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Papilledema-related to growth hormone injections

R

ReneeP

New member
My 12 year old (Kaitlyn) has been on Genotropin (growth hormone) since September with no problems. Last Friday (9 days ago) she started having headaches. By Monday they just weren't getting any better and I remembered that when they put her on Genotropin that was one problem we needed to watch for. I called the Endocrinologist figuring it was a long shot, but wanted to let them know what was going on.

The endo called me back and ordered me to take her to an Opthomologist to check her for Papilledema (swollen optic nerve)... well, to make a long story short, her optic nerve was swollen and we were sent to the ER for a CT Scan. That was done in my home town and they didn't see anything on the CT scan and sent us home.

The headaches continued and I called the endo again and we were told to go back to the ER. I opted to drive her to Ft Worth (where our clinic is, 5 1/2 hours away) because I don't trust the local hospital here. Well, we did that this past Friday and the doctor there did a spinal tap and was blown away. He said he had never seen a patient have as much pressure on her brain as she did (and he does at least 5 of these a day). He filled 5 vials with fluid he drained out of her.

Everyone is still assuming that this is all related to the growth hormone. It is a known side effect, though very rare, and almost always happens in the first few weeks of being on it. She has been on it for over 8 months. The Endo's nurse practicioner said that she has only seen 4 cases in her career and only 1 of them needed to have a spinal tap done. I am having doubts as to what is really happening here.

The ER dr put her on Diamox to control the amount of fluid her body is producing. He also ordered an MRI with MRV (I think that's what it's called). We are to do that next week and follow up with the neurologist next month.

Kaitlyn is obviously having a hard time dealing with all this.. besides being a 12 year old girl, which is hard enough, she was hospitalized for 2 weeks during Christmas where she was extremely ill (pft's dropped 80% for no apparent reason), was diagnosed with CFRD, then in March cultured Pseudomonias, and now this...

Has anyone had anything like this before? or at least know anything about it? I am afraid they are missing something or that something bad is going to happen before we go back. They said it should go away on it's own but will take up to 2 months... I'm not sure what to do in the meantime...

Sorry this ended up being so long... and thanks for any info you can share...
 
R

ReneeP

New member
My 12 year old (Kaitlyn) has been on Genotropin (growth hormone) since September with no problems. Last Friday (9 days ago) she started having headaches. By Monday they just weren't getting any better and I remembered that when they put her on Genotropin that was one problem we needed to watch for. I called the Endocrinologist figuring it was a long shot, but wanted to let them know what was going on.

The endo called me back and ordered me to take her to an Opthomologist to check her for Papilledema (swollen optic nerve)... well, to make a long story short, her optic nerve was swollen and we were sent to the ER for a CT Scan. That was done in my home town and they didn't see anything on the CT scan and sent us home.

The headaches continued and I called the endo again and we were told to go back to the ER. I opted to drive her to Ft Worth (where our clinic is, 5 1/2 hours away) because I don't trust the local hospital here. Well, we did that this past Friday and the doctor there did a spinal tap and was blown away. He said he had never seen a patient have as much pressure on her brain as she did (and he does at least 5 of these a day). He filled 5 vials with fluid he drained out of her.

Everyone is still assuming that this is all related to the growth hormone. It is a known side effect, though very rare, and almost always happens in the first few weeks of being on it. She has been on it for over 8 months. The Endo's nurse practicioner said that she has only seen 4 cases in her career and only 1 of them needed to have a spinal tap done. I am having doubts as to what is really happening here.

The ER dr put her on Diamox to control the amount of fluid her body is producing. He also ordered an MRI with MRV (I think that's what it's called). We are to do that next week and follow up with the neurologist next month.

Kaitlyn is obviously having a hard time dealing with all this.. besides being a 12 year old girl, which is hard enough, she was hospitalized for 2 weeks during Christmas where she was extremely ill (pft's dropped 80% for no apparent reason), was diagnosed with CFRD, then in March cultured Pseudomonias, and now this...

Has anyone had anything like this before? or at least know anything about it? I am afraid they are missing something or that something bad is going to happen before we go back. They said it should go away on it's own but will take up to 2 months... I'm not sure what to do in the meantime...

Sorry this ended up being so long... and thanks for any info you can share...
 
R

ReneeP

New member
My 12 year old (Kaitlyn) has been on Genotropin (growth hormone) since September with no problems. Last Friday (9 days ago) she started having headaches. By Monday they just weren't getting any better and I remembered that when they put her on Genotropin that was one problem we needed to watch for. I called the Endocrinologist figuring it was a long shot, but wanted to let them know what was going on.

