Posts Tagged ‘DAN doctors’

A Successful Autism Doctor Visit

Sunday, February 18th, 2018

This story is a total rip-off. The New York Times recently featured a worthwhile piece entitled, A Doctor’s Guide to a Good Appointment. In that vein, I couldn’t help but add my two cents worth of advice about how to make the best of a family’s first visit to a developmental specialist.

Finding a functional medicine specialist.
The opinion of a pediatric neurologist is a good start. But, time is of the essence and evaluations that involve months of waiting serve the patient poorly, because they represent needless delay. A trusted pediatrician can be a great help. Therapists’ views are important because they are independent observers who know the child more intimately.

However, if you still can’t put your finger on what’s wrong, and if you find that you have been going to a variety of specialists (e.g. GI, allergy, dermatologist. pulmonologist), maybe it is time to seek a modern medical viewpoint. When possible, ask other parents about their research and experience, but don’t forget that every child is unique, so this merely represents one piece of the puzzle. The most reliable web advice is to be found at the Medical Academy of Pediatric Special Needs clinician directory.

Before your visit:
Labs, X-rays, MRI’s, EEG’s, IEP’s, psychological reports, hospital records, and evaluations of all types are extremely helpful. It is understandable, however, that some parents may prefer a completely fresh, unbiased opinion, perhaps saving that data for a future visit.

At The Child Development Center, we find videos extremely valuable. Taking the time to produce a written history with your specific concerns often yields the most satisfying consultation.

On the day of:
It may be difficult to appreciate the anxiety that all family members experience in this situation, including the child. Another stranger. More tests. Overcoming fear may require social stories, bribery, a favorite food, electronic devices, or some other tested method.

Either a picture, list, or a bag of the present medications and supplements, streamlines the visit. Plus, any archive of past meds – what worked and what didn’t – can similarly improve the efficiency of the interview.

Perhaps it goes without saying, but be sure to bring along any familiar toys, blankets, etc., so that the doctor is able to observe the children and the parents can focus on the conversation. Whenever possible, a close family member or therapist will be a valuable addition to the team.

An open discussion with the practitioner is imperative. Even the tension caused by a family’s disagreement about whether there really is a problem, is important in making an accurate assessment and creating a useful treatment plan.

Back at Home:
Perhaps this is the most difficult part. Who should you believe? Have any of the previous treatments been particularly successful? Has the child reached some plateau where he/she seems stuck? What are the alternatives? Listen to your heart.

Having reached some degree of non-conventional intervention, there may be a desire to further micromanage. Can 2 functional medicine doctors perform better than one? Although parents who attempt this course may be correct, a mixture of protocols could delay improvement. Get started with one intervention at a time, and become comfortable that nothing is causing harm. Be clear about what skills you are targeting and document progress.

Not infrequently, the treatment can involve periods of increased aggression or even regression, due to the ‘die-off’ of harmful organisms, food restriction, arduous therapy sessions, even new-found skills and sensory overload. Close contact with the practitioner (via email, phone, follow-up visits) is a must at this juncture, if the treatment plan is to be followed and successfully implemented.

Conclusion
All of the points in the ‘real’ Times article are well-taken and valuable in this instance, as well. Hopefully, this advice will serve to make the experience of taking the next step in your child’s journey even more productive.

Is It Time To Take Your Child to a Functional Medicine Pediatrician?

Monday, January 1st, 2018

Leilani, Karen, Dr. Udell, Isabella, Lisa, Julian & Ashly

I’m not a big fan of posting patient testimonials. Miracle treatments are frequently reported as gospel. Plus, it’s pretty unlikely that any practitioner would advertise negative information about their own organization.

On the other hand, many Googlers, my wife included, view such information as valuable insight into how the doctor practices. Readers may gain confidence that a visit could be a worthwhile pursuit. Here is a sample (all names are fictional) of this year’s correspondence at The Child Development Center:

Education
 Hi Doc! I think you would love to know we had the meeting to move him to regular class and he attended in person, answered the questions and explained his reasons to change his placement and was successfully assigned to his new schedule of classes beginning after the winter break. He also picked his electives.. I couldn’t believe my ears and eyes. I’m so thankful to your guidance as I don’t think you can imagine because you gave our family our child back and this is a priceless gift to a mom. May God bless you in all the ways possible as you honor Him in your practice.
 Alfie is doing great at school… and behavior is improving a lot. We are pushing for regular classes, since he has shown more abilities than the classmates… We had an appointment with the Developmental Pediatrician and he said that Alfie needs medication, which we are not going to do.

Feeding
 No evidence of lead toxicity from Billy’s tendency to eat things [pica]… And, good iron level!
Please share with Dr. Udell.

 How do you tell if a child is deficient in folic acid? Have you done this test in Genesis?
<Anti-folate antibodies and MTHFR gene analysis. And, yes we did check.>
 Hi. I’m running low on glutathione. Is this one OK to order?
<No. Please order the one that we suggest.>

Glutathione and Methyl B12 injections
Since starting 5 days ago, he is still requiring some prompting to communicate, but he is already starting to accept ‘no’ more… The therapist also noted that he is asking for things independently without prompts. So there is definitely progress being made. I can also tell his speech is continuing to improve… Thanks again for all of your wonderful guidance. It’s a true blessing to see Derek making strides after a rough patch!
I have been giving Goldie the b-12 shots 3/ week for 3 weeks now and she is trying to talk more… Should we give something to help with focus?

Aggression
 Jim has calmed down and the tics are gone in the last 2-3 days. Meltdowns have stopped completely… Still worried about repetition and comprehension… Focus not there.
 Just to let you know that after we increased the dose of Sonic (cholesterol), Sammy is doing so much better!! Talking even more, more common sense! Asking a lot of questions! It’s amazing! We just started the 5-HTP and her behavior has improved… not hitting (still crying and throwing, though)…

Speech
 Sean is doing great, he is speaking and singing more spontaneously… some days more clarity than others… He’s been interacting more with baby sister and his peers.. appears more present. Bowel movements have been great…Still lining up and visual stimming… We just celebrated his birthday and for the first time he sang happy birthday and it was clear! I have attached a video…
 I’ve already noticed Bobby’s using longer sentences and more descriptive words since putting her on the probiotic/turmeric!

