The Two Decade Long Puzzle One parent s CMV journey and why awareness is KEY!

Transcription

1 The Two Decade Long Pzzle One parent s CMV jorney and why awareness is KEY! Presented by Christine Moody, M.P.H. Michael s mother Exective Director Indiana Center for Deaf and Hard of Hearing Edcation

2 Introdction & Session Objectives þ Identify which important players in the system need to be aware of CMV and how their awareness can lead to parents being more prepared for the pieces of the pzzle. þ List and nderstand mltiple reasons for a medical home. þ Explain tangible benefits of family spport.

3 Starting at the Beginning Facts I knew Worked in hospital; neventfl pregnancy Over 2 wks. early; 5 lbs.13 onces No complications, bt Apgar's = 4/9 Brising on his head/jandice Seizre at ~15 hors Spinal tap; precationary antibiotics throgh IV in head 5 day hospital stay (not NICU) Tiny VSD fond at one of first checkps after birth; ECG with contrast Looking Back Microcephaly Umbilical Cord Failre to thrive Apnea dring seizre Ototoxic medications HERE?

4 The First Medical Visits Pediatric Nerology EEG de to the trama of birth Pediatrician enlarged spleen/torch Screen positive for CMV; no real explanation of lab reslts/ see a specialist Pediatric Infectios Disease Specialist asymptomatic; PROGNOSIS EXCELLENT / NO information So, I went to the library and checked ot medical books! I wanted to nderstand. Those books terrified me, bt provided some explanation of IgG, IgM and information on what to look for with a CMV diagnosis. HERE!

5 Watch and Wait Developmental delays noticed Observations broght to pediatrician no clinical findings Changed pediatricians and referred to Pediatric Nerologist ccmv diagnosed; he will not walk and likely will not be aware of left side Pediatric Orthopedist fitted for AFO Pediatric Ophthalmologist nothing fond (wears glasses now) Pediatric Adiologist profond bilateral SNHL (progressed even more) ENT or Pediatrician really don t even remember this visit! Cat Scan no real explanation of what this meant in terms of expectations Never saw the Pediatric Nerologist again; never saw a Pediatric Infectios Disease specialist again No one tied it all together; spokes in a wheel analogy No professionals ever mentioned CMV again; focsed on clinical recommendations and treatment. It was like CMV went away and he became a list of problems. HERE!

6 Now What? Hearing aids by abot 18 months Langage delays Early intervention and therapy, therapy, therapy - no mention of CMV Pediatrician was for immnizations and sick appointments only No medical doctors ever asked abot therapy, discssed potential impact of CMV or clinical expectations, mch less social and academic potential I fond spport among other parents of D/HH children at a specialized preschool, bt no one was CMV like s Parent spport grops that inclded D/HH adlts helped me to see the experience of others and broadened my nderstanding of the niqeness of each and every jorney while still giving me that sense that I was not alone. HERE!

7 School Years ~ Is there an Assessment for this? No one provided any information on cognitive expectations related to his brain development and CMV Qirky behaviors and behavior difficlties srfaced for which I had no spport; a new pzzle piece Seizres resrfaced at age 5 for first time since seizre at birth (no connection to CMV mentioned); a new pzzle piece Seizre medicine started; after behavior modification seemingly met with dead ends, ADD medicines tried with no sccess Experienced general lack of knowledgeable medical professionals and edcational professionals; not trained for the otliers HERE!

8 What Parents Can Do Set high expectations Roll p yor sleeves Keep pshing forward, asking qestions and adapting Develop collaborative relationships with professionals Commnicate often and become an expert on yor child Find spport Spport others; get involved Breathe and try to offer as many experiences as yo can.

9 Srgeries ~ More Pzzle Pieces First orthopedic srgery at age 4 was sccessfl Oral srgery was reqired after his permanent teeth never erpted Next two orthopedic srgeries were completely ineffective, if not actally detrimental Be catios and seek mltiple opinions The well-meaning srgeons did not evalate him in the context of CMV or his nerologic symptoms/cerebral palsy. What was the cost (and I don t mean dollars)? HERE!

10 Social-Emotional Strggles Poor eye contact Implsivity Easily maniplated; bllied Desperately wants friends and a girlfriend Conseling begins Atism Spectrm Disorder diagnosed at age 18! final pzzle piece? Re-evalating Part B primary eligibility and services needed beyond high school in light of ASD diagnosis Social ineptitde + feelings of isolation + implsivity + ASD = addictive tendencies still discovering pieces of the pzzle and encontering new challenges.

11 Is a High School Diploma Possible? Works ridiclosly hard academically and never qits; reqires tremendos reteaching ; still strggles in expressive langage and literacy Very difficlt to assess with inconsistent IQ sb tests Strggles on standardized tests His mother has nrealistic expectations! Pshed to change diploma track

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13 After High School

14 A Word abot Parent to Parent Spport Credibility and trst Someone who gets it ; commonalities cross cltral, langage and socio-economic barriers Not alone; similar strggles Families learn from other families I can do this Valable sorce of resorces and information; different parents have different abilities (and time) to mine for information Helps pt things in perspective Advocacy and system change; have a seat at the table

15 Conclsions ~ It sholdn t take 20 years to figre it ot There are many points on the CMV jorney where professionals have the opportnity to share information with the family. Key professionals shold have a basic level of awareness abot CMV inclding a checklist of possible symptoms. Thorogh social and medical histories are vital. Knowing what possible things to look for or expect on the jorney redces feelings of helplessness for parents; knowledge makes parents more in control and can lead to soltions and strategies sooner. Parents need to be empowered with information. A medical home is crcial to manage all the spokes of the wheel and to have the big pictre. Ask where parents are finding spport; provide info and resorces. A holistic approach to the child/patient is worth the time; providers need to ask qestions. Parent to parent spport is vital to the well-being of the family. Finally, most families say that the birth of their child is the first time they have ever heard of CMV. Basic awareness campaigns inclding prevention awareness is the first step.

16 Any Qestions? Contact Information: Christine Moody ISDH, Center for Deaf and Hard of Hearing Edcation (317) Office (317) Cell