The endo called me back and ordered me to take her to an Opthomologist to check her for Papilledema (swollen optic nerve)... well, to make a long story short, her optic nerve was swollen and we were sent to the ER for a CT Scan. That was done in my home town and they didn't see anything on the CT scan and sent us home.

The headaches continued and I called the endo again and we were told to go back to the ER. I opted to drive her to Ft Worth (where our clinic is, 5 1/2 hours away) because I don't trust the local hospital here. Well, we did that this past Friday and the doctor there did a spinal tap and was blown away. He said he had never seen a patient have as much pressure on her brain as she did (and he does at least 5 of these a day). He filled 5 vials with fluid he drained out of her.

Everyone is still assuming that this is all related to the growth hormone. It is a known side effect, though very rare, and almost always happens in the first few weeks of being on it. She has been on it for over 8 months. The Endo's nurse practicioner said that she has only seen 4 cases in her career and only 1 of them needed to have a spinal tap done. I am having doubts as to what is really happening here.

The ER dr put her on Diamox to control the amount of fluid her body is producing. He also ordered an MRI with MRV (I think that's what it's called). We are to do that next week and follow up with the neurologist next month.

Kaitlyn is obviously having a hard time dealing with all this.. besides being a 12 year old girl, which is hard enough, she was hospitalized for 2 weeks during Christmas where she was extremely ill (pft's dropped 80% for no apparent reason), was diagnosed with CFRD, then in March cultured Pseudomonias, and now this...

Has anyone had anything like this before? or at least know anything about it? I am afraid they are missing something or that something bad is going to happen before we go back. They said it should go away on it's own but will take up to 2 months... I'm not sure what to do in the meantime...

Sorry this ended up being so long... and thanks for any info you can share...
 
R

ReneeP

New member
Oh, just wanted to add that we immediately stopped the Genotropin... she hasn't had a shot in 8 days...and she will not be going back on it.
 
R

ReneeP

New member
Oh, just wanted to add that we immediately stopped the Genotropin... she hasn't had a shot in 8 days...and she will not be going back on it.
 
R

ReneeP

New member
Oh, just wanted to add that we immediately stopped the Genotropin... she hasn't had a shot in 8 days...and she will not be going back on it.
 
M

Mommafirst

Guest
Ok Renee, I don't have CF, but I did have a very similar situation occur in my life, I don't know if this information will matter, but since it might I'll share it.

When I was 22 I saw an opthomologist because I was having bad headaches and felt that my vision was going black from the sides in when I stood up. I thought maybe it was diabetes, but the eye doctor saw papledemia. He sent me to a neurologist, who did an MRI (clear) and then did a spinal tap. They told me a pretty similar story to what they told you about your daughter. In fact, they said that the pressure of the excess cerebral spinal fluid blew the measurement tool right off the tap. I was NOT on any human growth hormones, was not on anything actually. I was diagnosed with Pseudo Tumor Cerebrae. I was treated with diamox for about 2 years and eventually the headaches went away and my vision restored. It was a weird experience and very scary, but luckily it went away over time.

I don't know if your daughter's experience is different because of the HGH. Or if its different because of her CF. But considering her symptoms, it would seem highly likely that someone would want to consider Pseudo Tumor Cerebrae. From my understanding its extremely rare, and most anyone could get it, but it is most common in females of childbearing ages. It is not supposedly genetic or contagious, but my sister (who lived across the country from me at the time) also had it. There wasn't much information about it when I was diagnosed, but I'm sure the internet being what it is now, there is probably lots of information.
 
M

Mommafirst

Guest
Ok Renee, I don't have CF, but I did have a very similar situation occur in my life, I don't know if this information will matter, but since it might I'll share it.

When I was 22 I saw an opthomologist because I was having bad headaches and felt that my vision was going black from the sides in when I stood up. I thought maybe it was diabetes, but the eye doctor saw papledemia. He sent me to a neurologist, who did an MRI (clear) and then did a spinal tap. They told me a pretty similar story to what they told you about your daughter. In fact, they said that the pressure of the excess cerebral spinal fluid blew the measurement tool right off the tap. I was NOT on any human growth hormones, was not on anything actually. I was diagnosed with Pseudo Tumor Cerebrae. I was treated with diamox for about 2 years and eventually the headaches went away and my vision restored. It was a weird experience and very scary, but luckily it went away over time.

