Posts Tagged ‘autism’

Autism & MTHFR Explained

Sunday, April 1st, 2018

From the work of Jill James, Amy Yasko, and others

I have attempted to write this explanation – about the MTHFR gene – for more than a year now, often surrendering because it just gets so complicated (see diagram on right – and that is a simplified version)!

However, almost daily now, I need to explain the testing and interventions that revolve around the MuthrF#$Ker gene, which produces an enzyme that can assist in the brain’s ability to process (among many other important body reactions) in patients with ASD.

So, here is my simplified version, which covers the important steps for our understanding about testing and treatment for autism:

1. Folate (natural), folic acid (synthetic), Folinic acid (active) and 5-methyl folate (active) are not exactly the same a form of Vitamin B9.

2. There are several reasons why the levels of the B9 might be reduced:
Reduced intake. Picky eaters and kids don’t usually savor green leafy vegetables or lentils.
Problems with internal state of health will affect availability. Synthetic folic acid must go through the liver, natural folate is metabolized through the intestines.
Antibodies that bind to, or block the active compound. This is why doctors check the Folate Receptor Antibody Test (FRAT). The presence of such inappropriate barriers implicates reduced activity, so administration of additional vitamin should help alleviate difficulties.
Any ‘weakness’ in the body’s inability to convert the vitamin – that includes the MTHFR gene that regulates the enzyme called methylene tetrahydrofolate reductase.

3. The most studied and concerning genetic variations are often designated as C677>T, A1298>C. Hieroglyphics aside, we  inherit a ‘C‘ and an ‘A’ from each parent, and each deviation yields a less potent enzyme, so the implication is that giving the active forms of the vitamin can be beneficial. (Dr. Google, and many labs will report variations as pertains to the risk of hyperhomocysteinemia, a medical condition observed in approximately 5% of the general population, associated with an increased risk for many disorders.) For ASD, improved communication is the goal of treatment.

4. The supplements include L-methyl folate, available as a prescription under Deplin®. A web search of this product will often result in a call from parents, “My child doesn’t have schizophrenia or depression!” Marketing. Improved outlook is just one of the treatment outcomes. As noted previously, in ASD the aim is more efficient neural processing.

5. Another intervention is available as folinic acid (<1 mg dosages) and as the prescription, Leucovorin. An Internet inquiry may stimulate a call, such as, “My child doesn’t have cancer or get chemotherapy.” Different market. At a recent MedMaps.org conference, I asked two top researchers whether they prefer one or the other active form. Each doctor replied with the opposite answer. Availability and cost help determine choice, and sometimes we try both.

Conclusion
The various forms of folate appear to be safe, effective interventions that can address weaknesses in the area of oral-motor functioning in individuals with ASD. In practice, agitation is the principle side effect, and too much ‘stimming’ or aggression is reason for discontinuance.

The gene controlling MTHFR production is important, but not the only one affecting multiple enzymatic pathways that lead to successful data processing. We are already discovering other critical genetic steps (SOD, COMT, etc.) and there are thousands of other genetic crossroads that will improve our understanding and lead to successful interventions.

For our more advanced readers – please feel free to submit any corrections, etc. that you feel might be necessary.

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.

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.

When Mom and Dad Disagree About Autism Intervention

Sunday, October 15th, 2017

Undoubtedly, the most stressful challenge that any family might face is illness in their child. Even in cases where treatment is established, e.g. acute leukemia, there are bound to be differences of opinion about which doctor, or hospital will do the best job.

When it comes to ASD however, even the diagnosis can remain in doubt. One parent, or a sibling, may have experienced “the same” symptoms, such as late speech or inattentiveness. So, the ‘watchful waiting’ advice from the pediatrician appears most prudent. A neurologist who observed your toddler for 70 seconds may have declared a normal – or dire – outcome. Who to believe? Then, there is the conventional medical community that continues to debate the condition and the ability of earlier recognition to alter the course.

