Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

Archive for the ‘Doctor’ Category

My Health Sucks

I got a couple of new diagnoses this week and now I’m on a total of EIGHT. EIGHT. DAILY. MEDICATIONS. PLUS supplements. I don’t get the flu, I haven’t gotten covid, it’s been YEARS since I’ve had a fever. But I have all this chronic JUNK that affects me…. and I’ve had fourteen surgeries in my lifetime too. Taking care of my health is becoming a JOB. Just what I need— another UNPAID occupation, along with being a full time advocate with doctors, therapists, and schools to two complicated teens! I’m only 47, and only 50 pounds overweight really— which is obese, but it’s not like I’m even close to 200 pounds, let alone 300 or 400. I have more diagnoses than close friends at this point. At my doctor’s appointment on Friday I reminded my doctor why I’m there and what the recent bloodwork showed and he CONGRATULATED me on my new diagnosis. Hardy har har. Two of my medications are exactly the same as two of my husband’s. Getting older is…. interesting.

Just Venting

Many years ago the pediatrician sent us to the psychiatrist.  The psychiatrist sent us to the wrap around center.  the wrap around center was awful so we begged to get into the developmental pediatrician.  She bumped one twin to the psychiatrist (a different one).  She referred both twins to the nutritionist.  Both twins lost weight.  Psychiatrist had Fred change meds and his blood sugar went up and BMI isn’t good.  Developmental ped keeps Wilma on a med that makes her gain weight and her weight increases greatly.  Her BMI is awful.  My husband is insulin dependent diabetic and I have hypoglycemia and had pretty intense insulin dependent gestational diabetes so….. She refers both twins to the endocrinologist.  Endocrinologist is doing A1C’s on both twins, sending both twins back to the nutritionist, and asking us to enroll in a weight loss program that asks us to come in at least weekly.  With 8 hours a week of ABA on one twin, speech therapy on both twins, 2 hours of homework per week per twin, and tutoring/ friendship circle/ other activities, I’m finally stepping off the treadmill and saying NO to the weight loss program.  Each developmental ped appointment takes two hours— this morning’s endocrinologist appointment took two hours—–  getting bloodwork from Fred requires an entire building to take a valium.  This morning’s double meltdown at the endo was because I wasn’t going to be able to get Wilma to school in time for the beginning of recess.  ALL of our appointments are within ONE hospital system (at a bunch of different campuses)——-  something has got to give.  DOCTORS:  STOP ASKING THE SAME QUESTIONS at every appointment.  Spend 15 minutes looking on the computer at the history from multitudes of other doctors— then bring us in, do some poking and prodding, and ask a few questions.  My kids are missing too much school and I’m missing far too many brain cells.

First Grade Fun

It’s time for the first grade update.

Home is still hard. REALLY REALLY hard. She ticks him off on purpose by flopping on the ground and refusing to do what I ask (including using the toilet—- yeah I’m such a mean mom asking her to go potty). He screams and goes into multi-bite mode. I send him to the playroom to calm down. He screams from there. She still refuses to comply. And on and on. It used to be about toileting AND dinner AND getting on the phone with the grandparents AND homework but now homework is off the list. For whatever reason, homework is going well for Wilma this year. There is a LOT more homework in first grade (at least a half hour every day) but Wilma is calmy complying with homework time. Woo friggin HOO! Fred is having a REALLY rough time with the repetition of homework and the forced writing (he hates being told to write), and anxiety attacks over coming up with a sentence about a book he read, etc. But at least for Wilma, homework is okay.

Fitting homework in is hard. Lots of after school therapy and appointments, dinner, and I can’t seem to get a handle on helping them both at the same time so I usually help Wilma first and THEN help Fred while Wilma plays on the computer or ipad. On a non appointment/therapy day, this works but on other days I HAVE to help them together and it’s hard.

