Negative initial genetic testing

V

valigirl21

Guest
What happened was he was dx w/ AU shortly before he turned 8. We attributed his small stature to a combo of ADHD meds and just being short. His weight was attributed to his father being very thin. Then his growth and weight gain started to significantly drop off at around age 6. Pedi sent to endo, but we moved back to SA before anything could really be done. When he was dx w/ AU we were referred to a neuro who's was in awe of my son's size; at 8 years old he was 44" tall and weighed 36 lbs. The AU was the least of his worries. We were sent to a GI, hemo, and endo. GI doc looked at his med hx and immediately ordered the sweat test. You know the rest of the story. Still waiting...So far he has had a chest CT, sono of lower abdomen, bronch that cultured staph pneumonae, and lots and lots of meds for all the coexisting conditions. It is also a new theory that he has some sort of autoimmune disorder....Bring that bad boy on! God's got our back and we have faith that he will get us through all of it.
 
V

valigirl21

Guest
What happened was he was dx w/ AU shortly before he turned 8. We attributed his small stature to a combo of ADHD meds and just being short. His weight was attributed to his father being very thin. Then his growth and weight gain started to significantly drop off at around age 6. Pedi sent to endo, but we moved back to SA before anything could really be done. When he was dx w/ AU we were referred to a neuro who's was in awe of my son's size; at 8 years old he was 44" tall and weighed 36 lbs. The AU was the least of his worries. We were sent to a GI, hemo, and endo. GI doc looked at his med hx and immediately ordered the sweat test. You know the rest of the story. Still waiting...So far he has had a chest CT, sono of lower abdomen, bronch that cultured staph pneumonae, and lots and lots of meds for all the coexisting conditions. It is also a new theory that he has some sort of autoimmune disorder....Bring that bad boy on! God's got our back and we have faith that he will get us through all of it.
 
V

valigirl21

Guest
What happened was he was dx w/ AU shortly before he turned 8. We attributed his small stature to a combo of ADHD meds and just being short. His weight was attributed to his father being very thin. Then his growth and weight gain started to significantly drop off at around age 6. Pedi sent to endo, but we moved back to SA before anything could really be done. When he was dx w/ AU we were referred to a neuro who's was in awe of my son's size; at 8 years old he was 44" tall and weighed 36 lbs. The AU was the least of his worries. We were sent to a GI, hemo, and endo. GI doc looked at his med hx and immediately ordered the sweat test. You know the rest of the story. Still waiting...So far he has had a chest CT, sono of lower abdomen, bronch that cultured staph pneumonae, and lots and lots of meds for all the coexisting conditions. It is also a new theory that he has some sort of autoimmune disorder....Bring that bad boy on! God's got our back and we have faith that he will get us through all of it.
 
V

valigirl21

Guest
What happened was he was dx w/ AU shortly before he turned 8. We attributed his small stature to a combo of ADHD meds and just being short. His weight was attributed to his father being very thin. Then his growth and weight gain started to significantly drop off at around age 6. Pedi sent to endo, but we moved back to SA before anything could really be done. When he was dx w/ AU we were referred to a neuro who's was in awe of my son's size; at 8 years old he was 44" tall and weighed 36 lbs. The AU was the least of his worries. We were sent to a GI, hemo, and endo. GI doc looked at his med hx and immediately ordered the sweat test. You know the rest of the story. Still waiting...So far he has had a chest CT, sono of lower abdomen, bronch that cultured staph pneumonae, and lots and lots of meds for all the coexisting conditions. It is also a new theory that he has some sort of autoimmune disorder....Bring that bad boy on! God's got our back and we have faith that he will get us through all of it.
 
V

valigirl21

Guest
What happened was he was dx w/ AU shortly before he turned 8. We attributed his small stature to a combo of ADHD meds and just being short. His weight was attributed to his father being very thin. Then his growth and weight gain started to significantly drop off at around age 6. Pedi sent to endo, but we moved back to SA before anything could really be done. When he was dx w/ AU we were referred to a neuro who's was in awe of my son's size; at 8 years old he was 44" tall and weighed 36 lbs. The AU was the least of his worries. We were sent to a GI, hemo, and endo. GI doc looked at his med hx and immediately ordered the sweat test. You know the rest of the story. Still waiting...So far he has had a chest CT, sono of lower abdomen, bronch that cultured staph pneumonae, and lots and lots of meds for all the coexisting conditions. It is also a new theory that he has some sort of autoimmune disorder....Bring that bad boy on! God's got our back and we have faith that he will get us through all of it.
 