Socialization
 Billie is doing great, she has above average speech and comprehension. She plays well around and with others, now. She does seem to be fixated on physical appearance… very literal… doesn’t understand sarcasm… unempathetic but rapidly improving with every teaching opportunity… some clumsiness and weak core tone, rigid routines, but improved fine and gross motor skills. Her oppositional behaviors have decreased to be considered age appropriate…
 Shaquel is doing great, he is speaking and singing more spontaneously and his speech is usually much more clear… Behavior is good… he has been interacting more with baby sister and his peers in school. He also appears more present and has started smiling and saying ‘cheese’ for the camera! Bowel movements have been good… still visual stims and teeth grinding, but improved in last few weeks… We just celebrated his birthday and for the first time he sang Happy Birthday and it was clear! I have attached a video…

Naltrexone
 The Low Dose Naltrexone has been amazing. The day before we tried it, I read an article in which a mother said that her child stopped his self-stimulatory behavior 3 hours after applying the first dose of LDN. We had the same experience. The only “stim” Manny really had was that he would put objects up to his eyes and look at them closely. We’re not sure whether it was an actual stim, or whether it is related to his exotropia. In any event, we rubbed the cream on Manny’s wrist, and literally the next morning (after 1 dose), he completely stopped bringing objects to his eyes and he has been so much calmer. Also, his exotropia has decreased what seems to be tenfold since beginning the LDN. All his therapies noted that his progress since the LDN had been through the roof. Thank you for prescribing this medication. It feels like a miracle medication. 

Metabolism & Medications
 The Intuniv as you originally prescribed… has Haley completely stopped stimming, but also lethargic… We are going to proceed with your instructions to alter dosage and timing. Correct?
Robin completed his third round of Vancomycin over two weeks ago. The Vancomycin seems to keep him calmer and more focused. Since stopping the Vanc, his inappropriate laughing has increased quite a bit. It’s affecting his school work…
 After two weeks for the new supplement plan for Jon, he shows the the following-Sleeping hours at night increases from 9-10 up 11-12 hours, High level of language, Less hyper, Mouth stemming only with the salvia…
 This is regarding Jet’s progress on his new medication. I am glad to report that he is more focused, doesn’t stim, follows instructions and is more aware of his surrounding. This is really great… We are happy for the progress in calmness but torn with the emotional side effects. Is there something else we can try to still have him focused with less side effects?

Development
 Wanted to mention that for the past 4 weeks, Harrison has been full-time in a Gen Ed classroom and has been successful. He has been placed in an advanced reading group as well and gets good grades. 🤗 We are extremely happy and owe it to Dr Udell and his wonderful staff. Harry works very hard to please everyone as best he can although sometimes his anxiety gets in the way… Of course, some accommodations are made for him such as visual reminders but eventually, they plan on fading those out probably next year in second grade. He will still receive speech therapy in school as well as sensory breaks.  I am looking for a new BCBA for the Summer… Thank you a million times!  I still can’t believe this success.  Also, his brother Lucas has improved dramatically in academics and sports!
 I’m usually writing to ask for help but I wanted to send you proof that things are in fact finally coming along again… This is Gary’s very first picture drawing people. When we first met with Dr. Uddell nearly 4 months ago, he asked Gary to draw a picture and it was so immature I nearly cried. He never wanted to draw a picture bc his fine motor skills were so far behind; but he showed this to me today from day 2 in VPK. He’s behaving wonderfully so far in a normal classroom with an ABA therapist by his side for reinforcement. His speech is noticeably improving, his fine motors are improving, and his temperament is so much more manageable. He’s a true gem. Thank you all for helping us get there. I brag on your office and staff regularly.
Dr. Udell, for your record, I think I know some of what Gary’s body is detoxing. My levels came back high… I’m now working to reduce all of those for the whole house and I see a visible difference.. Your hard work and professionalism means a lot to us. Thanks for helping my son and our family!!!

Awareness
 When I came to you, our little girl was just 15 months and we were both unaware of everything that was to come with her ASD diagnosis. I went to you for the hope that maybe it wasn’t ASD, but something else. You made me “aware” that allure behaviors and presentation was indeed ASD and gave me the tools and hope to keep fighting towards her progress and development. With that awareness came courage to accept her diagnosis but not her trajectory (as most conventional pediatricians would just tell me, nothing will help, this is incurable). You helped me roll up my sleeves and continue finding new ways to help her both biomedical and therapy-wise. She was “unaware” for about 1 year during which I saw much regression and not much forward progression, but tried everything you recommended. True awareness came one day when she cried for me not being home… then when I started a new job, she said she wanted mommy to be home with her and not at work… and shortly after she said, “I love you” for the first time and asked to whisper something in my ear. She is aware! She’s back with me in this world and not just in her own. We still have some gaps to bridge with her development and behaviors but being “aware” for both caregivers and child is half the battle. I applaud you for being an amazing and true advocate for autism awareness in more ways than one. We are blessed to have you in our lives!

Sleep
 We are having a heck of a time trying to get Sara to drink her juice lately. She tastes everything. She has been off the intuniv for 3 days now and is manic!! Only sleeping 4 hours per night… no one has slept in about 4 days and she is disrupting the whole house. Stims have increased. She is happier and not tired that’s for sure. Anxiety is gone, too. She is talking A LOT… constantly like before but it’s more meaningful, not just scripting. Please let me know where to go from here.
 Geri has been sleeping well so I will continue with the nystatin 3 times per day for a month,
as you suggested…
His sleep is far better than before! Rarely, does he wake up in the middle of the night after a bad dream! But he does fall asleep immediately.. on an average, he gets 9 hours of sleep daily! His speech is better than before.. he has more number of words… Understanding is also better now! I have also started LDN from the past two months! His mood and sleep is much better!