But school? School is going BEAUTIFULLY this year. We have Wilma’s increased adderall dosage to thank for her success. She is now on 5mg abilify and 30 mg adderall. We have finally found the adderall sweet spot for her and her adhd is under control. WHEW. Her oppositional defiance disorder and autism are definitely NOT under control. And don’t even ask about the encopresis. But the adhd? SO much better. And Fred? Well aside from biting the teacher and doing a lot of screaming and crying, he’s academically doing just fine. Socially? eh. Anxiety wise? eh. But he loves school and they’re working well with him and the other kids are accepting of him. Aside from a lack of ABA, I LOVE both of their schools. I really do. Oh, and aside from a lack of Judaism. At this point I’m getting less hopeful that they’ll someday be in Jewish day schools and more accepting that perhaps our place is in public school.

Monday, the friendship circle girls come after school— that will start this week. Wednesday, they’ll go to an activity club run by the Bikkur Cholim house— that will also start this week. Thursday is speech therapy. So our only non appointment/therapy day will be Tuesdays, but I met with a new therapist today who might be able to work with them on Tuesdays so we’ll see. Meanwhile whenever the SELF waiver comes through and we have ABA funding our entire schedule will have to change in a big way.

First grade is fun. Writing sentences, learning addition and subtraction (well for Wilma anyway. Fred is doing fractions, decimals, and percentages with his teacher— thankfully they’re willing to do that for him because his high anxiety moments include being asked to do math at the level where he’s supposed to be– keep his mind moving, and you keep his anxiety at bay– they’ve learned that.)

Wilma is on abilify and adderall. Fred is cutting down on the abilify and going up on the zoloft (did I mention we took him off focalin and put him on zoloft?)—– doc wants to get him off abilify all together with a huge dose of zoloft— good luck, doc. we’ll see.

Toilet training/ megacolon/ encopresis update to come over the weekend or next week—- I’m just…. BUSY!

More diagnoses— let’s add 560.30 to the list…..

People are asking for clarity— exactly WHAT does Wilma have now?

Apparently it’s a BADDDDDD case of non-retentive encopresis/ megacolon and THAT’S the main issue, NOT her hypotonia. All MUSCLES are working correctly, but she had SUCH severe constipation we didn’t know about (she was pooping daily) that her colon expanded to the extent that nerve endings lost sensation and she was NEVER able to learn to poop on the toilet. Now, instead of pooping once a day, she poops SMALL poops a million times a day, NEVER in a toilet— the ONLY way to solve the problem is to keep her pooping a lot with lots of intervention— the nerve endings are such that her body CAN’T form one poop a day. The doctor has hope that one day the nerve endings will regain sensation IF we can unconstipate her. Every time we do an xray and calm down on the medications she constipates again. So now we’re going to start daily enemas for a while plus probiotics plus metamucil plus a special medication I’ve never heard of. Meanwhile we’re positive she’ll be pooping a zillion times a day for many more months. I was SOOOOO hoping it was something else.

Picture teaching 1st grade public school and having a student poop herself a bunch of times every day— since it’s bound to get a lot worse before it gets better, that’s where we’re headed. Typical cleanout methods have made her miss school (diahhrea)— so we’re hoping enema protocol will be better.

I should just rename this blog Poop and Stuff.

Today’s GI appt……  we’re doing another cleanout, but NOT with milk of magnesia or miralax— HOOOOORAY!!!!!!!!!!!!!!!!!!!!!!!  No more 15-17 diahhreas per day for 4 days in a row!  I *CRIED* when he suggested another cleanout and we compromised with enemas— we’ll do enemas every day for 7 days and at least once a week after that.  We’re doing a spinal MRI to rule out tethered cord— of course he feels it’s JUST a constipation problem that will “take a while” for her to get sensation back, but I need to cover all ground.  He wrote prescriptions for a probiotic, metamucil, a special pill to take the place of miralax (hopefully it won’t do what miralax did), enemas, and pullups (we haven’t had free pullups in a while—– medical supply companies have been providing through insurance either child extra large or adult extra small of off brands— Wilma is RIGHT in between and needs a size that works so I gave up on insurance and bought pullups— but everytime this doc does a cleanout I curse him as I spend a ridiculous amount on pullups— so we’re going to try to get the BRAND I WANT and the SIZE I WANT through insurance.  Of these 5 new scrips, the pharmacy MIGHT have 1 of them by Tuesday— a few others were already rejected but the pharmacist is calling the doc’s office today.  The constipation end of the encopresis journey is a whole chapter in my upcoming novel.  BLEAHHHH!  Our behavior specialist from the county board came with us— she’s going to help me get a behavior plan in place to get Wilma used to sitting on the toilet to try to poop each day— Wilma has NO trouble sitting after an enema, but to sit when we don’t know whether poop is coming causes a massive meltdown.  With the new pill and with the enemas, we COULD be looking at 10+ poops a day again—- but the long term plan is to make it get a lot worse before it gets better.  If we DON’T go through the process of getting LOTS AND LOTS of poops coming, she’ll NEVER regain sensation.

