letter to pediatrician - need advice

Littlejen22 · May 2009

I am really upset with our pediatrician's office right now. I am not sure why I am more upset today, I think it is because I was at my neice's Communion today and talking to two physical therapists about DD's torticollis. I am upset because there were so many times that it could have been caught and was overlooked and now my poor 4 month old happy baby is put through hell at PT and she is still tilting pretty bad. I am not sure exactly what I hope to get out of writing a letter. At this point I am not sure if I should look for a new Pedi either - the Physicial Therapist's office is right next to one of the pedi's office and she told me she would recommend another pedi if I wanted.

Here is what I have written - please give advice.

I am writing this letter to voice some concerns regarding the care my daughter has received from your practice. First I want to state that we have been using your practice since the birth of my son in December 2006 and had always been happy with the care he has received from all of the doctors in the practice but I am now having concerns regarding what I feel has been rushed care.

My daughter was officially diagnosed with torticollis one week before turning 3 months old during a sick visit with Dr. J. The diagnosis came after I asked the doctor to examine her because she was tilting her had and curving her entire body to the right. As of me writing this letter she has received eight weeks of physicial therapy.

My daughter was born my cesearean section. Within the first hour of her birth the neo-neatologist that saw her told my husband that her head seemed "crooked" and advised him to talk the the pediatrician about it. The following day when Dr. Y came in to see Addison I asked her to look and she told me everything looked fine. Addison came in at approximately one week, one month and two months old and all three times she saw Dr. J. Never during any of these first three appointments did he speak of any concern about her tilting her head or body. Also he never examined her while she was on her tummy or he would have been able to notice that she was curving her back.

At approximately three and a half months Addison had another sick visit at which time I informed Dr. M that the Physical Therapist had asked if Addison had ever had any imaging done to rule out any abnormalities of the neck. At this time Dr. N wrote me a script to get an x-ray of the cervical spine. At the request of the Physicial Therapist, I requested by phone and received an additional script to have an x-ray of Addison's hips.

At her four month exam I asked Dr. F about the results of the x-rays. He said he did not see the results in the chart so he left the room. When he returned I was informed that everything came back "normal" and he handed me the copy of the report. When I got home I noticed that the report only mentioned the cervical spine and not the hips. I called the office and was informed that Freehold Radiology did not send a report from the hips but the person I spoke with requested it. When I spoke with Dr. N, I was informed that the x-ray results were in fact not normal but rather were inconclusive and the Radiologist requested further imagine to confirm if there is in fact an issue with the right hip.

Addison is still tiling after 8 weeks of physicial therapy. At this point I am waiting on our scheduled appointment with Dr. U from Orthropedic office to confirm if Addison's tilting is indeed caused by muscular torticollis or if there is an issue with her hips.

I am writing because I feel like there were many opportunities where Addison could have been diagnosed and all of those opportunities were missed. If she was diagnosed at birth or shortly after we would likely not be dealing with a four month old needing physicial therapy two times a month. And if there is an issue with her hips we would be further along with a diagnosis and treatment.

As I have said before, I had always been happy with the treatment that my son received at by your practice but I am saddened to feel that Addison's diagnosis was unnessisarily overlooked.

championmama · May 2009

IMO, it seems a bit wordy. I think you would be more effective if you left out the specifics like "we saw Dr. J at 1week, etc, etc" and dr. M said this, etc, etc". Keep in there you're general concerns and why you're upset and the result of their actions. But, I'd give more specifics in a meeting with the docs or office manager. Unless you want to keep it all in writing???

julesandross · May 2009

Sorry you're upset. Have you brought up your concerns to your pedi in person? I agree with the pp that there is a lot of info there, and I might personally keep it more concise; I'm afraid the reader might get a little lost in the details.

And, just curious, what's the concern with her hips? I know hip dysplasia and torticollis are associated, but are there clinical signs that something is going on?

Zenya · May 2009

I agree that it is too wordy. I would lay it out in timetable/bullet form. Good luck!

Temp374386125003286 · May 2009

I'm sorry you are going through this. That is so disappointing that your ped didn't do something or dx sooner. keep us posted on the response you get.

amanda&rob · May 2009

Addison is still tiling after 8 weeks of physicial therapy.

Do you have a typo there? Do you mean tilting? And there is a typo on the c-section sentence, but I think that you should omit that when you edit your letter anyway. I agree that it needs to be shorter and to the point. He may see a long letter and just skim it and missing all of the important parts.

berry25 · May 2009

I think the main problem with your letter is that you are not saying what it is you want. Do you really want to just document your concerns - or do you want to request a sit-down with the doctors and office management team? You need to be specific. Do you want a follow up phone call to discuss this letter upon receipt? ARE you looking to sue? I think you need to figure out what your goal is for sending this letter and be very clear about it in your letter.

littlemermaid · May 2009

I'm sorry you and your DD are going through this. Now to your letter, you don't have a purpose to your letter. What are you trying to achieve by sending this letter? If you just want to state why you are leaving the practice then you need to say it. But in all of your letter, no where does it say what the purpose of the letter is for. It's also a bit too long. Just stick with the key points and make sure there is a purpose stated.

Heidisean · May 2009

I am sorry you are dealing with this. FYI, when a child has torticollis there is usually something else with it on the same side such as hip dysplasia (very, very common). Also, torticollis takes awhile to resolve and after 8 weeks I would not expect to see it resolved. It usually takes up to 1 year and even after that when a child is tired or sick or upset you sometimes will still see the head tilt. Are you doing stretching daily (with every diaper change) because that is what is recommended as 2 times a month for PT is not enough. As for the letter, I would bring this up face to face (adult to adult) with the pedi or ask to speak with the manager. I am a pediatric OT and deal with torticollis often as it is a common diagnosis. My bff who is a PT, daughter was born with it as well as hip dysplagia (and had to wear a hip brace for 4 months) and now at 2 1/2 years is still tilting her head when tired, upset or sick but otherwise is at midline. GL.

DaisyAdair · May 2009

This is a HUGE pet peeve of mine. Both of my DDs had torticollis. Both times, they were sent for an eval with a pedi PT because, as my pedi says, THEY are the experts.

I see it so often on here - oh, just do these exercises at home and it'll be fine. Unless you're a PT, how do you know what you're doing?

DD2 had it worse in her mouth. I had no idea it could cause problems with the jaw and tongue. Not to mention other permanent problems related to vision and facial features. It's not a joke and it pisses me off when I see yet another pedi blowing it off. DD2 also had hypotonia on the non-favored side. Granted, the pedi didn't do a thorough exam since he sent us to the PT, but he never noticed her jaw issue or the hypotonia. Neither did I - I'm not trained to know what to look for or what to do about it.

We were in PT 2x a week, plus doing things at home. It went on for months (about 6mo with my oldest and about 8mo with my youngest since she had all of the other problems). We got to my oldest pretty early, so hers was easy to fix. The little one didn't have as severe a tilt since hers effected her mouth more than the outside of the neck. We didn't notice it as early.

I'd definitely bring it up to the pedi.....if anything, maybe it'll change the way he deals with this condition. I just don't understand sending parents home to do something that people go to school for years to learn how to do. The massage techniques and the stretching techniques....I don't know any of that. I'm not trained.

Good luck with the PT. My oldest is totally fine now and my little one....we're still doing some work with her and she'll have a re-evaluation in about a month to check the jaw issue and the hypotonia, but her head is straight now.

Andrewsgal · May 2009

I know you are upset, but FWIW DS's PT says any torticollis caught on or before four months is very very early. My DS was caught at 2 months because of me and he is still recieving PT.

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