The Impact of Prenatal Alcohol Exposure on The Whole - PowerPoint Presentation

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The Impact of Prenatal Alcohol Exposure on The Whole BodyMyles Himmelreich, C.J. Lutke, Rod Densmore MD

2nd Annual, Okanagan, Fetal Alcohol Spectrum Disorder Conference

“Winds of Change”

October 2-4, 2019,

FASD Okanagan Valley Assessment and Support

Society

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Last YearBrain and body are interconnected INSEPARABLE

Some findings from: C.J., Myles, Emily and C.J.’s mum, Jan:

(Himmelreich M, Lutke CJ, Travis E. 2017 Plenary Panel: The Lay of The Land:

Final Results of a Health Survey of 500+ Adults with Diagnosed FASD.

7

th

International Conference on FASD. UBC.)

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“ Myles’, CJ’s, Emily’s, Jan’s Health Survey n=541 (Himmelreich M, Lutke CJ, Travis E. 2017 Plenary Panel: The Lay of The Land: Final Results of a Health Survey of 500+ Adults with Diagnosed FASD. 7th International Conference on FASD. UBC. Vancouver. March 4, 2017)

Condition

Gen. Pop. rate

Rate

in FASD

Increase of ?Irritable Bowel Syndrome (IBS)11%20%2xGERD (Reflux)20%42%2xCrohn’s disease0.8%2.4%3xUlcerative colitis0.3%2.2%7xCeliac0.7%2.2%3x

Epipen Carried2.2%9.6%4x

Sleep Apnea

2.4%

15.2%

6x

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Myles’, CJ’s, Emily’s Health Survey Continued (Himmelreich M, Lutke CJ, Travis E. 2017 Plenary Panel: The Lay of The Land: Final Results of a Health Survey of 500+ Adults with Diagnosed FASD. 7

th

International Conference on FASD. UBC. Vancouver. March 4, 2017)

Condition

Gen. Pop. Rate

Rate in FASDIncrease of ?Asthma8.3%36%4xDementia (early)0.0086%0.9%104xHeart Rhythm (SVT)0.2%5.7%27xHigh Blood Pressure(Ages 18-44)8%16%2xRheumatoid arthritis

0.6% (*too low)6.6%11xSleep Apnea 2.4%15.2%6x

Restless Legs syndrome

10%

18.5%2x

Chest Infections

23.6%

41.9%

2x

Sinus Infections

12.5%

34.4%

3x

Adult Chronic Ear Infections

0.25%

36.7%

147x

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Assessors that attempt to minimize FASD-related health risks…helpful references:

Evidence base for outcomes for birth mothers:

1

)

Seattle Birth Mother’s Study: Average: 4-5 DSM diagnoses:

Astley SJ, et al. 2000. Fetal Alcohol Syndrome (FAS) primary prevention through FAS diagnosis: II: A comprehensive profile of 80 birth mothers of children with FAS. Alcohol and Alcoholism: 35(5): 509-519. and 2) Very high % of birth mothers were missing or deceased on follow up: Stromland K, Hellstrom A. 1996. Fetal Alcohol Syndrome- an opthalmological and socioeducational prospective study. Pediatrics 97(6): 845-849Evidence base for life expectancy outcomes of people with FAS: 42% of general population Thanh NX, Jonsson E. 2016. Life Expectancy of People With Fetal alcohol syndrome. J Population Therapeutics and Clinical Pharmacology Vl 23(1) e53-e59Evidence base for numerous medical problems affecting people with FASD: 1) Himmelreich M, Lutke CJ, Travis E. 2017 Plenary Panel: The Lay of The Land: Final Results of a Health Survey of 500+ Adults with Diagnosed FASD. 7th International Fetal Alcohol Spectrum Disorder Conference. UBC. Vancouver. March 4, 2017. Available at: http://interprofessional.ubc.ca/webcasts/fasd2017/ 2)Popova S, et al. 2016. Comorbidity of fetal alcohol spectrum disorder: a systemic review and meta-analysis. The Lancet volume 387, issue 10022, p978-987. DOI: http://doi.org/10.1016/S0140-6736(15)01345-8Evidence base for prenatal alcohol exposure predisposing to metabolic problems: Akison LK, et al. Adverse Health Outcomes in Offspring Associated With Prenatal alcohol Exposure: a Systemic Review of Clinical and Preclinical studies With a Focus on Metabolic and Body Composition Outcomes. Alcoholism: Clinical and Experimental Research, Vol 43, No 7, 2019: pp. 1324-1343 DOI: 10.1111/acer.14078