Manometry

Wilma’s manometry procedure will be Monday. Not surgery perse, but it might be kind of awful since it will be painful and they’re not putting her under. Just got a call asking us to participate in a study about how young children react to this procedure– that’s not a good sign that Monday will be a piece of cake for her. I wish I didn’t have to torture her with all this craziness.

The GI doc ordered a third cleanout and a third xray—-  the third xray STILL had plenty of stool in it.  But before the nurse could tell me to do another clean out (each clean out requires 40 + pullups, 4 days stuck at home going nowhere (so sick of her missing school), and an autistic child who is very mad at the whole situation)  — I said—- we’re NOT DOING ANOTHER CLEANOUT!  Multiple cleanouts which make her poop up to 17 times a day don’t clean her out—- they don’t make normal poop— they just make the frequency even greater.

Please let the manometry tell us SOMETHING about what she can or can’t feel!

Poop. Part 3.

my faith in Wilma’s new GI doc is restored. After a horrific weekend, the bad news is that she has to have another xray and an enema before she gets a monometry. The xray is to see where everything is— top?  Bottom?  Are these 8 zillion poops coming AROUND a blockage?  The exam Friday didn’t indicate a blockage but before a monometry we have to make sure.  the monometry is to measure the pressure in the anus.  Hopefully that will give us some answers.  My guess is that there’s a nerve ending problem or a pressure problem, but not Hirschsprungs.

But the GREAT news is that she’s not (yet) getting a biopsy and she’s now OFF two of the three new meds— one of the meds caused SUCH horrificness this weekend.

She’ll probably still get sent home from school tomorrow (though I plan to try to send her, with a nice email to her teachers about what’s going on)—I mean how many times do kindergarten teachers want to change a 6 year old?  They usually do it once or twice a day— but four to five to ten times?  nah, they’ll call me.   But we’re on the road to normalcy and some sort of diagnosis. Hooooooray!

Meanwhile it’s such a pain to write down every time she poops and try to find the piece of paper.  I’m now using a nifty little program where I can enter in poops for both kids.  And meds.  And therapy appointments.  And doctor calls.  And med changes.  All the stuff that’s on a million pieces of paper all over my office.  This free program is online– check it out!  http://birdhousehq.com/

Poop

Poop.

So Wilma will be 6 in a month and still has never put a poop in the potty or toilet.  Her favorite phrase is “mommy I made a poo poo in my underpants”.  I wouldn’t mind hearing it once a week, but I hear it every day, sometimes multiple times a day.  If she would just TRYYYYY.  I know that neurologically and psychiatrically (sp?) she has plenty going on, but I was convinced that perhaps there was something physical too.  Her nerve endings clearly aren’t wired correctly and I thought that was affecting her.  The school nurse wanted me to bring her to a GI doctor to rule out GI problems.  I was 100% sure she wasn’t constipated, because hey.  She poops everyday.  Multiple times many days.  How can she be constipated?  We didn’t need a GI doc.

The xray proved me wrong.

This week, she’s on milk of magnesia, miralax, and metamucil.  Large doses.  The results have been interesting.

According to the GI doc, if I keep her on maintenance doses through January we can then revisit potty training in January knowing that at least she won’t have all of her business pushing on her rectum and bladder.

