After a normal pregnancy, Trent was born a healthy baby on November 13, 2009, and a few days later, we were excited to be going home with our new baby boy. Before being discharged our pediatrician came to see us and explained Trent was healthy but jaundiced, and said to put him in the sun every day (which did work). The doctor also said Trent was unable to be circumcised because he believed that he had Hypospadias, which means the hole for his urethra is not centered. Trent’s was slightly below center and he was referred to see an urologist. The urologist said Trent’s Hypospadias was not severe enough to require surgery and was able to be circumcised.
Trent’s crying was another issue. The first few days home from the hospital everything was fine and I thought “I got this”. This is when things started to slowly go downhill- the crying started. I knew babies cried but geez- Trent cried inconsolably day and night. We were in and out of his pediatrician’s office asking what was wrong; they said “Oh it’s probably just colic.” At one point we were giving him Mylicon drops every two hours because he was crying and passing gas- we figured it was gas that was causing him to cry. We went through every kind of bottle and formula out there trying to figure out what was causing it. Nothing seemed to help! My husband and I worked so we were bringing him to a sitter and I felt so bad because she would tell me how much he cried.
About three months went by and my husband brought him to the pediatrician for his checkup. I will never forget that day- my husband called me and said the doctor wants Trent to have a cat scan of his brain as he wasn’t meeting his milestones, to see a GI doctor to get his stomach checked out, and to see an eye doctor for his strabismus. I just cried. So we did everything he told us to do. He had his cat scan on a Friday and that Monday the doctor called and wanted us to meet him at his office at 5:30 pm and I knew that something was wrong. I just cried again. We all went there and he told us that he had Partial Agenesis of the Corpus Callosum (PACC) and a simplified gyral pattern on the front of his brain, and explained a little about it. He said his Corpus Callosum was thin and partially missing in the back, that Trent will have developmental delays and to see a geneticist and a neurologist. I just cried again. When we went to see the geneticist, he ran blood tests, but nothing came back positive. We continued on to the neurologist, but still had no answers- just a lot of questions. Trent’s breathing was very raspy so we were referred to see a pulmonary doctor. He performed an endoscopy that showed Trent had a floppy epiglottis but would eventually grow out of it. He explained that Trent would have problems with the midline of his body since the middle portion of his brain was undeveloped. Just like if the right side of your brain had problems, the left side of your body would be affected. It made sense Trent had Hypospadias, floppy epiglottis, and GI issues, all midline in the body. He also said to be prepared because Trent was the Ferrari of kids and was going to be high maintenance. Boy, was he right!!
At 4 1/2 months old Trent started Early Steps, an early intervention program. He had PT, OT, speech and a vision therapist. Every day, we prepared for the daily routine of battles with feeding and therapy for an irritable baby. We no longer brought him to the sitter so my mom started watching him while I was working. Then when Trent was about a year old, he started having these jerking movements. We told the neurologist and he ordered an overnight EEG. We were told to press a button every time he jerked that night. The next day, the doctor came in and told us we pushed the button 60 times. Trent was having myoclonic seizures, and they put him on Keppra which didn’t stop the seizures so they added Phenabarbital. This combo seemed to do the trick and eventually he was able to get off the Keppra. Knock on wood, the seizures have been under control ever since! Again Trent’s feeding and GI issues began to take its toll; he started drinking less and less of his bottle and throwing up more and more. We kept a log of how much he drank every day and the number was getting less and less. After falling off the growth chart and seeing a downward trend, Trent’s GI doctor recommended a g tube. We sought out a second opinion and they also recommended one. It was a hard decision because we felt defeated, but we realized we were doing everything we could to the point of exhaustion, so in June of 2011, he finally got it. It was one of the best things we ever did for Trent and us! At the time, Trent was still able to drink his bottle and we were able to supplement what he wasn’t getting. We felt better because we knew he was getting what he needed and he began to slowly put on a little weight. After a while though Trent began drinking less and less of his bottle and became totally tube fed. He also began throwing up again.
In between all of that we noticed his gas and stool had a really bad smell and an abnormal green color. The GI doctor ordered a stool sample test, and come to find out he had c diff, a bacterial infection. He’s been battling this since 2010, and the doctor says he is a carrier of it. For 2 years, he had to take an antibiotic every 3 or 4 months when it became active.
In the meantime, it was so hard trying to keep track of my work schedule, my husband’s shift work schedule, my mom’s schedule, therapies and doctor’s appointments. Lack of sleep was taking its toll too. I eventually had to quit my job because I was so overwhelmed with everything-that was the best decision ever.
Then in October of 2011, Trent started having these crying spells that lasted for 6 days. These would come like every 3 weeks. The only thing that provided him any comfort was putting him in this Lycra swing we have hanging in the living room. We didn’t know if he was in pain or if it was just his brain. We were in and out of the pediatrician’s office, the emergency room, the GI’s office and the neurologist’s office; no one could find anything wrong with him. The neurologist just said, oh that’s Trent and gave him some anxiety medicine which didn’t do anything. Finally, when he was having one of his crying spells, we went to see the GI doctor. She saw how he was and we told her we wanted him checked inside and out. She agreed that something was wrong with him; possibly the c diff was causing him pain again. We then went see the neurologist to show him how he was, and to tell him we were checking him into the hospital. He said if they didn’t find anything, that he would try some other kinds of meds on him. The GI doctor did an upper and lower GI; everything looked normal with the exception of his esophagus was a little red-probably from vomiting. From there we all agreed to have the Nissen fundoplication and pyloroplasty done to see if that was causing him to cry.