Sensory
 increased Pat up to 1/2 tablet yesterday. We saw increased stimming and auditory sensitivity but these were the first school/behavioral therapy days that were NOT compromised by multiple tantrums in 6 months. Work actually got done. Personally, I can live with increased stimming and sensory overload if Pat can work happily without tantrums.

Yeast
 Howard finished the 8 week course of diflucan. His ABA therapist and mom/dad have noted improvements in attention span, decreased episodes of tantrums, elimination of physical aggression. We are still having problems with verbal language. It seems to be the biggest hurdle of all… His capacity to follow directions has also improved… progress with potty training… Thank you for helping us.
 I have reduced glutathione, and have stopped the B12 for this week. Started him on fluconazole. I see a change in his speech. It is much better. And, more focus and eye contact, too.
From our Practice Manager, Karen Vossen:
 You can ask me or Ashly anything. If we don’t know we will pass it to Dr. Udell. Oregano oil would be fine to try also grapefruit seed extract and more natural anti-fungals. Probiotics help keep fungus down. I will forward to Dr. Udell for anything else he might suggest. You can also email him anytime, too

Poop – Lots of pictures of stools to greet me each morning! Rashes, as well.
 Good day – as per your request earlier today here is a picture of Liam’s poop
(it does not float) the poop stinks.
 Please check out the attached picture. Over the past few weeks… gritty bowel movements…
He basically eats … Do you have any thoughts on this?
 The school nurse asked me to pick him up from school today because he had a rash on his
face upper chest and upper back.
 Meryl has a bumpy red rash all over her arms and on top of her palms. The rash is continued under buttocks to below her knees. It almost looks like red goose bumps… At first I thought she may have eaten something she was allergic to… Will this rash diminish on its own?
 He also has this rash on the inside of his arm. Not sure if it could be linked to all this or not but i’ve never seen this on him before and he’s had this about a week. The motrin seems to make it go down a bit and it flares worse when the motrin wears off.

Guidance & Communication
 I am interested in scheduling an evaluation with you for my 5 year old daughter. I follow you on FB and am very interested in your philosophy and understanding of the pandemic in this country of ASD.  I am an RN and my husband a physician and we have never completely bought into the whole “genetic” causation… I have yet to have a pediatrician agree with anything that throws vaccinations under the bus or connects them in any way to ASD. (and let me clear, I am not an anti-vaxxer)…
I would like to know what kind of testing you do and if you and I are on the same wavelength as far as philosophy goes. I’ve been very disappointed thus far by the medical community in their knowledge, approach and desire to dig deeper than just a psychoevaluation. To date my daughter has never had a medical work up to ensure his symptoms are not being caused by something other than a DSM-9 code/label slapped on him by a pediatric neuro-psychologist. As you know it can be very costly to go from place to place so I would just like to know before scheduling if we are in the same stratosphere regarding approach. Thank you so much for taking the time to read this. I look forward to hearing from you.
 Rhianna and I really enjoyed the visit with Dr. Udell and everyone in the office – what an inspiring and empowering culture you foster!  We look forward to working together with you going forward.
Dr. Udell understands if you don’t want to do expensive lab tests so be sure to speak up or tell him you want to think about it… He is very easy to talk to. My son goes to him and we don’t do all the suggested lab work, we did it all a long time ago… Overall I don’t feel any pressure and I’m glad we have him to reach out to… His staff are all great too, any phone calls are followed up on.
Sending you this email is not just gratifying but it is full of thanks and appreciation towards you and your team. In just about 3 weeks of our lab results and changing Raul’s diet thanks to the labs you requested , my wife and myself are deeply thankful towards you Dr. Udell , I don’t think this is just a coincidence but since we have changed his diet and casein free products i mean his improvements are seen through so many eyes that its not just us as parents. His grand parents , teachers , cousins have seen Raul as a smart fun kid to be around. Just a couple of nights ago he was playing TAG with his cousins. He went to a farm with his grand parents and other cousins , Raul usually wondered in open field , but not this time he stayed in the pack and did everything their cousins were doing , if they jumped he jumped, if they chased a chicken he chased the chicken i mean even the grandmother was so amazed on his development it was just so amazing, not once he wondered around to another places , he stayed where every one was. My wife picked Raul from day school the other day and she did hide so he would not see her ( Raul has impressive eyesight, that’s why we try to hide just to see how he plays, he can spot us just as we enter the day school even if he is yards out or doing something else) Raul that day was in the middle of playground with his classmates and talking with them (in his language but he was in the middle with all his classmates, something that did not happen quite often. His teachers are amazed that his is doing everything they ask… he enjoys music , sings , dances and now paints . I don’t know what to say but this is just 3 weeks that passed and its something just such a great feeling that even my wife which is the most negative of both of us is all SMILES and enjoying her son. Thank you with all my heart Dr. Udell , thank you so much, we would never know about this if it wasn’t for you and your team. I could tell you so much more that happened during this 3 weeks that it would take you so much time to read, but really THANK YOU! You changed my son’s life and our families’ life and we just hope this is not a fluke and that this will just get better and better. Thanks for putting a smile to my wife and to my son. THANK YOU THANK YOU.. words are just not enough to thanks you ! Have a great weekend Dr. Udell. My family send you all our love ….

Conclusions
Of course, not all of our work results in the most positive of outcomes. There were many daily emails describing events that required additional interventions. However, by answering the calls and emails, and staying up-to-date with the science and the families, we continue to have an increasing number of children who experience improvement, if not complete resolution, of their childhood developmental challenges.