V

valigirl21

Guest
What happened was he was dx w/ AU shortly before he turned 8. We attributed his small stature to a combo of ADHD meds and just being short. His weight was attributed to his father being very thin. Then his growth and weight gain started to significantly drop off at around age 6. Pedi sent to endo, but we moved back to SA before anything could really be done. When he was dx w/ AU we were referred to a neuro who's was in awe of my son's size; at 8 years old he was 44" tall and weighed 36 lbs. The AU was the least of his worries. We were sent to a GI, hemo, and endo. GI doc looked at his med hx and immediately ordered the sweat test. You know the rest of the story. Still waiting...So far he has had a chest CT, sono of lower abdomen, bronch that cultured staph pneumonae, and lots and lots of meds for all the coexisting conditions. It is also a new theory that he has some sort of autoimmune disorder....Bring that bad boy on! God's got our back and we have faith that he will get us through all of it.
 
V

valigirl21

Guest
What happened was he was dx w/ AU shortly before he turned 8. We attributed his small stature to a combo of ADHD meds and just being short. His weight was attributed to his father being very thin. Then his growth and weight gain started to significantly drop off at around age 6. Pedi sent to endo, but we moved back to SA before anything could really be done. When he was dx w/ AU we were referred to a neuro who's was in awe of my son's size; at 8 years old he was 44" tall and weighed 36 lbs. The AU was the least of his worries. We were sent to a GI, hemo, and endo. GI doc looked at his med hx and immediately ordered the sweat test. You know the rest of the story. Still waiting...So far he has had a chest CT, sono of lower abdomen, bronch that cultured staph pneumonae, and lots and lots of meds for all the coexisting conditions. It is also a new theory that he has some sort of autoimmune disorder....Bring that bad boy on! God's got our back and we have faith that he will get us through all of it.
 
V

valigirl21

Guest
What happened was he was dx w/ AU shortly before he turned 8. We attributed his small stature to a combo of ADHD meds and just being short. His weight was attributed to his father being very thin. Then his growth and weight gain started to significantly drop off at around age 6. Pedi sent to endo, but we moved back to SA before anything could really be done. When he was dx w/ AU we were referred to a neuro who's was in awe of my son's size; at 8 years old he was 44" tall and weighed 36 lbs. The AU was the least of his worries. We were sent to a GI, hemo, and endo. GI doc looked at his med hx and immediately ordered the sweat test. You know the rest of the story. Still waiting...So far he has had a chest CT, sono of lower abdomen, bronch that cultured staph pneumonae, and lots and lots of meds for all the coexisting conditions. It is also a new theory that he has some sort of autoimmune disorder....Bring that bad boy on! God's got our back and we have faith that he will get us through all of it.
 
V

valigirl21

Guest
What happened was he was dx w/ AU shortly before he turned 8. We attributed his small stature to a combo of ADHD meds and just being short. His weight was attributed to his father being very thin. Then his growth and weight gain started to significantly drop off at around age 6. Pedi sent to endo, but we moved back to SA before anything could really be done. When he was dx w/ AU we were referred to a neuro who's was in awe of my son's size; at 8 years old he was 44" tall and weighed 36 lbs. The AU was the least of his worries. We were sent to a GI, hemo, and endo. GI doc looked at his med hx and immediately ordered the sweat test. You know the rest of the story. Still waiting...So far he has had a chest CT, sono of lower abdomen, bronch that cultured staph pneumonae, and lots and lots of meds for all the coexisting conditions. It is also a new theory that he has some sort of autoimmune disorder....Bring that bad boy on! God's got our back and we have faith that he will get us through all of it.
 
V

valigirl21

Guest
What happened was he was dx w/ AU shortly before he turned 8. We attributed his small stature to a combo of ADHD meds and just being short. His weight was attributed to his father being very thin. Then his growth and weight gain started to significantly drop off at around age 6. Pedi sent to endo, but we moved back to SA before anything could really be done. When he was dx w/ AU we were referred to a neuro who's was in awe of my son's size; at 8 years old he was 44" tall and weighed 36 lbs. The AU was the least of his worries. We were sent to a GI, hemo, and endo. GI doc looked at his med hx and immediately ordered the sweat test. You know the rest of the story. Still waiting...So far he has had a chest CT, sono of lower abdomen, bronch that cultured staph pneumonae, and lots and lots of meds for all the coexisting conditions. It is also a new theory that he has some sort of autoimmune disorder....Bring that bad boy on! God's got our back and we have faith that he will get us through all of it.
 
A

asiewny

New member
I feel like my son's autism is the least of our worries now too, lol-although it is hard thing to overlook when he is bouncing off the walls and making nonsense noises! He was dx w/autism at 4years old and started taking meds at 5-that is why I think his growth was overloooked. I thought my son's growth bad with being almost 10 and 49" and 49lbs! Wow, your son was so small, but I am so glad to hear about how nicely he is growing now! How has the growth hormone injections been? The endo told us he would have to have daily injections, but isn't going to start until May. Don't know if that is her typical timeline or she just wants to wait until after the MRI in March and what the CF clinic finds.
 
