dysphagia

[brandy44056]

My grandaughter is 7 wks. old. For the past 6 wks. she has done nothing but vomit up her formula. She has been on 10 formulas and is on Similac Alumentum right now. I have been to the Pediatrician with my grandaughter and Daughter. The Doctor kept saying my grandaughter was "spitting " up. I told her that she was " throwing " up and my daughter told the Pediatrician. I told the woman that when you have to cover yourself with a towel, that is not " spitting " up!  My daughter and I also told the Doctor that the baby sounds " raspy " . She told us that the baby's lungs were just fine. It has been hell for my daughter and her child. I told my daughter that the baby is not " right ". I have said all along that the baby is sick. She just cries and cries as if in pain.. One evening my daughter and her fiance took the baby to the ER. They said that the baby had colic. Another time they took the baby to the ER and they refused to admit the baby as she was scheduled for an upper GI in a day or two. The grandaughter even vomited up blood and the Doctor could care less. After the Barium test my daughter was told not to leave. My daughter knew something was wrong. The next day the grandaughter had surgery for Pyloric Stenosis. That would explain the vomiting for 6 weeks but the Pediatrician called it " spit " up. We returned to the Pediatrician and told her that the baby still was crying and not sleeping. I had told her about the ER incident. I had told her that I could not believe that a Doctor would said a baby home that vomited up blood. I told the Pediatrician that bright red blood means you broke a blood vessel but dark blood is a " red flag ". She told me that it was neither here nor there----it was over. It is a good thing she couldn't read my mind at that moment. I had to " bite " my tongue as I knew the Grandaughter needed another test to be done and this woman could end up " firing " my daughter as a patient. I had a Doctor do that to me once as I refused to take prednisone. This Pediatrician scheduled a Barium Swallow test for the baby. She had no intention of telling my daughter the purpose of the test. My daughter already knew as she did research. My daughter asked the Pediatrician if she was testing for Dysphagia. She said yes. When we left I told my daughter that I did not like this Doctor but we needed this test done and now was not the time to "drop ' her. This Doctor has totally " screwed " up in my eyes and I do not appreciate someone insulting my intelligence. I have raised three children and I can tell when a baby is sick.

The Barium Swallow was " pushed up " by two days as the baby was constantly crying. There wasn't any more vomiting or shall we say " spit " up. What a joke ! The woman that ran the test felt the grandaughter passed the Swallow Test but she still had her doubts. She said that she could not " rule out " Dysphagia. She also stated that when she put her gloved finger in the Grandaughter's mouth that she was concerned about the baby's tongue.

The Grandaughter has been drooling and having tongue thrust maybe for a week or two. She also has been choking on her own saliva. I had also noticed that at times the baby had problems latching onto the nipple when I fed her. She would move her head from side to side and would get frustrated.

My grandaughter was admitted after the test. We had a Nurse take the History and the Resident Doctor come in. They both told us the baby's lungs were fine. They said that there wasn't any raspiness. I would like to make note here that the Pediatrician for weeks, told us the same thing about the Grandaughter's lungs. We thought we were in the " Twilight Zone " as you could hear the baby's raspiness. The baby also has a Refex problem. She is sleeping and then she jumps . It is like when you are sleeping and you wake up as you think you are falling and you jump. The baby doesn't wake up but she is startled and we hold her hand to reasure her.

I guess an Ear, Nose, and Throat Doctor was sent in to see my daughter as I wasn't there at the time. My daughter insisted that her daughter be scoped. I do not know why the Doctor didn't order it. Perhaps the baby is too young. I do not know. The ENT told my daughter that he would insert a small tube up the baby's nose and down to the Larynx to see if there were any " webs ". Everything checked out okay. My grandaughter was being discharged and if my daughter didn't ask, the ENT probably wouldn't have told her that indeed the baby had Dysphagia. My daughter was told to come back to him in a couple of months. The ENT said the baby could outgrow the Dyspagia.

My grandaughter has been home a week. She is still drooling, crying, has the reflex problem, choking on her saliva, and does not want to sleep. I can not believe any of this. My grandaughter should have had more tests run. My god we have had to fight to have Doctors take us seriously about the health issues with the baby. I just can't believe "the garbage ". My daughter is not a teenager and I am a 63 year old woman. I had children and know what signs to look for when a baby is ill.