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General Considerations for Primary Care Medicine

Forgetful

…pills and appointments: go with them

/patient navigator

…

once a day or injectable??Sleep apnea/restless legs: Iron? Sleep study. Gabapentin.Disrupted sleep: safety? Trazodone or MirtazepineAbuse history: go with the patient to specialist(Profound) Praxis/Motor planning: new multi-step tasks are particularly difficult, NOT NURMU (Dan Dubovsky: Non-compliant, Uncooperative, Resistant, Manipulative, Unmotivated)

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Diabetes x 3 years3x emergency, blood sugars 30+“I hear what the dietician says, then it is all gone 2 days later”Urine infections, boils, dental abscess, lower back pain

Celia, single lady, 29, very active

…

5 km per day

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Celia immediate needsHelp with preparation of appropriate dietDiabetes treatment that does not increase weight

…

metformin (increase insulin sensitivity, less glucose made by liver, less glucose absorbed by intestines (+ Empagliflozin [SGLT2 inhibitor

…

pee out more sugar])

Reverse/treat all health issues that can elevate blood sugar: sleep apnea, depression, infectionsExercise or else!!! What is that lower back pain?

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Celia…long term goalsWeight: 5-10%Cholesterol: LDL less than 2Triglyceride/ healthy liver

…

avoidance of fatty liver disease

HbA1C 7 or less/ no or very low microalbumin in urine

Smoking

BP 125/80Avoid heart attacks, peripheral artery disease and stroke/avoid chronic kidney disease*, retina disease and neuropathy *ramipril or similar ACE inhibitor or angiotensin II receptor blockers such as losartan

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Weight…Marie, 55, nurse, diabetic on insulin (Dr. Lee Kaplan, Harvard)1) Socialization/sleep

…

no more night shifts

…

15 lb..

2) Food into 3 meals plus 2-3 small snacks…10 lb.3) Get rid of insulin (and sulfonylurea esp. glyburide but even gliclazide causes weight gain in some and risk of hypoglycemia)…10 lb.4) More physical activity…5 lb.

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Celia…health maintenance…after all acute infections are resolved, blood sugars are stable and sleeping is ok

Paps

Breast exams

Eye exams ever 6 months

HbA1C and microalbumin every 4 months

Neuropathy screen every 4-6 monthsOsteopenia: bone density checks…”but not covered”

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Community Living BCIQ 78, “Does not fit criteria for support”My approach: try to see if Adaptive function is minus 3 standard deviations

…

if so Personal Supports Initiative (PSI)

…

see if grandma can do adaptive function questionnaire

Minus 3 standard deviations…don’t get me started! Stephen Greenspan FASD and the concept of “Intellectual Disability Equivalence” https://www.nofas.org/wp-content/uploads/2017/02/FASD-and-the-Concept-of-Intellectual-Disability-Equivalence.pdf

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Systemic Barriers to Optimal CareHands-on assistance (CLBC) only if IQ less than 70 or if adaptive function less than minus 3 standard deviations

No Patient Navigators

“a doc (or NP) is a doc”

…

nope!...trust enough to push boundaries needs a relationship

Until March 2019…only weight gaining “add ons” to metforminBariatric Surgery: only for those who have excellent memory and focus…what about patient navigators??“Does not meet criteria for osteoporosis screen bone density”

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But these barriers are discrepant with:Sullivan WF, et al. Primary

