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Old 09-25-2014, 10:16 AM   #1
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Blaming the parents? Does this happen to you?

My daughter had pneumonia and had to be hospitalized this month. It was a virus that is going around. She had no history of lung problems.

Of course they asked about her history... prior history of microcephaly, seizures, and she is back to being classified as developmentally delayed. (She was delayed then she was "normal" at 18 months but then later speech/communication problems popped up).

I HATE being asked about my "history or drug use". I don't have a history of drug use!!!! I hate being asked about my "alcohol" consumption. Seriously?? I didn't even touch caffeine after I got the positive test! The way they word the questions is accusatory... How many alcoholic drinks did you have a week while pregnant? What anti-depressants where you on while pregnant? Was she fed formula in a bottle or did she need a tube? (She was Breastfed for 18 MONTHS! )



They sent in a "Nurse" who was not from the Pediatrics dept. I was pulled out of the room (my husband stayed with our daughter). It was basically an hour of questions completely UNRELATED to the current health issue. "It's best if you are just honest because it will help your daughter's treatment". I'm sure the Meth I didn't smoke is effecting her lungs 3 years after she was born. I finally just got pissed and said "Do you have some F***-ing form I can sign so that you can get her prenatal records from my OB because I'm not going to sit here and answer the same questions over and over?" Normally I don't cuss but the stress got to me. They left and didn't give me a consent for medical records form.

She is in pre-k for Early intervention. A school employee asked me if I knew what drugs the "birth mom" was on. When I said "She's my daughter and we have no history of drug use.", they told me how important it was to have the birth mom's history and asked if I could ask the agency about it. My answer was at that point "Well I can ask the hospital if she was switched at birth but I don't think she was. " My husband at that point had to tell the woman "She's not adopted". I've been asked by several people about the "birth mom". Why do people assume a special needs child is adopted???

Other times, I'm treated mostly like I'm a complete idiot who just doesn't know how to raise a child.... I want so badly just to release the Sarcasm monster hiding inside me. I get asked questions like "Have you ever tried to just have her sit on a potty?" No.. I have 3 different style potty chairs at home for her and haven't once thought to just have her sit on one to try to potty train. "Do you ever talk to her?" No I never speak to her... EVER. "She doesn't look like she is delayed". I didn't realize that because she lacks the facial features of a child with Down syndrome that meant that her brain must be just fine. "You need to force her to talk. If she doesn't say "drink" then don't give her one. " Okay crazy person ...will you come with me to the hospital and tell them this was your bright idea when she has to be treated for dehydration???

Sorry for the rant... thought you ladies might understand. I mostly sit there smiling and being "nice". But I want to scream! I have to hold back all the sarcastic things I really want to say! Please tell me I'm not the only one going through the blame game??

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Old 09-25-2014, 12:23 PM   #2
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Re: Blaming the parents? Does this happen to you?

What?! I'd be so mad! That's a load of crap!
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Old 09-25-2014, 12:26 PM   #3
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Re: Blaming the parents? Does this happen to you?

I dont have a special needs child but sometimes I lurk here, being a pediatric homehealth nurse.

Im sorry that this happens. Ive noticed it from some healthcare 'professionals'. Its like they forget that drugs or alcohol are the only things that causes congenital anomalies sometimes it just happens, they also assume that alot of kids are adopted or in a group home/childrens home for medically fragile kids.

I was in the procedure room with my patient and tgey had sent the parents out like usual. The doctor then says "where are you from? All saints (which is like a childrens nursing home)?"
I say "no, he lives at home with his parents, so I work at his house. He has a nurse 7days/wk 16hrs/day".
Then everybody else in the room kept saying things like "oh he lives at home with foster parents?" And "wait, he does or doesnt live at home?"
I say, "he lives at home with his bio parents and his siblings! His parents are in the waiting room"

Its so weird to me that I get these questions and others... ive even explained that his condition, although compelex wasnt discovered til after birth, and his mom had a normal pregnacy and his siblings are normal. Some things just happen...unfortunately some medical personnel are insensitive and think they know it all.
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Old 09-25-2014, 12:34 PM   #4
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Re: Blaming the parents? Does this happen to you?

No, but my son is diagnosed so the questions usually stop at the primary diagnosis. They do ask about smoking, pets, who is in the household etc... but I don't get defensive I just answer the questions. Being pulled into another room isn't standard though and I can understand why that would be upsetting. Did she have EV-68? That is what was spreading through the country although last I heard the infection rates were starting to drop off *knock on wood*.

Last edited by mekat; 09-25-2014 at 12:36 PM.
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Old 09-25-2014, 12:40 PM   #5
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Re: Blaming the parents? Does this happen to you?

I would never have classified my older son as special needs but he did have seizures. His teeth were horrible from early on. I tried to get him help but none of the dentists that took the medical card treated toddlers so his teeth went untreated until he got older.

Anyway, I did have one dentist inform me he had such bad teeth because I loaded him up with candy. When I asked why my daughter didn't have equally bad teeth I was told I spoiled him because he was special needs...

Now seriously I did not load him up with candy. In fact I didn't even give him juice because I thought it was too high in sugar content. The majority of our food is made from scratch from whole foods either fresh or frozen. Nothing with added sugar or processed flours. Like todays lunch was baked fish, brown rice with cauliflower and broccoli.
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Old 09-25-2014, 03:09 PM   #6
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Re: Blaming the parents? Does this happen to you?

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Did she have EV-68? That is what was spreading through the country although last I heard the infection rates were starting to drop off *knock on wood*.
It was mentioned and the doctor assumed that is what it was. They didn't test for it. They would have had to be very invasive to get a clear sample for testing. They said it "didn't matter which virus it was as the treatment is the same". I got feeling that they did NOT want to test for it.