Many thanks to our amazing families, the patients,
and my wonderful, caring staff.

Ten Top Toys Not to Get Children Affected with Autism for the Holidays

Thursday, November 23rd, 2017

Maybe this list applies to all modern kids. Especially as regards offspring who are ‘on the spectrum’, our experience and perspective from The Child Development Center can assist gift givers with decisions about whether holiday offerings are consistent with recovering challenged children, as well as making them happy.

What Not To Get Junior for the Holidays

1. Toys that talk to your kid. It’s supposed to be the other way ’round. Imagination through a favorite dolly or stuffed animal, and self talking, represent practice in communication. If someone has to invent a robot that speaks, it should also prompt. Can you imagine that conversation?

2. Stuff that fosters repetitious behaviors. Scrubbing Angry Birds on a digital screen preys upon the fabric of the youngster’s repetitive behaviors. Similarly, devices that enable constant You-Tube video re-viewing foment restricted interests.

3. Most digital gadgets, unfortunately engender those problematic criteria previously listed (#1, #2). i-Things should be reserved for when the parents absolutely cannot attend to the child, rather than becoming a body appendage. And, whenever possible, use a timer to notify the child, “No more.”

4. Presents that are primarily intended for indoor use. There’s already plenty of entertainment throughout the house, and miniaturized for portable use. Encourage healthy outdoor play. That means added work for families of special needs children; but scooters, trampolines, swings and parks – even if your child just watches – are worth a great deal more than another box of Legos.

5. Too many items. While it’s important to promote variety, as witnessed through the oft-uploaded FaceBook album depicting an orgy of holiday presents, that superabundance cannot promote anything but indifference to a truly valued item. As many parents know, just getting a child who is affected with ASD to appreciate any toy is a victory.

6. It’s difficult to completely eliminate preferred playthings. We show our love by gifting pleasurable items. But, those who thoughtfully provide a child’s favorite Disney movie or Star Wars model (when they already have 4 that are similar) might find their special item tucked away for another occasion.

7. Pets that you, the parent, don’t want to take care of. Because, no matter what any other family member claims, the purchaser of the animal is the de facto feeder, caretaker and parent of yet, another ward.

8. Any toy that emits an annoying noise. Frankly, if it makes any noise, the buyer should listen to it, like, 75 times, to experience the real gift. And, ‘friends’ who insist on giving your child such an annoying offering, aren’t really your friends.

9. Even objects that you don’t think can become weaponized may turn into dangerous flying objects. But, those that start out that way are suspect. Sure, that lightsaber looks appealing and fun. But will little princess Leah be bonking brother Jimmy on the head with it?

10. Gadgets with an easily accessible battery compartment. Even when the power is kept in a secure section, Junior may figure it out, especially if reinsertion into a body part is their mission. But, as you are traveling to the ER, you will know that, at least you tried to protect the child.

Conclusion
The message is, think twice before plunking down your precious dollars that could be otherwise spent on valuable therapies, which are necessary to promote healthier development. As with neurotypical kids, the box may be as entertaining (and better play) as the toy inside.

Consider the child’s state of autism. Not unlike many other areas of a special needs child’s life, it’s not fair, but even purchasing gifts requires extra evaluation.

Is Big Pharma Knocking Off Functional Medicine Doctors?

Saturday, November 18th, 2017

I awoke one morning recently, to this shocking Facebook post: 77th Holistic Doctor Shot Dead In Her AZ Home With Her Entire Family.

Considering the violent circumstances surrounding this daunting list of clinicians’ deaths, including Drs. Jeffrey Bradstreet, John HicksRose Polge, etc., I wondered, “Are they coming after me, as well?”

Why I’m really not worried
A small, boutique practice, such as The Child Development Center, should hardly appear on any corporate radar screen. We have taken care of thousands of patients, while pharmaceutical companies can reach multiple millions utilizing propaganda and government access.

Planetary drug stores continue to fund and create new potentially harmful products. This grouping of functional physicians may just represent collateral damage.

Large drug companies possess the power to spread cancer in our collective being, death is but one eventuality. Considering Pharma’s great scientific strides, and enormous profits, someone ought to slip a ‘Fund for Diabetes Prevention Program’ message into the corporate suggestion box (paid for with some of the dough that insulin generates), rather than knock off a few holistic practitioners.

Any conspiracy talk is best minimized because the conversation usually devolves into a controversy regarding the childhood vaccination schedule. The Wakefield effect. More heat, less light.

The story, presented in a somewhat sensational manner, has appeared in more alt-thinking venues, such as ascensionwithearth.com, thescienceofeating.com, and healthnutnews.com. So, the message may simply be ‘preaching to the choir’, or considered ‘kooky’ and overly dramatic.

The local news station reported, “Police: AZ father kills wife, toddler, baby, himself in weekend murder-suicide…
Investigators believe the cause was financial issues. A co-worker… called police Friday after finding all four shot to death in a room.

Conclusion
I sincerely hope that these deaths are not part of some conspiracy. If it’s true, multinational drug companies are only shooting themselves in the foot, getting negative publicity that isn’t worth the effort. Pharmaceutical manufacturers are already entrapping us in a variety of ways.

So, I’m not getting a gun, or hiring a bodyguard. We’ve all got more substantial stuff to worry about, like getting kids with speech apraxia to talk.

The Perils of Home Treatment for Autism

Sunday, November 5th, 2017

Were it not for a lack of knowledge or, frankly, interest on the part of most of the medical community, parents of children with autism would be happy to relinquish their quest for appropriate treatment.

Too often, I listen to stories about pediatricians who have declared, “Well, I don’t know much about that ‘spectrum’ diagnosis. Let’s wait 3 to 6 months and see what develops.” Or neurologists who, after observing a patient for less than 5 minutes arrive at what they think is an accurate diagnosis, followed by little in the way of explanation, and even less effort to provide relief, other that a ticket to, “find a good therapist.” Then, there is the peanut gallery of mildly interested observers who implicate over-diagnosis and link the epidemic to anti-vaccination conspiracies.

