Pediatrician for illnesses (of which she has many in the fall/winter/spring)
Pediatric GI for her allergic eosinophilic esophagitis
every 2 mos for visit, every month for weigh-in
ENT for ear infections if they don't clear up with a visit to the ped.
as needed about once per year
Allergist for allergy testing and asthma treatment
about every 3 mos
Surgeon for care of her g-tube site, and button changes
as needed, about 2x a year
Pulmonologist for breathing issues, to rule out lung damage/inflammation from GERD
will see him for the first time in April, will probabl want to do a scope along with her endoscopy that is already schedule for April
Orthopedist to investigate chronic knee/leg pain and to rule out tethered cord since she has spina bifida occulta
will see him for the first time in April
Speech/Feeding Therapist for feeding aversion, gagging, possible swallowing problems
on hold since she is not allowed to have foods for the time being.
I can repeat some of yours first:
Pediatrician for illnesses (of which he has many in the fall/winter/spring) as needed...
ENT *and* audiologist for hearing loss and ear fluid, which we think we have now corrected with the tubes put in his ears in December...
Allergist for allergy testing and asthma treatment, periodic...
Speech Therapist for language delays, currently once per week (though the feeling that this is way too infrequent to really make a difference is creeping in)...
Feeding Therapist for oral motor control issues that impact his eating, was seeing her once weekly until this summer...now she has been pushing us to just work on it at home (it is EI...they like to do as few services as possible)...
And now let me try and remember his different ones:
Developmental Therapist for parent support, suggestions, monitoring of his progress, etc., once weekly...
HANDLE therapist for neurodevelopmental therapy, once weekly...
Occupational therapist for sensory issues and low muscle tone, see comment under feeding therapist, it is the same situation...
Neurologist for possible seizures, brain injury, etc., which we haven't done yet...we have our first appointment this month...
Ones we have seen, but aren't currently for various reason including having too many appointments right now:
Massage therapist specializing in craniosacral therapy
Neurodevelopmental yoga instructor
Feldenkrais (Anat Baniel Method) practitioner 1x week for motor issues (Conan has IVH/PVL)
Osteopath for movement and Conan's chronic lung disease
Ped ENT for Conan's enlarged adenoids
Nutritionist for Conan (small guy)
Pulmonologist for both boys (hist of apnea/bradycardia)
Neurologist (haven't gone yet)
Physiatrist (haven't gone yet)
Opthamalogist (to track progress and rule out ROP initially)
Social worker (but that's for ME to handle it all!)
Pediatrician -- too many times a year to count
Transplant Team -- for her kidney transplant. We go about every 8 weeks or so, more during rough times and she gets labs done at least every month.
GI/Liver Specialist -- for her liver abnormalities
Neurosurgeon -- for spinal fusion follow-up and check for ongoing issues
Orthopedics -- for "skeletal dysplasia", which basically means that all the bones in her body are affected by her syndrome
Immunology -- for secondary immune deficiency and treatment
Pulmonology -- for asthma/RAD. We're seeing her pretty frequently right now (every month or so)
ENT -- For follow-up on the ear tubes and adenoid removal
Urology -- For bladder and surgical issues
Neurology -- For following her developmental concerns
Opthamology -- Mostly just in case of issues with the physical eye, since dd is totally blind we don't need ongoing care
Special Needs Dentist --
Surgeon -- For care of her g-tube and other stuff
She's also been seen in the past by:
We'll probably be adding in the near future:
Care Coordination Team
Her therapies at school include:
PT, OT, Speech, TVI (Teacher of the Visually Impaired), O&M (Orientation and Mobility), Adaptive PE and a one-to-one aide
On average, I'd say we are at some kind of dr. visit at least 3 times a month. Depends on the season (less in the summer, way more in the winter). All but one of her specialists is a 2 hour ride each way.