She was fine with very slight runny nose one morning. It got worse that night. By lunchtime the next day, she was struggling to breath. It was quick. She was wheezing with each breath, her breathing was labored, and she had a "crackling" sound. I knew it was pneumonia and I bypassed going to the normal pediatrician (Who doesn't have x-ray equipment in their office) and went straight to the hospital.

There were other kids there under age 5 with" pneumonia" also. I talked to one other moms with a kid that had "the pneumonia",her child had no previous lung problems. The other kids started arriving the day after my daughter. There were so many kids in the ER that the respiratory dept was 3 to 5 hours late sometimes giving her treatments.The older children, they were giving nebulizers and sending home.

She has been doing breathing treatments(on time -LOL) at home since she was released from the hospital.
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Old 09-25-2014, 05:53 PM   #7
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Re: Blaming the parents? Does this happen to you?

I have a special needs son. I have never dealt with anyone that rude. I do get asked about drugs, smoking and drinking. But we are a temperate family, so there is none of that. Being a special needs parent can be very lonely at times. I hope you find better health care workers in the future.
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Old 09-25-2014, 06:45 PM   #8
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Re: Blaming the parents? Does this happen to you?

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Originally Posted by Rdesonia View Post
There were other kids there under age 5 with" pneumonia" also. I talked to one other moms with a kid that had "the pneumonia",her child had no previous lung problems. The other kids started arriving the day after my daughter. There were so many kids in the ER that the respiratory dept was 3 to 5 hours late sometimes giving her treatments.The older children, they were giving nebulizers and sending home.

She has been doing breathing treatments(on time -LOL) at home since she was released from the hospital.
I'm glad she is doing better and hopefully she recovers quickly. Our local children's hospital said they were seeing less respiratory cases but I admit I haven't double checked to see if things were starting to pick up again in the last 2 weeks since I haven't done any unnecessary outings with ds (immune deficiency).

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Originally Posted by MyNameIsMama View Post
I have a special needs son. I have never dealt with anyone that rude. I do get asked about drugs, smoking and drinking. But we are a temperate family, so there is none of that. Being a special needs parent can be very lonely at times. I hope you find better health care workers in the future.
Unfortunately when in the ER you are at the mercy of who ever is on call (for specialists) and who ever is staffed for the night, general er doctors and residents. They once sent my son home despite needing to be admitted unfortunately for the residents on duty ds's ped is also their head professor and you better believe she had heads rolling when she found out. Then I have had the horrible specialist called in (not our regular specialist) who decides to scream at and belittle the staff over minor stuff like asking questions you know so they could do their job right.

Thankfully it doesn't happen every time but you don't have much control over these ER experiences especially for involved children who can't go anywhere but a stand alone pediatric hospital. Even trying to go to an urgent care or another ER will either get you sent away or transferred by ambulance because most adult hospitals and outpatient clinics will not see a child with multiple involved medical problems.
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Old 09-25-2014, 06:53 PM   #9
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Re: Blaming the parents? Does this happen to you?

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Originally Posted by mekat View Post
I'm glad she is doing better and hopefully she recovers quickly. Our local children's hospital said they were seeing less respiratory cases but I admit I haven't double checked to see if things were starting to pick up again in the last 2 weeks since I haven't done any unnecessary outings with ds (immune deficiency).



Unfortunately when in the ER you are at the mercy of who ever is on call (for specialists) and who ever is staffed for the night, general er doctors and residents. They once sent my son home despite needing to be admitted unfortunately for the residents on duty ds's ped is also their head professor and you better believe she had heads rolling when she found out. Then I have had the horrible specialist called in (not our regular specialist) who decides to scream at and belittle the staff over minor stuff like asking questions you know so they could do their job right.

Thankfully it doesn't happen every time but you don't have much control over these ER experiences especially for involved children who can't go anywhere but a stand alone pediatric hospital. Even trying to go to an urgent care or another ER will either get you sent away or transferred by ambulance because most adult hospitals and outpatient clinics will not see a child with multiple involved medical problems.

My sister found this one out the hard way. Her baby stopped breathing. My BIL had to do CPR but different than regular infant CPR, She had/has a trach, until the ambulance arrived. Once they arrived at the local hospital(Springfield, Illinois not some rinky dink hospital) they discovered the hospital had nothing small enough in such specialized equipment. They did what they could to stabilize her and then air lifted her out to St.Louis. I would have thought a hospital the size of what they have in Springfield would have been equipped to deal with my niece. They weren't though.

So yeah when dealing with children with specialized medical needs you don't even get to pick the town let alone the hospital and staff that will be working on your child.
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Old 10-02-2014, 09:03 AM   #10
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Re: Blaming the parents? Does this happen to you?

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Originally Posted by qsefthuko View Post
[/COLOR]
My sister found this one out the hard way. Her baby stopped breathing. My BIL had to do CPR but different than regular infant CPR, She had/has a trach, until the ambulance arrived. Once they arrived at the local hospital(Springfield, Illinois not some rinky dink hospital) they discovered the hospital had nothing small enough in such specialized equipment. They did what they could to stabilize her and then air lifted her out to St.Louis. I would have thought a hospital the size of what they have in Springfield would have been equipped to deal with my niece. They weren't though.

So yeah when dealing with children with specialized medical needs you don't even get to pick the town let alone the hospital and staff that will be working on your child.
Wow, I started my career at St. John's Hospital in Springfield while still in nursing school. They have a NICU for crying out loud. That's insane.
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