That being said, the families who are left to fend for themselves in this void must navigate a sea of dangerous waters in order to find safe, reliable and effective protocols for children affected with ASD. These are some of the issues that frequently arise for those warrior-parents.

No matter how ‘benign’ the intervention, what works for one child might actually make another child worse. There are many different kinds of autism, including boys (aggressive) vs. girls, early vs. late (language regression), immune (rashes, constantly sick and antibiotics), gastrointestinal (reflux, bowel problems), and genetic variations. Furthermore, at any one point in time, speech apraxia, social isolation, sensory issues, or aggression might define a child’s autism. So, Dr. Google’s therapy du jour may not even apply to the present status of your offspring.

Will Junior actually take a supplement that was suggested on the Internet? Compliance issues are a major challenge among our patients at The Child Development Center. Children are usually very picky eaters, sometimes refusing to chew, or preferring to smell everything, and not likely to ingest another yucky concoction. The ‘best’ fish oil won’t work if your child won’t take it, so a better tasting, less expensive, well-tolerated version may be the better choice.

Costs can spiral out of control. Each affected child may take between 5 to 10 supplements/medications per day, often exceeding $300 per month. And, of course, it is not covered by health insurance. Can you really afford to give another remedy on the advice of a friend-of-a-friend-of-a-person-whose-kid-has-autism?

Complicated, expensive therapies are compelling. Parents who seek experimental, untested, and/or potentially dangerous regimens are not foolish or ignorant, they are frustrated and desperate. For the most part, unless your family has unlimited resources, your money is better spent on proven, conventional behavioral interventions.

Parents may not be aware whether item #2 on the list of supplements is actually amplifying item # 7, or nullifying. For example, notwithstanding manufacturers’ claims, digestive enzymes digest stuff. Probiotics, proteins, etc. work best when they reach their intended destination in the natural state, so some products must be given individually.

Home therapies do not take the place of a thorough medical workup by an experienced practitioner who demonstrates reproducible results. Vitamin D, e.g., is great, but high doses could be harmful. The child’s blood count, liver, kidneys, thyroid, and other metabolic functioning should be documented and followed when a fragile toddler is the recipient of pharmaceuticals of any kind, with potentially serious effects.

Conclusion
Rather than eschewing novel treatments, I am eager to become educated about patients’ reactions – positive and negative – so that my advice applies to each individual child, at a particular point in their recovery, targeted at the therapies that will take the patient to the next level toward independent function.

I have learned useful techniques from naturopathic, holistic, Ayurvedic, and just plain Mom-medicine. Epsom salt baths, attention to nutrition, probiotics, essential oils, and the like, can be quite helpful. However if you are experiencing a 2 year-old who is not making eye contact, a 3 year-old who doesn’t speak, or a 4 year-old who is banging her head, sooner or later you will get the most tangible results from a practitioner who can accurately identify, and treat, such serious challenges.

About regimens and treatments that some might say, “How can it hurt?” the most important lost resource may be time.

Fundraising for Autism Research

Monday, October 23rd, 2017

(Too) many years ago, our Regional Intensive Care Unit had the honor of hosting Audrey Hepburn. At that time, we were knee-deep in cocaine exposed babies, and the entourage stopped at the incubator of a 1 pound infant who was barely visible among the wires and tubes.

I asked the famous actress, 1992 recipient of The Presidential Medal of Freedom, and tireless worker for UNICEF, if she minded that the costs of this single child’s care were expected to exceed $1 million. “Wouldn’t you be able to feed an entire village somewhere?” Her surprising answer was, “There’s enough money for both, if we care to spend it that way.”

Fast forward to a recent NYC fundraiser for Columbia Presbyterian’s Transplant Initiative. I complained to my beautiful and patient wife, Jackie, that autism doesn’t receive the same kind of attention as other medical condtions. Frankly, I was jealous. There is enough money for both, if we choose to spend it that way.

There are presently ~117,000 people requiring an organ transplant of some type. There are over 5 million people with autism. In the past several years, I have attended, and been struck by, similar begrudging feelings at benefits for the Michael J Fox Foundation for Parkinson’s Disease. Sure, it’s important to give people a ‘second chance’ at life. But, have the children who are most affected with ASD, and their families, had any real first opportunity at normalcy?

Look, I’m not trying to compare apples to oranges, but it seems that ASD should be appropriately considered as THE childhood epidemic of OUR time. A great deal more is needed by way of funding for useful investigations. I am honored to serve as a Board Member in our local Autism Society of America – Broward County, but research and medical issues are for other institutions.

Increased collaboration among national organizations, including Autism Speaks, Generation Rescue, Talk About Curing Autism Now, Autism Research Institute, The National Autism Association, and local CARD groups, can only strengthen awareness and support.

Autism is stuck in a century-old paradigm of psychological causation. Lately, parents are offered a genetic etiology that leaves them with little hope. Disparate theories and alternate interventions require evidence-based research. That includes adequate vaccine studies – among other ubiquitous toxins – to identify those infants at possible increased risk for untoward consequences.

Acknowledgement of the successes that doctors, such as myself, are experiencing every day, needs to be appropriately studied and documented. It seems that more funding might be directed toward our work, were it not for all of the controversies surrounding an autism label. Unity among the various interested parties to support ‘N of One‘ treatments may help us attain that goal. That way, more toddlers would have access to earlier medical interventions, as well as conventional therapy.

Columbia’s Transplant organization’s motto is “We don’t just practice medicine. We change it.” Practitioners who are at the forefront of effective autism diagnosis and treatment feel that way, as well.

The Real Cause of Autism

Sunday, October 8th, 2017

Recently, these 3 headlines appeared on my iRadar Screens:

Genetics a Cause of Autism in Most Cases: Study
 Korean-American Professor Couple Identify Major Cause of Autism
 Could multivitamin use in pregnancy protect children from autism?