Care of

Adults

with

Intellectual

and Developmental Disabilities: 2018 Canadian Consensus Guidelines, Canadian Family Physician Vol64: April 2018Get collateral history (or die!)… “identify with the patient someone who can come with them, help coordinate care and monitor ongoing health needs”Adequate time to develop understanding/relationshipAssess decision making capacity…shared decision makingCare of families and other caregivers…similar to Dementia

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Sullivan et al. continuedRegular health assessments: disease detection and increases preventive care The

cause

of the disability is important

…

informs treatment and preventive care

Health Watch Tables: Autism, Down syndrome, FASDCommunication issues: self-reporting of pain can be decreased… sources: dental infection, injuries, GERD, arthritis, UTI, constipation, menstrual painLife transitions: adolescence, adulthood, frailty (which can have an early onset)…proactively discuss effects of these transitions with patient and their caregivers…these are times when greater support is neededPhysical inactivity/obesityVision and hearing impairmentsOral disease/ GERDCardiovascular disease…prevalent and there can be barriers to preventive measures (exercise, adequate nutrition, appropriate meds)

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Sullivan et al. continuedRespiratory disorders…aspiration (often silent)

…

asthma/swallowing problems

Gastrointestinal disorders: GERD and Celiac

Women’s health

…painful periods, anemia, excessive bleeding with periods, screen for sexual exploitation and unintentional risky or harmful sexual practices…when these are present facilitate deliberation with patient and caregiver about options to reduce risk of infections and regulate fertilitySkeletal/neuromuscular issues: osteoporosis: screen and treat early Jaisen J, et al. Aging and bone health in individuals with developmental disabilities. J Am Board Fam Med 2014; 27(1): 104-14 and Balogh R, et al. Low trauma fractures and bone mineral density testing in adults with and without intellectual or developmental disabilities.: a population study. Osteoporosis Int 2017;28(2)727-32 Epub 2016 Sept 9.

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Sullivan et al. continuedEpilepsy (20x)Endocrine: Diabetes…

screen at earlier age, Thyroid: (check prior to meds then annually) especially if taking lithium, seizure meds or antipsychotics such as risperidone or quetiapine

Infectious disease: vaccines for influenza, pneumococcus, hepatitis A and B; reduced symptoms from infection: be alert to subtle changes, e.g. Change in behaviour or mental status “ he is just not right” could be urine or chest infection, etc.

Mental health: anticipate and monitor for drug side effects, review response every 3 months minimum

Dementia can occur earlier

Addictions are under-diagnosed…alcohol and cannabis are most common…lower doses can cause more harm vs the general population

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“Jamie,” 50, FASD, ABI, “Ideational aspraxia”(impaired motor planning)Rod: “I’m tried, want a coffee?...cream in it?”

J: could not do it

…

Why can he play Dark Side of the Moon, but he cannot push the cream dispenser?

Social worker: “I’ll take him to the new housing office”

Rod: “Ask your mum about Prenatal Alcohol Exposure (PAE)”J: “Sit down…PAE and shaken baby”Rod: “other head trauma/unconscious?”J: “Many…fights, sucker punches, car accidents”

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Dr. Daniel Amen’s ABI Questions1) Seldom 2) A little bit 3) Quite a bit 4) Extremely

Short fuse/ lose temper with minimal provocation?....4

Tends to misinterpret comments as negative?....4

History of head injury?....4

“ADHD” but Ritalin, etc. does not work?....4

Average 3.6Depression but SSRI make me feel “not myself” or worse?....3Dark Thoughts?....3 “yes, like a horror movie”Unstable/unpredictable moods?....3“See” or “hear” things that are not really there esp. if tried/stressed?....3Déjà vu?....4Headaches and/or abdominal pain?....3Loss of consciousness/ concussions: see stars, nausea, hard to walk/dizzy?.... “yes…lots”….4

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Jamie…mood stabilizer lamotrigine…then, “I wrote my landlord a letter!”…after that…

Rosacea: minocycline

No jail or trouble with the law x a decade

Met Amie in a rock band

…

they live togetherSuccessfully dealt with neurosurgery on his neckVery serious Fender base player…Amie is the drummer3 Paper routes “I like my little life”