Then the waiting game began to see if any of the changes helped out his mood and guess what-it didn’t. I was fed up with the neurologist so we went to a neuropsychologist an hour and a half away, explained everything to her and she put him on Prozac. Then there was more waiting for it to get into his system. That did help a little but he would still cry. From there we got an appt. with another neurologist closer to home and explained everything to her, she told us to come to the hospital when he was in his crying spell. The next time he had one we went in and they did an EEG, but couldn’t find anything. They were racking their brains as to why he was crying inconsolably. They even x-rayed his hips to see if maybe they were going in and out of socket at times. This was the worse 2 days ever because he was crying constantly and we didn’t have the swing to swing him in. He didn’t sleep at all that night. The next morning she referred us to a neuropsychiatrist at the hospital and he switched his Prozac to Paxil; I think that really did the trick. He is still irritable at times but nothing like before. That was HELL!!! One of the worst things in the world is to see your child crying inconsolably and no one knows why and he can’t tell you himself.
Then Trent started to retch/gag a lot. We tried every possible medicine to get him to stop, but nothing worked. We ended up going to another GI doctor, and after some testing discovered that not only did Trent’s stomach work only when empty and not work when full, but also he has a dysfunctional esophagus. From there he switched his G tube to a GJ tube, which means we feed him into his intestine rather than his stomach. Trent is still retching at times and we are still in the process of figuring out what we can do to stop this.
While all this was going on, Trent’s geneticist was running more blood tests to find out what Trent had. In January of 2013, he called and told us to schedule an appointment. During the consultation, we got the news that he finally had a diagnosis, FoxG1 Syndrome, (also called Congenital Variant Rett). We were relieved to find this out. They gave us as much information as they had and of course when we got home we scoured the internet looking up everything. We came across this wonderful foundation where we get support and answers.
Trent goes to school twice a week for an hour and a half and goes to outpatient PT and OT once a week. It’s been a looonnng 4 years and we have plenty more to come. I have learned what’s really important in life, and that a great day is one with smiling, laughing, no crying, no gagging, and Trent sleeping mostly through the night. Trent has taught us to be patient and to take one day at a time! After a normal pregnancy, Trent was born a healthy baby on November 13, 2009, and a few days later, we were excited to be going home with our new baby boy. Before being discharged our pediatrician came to see us and explained Trent was healthy but jaundiced, and said to put him in the sun every day (which did work). The doctor also said Trent was unable to be circumcised because he believed that he had Hypospadias, which means the hole for his urethra is not centered. Trent’s was slightly below center and he was referred to see an urologist. The urologist said Trent’s Hypospadias was not severe enough to require surgery and was able to be circumcised.
Trent’s crying was another issue. The first few days home from the hospital everything was fine and I thought “I got this”. This is when things started to slowly go downhill- the crying started. I knew babies cried but geez- Trent cried inconsolably day and night. We were in and out of his pediatrician’s office asking what was wrong; they said “Oh it’s probably just colic.” At one point we were giving him Mylicon drops every two hours because he was crying and passing gas- we figured it was gas that was causing him to cry. We went through every kind of bottle and formula out there trying to figure out what was causing it. Nothing seemed to help! My husband and I worked so we were bringing him to a sitter and I felt so bad because she would tell me how much he cried.
About three months went by and my husband brought him to the pediatrician for his checkup. I will never forget that day- my husband called me and said the doctor wants Trent to have a cat scan of his brain as he wasn’t meeting his milestones, to see a GI doctor to get his stomach checked out, and to see an eye doctor for his strabismus. I just cried. So we did everything he told us to do. He had his cat scan on a Friday and that Monday the doctor called and wanted us to meet him at his office at 5:30 pm and I knew that something was wrong. I just cried again. We all went there and he told us that he had Partial Agenesis of the Corpus Callosum (PACC) and a simplified gyral pattern on the front of his brain, and explained a little about it. He said his Corpus Callosum was thin and partially missing in the back, that Trent will have developmental delays and to see a geneticist and a neurologist. I just cried again. When we went to see the geneticist, he ran blood tests, but nothing came back positive. We continued on to the neurologist, but still had no answers- just a lot of questions. Trent’s breathing was very raspy so we were referred to see a pulmonary doctor. He performed an endoscopy that showed Trent had a floppy epiglottis but would eventually grow out of it. He explained that Trent would have problems with the midline of his body since the middle portion of his brain was undeveloped. Just like if the right side of your brain had problems, the left side of your body would be affected. It made sense Trent had Hypospadias, floppy epiglottis, and GI issues, all midline in the body. He also said to be prepared because Trent was the Ferrari of kids and was going to be high maintenance. Boy, was he right!!
