, drive to a good teaching hospital and get her the help she needs.. Waiting until may is not an option

I am sorry you are going through this, that is horrible
 

JennifersHope

New member
I agree with Amy.. The only way I was able to get dx with Addison's disease was to drive myself to a very good hospital in New York City and walk into the emergency room and get treatment..
<br />
<br />Don't let it wait... Even if you have to drive a distance, drive to a good teaching hospital and get her the help she needs.. Waiting until may is not an option
<br />
<br />I am sorry you are going through this, that is horrible
 

mom2lillian

New member
oh sorry I was so redline when writing this she IS finally being seen by MY gastro I was so furious that a doctor can claim to be there to 'heal' people and can after finding out how serius she was say NOPE sorry May 26. Geez.

They think they know what it is waiting on some test results, biopsies and another test next week but I wanted to see people here perspective since alot times carriers can have some CF stuff going on and I dont think a doc will be looking for that.

thanks
 

mom2lillian

New member
oh sorry I was so redline when writing this she IS finally being seen by MY gastro I was so furious that a doctor can claim to be there to 'heal' people and can after finding out how serius she was say NOPE sorry May 26. Geez.

They think they know what it is waiting on some test results, biopsies and another test next week but I wanted to see people here perspective since alot times carriers can have some CF stuff going on and I dont think a doc will be looking for that.

thanks
 

mom2lillian

New member
oh sorry I was so redline when writing this she IS finally being seen by MY gastro I was so furious that a doctor can claim to be there to 'heal' people and can after finding out how serius she was say NOPE sorry May 26. Geez.

They think they know what it is waiting on some test results, biopsies and another test next week but I wanted to see people here perspective since alot times carriers can have some CF stuff going on and I dont think a doc will be looking for that.

thanks
 

mom2lillian

New member
oh sorry I was so redline when writing this she IS finally being seen by MY gastro I was so furious that a doctor can claim to be there to 'heal' people and can after finding out how serius she was say NOPE sorry May 26. Geez.

They think they know what it is waiting on some test results, biopsies and another test next week but I wanted to see people here perspective since alot times carriers can have some CF stuff going on and I dont think a doc will be looking for that.

thanks
 

mom2lillian

New member
oh sorry I was so redline when writing this she IS finally being seen by MY gastro I was so furious that a doctor can claim to be there to 'heal' people and can after finding out how serius she was say NOPE sorry May 26. Geez.
<br />
<br />They think they know what it is waiting on some test results, biopsies and another test next week but I wanted to see people here perspective since alot times carriers can have some CF stuff going on and I dont think a doc will be looking for that.
<br />
<br />thanks
 
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