Here goes the current list:
Pediatrician (basic illnesses and well baby visits, as needed)
Neurology (hypertonia, brain injury, potential CP and seizures, every 2 months)
GI (GERD issues, every couple months)
Developmental Pediatric Rehabilitation specialist (brain injury, CP, unknown frequency, we meet her March 23)
Nutritionist & Dietician (as needed for slow growth, phone consults)
Speech therapist (feeding issues, oral sensory aversion, dysphasia, 1x week)
Physical therapist (currently working on trunk control, correct head gradation and weight bearing on hands, always working on hypertonia and developmental delays, 1x week)
Occupational therapist (preventing the neck from developing torticollis, also working on hypertonia & delays, 2-4x/month)
Feeding team, consisting of an ST, psychologist, dietician, and OT, 1x/week, for above mentioned troubles under ST
Developmental therapist (every 3 months for evaluation)
Chiropractor (upper thoracic adjustments, belly massage for GERD & cerebellum area acupuncture, 2-4x/month)
When we still lived in Chicago, Finn also saw an osteopathic pediatrician for craniosacral treatments, and he has also seen an ENT for a laryngoscopy (which was perfectly normal!).
We expect to see a surgeon for G-tube placement within the coming months (and anything else that goes along with this - a home health nurse, perhaps?)
And for myself (since this goes hand in hand with Finn's troubles):
Therapist, and when I decide to stop pumping (probably not for quite a while), psychiatrist.
We're lucky if we have one free day during the week.
Pediatrician-as needed (usually once a month or so)
Urologist (neurogenic bladder/catheterization-every three months)
Neurosurgeon (monitors VP Shunt/spinal incision/motor development-every six months)
Physiatrist (next appt. in May, haven't been for six+ months)
Clinicl PT (once a week)
EI PT (every other week)
EI OT (every other month but dropping from dd's case at the next IFSP meeting)
Opthamologist (once a year to monitor vision conditions children with SB are prone to having)
Developmental Pediatrician (every six months)
Community Health Nurse (conducts home visits once a month to monitor dd's progress and acts as an advocate for dd where needed)
A ST for both kids weekly
Educational consultant every few months.
Gastro every 6 months for one kid
Stoma nurse as needed.
Endo every 3 months.
Endo nurse as needed.
Music therapist weekly.
Therapist aid weekly.
Surgeon every 6 months or as needed.
Urologist as needed.
Psychologist monthly for one kid
Another psychologist fortnightly for my dh
Psychiatrist monthly for my dh
Naturopath six monthly
I'm blanking on the rest. I know that a week or so ago I counted up 20 people who are involved in the care of the people I am carer/parent/partner to. It's one hell of a juggling job.
pediatrician, he's actually only gone to the pedi three times
ENT, he goes every two weeks and has had one surgical proceedure, one more this month
GI, we've only seen him once, he only sees us if ds is being evaluated for a tube
Neurologist, we have our first appt next week, no idea how much of him we're going to see
Speech pathologist, we see her for swallow tests and feeding therapy.
latation consultant, she work with the feeding therapist
we haven't started EI yet cause if his neurological problems are spine and brain malformations, pt can cause more damage if done before the problems are fixed.
Pediatrician (well checks and when she is sick. he is also keeping track of her progress with the other specialists)
Neurosurgeon (Orders MRI's and keeps watch on her spine and checking for re-growth of the lipoma)
Neurologist (checks on nerves and which ones are working and may not be working)
Urologist (Neurogenic Bladder, cathing 3xtimes a day)
Orthopedic Surgeon (for her dropped foot, just had achilles tendon release this past Wednesday)
Physical Therapist (PT and takes care of her AFO's)
She has seen in the past
May need to see in the future
Gastroenterologist (sp?) (We suspect bowel issues)
Anne, Mama to Conner 2/27/04 Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel & Delaney 5/12/08 & Beethoven & Gizmo
Family dr----1x month
Paed----every 2 months unless needed
ENT----Every 3 mos
Genetics----every 3 mos
Neurology----every 3 mos
Orthopedics---every 6 mos
Deaf childrens society----see them every 3 mos, but talk to them on the phone 2 xs a month
BC Family Hearing---Same as DCS
Infant Development----1x week
Speech Therapy----1x week
OT----every 2 weeks
ASL lessons----1x week
Lactation consultant----1x month
: : : : : : Wow thats nuts, never really realized how many people we see and how often.....