Yet, the research was entitled:

The Heritability of Autism Spectrum Disorder
Mum’s bacteria linked to baby’s behavior
Antenatal nutritional supplementation and autism spectrum disorders in the Stockholm youth cohort: population based cohort study

And, the papers covered the following data:

The examiners mathematically re-analyzed decades-old Swedish registry information that strengthened the association with genetic factors. About the findings the lead author has admitted, “our results do not give any information about specific genes or other direct causes. It only informs us that genes are important…. our study cannot shed any light” on the reason for higher rates.

This was published in Nature, entitled, Maternal gut bacteria promote neurodevelopmental abnormalities in mouse offspring. “The couple found that certain bacteria in the mother’s digestive tract can lead to having an autistic child. Furthermore, they found the exact brain location linked to autistic behaviors, which can be used to find a cure for autism.” Mice are not men.

Using a similar Swedish cohort as the first study, authors reviewed supplementation with multivitamins, iron and folate. They concluded that, “Maternal multivitamin supplementation during pregnancy may be inversely associated with ASD with intellectual disability in offspring.”

Discussion
All of the information first appeared in reputable journals. The stories took a turn through leading health and science magazines, and finally popular media announced theories as if they were dogma. Often, autism research is subject to the ‘telephone game’, resulting in overstated and oversimplified claims masquerading as explanations for complicated medical concepts.

Nevertheless, these investigations represent clues, directions to be pursued, possible new treatments and even prevention. It’s so confusing because they document only baby steps in this scientific puzzle.

Conclusion 
Rather than view these studies as disparate, an alternative perspective could be something like:
If autism is the result of a susceptible individual (genetic study) affected by an environmental stress (mouse study), then utilizing a metabolic intervention (third study) might make sense.

Your child’s autism – Was it just a coincidence?

Friday, September 15th, 2017

Jodi’s Story

Born 3 weeks prematurely, and weighing only 5+ pounds, this beautiful child was at high risk for a multitude of problems. That might include apnea (periodic breathing), GERD (reflux), other feeding difficulties, a weak immune system, and developmental concerns.

Since Mom is a personal friend, I had already warned against getting the Hepatitis B inoculation prior to hospital discharge. In such a tiny baby, “What’s the rush?” There were absolutely no risk factors, yet the doctors were already irked by the mother’s non-compliance.

For various reasons, Mom’s attempts at breastfeeding were never supported by the medical establishment. However, she worked to save as much of the natural product as she could, and supplement whenever possible. As occurs so frequently lately, oral-motor difficulties did arise, and an inevitable path unfolded.

First, the pediatrician said that the baby, “Isn’t getting enough. Thicken with rice cereal and cut larger holes in the nipple.” When that failed to help, noisy breathing led to an Ear-Nose-Throat doctor checking the airway, which was fine. The ‘special formulas’ merry-go-round was boarded. The gastroenterologist suggested that it was a ‘food allergy’. What, exactly, could a 6-week-old premie be allergic to? Where is the evidence-based medicine on that theory?

Reflux was suspected and Prevacid was prescribed. That was when I stuck my nose back into the case. The upper-GI study actually showed that the baby had very poor esophageal motility, which was causing the noisy breathing and poor feeding. Positioning and a mild medication to foster more effective swallowing were ordered, and the baby thrived for the next few months. “What about the shots?” asked the pediatrician.

BTW, an earlier maternal Vitamin D deficiency had already been diagnosed by the obstetrician, though no intervention or followup had been suggested. With nutritional supplements and an appropriate probiotic, the baby’s eating, stooling and development were proceeding normally.

A couple of months later, Jodi had a temperature elevation. Antibiotics were administered, but when that failed to ameliorate her fever, another round of medications was ordered for a ‘urinary tract infection’. By the third course of meds, the child exhibited a severe penicillin rash, and I said, “Enough!”

Only one week after this, the doctor was badgering the mother to, “Get up-to-date on the childhood vaccination schedule.” A nurse was about to give the usual 1-year cocktail, but Mom called me right before the injection. I told her to pay the bill and shoot the contents into the waste basket. Apparently, none of the office staff or professionals that day were aware of the past month’s complicated medical course. “Sorry,” was their response.

Jodi is now becoming a toddler; walking, talking and acting like any neuro-typical kid. That could be thanks to our mild interventions, in spite of them, or simply a merciful act of God. Regardless, we didn’t play any part in causing harm by making unsubstantiated diagnoses, utilizing potent drugs not really meant for infants, or doubling down on an already-taxed immune system.

And, she is slowly becoming up-to-date on an appropriate vaccination schedule, so the ‘herd’ is protected.

Discussion
As a Special Needs Pediatrician, how many times have I heard the opposite story? The Child Development Center frequently cares for children with gut problems, repeated ear infections, eczema, and/or asthma, etc., who are constantly sick and receive antibiotics for practically every complaint. The vaccinations seem to be more important than a workup for persistent medical problems. The prudent practitioner would do well to delay the recommended schedule, gaining more trust from appreciative parents.

Autism is an epidemic. There is no study on high-risk infants who receive 3 rounds of antibiotics within the first year, display immune intolerance (strange rashes, e.g.), then get inoculated by a concoction of potent antigens, shortly after a (probable) viral illness. There never will be. What committee on human experimentation would let a child take that risk? Don’t tell me about “The studies show…” Doctors, use common sense.

Why is there so much autism? A generally-accepted scientific explanation is that diseases occur when susceptible individuals become exposed to environmental stress. Why doesn’t every child have this issue? Isn’t 1/68 enough? Think of the bubonic plague in 12th Century England. Everyone didn’t die.

Conclusion 
As introduced to a generation through Jenny McCarthy’s books, and recently documented in An Unfortunate Coincidence, there ain’t no such thing as a genetic epidemic.