Differences about the diagnosis
 Take an online questionnaire, such as the Autism Treatment Evaluation Checklist or Modified Autism Checklist for Toddlers. Although ‘experts’ may deem such surveying as ineffective, it is certainly a start. And, parents shouldn’t bother quibbling over whether Junior should get a “1” or “2” for any single answer. Observing suspicious tendencies may help convince a spouse, or doctor, that there could be real reason for concern.

 Listen to the advice of grandma or grandpa. They have raised other children, even if it was a different century. Try not to listen to advisors who have no responsibility for their opinions.

 If a therapist is already involved, ask what signs and symptoms they view as worrisome. It’s not their labels that you seek, but another professional opinion regarding suspect behavior.

 Don’t be afraid to ask the child’s teacher, or the school personnel, what they think might be different about your child. Academic staff are frequently the first to postulate a problem.

 Take videos of unusual behaviors. One parent may simply not have gotten to spend enough time to have observed a ‘stim’, or recognize activity as repetitive.

 Have the child evaluated by a trained professional. Then, insist on a precise diagnosis. Children with sensory processing, executive functioning disorder, and speech apraxia have autism.

Discrepancies about the next steps
So much inertia must be overcome to establish that first step, simply embracing traditional treatments can offer parents glimpses of improved development. OT (occupational therapy), PT (physical therapy), S&L (speech and language therapy), and ABA (behavioral therapies), must be given the time to reveal results.

At the very least, however, ask your pediatrician to make sure to perform some basic laboratory testing. Even if there is disagreement, how could it hurt to obtain a complete blood count, evaluation of nutritional status (calcium, magnesium, vitamin D, iron), and thyroid screening?

Opposition about biomedical interventions
Although the pull of the Internet is great, children are best served by contacting a physician who is involved in The Medical Academy of Pediatric Special Needs. Unfortunately, there are too few to adequately staff the burgeoning number of affected children, but, we practice state-of-the-art, evidence-based medical intervention.

By continuing our education within such a medical fellowship, and achieving a thorough knowledge of the science that appears in peer-reviewed journals, doctors have developed protocols that have been proven safe and effective. Although the costs are rarely adequately covered by medical insurance, the investment will last a lifetime. Literally.

Conclusion
Denial and delay are not in your child’s best interests. Doctors who are satisfied with the status quo will achieve that end. Modern thinking is that earlier intervention results in improved outcomes.

At The Child Development Center, our experienced and knowledgeable Practice Manager, Karen, has observed that families who seem to have the most success, “May not be on the same page, but are at least in the same book!”

Finally, An Anti-Anti Reflux Study

Sunday, October 1st, 2017

Perhaps my theory is full of water, but this seasoned pediatrician’s belief is that the price that modern society has paid for the successful ‘back to sleep‘ campaign has been an increased incidence of gastro-esophageal reflux (GERD). The practice was introduced to Western medicine at the end of the last century, to reduce Sudden Infant Death Syndrome (SIDS).

When newborns are kept solely on their backs, acid, mucus and food may be more likely to slosh all the way up to the back of the throat, eventually leading to the tubes that are supposed to drain to the middle ear. That has led to an increasing number of infections (otitis media), and an explosion of antibiotic use in very young children.

So, is it the reflux, the treatment of the reflux, the consequences of the reflux, or the treatment of those consequences that increases an infant’s risk of developing signs and symptoms? Aggressive behaviors, hyperactivity, lack of focus, sensory issues, and various gut disorders are commonly ascribed to ASD. Such are the complications woven into the stories of many parents interviewed at The Child Development Center.

The Literature
The practice of placing children on their back was based on observations in other countries, and theories about characteristic electro-encephalographic patterns characterizing those with increased risk of SIDS. Studies in the Netherlands confirmed the observation, and led to the AAP recommendations. No doubt, this strategy has worked for SIDS. However, could the emphasis on alteration of those sleep patterns – related to breathing – have a non-intended effect on other CNS development, as well?

Subsequent research has confirmed the increase in reflux related to infant positioning. The knee-jerk reaction by modern pediatricians has been the issuance of an Rx for antacids, in some form, from Tums to Nexium. Vitamin and mineral absorption becomes impaired. I have previously documented the pitfalls of this intervention.