Occupational therapist, 1X week
Physical therapist (Feldenkrais practitioner), 1X week
Speech therapist/feeding specialist, 1X week
Itinerant teacher, 1X week
Physiatrist, every 6 months
Pedi orthopedist, 1X week for about 2 months, then every 6 months for a few years
Pedi neurologist, every 6 months for a couple of years
Now that she's older, she sees:
Pedi neuro every year or two (and gets a new MRI then)
Pedi ortho every year or two (but will see this guy a lot more, as she's getting a brace for scoliosis)
OT every 2 weeks
PT once a month
Physiatrist, every 6 months
She's seen a urologist twice, for urodynamics studies and a VCUG
And she sees her pediatrician yearly for a check-up and check-in
Gabriel, who has Down syndrome and autism, has had these folks on his team:
When he was in EI:
OT and PT, weekly
Speech therapist/feeding specialist, weekly
Lactation consultant, as needed (she made several home visits, then was available by phone)
Itinerant teacher, weekly
Pedi neuro, several times after he was diagnosed with Infantile Spasms
ENT, several times over several years
When he was older, things looked like this:
OT 2X month (at school) and 1X week (private therapist)
PT 1X week (adaptive PE teacher, at school)
Behavior analyst, as needed (we usually saw her every 2 weeks)
ABA therapy team, meetings 2X month, plus therapists in the home for 3 hours a day, 6 days a week
Pedi psychiatrist, as needed (we've seen him in person once, and by video conference once. He's also quite available by phone, which is nice, as he's 6 hours away)
Pediatrician as needed for check-ups and when sick
It's not too bad. We've had to travel to the city (6 hours away) to see several of the specialists. Fortunately, some of them, like the physiatrist, come to our region every few months.
Joni : and kids, incl. Michaela, 10 spinner in purple wheels, and Gabriel, 8, Down syn. and autism
Naturopath (general practitioner) as needed
DAN pediatrician (phone consult every three to six months)
Private speech therapist (twice weekly)
Metabolic genetics specialist (just consulted yesterday and will be seeing only if she turns out to have metabolic genetics issue; awaiting test results)
Environmental medicine specialist (consult planned in April)
We SHOULD have but don't because our new insurance is too annoying and there aren't enough network providers except for a long drive away and we can't afford to keep paying for stuff out of pocket and waiting for reimbursement until they start paying some of the outstanding bills.
Neurologist (I'd like her to have an MRI to rule out physical brain injury)
Nutritionist (diet is just nuts)
Pedi behavior specialist (I want a re-evaluation because I think her diagnosis is incorrect and I don't trust the school to evaluate her correctly)
audio processing therapist
pukminologist for new lung problems...
then at school he sees a
Main I could go on... oh and a dan doc...
PT x2 a week - hemiplegia
SLP (ST) x2 a week - feeding issues, "DISORDERS OF HYPOGLOSSAL (12TH) NERVE"
Gastro every other week - reflux, NG tube followup, trying to convince us that he should have a gtube
ped at least weekly - weight check, referrals
neuro primary monthly, consults also monthly, so twice a week - "FAILURE TO THRIVE
SIXTH OR ABDUCENS NERVE PALSY
DISORDERS OF HYPOGLOSSAL (12TH) NERVE
OTHER SECONDARY CARNITINE DEFICIENCY
OBSERVATION FOR SUSPECTED GENETIC OR METABOLIC CONDITION"
metabolic doctor monthly - see above
feeding clinic every three weeks - see SLP he sees a SLP, nutritionist and metabolic doctors at the feeding clinic and they call in other specialists as needed (gastro, pulmo, neuro, etc.)
pulmonologist monthly - repeat pneumonias, wheezing
developmental pediatrician - monthly but frequent phone consultations, she calls us daily when things are crazy, we love her. She coordinates care and specialists. We have her dirrect number. She tells the doctors in the hospital what needs to be done when AC is admited.
cardiologist every six months - echo to check VSD and PFO
ENT as needed - ear infections, chronic fuild, noisy breathing
genticist as needed - who knows
For my oldest we see many of the above but also see:
nephrologist every three months - proteinuria
orthopedist twice yearly - check for scoliosis and prescribe new ankle braces
heamotologist every three months - neutropenia
My two and a half year old is a frequent ENT and audiology visitor. She has yet to get a good hearing test, between fluid in her ears, tubes falling out, wax in her ears... but we have been trying for a year and a half.
I am sure there are more. It is enough to keep my head spinning.