I don't know if your daughter's experience is different because of the HGH. Or if its different because of her CF. But considering her symptoms, it would seem highly likely that someone would want to consider Pseudo Tumor Cerebrae. From my understanding its extremely rare, and most anyone could get it, but it is most common in females of childbearing ages. It is not supposedly genetic or contagious, but my sister (who lived across the country from me at the time) also had it. There wasn't much information about it when I was diagnosed, but I'm sure the internet being what it is now, there is probably lots of information.
 
M

Mommafirst

Guest
Ok Renee, I don't have CF, but I did have a very similar situation occur in my life, I don't know if this information will matter, but since it might I'll share it.

When I was 22 I saw an opthomologist because I was having bad headaches and felt that my vision was going black from the sides in when I stood up. I thought maybe it was diabetes, but the eye doctor saw papledemia. He sent me to a neurologist, who did an MRI (clear) and then did a spinal tap. They told me a pretty similar story to what they told you about your daughter. In fact, they said that the pressure of the excess cerebral spinal fluid blew the measurement tool right off the tap. I was NOT on any human growth hormones, was not on anything actually. I was diagnosed with Pseudo Tumor Cerebrae. I was treated with diamox for about 2 years and eventually the headaches went away and my vision restored. It was a weird experience and very scary, but luckily it went away over time.

I don't know if your daughter's experience is different because of the HGH. Or if its different because of her CF. But considering her symptoms, it would seem highly likely that someone would want to consider Pseudo Tumor Cerebrae. From my understanding its extremely rare, and most anyone could get it, but it is most common in females of childbearing ages. It is not supposedly genetic or contagious, but my sister (who lived across the country from me at the time) also had it. There wasn't much information about it when I was diagnosed, but I'm sure the internet being what it is now, there is probably lots of information.
 
J

JennifersHope

New member
Hi,

I actually did have the papilledema, I had the most severe headaches of my life. I ended up getting spinal taps which greatly reduced the pain in my head... It got to the point that I was begging for the spinal taps..

I was dx with Addisons disease right after I had the headaches.. I am at work right now and real swamped.> We seem to be running a special in car accidents tonight so I will post more later when I get home.. I have a lot to say about it.

Jennifer
 
J

JennifersHope

New member
Hi,

I actually did have the papilledema, I had the most severe headaches of my life. I ended up getting spinal taps which greatly reduced the pain in my head... It got to the point that I was begging for the spinal taps..

I was dx with Addisons disease right after I had the headaches.. I am at work right now and real swamped.> We seem to be running a special in car accidents tonight so I will post more later when I get home.. I have a lot to say about it.

Jennifer
 
J

JennifersHope

New member
Hi,

I actually did have the papilledema, I had the most severe headaches of my life. I ended up getting spinal taps which greatly reduced the pain in my head... It got to the point that I was begging for the spinal taps..

I was dx with Addisons disease right after I had the headaches.. I am at work right now and real swamped.> We seem to be running a special in car accidents tonight so I will post more later when I get home.. I have a lot to say about it.

Jennifer
 
R

ReneeP

New member
Thanks so much for your responses. I was afraid no one would know anything about this.

They actually did tell me she had Pseudotumor Cerebri... though somehow they are still linking it to the growth hormone. I have done a lot of research on the subject today and it's pretty much exactly what you describe. Kaitlyn isn't typical of the people this happens to as she is only 12 years old.

Oh, and Kaitlyn basically blew the top of the measuring thing off too. The dr asked the paramedic to hand him another tube to put on top of the first one (this will make sense if you've seen one done) and I asked the dr "is it normal to need another one..." he said "I have NEVER needed a second one." He said her pressure was more than twice the normal amount.

Now she is having headaches from the spinal tap. In doing research that's pretty typical in the first 3-4 days after the tap. They come on something terrible when she is standing up (she literally screams in pain) but they go away pretty quickly when she lays down. Hopefully she will be fine in a few days.

I look forward to reading what you have to say, Jennifer... Anything I can read on this makes me feel less alone...

Thanks again to both of you.
 
R

ReneeP

New member
Thanks so much for your responses. I was afraid no one would know anything about this.

They actually did tell me she had Pseudotumor Cerebri... though somehow they are still linking it to the growth hormone. I have done a lot of research on the subject today and it's pretty much exactly what you describe. Kaitlyn isn't typical of the people this happens to as she is only 12 years old.