This week, JAMA reported that, “… infants prescribed antacids to manage acid reflux, or spitting up, under age 1 had more bone fractures later in childhood.” Calcium absorption is believed to be the culprit. “There was a dose-response relationship between fracture hazard and duration of treatment with PPIs. Those taking them for a month or less were at a 19% greater hazard of bone breakage than infants who did not take the suppressors. Those taking the drugs for 60 days to 150 days were at 23% greater hazard and those taking them longer than 150 days were at 42% increased hazard.”

Discussion
The medical establishment altered the environment in the 1990s when we repositioned babies. Consequences have included plagiocephaly (flat head), torticollis (tight neck), and feeding difficulties. Then, we re-set the field again with antacid preparations. Present literature warning about these pharmaceuticals is probably just the tip of the iceberg.

Environmental change + Susceptible Individual = Alteration from Expected Norm

As a practicing neonatologist, nearly all of our ‘premies’ suffered up-chucking of some sort. I never ordered Prevacid, Zantac, Pantaprozole, etc. in the last century – it wasn’t available. Assiduous positioning and a small amount of Bethanecol (a drug to increase gastric tone) worked great. Ear infections in the first years of life were rare, and doctors seldom resorted to antibiotics. And, we didn’t see much autism in the follow-up clinics.

Conclusions
The Safe to Sleep® campaign offers lots of useful advice. SIDS has decreased by 50%. Some common sense is needed, however. For example, it probably is not necessary to stress the ‘supine position only’. Babies will usually drift to their sides, anyway, especially as they get older. And, if a responsible person is close, it’s pretty safe.

When reflux is diagnosed, simple positioning and an appropriate evaluation should precede any intervention that involves medication. If recurrent infections appear, the placement of ears tubes can mitigate the requirement for further rounds of drugs.

Is it really necessary to keep all infants on their back, all of the time? The ramifications of this policy need to be re-examined, as they may apply to the epidemic number of children with autism.

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.

Return of the Yeast Issue

Sunday, August 6th, 2017

It has become a ‘given’ lately, in the ASD-alternative-medicine world, that successful treatment protocols often involve antifungal medications. So, when the Child Development Center offers our advice, too often we assume that parents have a thorough knowledge of this common complication in patients with autism.

What is the evidence for this form of medical intervention for ASD?
TheAutismDoctor.com has presented a variety of stories about how overgrowth of yeast can interfere with typical development:

In a two part series, A Yeast Story, 6 years ago, The Autism Yeast Connection highlighted the mechanism by which the critters take over the intestinal flora. The symptoms appear to start with increased ‘fog’ (not attending), then progress to include increase in ‘stimming’, sensory processing disorders, silly behaviors, regression in speech, disturbed sleep, increased ‘OCDs’, and reduced gastrointestinal health.

In the second part of that piece, I offered my view that, the major cause of fungal overgrowth appears to be more of a poorly digested food problem than simple sugars (not to be confused with the observation that too much sugar heightens hyperactive behaviors). However, the overuse and ubiquitous use of antibiotics must be an overwhelming contributor to this phenomenon.

Get Your Child Off the Couch and Out of the House pointed out how constipation leads to slowing down the entire body ecosystem, making outdoor play a chore. Less activity can further deteriorate the situation. Warm, wet, dark, stationary places (a non-motile gut) make an excellent home for yeast, which robs nutrition, alters the immune system, and creates toxic byproducts. In addition to probiotics, healthier foods, and anti fungal preparations, adequate muscle activity will push the food along.

Poor motility in the smooth muscles in the gut that could lead to reflux, or constipation, and possible yeast overgrowth, was discussed in A Brief Discussion of Mitochondrial Function and Autism.

I have written about complicated treatments, such as Stem Cell infusions, Fecal Transplants or Hyperbaric Oxygen chambers, where patients can still benefit from the recognition and treatment of recurring signs and symptoms of yeast – the extreme therapy notwithstanding.

