what is wrong with these doctors

[PrestS]

So, we took my 5 month old, Kailyn to the pedi. to get a normal routine check up and shots. She has a hernia in her belly the size of an orange and this is supposed to be just normal. Then the doctor decided to announce after months of me freaking out about it that Kailyn has torticollis. So we talked to 2 different doctors and they are like this is normal.. OKAY SHE HAS HAD A TILT IN HER NECK SINCE SHE WAS BORN.....they are just picking up on it now. I mean her head doesn't stay up straight it lays to the side. We took her to the Shriners and they are sending us to South Carolina to a specialist because the Shriners think she may have a tumor in her spinal cord....NOW THEY ARE JUST NOW PICKING THIS UP....Why did they not see this sooner? I told them all that she was stiff and something wasn't right and now when it's like serious they are telling me...What is wrong with these doctors...I mean is it because i have medicaid for my kids? I just don't get it...My 5th month old could have a serious problem and now right when my mom moves to FL and I'm left here i find out my daughter may be in alot of pain...they are worried about the hernia bursting too...I don't get it. Am I wrong to be upset?

[CW&M Mom]

Torticollis is rather common...

Have you been to a pediatric hospital?

I can tell you for the proper treatment of torticollis you do months of physical therapy and if needs be they put a helmet on her head if she is getting a flat head. She should of been referred to a pediatric hospital for a referral.

Some doctors do a wait and see approach to torticollis (ours did)...IMO that is the wrong approach though, probably worked well when kids slept on there tummy's, not so much now that they sleep on their backs...however bad cases of torticollis have always needed to be treated with PT.


Has she been acting like she is in pain?

[434Teresa]

sometimes things that you find at birth will go away with a little age so I bet the ydid notice this before but wanted to give it some time to heal its self..

[healingMD]

No parent is ever wrong for caring! My prayers are with you....

Know that you have been given this challenge to master it. It's okay to be angry to see justice done. Just don't turn into the South American scorpion that gets so angry, it stings itself and dies from it's own poison.

[PrestS]

Well, the Shriners are going to be taking her to the pedatric hospital. I am just really depressed. I thought things were going to get better. I though God could only put as much as you could hold on your shoulders. I feel like I'm sinking. We will be hearing about when she goes within' the next couple weeks. I kind of had to have my rave and rant...I've calmed down. I am just very upset that when it rains it pours and it isn't fair. I guess thats kind of childish...It just really sucks.

[healingMD]

I hear ya, I have felt that way myself often this year, but I just keep telling myself...thank goodness I have an umbrella!

[CW&M Mom]

Well, the Shriners are going to be taking her to the pedatric hospital. I am just really depressed. I thought things were going to get better. I though God could only put as much as you could hold on your shoulders. I feel like I'm sinking. We will be hearing about when she goes within' the next couple weeks. I kind of had to have my rave and rant...I've calmed down. I am just very upset that when it rains it pours and it isn't fair. I guess thats kind of childish...It just really sucks.

It is very hard to watch awful things happen to our kids...just don't get ahead of yourself. You only know what is happening now...so don't make it harder by guessing more then what you know right now. Wait til you talk to people who are trained in what is actually wrong.

I was told my son was going to die, they were wrong, I was told by people who really had no business telling me, but they thought they knew...they were jumping the gun. Get her to a pediatric hospital as fast as you can. If she actually has a tumor..you need to know now, and needed to know yesterday. Shriners is not equipped to handle that kind of stuff, although they may be very helpful after it is removed.

How far away are you to the nearest pediatric hospital?

[drfrog1]

You're not the only one that has had experiences with stupid doctors. We went thought this with our son who is now 20 months. I believe it was because he was on Medicaid also which was our only option since I & my husband were both unemployed due to layoffs. We were told it was NORMAL for babies to turn blue in the face & go completely limp and stop breathing even. This was something that started when he was 3 months old but he'd always made weird squeeking noise when he breathed & had trouble feeding. The pediatrican called it Acute Life Threatening Episodes and said he would out grow them. It just so happened that due to him being a reflux baby & not gaining any weight for weeks at a time, another doctor in the practice had referred him to a GI specialist that had treated our older daughters years previously but there was a 3 month wait. The GI specialist's nurse called to see if we were the same parents of the girls they'd treated before so they could pull their charts to see if there was any similar issues & we got to talking & I mentioned the pediatricans response to my baby turning blue & not breathing. Before I could say boo, my son was admitted to the Children's Hospital for 2 weeks where he underwent every test imaginable. It was finally determined that something causes him to swallow wrong so he had milk going into his lungs with many swallows & add reflux into the mix, even when he wasn't feeding, he was still choking. He was the silent choker & typically doesn't gasp, thrash or anything but just freezes up.

We fought with that peds office many times after his hospital stay & we did everything possible to avoid appointments with the doctor who said there was nothing wrong with him but she seemed to purposely try to see him. She tried to take him off his apnea monitor, remove his NG tube & refused to treat his chronic ear infections saying they didn't need to be treated. We stuck to our guns & kept arguing that he needed to be treated & we had it noted that only his GI doctor could address his feeding/swallow issues & the apnea monitor and that helped.

Thankfully, we moved to another part of the state where we've found a great doctor & a therapy program for our son that are associated with the Children's Hospital still. He's had surgery to correct his reflux & had tubes put in his ears (they believe his swallow issues contribute to his ear infections) plus has a feeding tube that we use regularly. They're still monitoring him for a tumor because he's got classic symptoms of a tumor with his swallow issues but none have shown up on his scans. He's now learning to drink thickened liquids & hopefully he'll eventually get to regular drinks.

Document everything. Ask questions, especially if something doesn't seem right. Just play nice with the doctors but don't let them run over you. You know your child better than anyone. Don't focus on the negative possibilities like tumors & stuff but rather enjoy everyday with your baby as she'll grow up before you know it. When they offer you an appointment, ask if there is anything sooner. If they say no, accept the appointment & ask if you can be put on a wait list for a cancellation (if you have the flexibility to get to an appointment at a minutes notice).

Hang in there ... if it doesn't kill you, it just makes you stronger.