Oh, and Kaitlyn basically blew the top of the measuring thing off too. The dr asked the paramedic to hand him another tube to put on top of the first one (this will make sense if you've seen one done) and I asked the dr "is it normal to need another one..." he said "I have NEVER needed a second one." He said her pressure was more than twice the normal amount.

Now she is having headaches from the spinal tap. In doing research that's pretty typical in the first 3-4 days after the tap. They come on something terrible when she is standing up (she literally screams in pain) but they go away pretty quickly when she lays down. Hopefully she will be fine in a few days.

I look forward to reading what you have to say, Jennifer... Anything I can read on this makes me feel less alone...

Thanks again to both of you.
 
R

ReneeP

New member
Thanks so much for your responses. I was afraid no one would know anything about this.

They actually did tell me she had Pseudotumor Cerebri... though somehow they are still linking it to the growth hormone. I have done a lot of research on the subject today and it's pretty much exactly what you describe. Kaitlyn isn't typical of the people this happens to as she is only 12 years old.

Oh, and Kaitlyn basically blew the top of the measuring thing off too. The dr asked the paramedic to hand him another tube to put on top of the first one (this will make sense if you've seen one done) and I asked the dr "is it normal to need another one..." he said "I have NEVER needed a second one." He said her pressure was more than twice the normal amount.

Now she is having headaches from the spinal tap. In doing research that's pretty typical in the first 3-4 days after the tap. They come on something terrible when she is standing up (she literally screams in pain) but they go away pretty quickly when she lays down. Hopefully she will be fine in a few days.

I look forward to reading what you have to say, Jennifer... Anything I can read on this makes me feel less alone...

Thanks again to both of you.
 
J

JennifersHope

New member
Yes that is exactly what I had as well The Pseduo_Tumor Cerbri.. They were not sure what caused it in me, they think it was related to my adrenal glands throwing off to much hormones before it decided to conk out.

I was in Columbia hospital for two weeks.. and then ended up getting spinal tapped three times a week for a few weeks.

I ended up getting a shunt put in for a few weeks that drained the fluid back into my stomach.

I was on diamox as well but had to come off of it because my adrenals crapped out and you can't take it with that....

I really am trying to respond fastly to you but I am at work, and I am being scattered in my thoughts..

I only had that one episode with it but they did think it was erthomyacin that could have caused it in me as well...

As far as the spinal tap headaches it is very important that she lay flat for a few hours after they tap her... that should help with the headache..

My step mom used to put the carseat flat and I would lay flat all the way home from NYC.....

I will reread what I posted when I get home and try to add anything I forgot

Jennifer
 
J

JennifersHope

New member
Yes that is exactly what I had as well The Pseduo_Tumor Cerbri.. They were not sure what caused it in me, they think it was related to my adrenal glands throwing off to much hormones before it decided to conk out.

I was in Columbia hospital for two weeks.. and then ended up getting spinal tapped three times a week for a few weeks.

I ended up getting a shunt put in for a few weeks that drained the fluid back into my stomach.

I was on diamox as well but had to come off of it because my adrenals crapped out and you can't take it with that....

I really am trying to respond fastly to you but I am at work, and I am being scattered in my thoughts..

I only had that one episode with it but they did think it was erthomyacin that could have caused it in me as well...

As far as the spinal tap headaches it is very important that she lay flat for a few hours after they tap her... that should help with the headache..

My step mom used to put the carseat flat and I would lay flat all the way home from NYC.....

I will reread what I posted when I get home and try to add anything I forgot

Jennifer
 
J

JennifersHope

New member
Yes that is exactly what I had as well The Pseduo_Tumor Cerbri.. They were not sure what caused it in me, they think it was related to my adrenal glands throwing off to much hormones before it decided to conk out.

I was in Columbia hospital for two weeks.. and then ended up getting spinal tapped three times a week for a few weeks.

I ended up getting a shunt put in for a few weeks that drained the fluid back into my stomach.

I was on diamox as well but had to come off of it because my adrenals crapped out and you can't take it with that....

I really am trying to respond fastly to you but I am at work, and I am being scattered in my thoughts..

I only had that one episode with it but they did think it was erthomyacin that could have caused it in me as well...

As far as the spinal tap headaches it is very important that she lay flat for a few hours after they tap her... that should help with the headache..

My step mom used to put the carseat flat and I would lay flat all the way home from NYC.....

I will reread what I posted when I get home and try to add anything I forgot

Jennifer
 
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