This very personal journey is followed by too many families. We need more research, proper advice, and most of all, additional well-trained trained professionals for prevention, earlier diagnosis and useful interventions.

For the pediatrician who exclaims, “Well, I don’t know much about autism,” it’s time to pick up a book (or journal).

Recognizing The Signs of Autism Recovery

Sunday, August 20th, 2017

As the autism epidemic has grown, so too, has the knowledge of professionals who shepherd treatment, and our recognition of success. It is helpful to offer predictive signs that reflect steady improvement. Due to the variations in autism presentation, there is no authoritative information about how long recovery takes.

However, it can be quite useful and encouraging for a parent to know that it is great news when a child who, after 9 months of treatment, is finally repeating words. It is just as important to understand that the lack of questions, or comprehension, is not pertinent at such a stage.

Patience is key – all affected families have already learned that virtue. But proper acknowledgement that the chid IS getting better should reassure families, hopefully adding a touch more perseverance to their storehouse of solutions.

The journey begins as the ‘fog’ lifts. Wandering should become exploration. New diagnoses do not suddenly ensue, they rise to the top of parental concerns.

It’s not apraxia AND autism. The lack of verbal communication ought to define that phase of autism. Speech arises as sounds, often verbal tics or ‘stims’, teeth-grinding, or screeching, progresses to occasional single words, more consistency, then more dependable expression.

At first, merely hearing the speech therapist say that your child is trying is a very positive sign. There is a pattern. Speak to yourself. Speak to toys. Speak to family. Sometimes, it make sense. Juice. Want juice. I want juice. Observe other children. Speak to safe children – older, younger, more docile. Sometimes, inappropriate.

The same arrangement can emerge with shorter, then longer, sentences. During this phase, parents may fear that the child doesn’t doesn’t comprehend, or is lazy. “He can do it if he wants to!” I think of it as paving newer, progressively wider, neural roadways. The quantum leaps in the appearance of knowledge, such as letters or numbers, are a result of the newfound ability to perform expressive language.

Repetition of words or phrases (echolalia, scripting) seems to be part of the fabric of the acquisition of this ‘skill’. If a child is supposed to say 1000 terms, e.g., and only has 300, they may say the same thing 3 times just to make up the difference, or repeat the last words that were spoken. (Neurotypical adults often do this, as well.)

Socialization will rarely ensue if these milestones, in some form, haven’t appeared.

Children who have repetitive behaviors and restricted interests do not develop obsessive-compulsive disorder. Yes, a youngster may appear to have OCD, but it’s the same problem they exhibited at 2 years of age. And, no pediatrician called it OCD back then. Furthermore, adult drugs for this ‘condition’ are dangerous and rarely perform as expected.

Sensory processing issues that involve hearing, vision, etc., do not develop into SPD. They may become highlighted at various points in the child’s recovery process as the cause of distraction or aggression. Stimming is frequently a symptom. Occupational therapy and other appropriate neural interventions can be quite helpful.

Likewise, lack of attention and focus, overactivity, and distractibility aren’t really a newly acquired ADHD diagnosis. This represents the remnants of an earlier autism. Signs and symptoms are only as subject to pharmacologic remedy as the resulting, appropriate anxiety.

Proper recognition of the challenging behaviors is key.
Does anyone know of a drug that would enable a 5 year-old to perform in a 2nd grade classroom?

Immaturity, tantrums, and difficult transitioning do not warrant a separate condition. Oppositional Defiance Disorder is a description. Behavioral interventions have proven value.

Conclusion
Some might be confused by my use of the word ‘recovery’. It depends on the definition. Subject to the age at the initiation of therapies (and a million other factors), The Child Development Center generally aims for a 3-to-6 year window, in order for a ‘typical’ patient to enter the general educational environment. There may be plenty of leftover challenging behaviors, as occurs in many of the other students in this century.

My point-of-view is that, 10 years after a crippling auto accident, the appearance of normalcy doesn’t erase the prior event. Five years following, however, the patient may experience muscle weakness and/or ‘pins and needles’. Such is the state-of-being for many of the children experiencing recovery in Autism Spectrum Disorder.

The Chronicity of Autism

Sunday, July 23rd, 2017

Be prepared. Knowledge that recovery from an autism diagnosis is possible should be accompanied by an awareness of the time and resources that must be invested.

The journey is characterized by periods of advancement, stagnation, and sometimes, regression. Success is more likely when professionals diagnose and treat medical issues, and traditional therapists ingrain proper development.

Depending on the degree of difficulty with oro-motor functioning, useful speech may take quite a while. Socialization is encouraged and more play with other children and leads to maturation. Some of autism’s related signs and symptoms, such as sensory issues, repetitive thoughts and behaviors, and gastro-intestinal issues may be at issue for years.

Secondary symptoms that may have been less obvious often come to the fore, such as ADHD, obsessive-compulsive behaviors, or anxiety. Medical specialists, such as psychiatrists, gastroenterologists, or endocrinologists are frequently sought to evaluate and treat co-morbid conditions.

The following is a sample of emails that have taken place over the past 6 months with a wonderful family, who are only able to manage yearly visits:

3/10/17 Cameron is on the following medicines…
His speech is great after ENHANSA and b 12 .
Just since last 3 days His focus has gone and is completely disoriented .
Has started repeating his play and is stuck to do the same thing all the time. Movement wise has become slow.
The therapist tells me could be sensory and compliance.
We had done flucanazole full of jan and Feb.
He is totally off sweets and ENHANSA is working great. Just don’t know y the focus has reduced…

3/17/17 Flucanazole again. Been just 25 days?
Wouldn’t it be bad for his liver?
And do I give it along with the ENHANSA or should I discontinue the ENHANSA?