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Jerry, 35, FASD, Bilateral bone fragments in elbows, WCB Could not work with jack hammers any moreTold that he would retrain as “Oil Field Dispatcher”

Unable to tell time, unable to plan trip to Calgary but he’d been there many times, 100-7

…

paper

…

95No showed 3x to CT elbows and 2x to orthopedics…PLAN>>>

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JerryMOA and her husband

…

took him to CT

I took him to Ortho

…

learned a ton…retraining needed because no more heavy physical workAppeals WCB (2 years, 2 levels of appeals, 3 “advisors”…finally retraining for something appropriate and partial payment for lost wagesJerry said , “I was not sure what they were asking but I just did what I could”…“Neuropsychologist" said “feigning/exaggerating/malingering” because of low scores on Word Memory Test and Victoria Symptom Validity Test…but…if examinees have low IQ, poor working memory, impaired visual perceptual abilities and impaired verbal initiation, they may be prone to false positive classification on VSVT Reference: Silk-Eglit GM, et al. 2016 Validation of Victoria Symptom Validity Test…Archives of Clinical Neuropsychiatry 31 (2016) 231-245

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Jerry: blood in urinePrevious abuse by male when he was 10-12Urology work up including cystoscopy+++ explanation

…

this is about early recognition and treatment of cancer

…

you are important to that son (6) of yours

…do it for him“If you were not there I would have bolted!”

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Health Issues with FASD A-Y; A little Memory HelperPlease: fill in J P

Z; let me know if you’d

like

roddensmore

@shaw.caA) Allergy/ Anaphylaxis /Asthma/ Acne, if present, can be treated with minocyclineB) Breast CancerC) Constipation/Celiac/ Circadian Rhythm/high Cholesterol/ Choline/ Congenital heart / “Counterfeit Deviance” (Natalie Novick-Brown)D) Dental decay/abscess and denial of pain/ Dental crowding and small upper jaw and issues breathing at night with increased mouth breathing and lower oxygen levels during sleep…Orthodontists may say, “mid face deficiency and myofunctional disorders”E) Ear infections

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Health Issues with FASD A-YF) Furuncles/

Folate

/Frontal Lobe Paradox (better performance in calm organized environments versus busy classrooms/ workplaces)

G

) Gastric reflux (GERD…it hurts teeth too)/ Gluconeogenesis altered

H) Hypotonia…lax muscles when breathing…increases sleep apneaI) Infections (easier to get) / Iron/ Insulin resistanceJ)K) Kidney infections/Horseshoe kidneyL) Liver (Fatty Liver)…high triglycerides/ Ligamentous laxity…“double jointed”M) Metabolic syndrome (waist over 40 inches men or 35 women, elevated fasting glucose, High triglyceride, high HDL cholesterol, High BP)

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Health Issues with FASD A-YN) Nutrients: deficiencies of zinc, vitamin A, folic Acid, iron, /

Neuroimmune

: excessive pro-inflammatory cytokines and inflammation cells in the brain

O

) Obesity (esp. females esp.

pFAS ; not FAS)/ Osteopenia (due to immune changes)P)Q) QT ProlongationR) Restless legs…often associated with low iron/ Rosacea or inflammation of retina, if present, can be treated with minocyclineS) Suicide risk is underestimated/ Seizures/Spondylolisthesis/ Sensory processing differences: over-sensitive, under-sensitive or craving sensory stimuli (or combinations of over, under and craving)/ Suggestibility

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Health Issues with FASD A-YT) Trauma/ TBI/ Traffic safety (play catch to see if patients can forecast where a moving object will be in 2-3 seconds)

U) Ureters can be double (duplex ureters are prone to “backflow”…leads to infection risk)

V) Visual changes (double vision/focus issues/ anticipating where moving objects will be in a few seconds [traffic safety])

W

) Whole Body

…as Myles, CJ and Emily say: FASD affects the whole body, not just the brainX) X-ray the lower back (rule out or treat spondylolisthesis) Y) Dr. Mark Ylvasaker: “ In absence of meaningful engagement in chosen pursuits, all interventions ultimately fail” Z)