Friday, October 8, 2010


Today I finally decided to write letters to the two doctors we have seen who were wrong about Joshua. The one in Greenville I feel like I really put him in his place, where he needed to be. The one in Charleston I just let her know that we chose not to follow the path she tried to put us on. Here they are.

Dear Dr. in Greenville:

You may not remember me, my husband or my son but we saw you in May of this year. It was a brief visit during which you only mentioned the possibility of Autism. I sent you an e-mail and also discussed with you during this visit the possibility of him having sensory issues without being Autistic. You seemed to dismiss this possibility and I know that such a disorder does exist. You have been the only professional to see the possibility of Autism in my son. All other professionals (doctors and therapists) completely disagree with this. He is, however, going to be evaluated for Autism. It turns out that the reason for his developmental delays is a genetic condition that was discovered by a visit to Greenwood Genetics and a blood test, the microarray. It is MECP2 Duplication Syndrome, an x-linked neurodevelopmental disorder. It is possible that with this disorder he can have Autistic like behaviors or symptoms and he does have sensory issues which could be under that umbrella but he does not have any other Autistic behaviors or symptoms. We saw a neurologist this week who was very impressed with Joshua’s eye contact and how social he is. I just wanted to let you know what the status was of our son. I hope you will take into account the possibility of Sensory Integration Disorder as a cause of other children’s behavioral or developmental problems. While those with Autism do have sensory issues it is not required that you must have Autism to have sensory issues, it can stand alone or be associated with something else. We will not be doing ABA therapy with Joshua but will continue with occupational, physical and speech therapy as well as sensory integration therapy and cranial sacral therapy.

Elizabeth Brown

Dear Dr. in Charleston:

You may not remember me, my husband or my son but we came to see you in June of this year. I found you through the Sensory Processing Disorder’s website, listed you as a pediatrician who specialized in sensory disorders. I have to tell you that we were made to wait an hour before we saw you and we were coming from Columbia, I feel that is too long to wait. Your assessment of him was brief but you said you would be in contact with us and all of his therapists. We did get blood work and an eye exam done but I had to make quite a few phone calls to ensure those appointments were made. You never did contact any of my son’s therapists and I was disappointed, I felt that you would help us and I was let down. We have found an OT in Hartsville who has been helping my son with his sensory issues. We did not choose to change his diet though the blood tests said he was allergic/intolerant of some foods. We saw an allergist who said that since he was having no visible reactions to the food that he did not think we needed to worry about it. I feel that we have so much to worry about with our son as it is that a drastic change in his diet would be too much for all of us to deal with. We have found out that our son has a genetic condition, MECP2 Duplication Syndrome. It is a x-linked neurodevelopmental disorder. So it turns out that his delays are not caused by food but by this disorder and no one that we have spoken with has thought that changing his diet would help. We are continuing with all of his therapies; occupational, physical and speech and have added sensory integration and cranial sacral therapies as well. We saw a neurologist this week who was very impressed with our son’s eye contact and how social he is. We are having him evaluated for Autism, with his disorder Autistic behaviors and symptoms are possible but we are only seeing the sensory issues. I just wanted to update you on him.

Elizabeth Brown


Angela said...

VERY well written. Wish I had the guts to write those to a few doctors.

Elizabeth said...

Thank you, Angela! I am so glad I did!

Shelby said...

With Alexander's birthday coming up, I'm reliving that time in my head all over again. And while there are some letters I'd like to write-and hand deliver in a parking lot-I'm not sure I could be as professional as you've written there. I WILL eventually write one to the doc who discharged us from NICU, THEN called 30 min later on cell phone to say it was a fatal illness & she couldn't help-Grrrr.

Nicely written letters.

Elizabeth said...

Thanks, Shelby. I have to tell you how wonderful it felt! I really don't consider myself a writer so I really appreciate all the nice comments!

Jo said...

Wonderful job on the letters! I wish I had the guts to write to certain "specialists" who have worked with Monkey. One in particular was a neurologist who told us that there was no way Monkey could have had a stroke because he's so smart. Talk about a backhanded compliment! He also told us that it was OK that Monkey has hemi because, and I quote, "You can always have more children." In other words, my letter to him might be a little less than polite.
By the way, if you don't mind my asking, how does Joshua's Sensory Processing Disorder affect him? Monkey was only recently diagnosed with "mild" SPD.

Elizabeth said...

Jo, we don't know that he has SPD. It's been theorized by numerous specialists but none are specialized in it. He does have sensory issues and for now we are just trying to treat those.