3/22 Will stop the deplin, but I think it’s all after the ENHANSA. So it is yeast related.
He starts school on coming wed. Thus more stress!
ENHANSA has given him speech but now stressed about behaviour.

3/23/17 Cameron suddenly has stopped listening and has started zoning out.
So lethargic in his posture. Wants to lie down on the floor. Sometimes pushes his friends.
Will stopping the ENHANSA help? As it is definitely due to yeast. I don’t want his school to pick up his case in the first month itself.
Have stopped deplin today. Flucanazole is on.

3/23/17 I have got this letter from a well known pediatrician here…
The school has allowed us to send his meals from home. So no stress at that end.
We have already received the digestive enzymes and kept them handy.
The dr here is aware of Cameron’s diagnosis, but has not mentioned it to the school. We will take it as it comes.
Speech is fantastic with ENHANSA. Lot of spontaneous talking all the time. Clarity has come with L-carnosine. Deplin did help a lot with comprehension and there were no tics for 2 months.
Just can’t understand what happened a week after ENHANSA . Cold and a runny nose for a week ’til we started flucanazole…. Stopping ENHANSA hope the speech doesn’t reduce. Cause we won’t be able to start it again ’til vacations then…

3/25/17 Cameron had leakage of stool without even increasing the magnesium.
So I have not given him the extra dose. Today his behaviour was slightly better. Like 10% improvement.

3/28/17 Cameron has calmed down a bit after stopping the ENHANSA and deplin.
Currently he is on… Do let me know if any alterations to be made.
Also he has started repeating sentences and words. From movies. And robotic speech is slightly back.

3/29/17 First day of school.
Keep him in your prayers.

4/7/17 Cameron has calmed down and the tics r also not to be seen in the last 2-3 days.
Melt downs have stopped completely.
Worry :- repeating sentences, and not comprehending questions. Giving weird answers to any question. Focus not there… ENHANSA caused the flare according to me. So I feel we should not start it ’til… school breaks for 2 months. So all trials can happen during that time.
Do let me know about the b 12 shots too. As the speech has diminished by like 50%. He only answers when needed or forced to.

4/23/17 I feel the deplin had helped Cameron a great deal wen we had started it.
His comprehension of language and focus had increased a great deal. So will definitely re-start.
Main concerns :-  Spontaneous speech.  And comprehension of language. Focus.
Nalrexone I am applying religiously every night on his wrist.

4/25/17 Cameron stopped diflucan on 22 nd. And has been complaining of stomach ache.
Stool has been passing once a day .
Deplin is on.
Today the therapist felt that he was not focussing at all and was giving all weird answers. Which was not the case last week. Is all this regression always there after stopping the diflucan? Or is it just one off day.

4/26/17 New Laboratory Results

5/4/17 Cameron’s second round of diflucan is on.
And since yesterday he has started complaining of a stomach ache all the time.
He is passing stool twice a day and quiet loose .
Today he has barely eaten any food and is complaining immediately after 4-5 spoons of his dinner.

5/6/17 Cameron has been complaining on cramps in his stomach.
In a day 2-3 times and at night, too… fever, itching in the pelvic area and sore throath since yesterday nd now constipation.
I have started the fiber today. It’s extreamly hot here…
He’s not eating well since last 2 days and is very lethargic too. Didn’t go to school on Friday.
I have started activated charcoal.
Just worried that I hope this diflucan doesn’t effect him in the wrong way as he is not eating enough. This is something I had read so was thinking would be related to a die off.

6/4/17 Cameron breaks from school in a few days. 
Just yesterday and today I have noticed lack of focus and a few melt downs. Also severe stench in his poop and while passing gas. (for which I gave him activated charcoal today). We r scheduled in 2 weeks and blood tests follow.
Was wondering if I should start the diflucan now (hope it does not effect any Results in the blood test) or should we again give the ENHANSA a try?
Current meds and supplements: D3 2000, Fish oil, Probiotics, Gluthatoine, Deplin, L carnosine, MVIs, Magnesium, Vit c 500, Naltrexone cream…

7/10/17 Cameron has resumed school. Stomach is now fine.
Slight bloated though, but has lost his appetite completely. He is eating half of what he used to eat last to last week. Main issue is chewing. Takes an hour to eat an apple. Seems less energetic. Could be the heat here also but I feel he doesn’t have the strength. As is asking to be carried on steps and even out of bed wants to be carried. (carrying him has come almost after 1.5 yrs , after we met u first)
So I think it’s more related to energy. He seems v lethargic. Inspite of sleeping 10-12 hrs of good sleep. Do u think we need to start the b12 now?

7/11/17 I’ve stopped ENHANSA completely. It’s not for Cameron.
His behaviour is worsening.
I gave him 2 spoons of magnesium yesterday like advised last time by you.
I am out of town for 3 more days. Will go home and start diflucan 6 weeks again.

7/22/17 I started Cameron on 6 weeks of diflucan as he had started flapping and hitting everyone.
It’s been one week and he is much better.
We also started him on 2 capsules of vayarin. I can’t see any major change but it’s not harming in any way. So should we continue with that?

Discussion
Sometimes, such interactions are via phone and/or with our staff, but close attention to change, some patience, and accurate, appropriate interventions are often successful.

Specialists, therapists, and parents get used to what works, what doesn’t, and what hurts their individual child. Intelligent, warrior parents seek to leave no stone unturned. Eventually, the good times outweigh the challenging ones. And the challenging ones get less so.

For many families, the patient no longer meets criteria for ASD.

Conclusion
The most satisfaction comes as we appreciate the affected person’s strengths, and continue to work with those not-yet-acqired social skills.

All the work pays off. The children are loved, and love back. A way through the forest seems to appear. Life settles down, even for the most affected patients. Perhaps the parents’ greatest frustration is the understanding that intelligence is not the issue, and that there is a whole person inside.

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Brian D. Udell MD
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Davie
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Email bdumd@childdev.org
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