Speech therapist (juggling 2) - once a week, between them
Auditory training specialist - as able to afford, private (3-4 times a year)
Homeopath as needed (1-2 times a year)
Neurologist - consulted once
GP - maybe twice in a lifetime, for referrals to the above.
Here is my list
psychiatrist every 4-6 weeks I guess. We've only seen her once so far.
therapy once every other week
endocrinologist for growth disorder
gynecologist - poor kids cycles are out of control
Speech at school
Family stabilization counseling 2 times a week to deal with the sibling problems and my oldest's threats of running away, suicidal thoughts, violent behavior, etc. *sigh*
Kara, single mom of 4 girls (5, 8, 16 and 19)
Kids have strokes too!
Dev. Ped - is also thier regular ped and wonderful. The usual stuff
Neurologist -for seizures
Autism support teacher
Dev. Ped -for the regular stuff and occasionally for additional autism related stuff
Special olympics - ok not a therapist per se but theraputic
Both - psychologist. Actually I regularly see this lady. She specializes in kids with ASD but I go to get tips and help with the kids as well as my own sanity. It has been THE BEST therapy for all of us.
Speech Therapist (both, school and ECI-based now, moving onto private)
Occupational Therapist (DD, school based, moving onto private)
Child Developmental Therapist for Floortime-like intervention coaching (both, ending soon.)
Gastroenterologist (DS, but will discuss with ped and GI if DD's chronic constipation needs to be investigated.)
We may also see an Allergist.
I would like to do in the future:
A family therapist
Therepeutic horseback riding
Only problem is that I only know of one place in our area that does it, and I had contacted them for info and they never got back to me-- urgh!
Ped as needed--we are blessed because this is VERY rare. all our specialists seem surprised we don't have a ped coordinating everything, I handle it myself because the ped sees us less than they do!
Endo every 3 months
Genetics wants to see us every year but they are useless visits at this point
ENT every 3 months (but we are coming up on a year of clear visits, so think we'll get to drop this!)
Audiologist every 6 months
Neurologist had our first visit this year, will go back again in a year if no changes
Renal scans every year
Neuropsych for dx, consults as needed
SLP weekly, pragmatics
OT should be weekly, still trying to find a new one
Therapist was weekly, dropped because her practice was not suited to our issues; looking for new one
Psychiatrist - every few months
Psychologist - annual
Occupational Therapist - weekly
Psychologist - annual
Occupational Therapist - private pay 1x/wk, school 1x/wk
Speech therapist - 1x/wk
Pediatrician - monthly right now (new asthma dx)
Ped. (I really like him), about once a month for check ups, progress reports and referalls.
Genetics- So far everything came back negative (for what they tested for), but may need to have further testing.
Neurologist-Having an MRI next week.
Dev. Ped. - On a waiting list for this.
Special Needs Dentist- DD has had a root canal, three fillings, x-rays and sealants put on teeth that did not have work already done to them.
Orthopedist- Every three months for her AFO's.
Opthamologist-DD just started wearing glasses, she looks so cute in them too!
Hearing-Tested twice, inconclusive, have to have another appointment towards the end of the year.
OT- Once a week (wish it were more, I LOVE her OT).
PT-Twice a week
Music Therapy- Once a week
Speech Therapy- Once a week (this should be more, she only has three words at 2.5 years old, but her case worker would not approve more than once a week.)
We have to see our case worker (coordinator for all the therapies, I am not sure what to call her) every few months plus talk to her on the phone about once a month or so.
General Ped for health issues as needed, although thankfully he has been pretty darn well the past few years.
Pediatric Integrative Medicine Specialist: basically a DAN! physician. WE haven't seen him in a while, basically be cause there isn't too much more he can do for us, but he was a huge help when Gabe wasn't speaking. We saw him for autism issues and apraxia.
Pediatric Neurologist: For autism, twice a year just as follow ups.
Pediatric ENT: As needed now, but was going regularly to deal with chronic sinus and ear infections.
Speech Therapist: once a week specifically for oral motor issues. This will be changed to a more traditional speech and language therapist when we are done with the oral motor program.
Occupational Therapist: twice a week for SI/Autism issues.
ABA/Habilitation: For autism/developmental and academic delays. Right now we are at about 10 hours a week although he has been approved for thirty hours.
Music Therapy: For autism. Is going to be starting this soon, don't know yet how often we will go.
