Hi, all!
I'm looking for any superb multidisciplinary clinics that could help with a diagnosis for my son.
Here's the background, warning, it is long.
My son was born at 35 weeks due to placental abruption, aspirated blood had poor apgars 3, 6, 8. Place in NICU on vent. Began to show improvement, went to the oxyhood in 24 hours. 3rd day of life he received an accidental magnesium overdose for about 24 hours through his TPN. Normal mag level for an adult is up to 2.4 his was 15.6
. Caused all types of problems. He had some kidney issues, pulmonary hyptertension, enlarged heart (blamed on my diabetes), feeding difficulties, and seizures. He was in there a total of 21 days, they (dr.'s) didn't feel he should have any long lasting side effects from the overdose. He also was born with, and continues to have systemic hypertension.
He is now 24 months. He is pretty delayed he did start walking at 22 months. He also is starting to sign as he only has one word "bye". He has had fundoplication due to reflux, he has had tubes put in, adenoids removed, chronic sinus and respiratory infections, loose stools, failure to thrive as a baby and still a pretty poor appetite (cruising at the 10th percentile), his airway is also narrowing, been lasered once (no one knows why), had hypoxia as a baby, has seizures, his last MRI showed a change in white matter, has hypertension despite being on two anti-hypertensives, has body wide hyptonia, and hyperflexible fingers. He had some chomosome testing done as he also is showing some facial assymetry and they found that he has a 2q31 deletion (dr.'s don't believe that has much significance). He is very appropriate socially, just can't talk.
Anyway, he has a dr. for pretty much every body system, but I would like someone to take a look at everything, "the whole patient". His family doc. has kind of thrown up his hands and said, that because none of my son's issues are "critical" that he doesn't have the answer. He said that he would refer us anywhere we want to go, though. I would like someone to take a multidisciplinary look at all of his problems and see if anyone can give us a diagnosis, just so we can have an idea of what his future holds. So does anyone have any advice on a place that has been stellar? We are in Idaho, so in the Western US would be great, but I would travel around the world 9 times if it would help my son.
Thanks a bunch for reading my novel.
Riali
I'm looking for any superb multidisciplinary clinics that could help with a diagnosis for my son.
Here's the background, warning, it is long.
My son was born at 35 weeks due to placental abruption, aspirated blood had poor apgars 3, 6, 8. Place in NICU on vent. Began to show improvement, went to the oxyhood in 24 hours. 3rd day of life he received an accidental magnesium overdose for about 24 hours through his TPN. Normal mag level for an adult is up to 2.4 his was 15.6
. Caused all types of problems. He had some kidney issues, pulmonary hyptertension, enlarged heart (blamed on my diabetes), feeding difficulties, and seizures. He was in there a total of 21 days, they (dr.'s) didn't feel he should have any long lasting side effects from the overdose. He also was born with, and continues to have systemic hypertension. He is now 24 months. He is pretty delayed he did start walking at 22 months. He also is starting to sign as he only has one word "bye". He has had fundoplication due to reflux, he has had tubes put in, adenoids removed, chronic sinus and respiratory infections, loose stools, failure to thrive as a baby and still a pretty poor appetite (cruising at the 10th percentile), his airway is also narrowing, been lasered once (no one knows why), had hypoxia as a baby, has seizures, his last MRI showed a change in white matter, has hypertension despite being on two anti-hypertensives, has body wide hyptonia, and hyperflexible fingers. He had some chomosome testing done as he also is showing some facial assymetry and they found that he has a 2q31 deletion (dr.'s don't believe that has much significance). He is very appropriate socially, just can't talk.
Anyway, he has a dr. for pretty much every body system, but I would like someone to take a look at everything, "the whole patient". His family doc. has kind of thrown up his hands and said, that because none of my son's issues are "critical" that he doesn't have the answer. He said that he would refer us anywhere we want to go, though. I would like someone to take a multidisciplinary look at all of his problems and see if anyone can give us a diagnosis, just so we can have an idea of what his future holds. So does anyone have any advice on a place that has been stellar? We are in Idaho, so in the Western US would be great, but I would travel around the world 9 times if it would help my son.
Thanks a bunch for reading my novel.
Riali
, we will wait and see". I have a few recommendations to go to Seattle from his ENT and pulmonologist, but don't know. OT is suggesting a neuro clinic, I don't remember where. We are seeing geneticist in Salt Lake in March, but was just looking to see if anyone had any advice from past experiences. Once again, thanks for your suggestions. Anyone else?
