letter to our old ped, and response

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I posted the results of this letter to the Main board, but at Cayley's Mom's suggestion, I'm going to post here as well.

The Reader's Digest version is that my son's case was handled very nonchalantly by his pediatrician, and so I wrote their office a letter about it. Just when I'd become convinced that it had been thrown away and disregarded, I was contacted by a Director of Patient Care at the main medical center regarding my concerns. She has assured me that not only this pediatrician's office but ALL the offices they run (family practices, etc.) are being revamped in terms of food allergy education. Inservices have been scheduled for all staff members and the protocol for handling suspected food allergies is being changed, updated, etc. I'm very pleased that my voice was heard and perhaps the next child through their office with PA will be better served.

I'm attaching the letter I wrote in case it's of interest to anyone. I mailed it to the office manager at the ped's office (rather than to the attending doctor) and it was then forwarded further up, I guess.

(Oh, and an aside... I considered removing the names of the practice and doctor in copying the letter, but since they are taking action on this matter I've decided to leave it in. Maybe someone in southern NH will be glad to have this info about them!)

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Dear Madam:

I am writing this letter in hopes that our story will impress upon you the need for better education at Nashua Pediatrics on the subject of food allergies. It is my hope that other parents will perhaps be spared the rather harrowing journey we have just been through.

On Saturday, January 20, 2001, my 13-month-old son Isaac had what we now know was an allergic reaction to peanut butter. At the time all we knew was that he was swelling up with hives and wheezing in response to a food that had never been a problem before. My husband and I immediately called the Nurse

On Mar 30, 2001

Go Miriam, go Miriam, go Mariam!

On Mar 30, 2001

Wow, great letter, Mir!

The name of this Doctors Forum used to be "Doctors Need More Education on PA" or something similar, and your letter is a prime example of that.

I don't know why Chris changed the name of this Forum to simply "Doctors". Maybe some doctors were offended - but we can't deny that some doctors DO need more education ESPECIALLY on PA.

In a health care situation, the onus shouldn't be on the parents to diagnose their own child - Isaac is simply lucky to have such proactive parents. I shudder to think of this situation, which is probably routinely played out across the country, resulting in a serious reaction for a child.

Some people take their doctor at his/her word and don't follow through with research on their own. Because of my experience with the ER doctor (who downplayed Cayley's reaction), my husband was convinced that a mild peanut allergy is possible. That there must be people in the world who have never experienced a severe reaction - I tried to convince him that PA is unpredictable. Sure, it may start out mildly, but you can never predict the severity of the next reaction.

Nevertheless, for the next 2 months after the ER incident, my DH was expecting good news from the allergist, based on the ER doctor's assessment. He (more so than me, who was expecting it) was devasted when the allergist explained Cayley has a "killer" allergy. The word "life-threatening" came up several times, as well.

ALL doctors should do as you ask in your letter. An automatic allergist referral for suspected PA is perhaps the best outcome your letter could have had! I had to fight for a referral too - and Cayley had already suffered an anaphylactic reaction to milk formula!

The ER downplayed this as well, years ago when she was an infant. No mention of anaphylaxis was made, and we were referred to a pediatrician, not an allergist. Her symptoms after ingesting milk forumla were this:

(1) Chocking, excessive mucus and drooling

(2) Hives, from head to toe - everywhere

(3) Loss of consciousness for 5 minutes

What did they do when we got to the ER? No mention of anaphylaxis (thought this was clearly it). They spent 20 minutes deciding on a dosage of Benadryl for a 7 week old (shouldn't this information be readily available?). Then they sent her to X-ray, because I had suspected she stopped breathing while unconscious, so they thought there might be something lodged in her throat. In hindsight - ridiculous treatment. Since when does an allergic reaction require an X-ray?

Kudos, Mir - your letter is a wonderful addition to this web site. Hopefully it will empower more people (like myself) to insist on safer treatment for allergic children. Two thumbs UP! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

On May 8, 2001

Oh, the memories this just evoked from my days in the care of Nashua's pediatricians!!! I travel to MA. for that now too. One Doc gave me a sermon about my son clearing his throat repeatedly because he had a psychological tic...He kept claiming his throat was closing...It was indeed!!!! Food allergies!!!! I still can't believe we payed her for those visits!!!

Also to note, in good old Nashua...Avoid Chuck Capetta at the Matthew Thornton Clinic....He doesn't get it!!! He actually placed snacks while he was playing the poster-child doctor at my childs school...Put snacks right on all the desks; he never asked if anyone had food allergies, let alone diabetes...What a loser!!! I was so thrilled that my son was smart enough to PASS...But I must tell you it certainly was greatly disturbing that the Good Doc didn't have the common sense to ask about dietary restrictions....I mean, he is a pediatrician.

Local E.R. was also a near fatal disaster.(they "ran out" of long acting Epi when we were in....That caertainly did not make me feel too safe...My hospital along with several other local facilities could NOT provide the meds. necessary to halt this dreadful reaction....We had to drive to the city...Talk about frustrating experiences...I thought once you arrived they took over and fixed it...Not always so...You even have to be aware at the hospitals.

My thoughts were, we couldn't trust for an easy trip to the E.R. there if we unfortunate enough to have a reaction.

I also had one e.r. doc at the S.N.H.R.M.C. mock my son over his Latex allergy...I was there with my sister, she and I both could hardly believe our ears.....Some just don't get it.

Stay safe.

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