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What specialists does your child see?

post #1 of 30
Thread Starter 
I thought it would be interesting to list the specialists your child sees (including therapists) and how often you see them, and for what conditions. I was amazed when I thought about Nitara's list! Never ever thought I would have a child who saw so many specialists!

Nitara sees:

Pediatrician for illnesses (of which she has many in the fall/winter/spring)
as needed

Pediatric GI for her allergic eosinophilic esophagitis
every 2 mos for visit, every month for weigh-in

Nutritionist
as needed

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.
post #2 of 30
Hmmm...I wonder if I can do this without forgetting anyone. I will do this for my ds only, since dfd is just starting services.

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:

Applied kinesiologist

Massage therapist specializing in craniosacral therapy

Neurodevelopmental yoga instructor
post #3 of 30
Our babes have seen:

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!)
post #4 of 30
Dd's list of specialists that we see

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:
Cardiology
Metabolics
Genetics

We'll probably be adding in the near future:
Endocrine
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.
post #5 of 30
It's about time for another tally, anyway. I also never expected this.

Here goes the current list:

Pediatrician (basic illnesses and well baby visits, as needed)

Specialists:
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)

Therapists:
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)

Supplemental Care
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.
post #6 of 30
Wow! I thought we were busy with appointments. Nothing like hearing other's stories to put it all into perspective.

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)
post #7 of 30
We see a developmental paed about every 2 months, a general practitioner (equivalent to a US paed) as 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.
post #8 of 30
well my son's only two months old, so this list will probably go... hopefully not.

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.
post #9 of 30
Gabrielle sees:

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

Accupuncturist
Orthotics

May need to see in the future

Gastroenterologist (sp?) (We suspect bowel issues)
post #10 of 30
Martin currently sees
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.....
post #11 of 30
When she was in early intervention, Michaela (spinal cord anomaly) saw:

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
post #12 of 30
We have:

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.

Occupational therapist

Neurologist (I'd like her to have an MRI to rule out physical brain injury)

Gastroenterologist

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)
post #13 of 30
For DS autism we see

Pediatrician
develpomental ped
speech therapist
occupational therapist
physical therapist
audio processing therapist
allergist
pukminologist for new lung problems...

a natrupath
then at school he sees a
speech
physical
occupational
audio processing
audiologist
chiropractor
Gi doc


Main I could go on... oh and a dan doc...
post #14 of 30
For my baby:

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
HEMIPLEGIA
SPLENOMEGALY
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.
post #15 of 30
Hmmm... I guess it won't be much .

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.
:
post #16 of 30
Wow, I thought my life was scheduled around appointments. So many of you see so many people.

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*
post #17 of 30
Well it is definitely slower now that it used to be that they are older. I have also ditched most medical professionals at this point. The kids aren't medicated for behavior and I don't really need updates anymore to tell me they are still autistic and offer me meds (which seemed like all they did).

Cait
Dev. Ped - is also thier regular ped and wonderful. The usual stuff
Neurologist -for seizures
Theraputic horsebackriding

School-
OT
Speech
Autism support teacher
shared aide

Mike
Dev. Ped -for the regular stuff and occasionally for additional autism related stuff
Special olympics - ok not a therapist per se but theraputic

School
OT
Speech
Music Therapist
Autism co-teacher
1:1 aide
SDC teacher

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.
post #18 of 30
Hmmm.

Now:
Pediatrician (both)
Neurologist (both)
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.)

Planned:
Gastroenterologist (DS, but will discuss with ped and GI if DD's chronic constipation needs to be investigated.)
Geneticist (both)

We may also see an Allergist.

I would like to do in the future:
A family therapist
Therepeutic horseback riding
Art therapy
post #19 of 30
Quote:
Originally Posted by Empress View Post
Therepeutic horseback riding
Oh yeah! I think ds will love this when he is old enough (what is the youngest age they will take...ds is going to be two in April?).

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!

Quote:
Art therapy
That reminds me, we have also been looking into music therapy, though we are again having trouble finding someone in our area.
post #20 of 30
My list isn't very long. We seem to go through spurts where we have a million appointments and then a period where we have very little. I <3 the quiet times!!

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
Cardiologist yearly
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
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