Why do doctors think that well informed parents are nuts? Any idea on what it could be?Has anyone else had this kind of experience with doctors? Also If you have any clue as to what is wrong with my son, however rare or far out there, please feel free to leave suggestions. It will give me a place to start my research.
I am a mother of 4. I have some experience in how children grow and develop. I also have been inside my own skin longer then the doctor has, and can tell when something isn't quite right. My son has a number of medical problems. It has been a battle to get him diagnosed. The pediatrician gives the old spiel that children develop at different stages. Yes I KNOW that. I thought my son was having a seizure in the hospital after nursing him. I called the nurse. She said he was choking (about 1-2 minutes long). She couldn't get him to breathe. She ran off with him to the nursery for a longer tube to suction his airway. After I got home, he would spit up/vomit and choke, turning colors purple than blue. He didn't breathe for maybe 45 secs to a little over a minute. The pediatrician told me that "babies spit up", and tried to brush me off when I asked him what was wrong. I had NO idea that babies spit up, after having 3 previous children. Thank god he told me that. He forgot to tell me though that male babies tend to pee on you. I demanded a referral to a pediatric gastroenterologist. The pediatrician yelled at me, but I got one. My son had a choking incident right on the specialist's exam table. After an upper GI with contrast, an in-hospital pH probe and a ultrasound to check for pyloric stenosis, the gastro diagnosed him with a severe milk protein allergy, and GERD, and acid reflux. He put him on feeding tube formula by mouth. Problem solved.
He also has chronic constipation (never hard, just won't go Sorry about to much info!!). He is prescribed Mira-lax every day. I tried to slack off on it and he started vomiting all his feeds. He had no space for the food to go because the digestive track was back up with unmade bowel movements. He has trouble swallowing solids, regardless of how big or small I make them. He has been diagnosed with dysphagia.
He has delayed milestones, slow to sit (1st time at 11 months), won't put weight on legs to stand, just started getting on hands and knees to crawl, etc. Is babbling up a storm though, and always very happy. He is a large baby. was 9 lbs at 39 weeks. He is just shy of 26 pounds at 12 months. He wears a 3T. I thought the delay was due to his heavy build. The neurologist says he has hypotonia (floppy baby/floppy muscles).
He started having "seizure episodes". He would go limp and his eyes would roll back in his head. These were quick (3-5 seconds long) but would happen multiple times in a row. Then he has episodes that are the same time span in length but resemble facial tics, which looks like he bit into a lemon. Then he has what looks to be absence seizures, in which you can't get any reaction from him. These are longer and last 30 seconds to a minute long. The neurologist order an EEG which came out normal (doctor said it's normal so it's not epilepsy), and an MRI of the brain, that didn't come out normal. The MRI shows mildly enlarged brain ventricles, slow cerebral spinal fluid resorption and brain atrophy (shrinking). The shrinking is moderate in both sides of his head, about ear height and above, and a small amount in the upper left front of his head (forehead). From my research this appears to be where the motor cortex of the brain is, which would explain why he has trouble with his muscles and movement. Does brain atrophy cause seizures that wouldn't show up on the MRI? The neurologist said he had hydrocephalus (water on the brain) and macrocephaly (large head). The MRI report, said it wasn't hydrocephalus. I asked a neurosurgeon what could cause this, and she order genetic testing. She is having him tested for micro-deletions on DNA. I have asked family members and doctors to look at him. He looks normal. There seems to be no facial characteristics of any of the trisomy defects that are common (like down syndrome, fragile x, angel-man syndrome, etc). She said he has extra spinal fluid because his brain isn't there taking up the space it should. She order a MRI of his spine looking for a tethered spinal cord (for the delay in walking and bowel movement problems). I asked her if she thought that the atrophy would get worse, and she said she didn't think so. She thinks it happened at birth. I had a c-section, so the only time I knew he was without breathing was the choking incidents. I had heard that brain damage doesn't occur until about 5 minutes without breathing. But then babies brains are more sensitive. XCould his choking incidents have caused the brain atrophy? Would this be considered cerebral palsy?? There are varying extremes of cerebral palsy.
I asked if he was tested for B12 deficiency. And the doctor looked at me puzzled and said no. I
I told her that I had MTHFR and vitamin B deficiencies are common with that. She started laughing and said "who told you that?" I responded "My OB, because I habitually miscarry and MTHFR is linked to habitual/multiple miscarriages. My sister has been hospitalized with blood clots in her legs and lungs and she's only 47. She has it too." Then she asked me to spell it, which I did. I told her that B12 deficiency is linked to cerebral atrophy and delays. She told me to ask the neurologist.
My son also tends to flap his hands/arms and seems to have a very high palate in his mouth. He seems to shake/have tremors too, especially after naps and getting up from naps. I checked his blood sugar, and that was normal.
Any feed back is appreciated. Sorry about the length. I didn't want to leave anything important out. It is a huge battle to get referral to the specialists. The doctors keep ignoring me. Unfortunately, the tests have proven I have been correct, that something is wrong.
-Baby Love
ok so i briefly scaned your story lol i think you are an awsome mom wow you know your stuff. you should get a second opinion something is not right and you seem to know more then that doc. they always hate it when we as mothers do our research and go in there well educated. (intimidation i call it) your on the right path but maybe you need a knew team of docs to look at your sons symptoms.
-♥Riyen's Mom & Ayah due 4.12
His pediatrician is obviously an idiot and there is no way I would be going back to him for ANYTHING. I would get another doctor that specialized in high needs children and specifically one a neurologist could suggest to you. Obviously, that is where the problems are lying, and if the neurologist can't tell you what is going on they need to be referring you to someone who can. It's good that you've done your research, a lot of times doctors will ignore the things staring them straight in the face and assume it is something simple (like reflux). Happened with my sister when she was a newborn, she had a hinal hernial, couldn't keep food down and had EXCESSIVE vomitting. They didn't diagnose her until she was 3 months old, and by then she had failure to thrive and was nearly dead by the time they did the surgery.
You just need to keep trying, I can't tell you if your child has CP because I'm no doctor, but if I were you I'd get another opinion until someone starts taking your childs needs seroiusly.
-Mom of 2 Beautiful Peanuts
"Why do doctors think well-informed parents are nuts?" Two reasons. Educated parents who do research and question doctors are a threat to them, doctors hate to be challenged and hate to be wrong. But mostly, even well-educated, informed parents who have no medical degree really aren't medical experts. Sometimes, there is such a thing as knowing too much but not enough, if that makes any sense.
We had a similar experience with both of our kids. My second baby had seizures at 6 days old and was hospitalized for 5 days. My husband - who has his masters degree in mechanical engineering and is not a stupid man - researched it extensively on-line and found what looked like a diagnosis. Our pediatrician strongly disagreed, my husband was adamant that this was what she had, and I was stuck in the middle but was mad at my husband because he is NOT a doctor!!! anyhow, it turns out that after a referral to a pediatric neurologist, my husband was absolutely correct and the doctor was wrong. My first daughter had a similar experience. She was sick repeatedly as a baby, and displayed symptoms of asthma. Our pediatrician kept insisting it was "just a virus". I asked him mulitple times if it could be asthma (I had severe asthma as a child/teenager) and he kept insisting it was "nothing". After demanding a referral to a second pediatrician, she was diagnosed and treated for asthma and was better in a month,. She is now 3 years old and just stopped her inhalers about a month ago and is fine now (so far).
"Äny idea on what it could be?". I have some medical knowledge, but I am not a doctor and your son's problems are WAAAAAAY beyond the scope of Yahoo answers. Keep pushing until you get answers.
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