We get lots of mail about the practice and the children that we help. I often tell parents not to believe most of what is posted on the web, ’cause, as they say, “If you’ve taken care of one kid with autism, you’ve taken care of one kid with autism.” Experience being our greatest teacher, here are some letters that document our practice’s development (stressing the word ‘practice’):
From Dr. Susan Widmayer, Administrator, Children’s Diagnostic & Treatment Center, Inc.
Early Steps – My First Autism Clinic (April, 2008):
Thanks, Brian. We are all very happy and excited. These children are among the most tragic we see and the parents are most definitely the most distressed. My hope is that we will be able to: 1. help the parents by giving them confidence that we are there for them and that we will be following their child with great care; 2. provide whatever intervention services that are most appropriate to each individual child; 3. establish a theoretical question and a sound research approach to gathering data so that the clinical care will help guide the future work; and 4. approach funders so that we can obtain support that will allow us to provide whatever evaluation and interventions are really useful in ameliorating the effects of the condition. Of course, if we could find a real pattern that gives us a clue to the origin of this condition, I will be very happy to carry your suitcase to Stockholm!!
November 2008 – First email from patient:
Thanks so much for seeing us yesterday. It was a pleasure meeting you and Karen. <<my child>> wants to know when we’re going back. I suppose I should have been upset with your news; however, I found myself kind of excited. It certainly makes sense and answers a lot of questions that we’ve had for the past 10 years. I really appreciate your frankness and directness in coming up with some possibilities. After talking with my husband and sister we think we’d like to give this a try. My sister is particularly interested as she has arthritis, another auto-immune disease… When we talked in your office you mentioned B12… So we’re saying it’s a go if after you have read the information I gave and still feel confident with your diagnosis. Let me know our next step. We’re just delighted that our path crossed yours.
November 2008 – from our Kind and Efficient Practice Administrator, Karen:
FYI the GSH smells like S.H.I.T.
“…Reflux has gotten so much better since we put him back on bethenecol- screeching is gone and he is eating well. He was shaking his head after eating which seems to have subsided as reflux has stabilized. Very infrequent spit ups 1-2 a week, and small. We are working on more solid foods- cereal, smashed banana, mashed potato, avocado and he is doing better with slightly thicker. Am going to try ground sirloin burger tomorrow…”
I just wanted to “check in” with you. <<my child>> has 10 days left of the Valtrex presecription you wrote us…. so we’re 20 days into the antiviral treatment right now. He is doing absolutely amazing. He had a really high fever (over 101) and a bad diaper rash for about 3 days, followed by a cold (the rest of the house caught it as well, so it was not Valtrex related) but after that was over, he was a new kid. Literally…
I just wanted to let you know we are seeing progress in <<my child>> after only 3- Mb12 injections. All of his therapists have commented on how well he is doing as well. Thank you!
Well we just wanted to let know whats been going on. The boys started kindergarten its only been 2 days but they are doing fine so far. We are so proud of them… It is taken a little longer to come to see you because <<my child>> was seen by a pediatric dentist and needs some serious dental work. You were right about his teeth. Thanks for the heads up…
I wanted to take a moment to thank you for your time yesterday. Leaving your office was the first time we have taken <<our child>> anywhere (and trust me we have been a lot of places) where we have felt hope. We are very excited to see where this goes and are very grateful to have you in the journey of helping our son.
…Following up… since beginning diflucan..-the glutathione- multi vits- fish oil- and iflora….<<my child’s>> belly went down…it seems unswollen to us….he completely stopped banging his head on floor after 2 days on protocol….he stopped hitting us …( we think he was then hitting us to communicate his own pain, which he did not know how to put into words)…he stims less….climbing has stopped…sleeping is great…. interaction has increased….so did his communications skills….he went from 2 words sentences to now 3-4-5 words sentences…he says please every time he ask something….he points at what he wants as well…(ex; ” this one mommy please”..while pointing)…we have witnessed multiple progresses….we are so amazed….and so happy…. Dr udell…we look forward to see again… .thank you so very much…. we are so pleased with <<my child’s>> progress already… WE ARE SO BLESSED TO HAVE FOUND YOU….
January 2010 – another one from our Kind and Efficient Practice Administrator:
This week one of Jake’s spelling words was ‘piece’. He had to write sentences at school for each word. His sentence was ” I want a piece of bread”…(the thoughts of a child on a GLUTEN-FREE diet).
Thank you Dr. Udell for putting the results in english for me. I have some questions about this fungus in her gut but I can wait until I see you on March…
We are sending you a picture of <<my child’s>> rash. As you can see, it’s not red any more, but today we noticed he has more little bumps on his forehead…
I know you mentioned increase in stimming, jumping, hand movements etc. Do you know how long the increased stimming will last? He has never had an excessive amount of spinning and have noticed spinning this past week. I went to pick him up at his preschool in the afternoon and he was spinning around in the gym. Should I be concerned?
I wanted to let you know that <<my child>> started his 3rd refill of diflucan and this week… and the first box of the probotics… still on glutathione… multivitamin… His therapists are reporting improvement in eye contact, communication and sensory tolerance!! His teacher still deals with his tantrums although much better in terms of duration and intensity but still random and over reactive… we went to Disney and he behaved exceptionally well despite the sensory over stimulation. that may just be what he needs…more stimulation overload then a human can provide:)
I was having a hard time getting <<my child>> to take the glutathione. I had been able to get it in his gfcf waffles or pancakes, etc., covering with syrup but he is now getting upset (yelling and biting himself) and stops eating and he’s not eating that much to begin with. It is a struggle everyday. Once he stops eating I can’t be sure if he even got it all in. I will buy another bottle and continue to try if you think that’s what I should do…
We believe that <<our child>> is still experiencing die-off symptoms. His behavior is more aggressive and irritable with tantrums. On a positive note, when he is in a good mood, he is repeating more, manding more, and demonstrating normal play…
You get the idea. Different patients, different problems, different solutions.
Thank you all for reading, and my great families who allow us to assist in their children’s recovery.
Brian D. Udell, MD FAAP
Child Development Center of America