My daughter " jumped " on the pc and did her research. I told my daughter to never put 100% trust in any Doctor. The actress, Fran Dresser, made that comment on a show. She said to do your " homework " and to learn about everything that has to do with your body when  diagnosed with anything.

I hope  that I have given enough info but I am extremely worried. I have been doing research and I do not like what I am reading. Dysphagia is a symptom of an underlying problem. I am concerned with the drooling and the tongue thrust. Is this the beginning stage of Palsey ? The baby had Pyloric Stenosis. Could she have Stenosis of the Esophagus after weeks of vomiting ? At times my grandaughter seems to be staring at nothing. A few times we got her to smile. At times she has been responsive and other times she isn't. This all seems very serious. It is a " gut " feeling that I have and I pray to God that I am wrong on this one.

I do not feel that this Dysphagia will just go away and I do not appreciate how these Doctors have been. I do know one thing, my daughter is looking for a new Pediatrician. We need a Pediatrician that will listen to us and address our concerns and one that will be honest with us. I need answers before my daughter has a breakdown. She has been there for this child's every moment. We need answers on what the heck is going on here and what could be the underlying problem causing all of this.                    


                                                                                              Thanks so much,     Nancy

[brandy44056]

I reread my post. I do not classify making statements to a Doctor as arguments. If you can not tell the Doctor how you feel and if the Doctor doesn't listen to you and your opinions then you do not need that Doctor. I have never argued with a Doctor . Today we got a hold of our Primary Care Physician and he is very concerned and upset over everything that has transpired. He is the one that recommended this Pediatrician and he is disappointed over the whole situation.

I once had a Rheumi that I went to several times and upon one visit she didn't believe me when I handed her a piece of paper. I had everything written down that was bothering me. The Doctor ran a test on my Thyroid. When she called me she didn't really know what to say. The Doctor was very soft spoken in talking to me. I was told that I had Graves Disease. I never went back to this Doctor for my Lupus. I hope that after my experience with this Doctor that she " changed " and started listening to her patients.

Doctors today really need to listen to their patients. I have been to a lot of Doctors in my lifetime. If I am not heard and treated with respect , I do not need you as my doctor. I am not just a number. I am a human being.

My grandaughter is a human being and I live with her and my daughter. I have been right here with my daughter and have experienced everything that has been going on with this child. Doctors need to take the time for their patients.

[RockRose]

Oops,  meant to say "weeks",  not "months" after she went to a different doc.

[RockRose]

Brandy,  reread your post.  If I misunderstood how many times you argued,  to no avail,  with the pediatrician,  I'm sorry.

I often come across as harsh on these boards,  I get that,  and I'm not at all harsh in person.  I'm a marshmallow.

I kept reading "we" and then it seemed there was a confrontation with the doctor,  or some comment about I've raised 3 kids  I would know,  etc.

If I've come across wrong,  I'm sorry.  I'm getting an image of you locking horns with the doc - months after your daughter should have gone to a different doctor.

Again,  my apologies.  

[brandy44056]

I beg your pardon. No one disrespected this Doctor and I nor my daughter appreciate a Doctor that did nothing about the symptoms and the problems with the baby. We were waiting on tests to be run. My daughter is 40 years of age. I can not tell her what to do. It is her child. All I could do was give her my opinion. I thought this person was a good Doctor. Boy was I wrong. This Doctor came highly recommended by our family doctor.

No one fought with this Pediatrician. I had three children and I know when a baby is crying in pain. It is a natural instinct as a Mother. I am entitled to my opinion. I am going to say this and only once-------- this Doctor screwed up , plain and simple. And yes, we are looking for a new Pediatrician.

[RockRose]

Why hasn't she gotten another pediatrician before this?  

You do need answers,  and as hard as this is,  you need to treat the doctor with deference and respect when you get a new one.  You may not always feel deference and respect,  but you won't get anywhere at all by fighting with them.  Once you reach the ponit where you're feeling the urge to fight,  it's time to get another doctor.

I'm not trying to be ugly,  just honestly trying to pave the way to success.  Once you have a disagreeable relationship with a doctor/teacher/principal/cop/anyoneinpower you've lost the battle.

It seems like this has gone on way too long without real answers.  Best wishes getting more help.