Even standard protocols, such as B12 ‘shots’ can go awry when fungus has overtaken the gastrointestinal tract, as discussed in When Methyl B12 Doesn’t Work for Autism.

Earlier this year, in The Challenge of Challenging Behaviors, I warned that disruptive, aggressive, or self-injurious behaviors first needed to be evaluated from a GI point of view, lest the patient end up on multiple anti-psychotic medications that merely mask the underlying problem.

‘Die-Off’ in Autism Treatment detailed the journey that ensues when pharmaceutical medications are administered to deter the fungus. Complications can be addressed with the judicious use of activated charcoal. Furthermore, the use of nystatin and saccharomyces boulardii may be considered, or needed, if liver function is not optimal. Plus, natural antifungals, probiotics, and probiotics can be of value for prevention.

The Chronicity of Autism, presented documentation of one family’s journey to a successful outcome, by paying very close attention to GI health, and treating yeast when the symptoms suggested.

My 2014 holiday salute to the condition concluded with, “Yeast in the G-I system is one of the few causes of the signs and symptoms of autism that CAN be successfully treated with safe and effective supplements, diet and medication. This is a great time to provide natural anti-fungals, such as apple cider vinegar, garlic oil, olive leaf, etc., to the extent that products are palatable and well tolerated.”

Our experience with antifungal treatment was documented in Anti-fungal Treatment for Autism? The conclusion was that medications can have serious side effects and drug interactions. Present practitioners should follow a written, rigorous protocol and document progress. Appropriate followup laboratory testing should be performed. Other sources of inflammation should be explored and addressed, as well. Under a physician’s care, with the parents’ full understanding and consent, within 2 or 3 short courses, a simple, oral, antifungal medication was well-tolerated, and effective in reducing many symptoms that are generally assumed to be ‘autistic’.

Conclusion
This list is provided to document our experience with thousands of patients. There is solid scientific and clinical evidence for those who are new to the diagnosis, or parents who wish to explore the possibilities that yeast may be affecting your child’s development,

The hyperlinks (and hyperlinks to hyperlinks) should help convince even the most skeptical of professionals that this is a safe, effective treatment for signs and symptoms associated with ASD.

The Challenge of Challenging Behaviors

Sunday, June 11th, 2017

The Child Development Center has been experiencing a rash (dare I say, “Epidemic”?) of children who present with poor socialization, decreased attention requiring prompting and redirection, sensory and/or oppositional issues, extreme rudeness, dark thoughts and threats, obsessive activities, immaturity, and aggressiveness (physical, verbal or both). The children are not ‘autistic’. And, it’s not ‘just ADHD’.

One parent of such a child recently wrote that he was saddened by these disturbing developmental conditions in his otherwise amazing kid. When children do not ‘come out’ the way that we had anticipated, it brings heartbreak and disappointment.

Extremely disruptive displays are not merely frustrating.
They can be embarrassing and even cause depression.
In today’s world, that has become the journey of (too) many parents.

What Doesn’t Work
Corporal punishment was the traditional mainstay for ‘making children behave’. Thus, grandparents often complain that today’s parents are not firm enough. First, the price that is paid by utilization of either verbal or physical punishment is self-esteem – by both parties. Abusive actions, offhandedly employed in the last century, may prompt a Child Protective Services visit in this one. Second, affected youth appear to experience increased pain resistance. Eventually, that form of discipline goes unnoticed. Third, such a reaction is the exact opposite what we are trying to instill.

In the past months, we have examined a number of children whose medical pharmacopeia appeared proportional to their age. There was a 7 year-old taking three medications, and one teen was already getting Abilify, Risperidone, Geodon, Valproic acid, and Lamectal, among other pharmaceuticals. And, her psychiatrist was suggesting more. When does it stop?

I am certain that parents and doctors arrive at such multiple combinations of drugs honestly. Each symptom is met with another medicine. The patient is then drowning in chemical soup. What is the plan?