A

asiewny

New member
I feel like my son's autism is the least of our worries now too, lol-although it is hard thing to overlook when he is bouncing off the walls and making nonsense noises! He was dx w/autism at 4years old and started taking meds at 5-that is why I think his growth was overloooked. I thought my son's growth bad with being almost 10 and 49" and 49lbs! Wow, your son was so small, but I am so glad to hear about how nicely he is growing now! How has the growth hormone injections been? The endo told us he would have to have daily injections, but isn't going to start until May. Don't know if that is her typical timeline or she just wants to wait until after the MRI in March and what the CF clinic finds.
 
A

asiewny

New member
I feel like my son's autism is the least of our worries now too, lol-although it is hard thing to overlook when he is bouncing off the walls and making nonsense noises! He was dx w/autism at 4years old and started taking meds at 5-that is why I think his growth was overloooked. I thought my son's growth bad with being almost 10 and 49" and 49lbs! Wow, your son was so small, but I am so glad to hear about how nicely he is growing now! How has the growth hormone injections been? The endo told us he would have to have daily injections, but isn't going to start until May. Don't know if that is her typical timeline or she just wants to wait until after the MRI in March and what the CF clinic finds.
 
A

asiewny

New member
I feel like my son's autism is the least of our worries now too, lol-although it is hard thing to overlook when he is bouncing off the walls and making nonsense noises! He was dx w/autism at 4years old and started taking meds at 5-that is why I think his growth was overloooked. I thought my son's growth bad with being almost 10 and 49" and 49lbs! Wow, your son was so small, but I am so glad to hear about how nicely he is growing now! How has the growth hormone injections been? The endo told us he would have to have daily injections, but isn't going to start until May. Don't know if that is her typical timeline or she just wants to wait until after the MRI in March and what the CF clinic finds.
 
A

asiewny

New member
I feel like my son's autism is the least of our worries now too, lol-although it is hard thing to overlook when he is bouncing off the walls and making nonsense noises! He was dx w/autism at 4years old and started taking meds at 5-that is why I think his growth was overloooked. I thought my son's growth bad with being almost 10 and 49" and 49lbs! Wow, your son was so small, but I am so glad to hear about how nicely he is growing now! How has the growth hormone injections been? The endo told us he would have to have daily injections, but isn't going to start until May. Don't know if that is her typical timeline or she just wants to wait until after the MRI in March and what the CF clinic finds.
 
V

valigirl21

Guest
The MRI is a normal thing, but our endo actually ordered it. The injections have had to tweeked a few times, but they must be given consistanntly, and I must admit I often forget. Lord knows Noah isn't going to remind me, EVER, about that med. He is also now 49", but 47 lbs. and that's w/ enzymes and injections. He is also going to be 10 soon, in April. Those shots are a doozie though. I'm going to see about getting someone to come in to give them b/c a) I forget to often, and b) even though I'm an MA giving my underweight 9 year old a shot has proved to be too much for me.
 
V

valigirl21

Guest
The MRI is a normal thing, but our endo actually ordered it. The injections have had to tweeked a few times, but they must be given consistanntly, and I must admit I often forget. Lord knows Noah isn't going to remind me, EVER, about that med. He is also now 49", but 47 lbs. and that's w/ enzymes and injections. He is also going to be 10 soon, in April. Those shots are a doozie though. I'm going to see about getting someone to come in to give them b/c a) I forget to often, and b) even though I'm an MA giving my underweight 9 year old a shot has proved to be too much for me.
 
V

valigirl21

Guest
The MRI is a normal thing, but our endo actually ordered it. The injections have had to tweeked a few times, but they must be given consistanntly, and I must admit I often forget. Lord knows Noah isn't going to remind me, EVER, about that med. He is also now 49", but 47 lbs. and that's w/ enzymes and injections. He is also going to be 10 soon, in April. Those shots are a doozie though. I'm going to see about getting someone to come in to give them b/c a) I forget to often, and b) even though I'm an MA giving my underweight 9 year old a shot has proved to be too much for me.
 
V

valigirl21

Guest
The MRI is a normal thing, but our endo actually ordered it. The injections have had to tweeked a few times, but they must be given consistanntly, and I must admit I often forget. Lord knows Noah isn't going to remind me, EVER, about that med. He is also now 49", but 47 lbs. and that's w/ enzymes and injections. He is also going to be 10 soon, in April. Those shots are a doozie though. I'm going to see about getting someone to come in to give them b/c a) I forget to often, and b) even though I'm an MA giving my underweight 9 year old a shot has proved to be too much for me.
 
V

valigirl21

Guest
The MRI is a normal thing, but our endo actually ordered it. The injections have had to tweeked a few times, but they must be given consistanntly, and I must admit I often forget. Lord knows Noah isn't going to remind me, EVER, about that med. He is also now 49", but 47 lbs. and that's w/ enzymes and injections. He is also going to be 10 soon, in April. Those shots are a doozie though. I'm going to see about getting someone to come in to give them b/c a) I forget to often, and b) even though I'm an MA giving my underweight 9 year old a shot has proved to be too much for me.
 
You must log in or register to reply here.
Top