PS... forgot to add that he also gets small group speech and OT services at school twice a week.
pediatrician- for well visits and when sick
ENT- for ear infection problems
optomotrist- she wears glasses
I am thinking of having her seen by a GI because of her chronic constipation.
pediatrician- for well visits and when sick
GI- for FTT
endocrinologist- for FTT
OT- for SID
feeding therapist- did an eval on him, but everything came back normal
pediatric dentist- had a crown put on a molar, and other cavities filled
nutritionist- because of his FTT
pediatrician- for well visits and when sick
ENT- had ear tubes put in for chronic ear infections
GI- was FTT for about a year, has now been discharged from the GI
Pediatric surgeon- had surgery on his neck at 14 months for a congential anomoly
ST- just started speech therapy twice a week
Peditrician - as needed
He's FTT so we'll be going in every once in a while for weight checks.
Physical therapist - 2 x's weekly
He has a joint deformity (clubbed feet, hip dysplasia, and really crooked knees). He also has very low muscle tone resulting from the deformity and he's also still recovering from a bilateral hip abduction @ 14mo. He's had surgery on his feet as well and has some scar tissue thats making the back of his heels kind of tight.
Speech therapist - 2 x's weekly
He's 22mo and says literally no words - he has a brain malformation (which also caused the joint deformity) and unfortunately the speech part of his brain is affected. He signs very well though so that's what we're working on the most.
Occupational therapist - 1 x weekly
His joint deformity effects his upper extremities as well but luckily not nearly as much as his lower limbs. He just has a little bit of weakness in some of his upper muscles (he army crawls so there are some that he doesn't use much). We're working on using a spoon as well because he still can't (probably my fault though )
Orthopedics - as needed (usually like every 4 months except for when he's casted or has had a surgery or something)
For correction of his clubbed feet and hip dysplasia.
Orthotics - as needed when he grows out of his braces or to get something new (like the AFOs that he just got fitted for
Neurologist - 2 x's a year usually
Mostly he's just keeping an eye on his development and he was worried that his lack of movement in his lower extremeties could be neurological instead of just low muscle tone, but he's got a lot stronger since his hip surgery so I'm sure that's not the case. He's also at risk (because of his brain malformation) for seizures and CP so we have to keep a look out for that.
Genetics - 1-2 x's a year
I don't even know why we go to this one... I know 1000 times more about DS's condition than the doctor. Its pretty pointless so I'm not sure we'll even go again - especially since the drive there and back takes 2 hours just for the Dr. to get a 2 minute "update" that could have literally been done over the phone. :
Carly  + DH  + DS 
TTC my second and his first!
ped - a couple of times a year
neurologist - now every six month. He's my spina bifida guru and gives a great overview to make sure we aren't missing anything
neurosurgeon - once a year to monitor if there are any concerns
urologist - once a year (cathed 6 times a day)
ophthamologist - 1-2 times a year for monitoring because some eye issues occur with sb
private speech - 2 times a week
orthopedist - now every 18 months for monitoring
We have also seen:
ENT - for concerns of our SLP that she sounded "nasally"
audiology - to make sure her hearing's fine
EI OT (about 6 months worth and she could probably use some OT now, but I don't want to pay for it with only minor issues)
EI PT (woo hoo! discontinued at around 2.5 years astonishingly enough)
NICU follow-up clinic (annoyed me to now end so we quit going at 18 months)
I would also like to investigate therapeutic riding this spring.
Seems like I'm forgetting something, but I have no idea what.
and OT, ST
and The Nurture Center Store and Resource Center 3399 Mt Diablo Bl Lafayette CA 888-998-BABY
now we just see
-neurologist, down to every 6 mos
-cranio-sacral therapy 1X a week (the reason he has had no seizures for 7 mos., down from 50-100 a day)
-hippotherapy/OT 1X a week
-homeopath 1X a month
-speech 1X a week, starting soon i freakin hope, been having a hard time getting it
at school, he just started 2 weeks ago, speech and OT
he has been seen just one time by a few other people, cardiologist, opthalmologist, pedi surgeon, etc.
before we decided to stop testing
and we will be seeing a pediatric orthopedic surgeon very soon. Sarah Beth was born with six fingers on her right hand and we need to start talking about having the extra finger removed.