What Can Work
A medical workup is required. The prescribing physician is obliged to follow levels of anticonvulsants (for symptom adjustment), liver and kidney function (for drug elimination), blood count, and nutritional status.

In given patients, practitioners should consider fungal overgrowth, PANDAS, or Lyme disease. Screening for toxic substances has been a recent addition to our armamentarium. So new, perhaps, that such data is not necessarily that helpful, yet. Likewise, genetic technology has become available that better determines how patients metabolize various pharmaceutical preparations, but usefulness in clinical practice remains limited. To the extent that an astute clinician determines an underlying problem(s), great strides can be made toward amelioration of some disturbances.

Behavioral interventions are the proven treatment. It takes a professional therapist to get challenging children to display self-control. Common sense dictates that such juveniles require absolute consistency. One pre-adolescent demonstrated an uncanny ability to mock my consultation. Perhaps, the parents were thinking, “Now, you see how rude he is!” when they laughed it off. Regardless, their response validated the child’s disrespect.

One parent has developed her own form of pre-vigilance. Mom is able to ‘sense’ when her kids aren’t able to concentrate, and provides relief at the earliest sign of distractibility.

Rather than additional pharmaceutical preparations, doctors should consider which ones to decrease or discontinue. The list often contains drugs that were instituted for behaviors that are no longer at issue. Additionally, it can be helpful to consider less toxic medications or even supplements when the status quo is not doing the job.

Conclusions
My diagnosis is that such challenging children have escaped ‘traditional’ autism. It’s not obsessive-compulsive disorder, Tourette’s, schizophrenia, bipolar disorder, sensory/visual/auditory processing disorder, oppositional defiance disorder, etc.
It’s processing disturbances caused by our toxic environment acting on susceptible individuals.

Finding relief may be exasperating, with periods of improvement and regression. This is when patience and the knowledge that the child has the capacity to achieve necessary skills to ‘make it’ need to take precedence. Some parents choose home-schooling, special schooling, and less-than-hoped-for academic situations. Some must resort to medications.

This alteration in childhood development is not FUN. For many, it’s parenthood in the 21st Century. Consider that the best course is to ‘first, cause no harm’.

Sleeping Sickness Medicine for Autism?

Tuesday, June 6th, 2017

‘Game-changer for autism’:
100-year-old drug reverses symptoms, study finds

Recent headlines, such as those, have stimulated the submission of a fair number of emails that went something like this…

Dear Dr. Udell,
I saw this study on the internet.
I would like to try this medicine for my child. What do you think?

Dear Parents,
After further consideration, here are my observations about this serious pharmaceutical intervention:

1. What is suramin?
It is a chemical that was invented to cure parasitic diseases. The dosage used for autism has been significantly reduced.

2. What was the actual paper?
This treatment is based on a unique approach to autism, and it represents a preliminary test of whether this drug might be safe and effective for common signs and symptoms of this emerging epidemic.

There were 5 patients in each group of 4-17 year-old boys, who were either given a single dose of the medication, or placebo. Outcomes were measured in the first week, and 6 weeks later. There were generalized improvements in many areas. As blood levels decreased over time, so did some advances. Surprisingly, progress was seen in speech apraxia, even in 2 older children.

The drug was well-tolerated, except for “a short-lived, self-limiting rash.”

3. How does the drug work?
The authors explained, “One approach to addressing the challenge of many etiologies of ASD is to define a common pathophysiology that can contribute to the core diagnostic symptoms, regardless of the initiating genetic and environmental triggers. We hypothesized that there is a conserved cellular response to metabolic perturbation or danger that is shared by all children with ASD… in mice produced a treatable metabolic syndrome…” The administration of a medicine that adjusts for an alteration in RNA and DNA manufacture, and energy production, “…corrected both the behavioral and metabolic features of these genetic and environmental mouse models of ASD.”

4.  How is it administered?
INTRAVENOUS PUSH. From the results of this research, it would appear that doses may be required every ? 1-2 months for ?? months? This is not for the faint of heart.