At 4 1/2 months old Trent started Early Steps, an early intervention program. He had PT, OT, speech and a vision therapist. Every day, we prepared for the daily routine of battles with feeding and therapy for an irritable baby. We no longer brought him to the sitter so my mom started watching him while I was working. Then when Trent was about a year old, he started having these jerking movements. We told the neurologist and he ordered an overnight EEG. We were told to press a button every time he jerked that night. The next day, the doctor came in and told us we pushed the button 60 times. Trent was having myoclonic seizures, and they put him on Keppra which didn’t stop the seizures so they added Phenabarbital. This combo seemed to do the trick and eventually he was able to get off the Keppra. Knock on wood, the seizures have been under control ever since! Again Trent’s feeding and GI issues began to take its toll; he started drinking less and less of his bottle and throwing up more and more. We kept a log of how much he drank every day and the number was getting less and less. After falling off the growth chart and seeing a downward trend, Trent’s GI doctor recommended a g tube. We sought out a second opinion and they also recommended one. It was a hard decision because we felt defeated, but we realized we were doing everything we could to the point of exhaustion, so in June of 2011, he finally got it. It was one of the best things we ever did for Trent and us! At the time, Trent was still able to drink his bottle and we were able to supplement what he wasn’t getting. We felt better because we knew he was getting what he needed and he began to slowly put on a little weight. After a while though Trent began drinking less and less of his bottle and became totally tube fed. He also began throwing up again.
In between all of that we noticed his gas and stool had a really bad smell and an abnormal green color. The GI doctor ordered a stool sample test, and come to find out he had c diff, a bacterial infection. He’s been battling this since 2010, and the doctor says he is a carrier of it. For 2 years, he had to take an antibiotic every 3 or 4 months when it became active.
In the meantime, it was so hard trying to keep track of my work schedule, my husband’s shift work schedule, my mom’s schedule, therapies and doctor’s appointments. Lack of sleep was taking its toll too. I eventually had to quit my job because I was so overwhelmed with everything-that was the best decision ever.
Then in October of 2011, Trent started having these crying spells that lasted for 6 days. These would come like every 3 weeks. The only thing that provided him any comfort was putting him in this Lycra swing we have hanging in the living room. We didn’t know if he was in pain or if it was just his brain. We were in and out of the pediatrician’s office, the emergency room, the GI’s office and the neurologist’s office; no one could find anything wrong with him. The neurologist just said, oh that’s Trent and gave him some anxiety medicine which didn’t do anything. Finally, when he was having one of his crying spells, we went to see the GI doctor. She saw how he was and we told her we wanted him checked inside and out. She agreed that something was wrong with him; possibly the c diff was causing him pain again. We then went see the neurologist to show him how he was, and to tell him we were checking him into the hospital. He said if they didn’t find anything, that he would try some other kinds of meds on him. The GI doctor did an upper and lower GI; everything looked normal with the exception of his esophagus was a little red-probably from vomiting. From there we all agreed to have the Nissen fundoplication and pyloroplasty done to see if that was causing him to cry.
Then the waiting game began to see if any of the changes helped out his mood and guess what-it didn’t. I was fed up with the neurologist so we went to a neuropsychologist an hour and a half away, explained everything to her and she put him on Prozac. Then there was more waiting for it to get into his system. That did help a little but he would still cry. From there we got an appt. with another neurologist closer to home and explained everything to her, she told us to come to the hospital when he was in his crying spell. The next time he had one we went in and they did an EEG, but couldn’t find anything. They were racking their brains as to why he was crying inconsolably. They even x-rayed his hips to see if maybe they were going in and out of socket at times. This was the worse 2 days ever because he was crying constantly and we didn’t have the swing to swing him in. He didn’t sleep at all that night. The next morning she referred us to a neuropsychiatrist at the hospital and he switched his Prozac to Paxil; I think that really did the trick. He is still irritable at times but nothing like before. That was HELL!!! One of the worst things in the world is to see your child crying inconsolably and no one knows why and he can’t tell you himself.
Then Trent started to retch/gag a lot. We tried every possible medicine to get him to stop, but nothing worked. We ended up going to another GI doctor, and after some testing discovered that not only did Trent’s stomach work only when empty and not work when full, but also he has a dysfunctional esophagus. From there he switched his G tube to a GJ tube, which means we feed him into his intestine rather than his stomach. Trent is still retching at times and we are still in the process of figuring out what we can do to stop this.
While all this was going on, Trent’s geneticist was running more blood tests to find out what Trent had. In January of 2013, he called and told us to schedule an appointment. During the consultation, we got the news that he finally had a diagnosis, FoxG1 Syndrome, (also called Congenital Variant Rett). We were relieved to find this out. They gave us as much information as they had and of course when we got home we scoured the internet looking up everything. We came across this wonderful foundation where we get support and answers.
Trent goes to school twice a week for an hour and a half and goes to outpatient PT and OT once a week. It’s been a looonnng 4 years and we have plenty more to come. I have learned what’s really important in life, and that a great day is one with smiling, laughing, no crying, no gagging, and Trent sleeping mostly through the night. Trent has taught us to be patient and to take one day at a time!