5. How much would it cost?
The drug, alone, appears to cost less than $50, depending on the source. If it is found to be successful, let’s see how the powers-that-be jack up the price. Plus, there would be additional charges of IV administration and followup testing.

6. What labs must be followed?
That remains to be discovered with increasing experience and research.

7. What are the long term effects?
Ditto #6.

Conclusion
This medicine may simply share many of the same properties as the myriad of other gut-altering treatments. Positive results require frequent administration, and ‘tolerance’ to therapy sometimes makes them less effective.

However, the use of suramin is based on a different paradigm (how cells respond to stress) that takes into account the diversity of possible causes of autism, both environmental and genetic. That such a new direction in research is being explored is exciting and hopeful.

For now, families need to continue to be patient. Especially in children, interventions that are so invasive and potentially harmful require more study and followup, in order for parents to make a truly informed decision.

Stem Cell Therapy for Autism… cont’d

Sunday, April 9th, 2017

As doctors try to understand and consider various emerging therapies for patients experiencing signs and symptoms of autism, the question of Stem Cell therapy has come to the fore. A Duke University professor barreled onto the scene, recently, with a pronouncement that sounds like a cure, even though it’s not.

Understanding the study
The project is Clinical Trial to Evaluate the Efficacy of Umbilical Cord Blood to Improve Outcomes for Children with Autism Spectrum Disorder. This was the first phase. The goals were to determine safety, and to evaluate the usefulness of a variety of tests to assess whether the treatment works.

Does giving a child’s own cells, which were collected from the umbilical cord at birth, back into their bloodstream, result in any adverse events? The report broadcast on CNN focused on a 7 year-old who seemed nearly OK, playing with her older, neurotypical sister. The treatment had taken place a couple of years earlier.

Dr. Joanne Kurtzberg, one of the researchers, proclaimed, “We saw improvements in 6 months…” She used the word curative twice in the same sentence, even though her point was ignorance of that outcome. She concluded the interview with, “of course we have to do a placebo controlled randomized trial to answer the question…” The Dad was more realistic, as he commented, “The autism is still there…”

The research involved 25 children, 2 – 6 years old, who had banked cord blood available. “Significant improvements in children’s behavior were observed,” in the majority of children, and “were greater in children with higher baseline nonverbal intelligence quotients.”

“Assessment of adverse events across the 12-month period indicated that the treatment was safe and well tolerated,” claims the abstract. In fact, agitation was a common complaint, requiring additional medications, as the infusion was administered. The authors admitted, “As an uncontrolled open-label study, it is not possible to determine whether the observed behavioral changes were due to the treatment or reflect the natural course of development during the preschool period.”

Discussion
When considering such an extreme treatment, the primary driving force should be the child’s degree of involvement with their developmental challenges. If your youngster is proceeding on an acceptable trajectory, 1) Is it worth the known, and unknown, risks? and, 2) What improvements are you actually seeking? In this study, as in other successful biomedical protocols, the less-affected patients showed the best improvement.

This investigation was done under rigorous conditions by highly trained university personnel, and utilized the patients’ own cord blood. Do stem cell centers around the world offer a similar degree of confidence as regards cleanliness, safety, follow-up, or the ability to handle emergencies? Are outcomes the same when using fat cells that have been turned into stem cells (explained in my previous blogs on this topic)?

The type of autism has got to be a factor, as well. Would a patient with a significant chromosomal variation or metabolic disease, for example, experience the same improvement?

On a positive note, it is encouraging to observe that the conventional research community implicitly concurs that successful treatment involves “modulating inflammatory processes in the brain addressing the reduction of body inflammation to improve ASD.”

Conclusion
We all wish to see a real breakthrough in autism treatment. It appears that stem cell therapy may represent a significant advance. But, that is all that it will represent. Children will still have yeast, and need follow-up labs, and ABA, and Speech therapy. Stem cell intervention seems to represent another, maybe better, certainly more costly, alternative protocol.

Thankfully, Phase II, a randomized, controlled study to assess efficacy, is now underway.

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Brian D. Udell MD
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