Pediatrician- Home Base

My neurotypical mom friends are talking about their five year old’s well visits and it usually goes something like this:  “once in a while he’s still having accidents at night, so we talked about that”.

Um, yeah.  We’re not even close to fully daytime trained let alone thinking about night-time training.

At my twins’ well visit this morning we discussed handicapped placards (I now have a prescription because of all the times Wilma SITS in the middle of the parking lot refusing to move and Fred bites her, bites me, and cars stop and honk.  I’m alone with them holding both their hands and sweating.  Fun times.).

We discussed wheelchairs.  Wilma is 54 pounds and most normal strollers go to 55 pounds.  I now have a prescription for a wheelchair or special needs pushchair due to her autism and hypotonia—- there is no way I can go most places with her without a stroller (or now, her fancy schmancy chair that, to get, I’ll have to call insurance, call her neurologist, go to a seating clinic, blah blah blah).  DAILY in the middle of wherever we are, she’ll sit down and REFUSE. TO. MOVE.  No amount of bribing helps.  For that matter, when we take family walks with the double stroller (which we’ve truly outgrown), Fred insists on sitting.  If we get rid of the double stroller and take just Wilma’s wheelchair, my hope is that Fred can use it for a BIT of each walk while Wilma walks, and Wilma can use it when she does her floppy act.  He can get used to walking farther and farther distances because physically HE is completely capable.  She is far more hypotonic than he is.

Any questions about eating or sleeping?  Nope.  Any medical issues at all?  Nope, not really.  Just questions about handicapped placards and wheelchairs.  Hidden disabilities SUCK.  All these moms of neurotypical kids look at my kids who at age 5 can read (one can write), handle a general ed curriculum (one knows third grade math!) and wonder why we’re always off to the neurologist and the psychiatrist.

Fellow special needs moms are telling me not to bother bringing up the toilet training issues, the wheelchair stuff, and generally anything out of the ordinary with the pediatrician.  Just take that to the neurologist and psychiatrist.  I see the pediatrician as being home base for all of our medical, developmental, and behavioral issues.  I like that she has EVERYTHING in her files and when I call to ask a quick question she knows the entire history of each child.

So I’ve got the NT moms thinking I’m nuts for over-doctoring my kids and the SN mommies thinking I’m nuts for trusting my pediatrician so much.  Yep I’m nuts.   And a little sad that though I’m INCREDIBLY EXCITED that I went with both twins BY MYSELF this morning to the pediatrician and nobody got bitten (THANK YOU ABILIFY!)……  I didn’t get to talk about normal five year old developmental stuff, but instead dove deep into the special needs world of handicapped placards and wheelchairs.

Describe a Typical Day In The Life of This Child, Morning Through Night

 

Entrance to the Occupational therapy Department

Image via Wikipedia

One constant in my life is PAPERWORK.  The SRS, the Vineland, the CFQL, the stuff for the neurologist, the stuff for the genetics guy, the stuff for the psych consult, the stuff for the county board of developmental disabilities, the stuff for school, the stuff for daycamp #1, the stuff for daycamp #2 (they’re in two camps this summer— one just ended and one just began).  I’m always working on some stack of paperwork or another.  Whenever I think I’m done for a few weeks, something else pops up.  The stack I’m working on now is specifically for Fred and I’m not yet ready to say what it’s for.  But I did want to share how I answered one of the questions:  Describe a typical day in the life of this child, morning through night.  I learned about myself and my child while coming up with the answer to this question.  My husband helped me.  THIS is how we spend our Saturday night at 11:00 pm.

As you’re reading this, remember that he’s about to be five years old.

Fred sleeps with a child lock on his door so that before he wakes up he cannot access his sister.  He sleeps in a Goodnites brand overnight diaper with stretch pants and a onesie on top to prevent diaper digging.  He wakes up in a good mood, chewing on his favorite Curious George stuffed animal.

I change and dress him and his twin sister and give them breakfast.  On days he has daycamp or school he rides the bus (in a harness) to school or I drive him and his sister to daycamp (in carseats).  On non school/ camp days, he likes to draw on his magnadoodle, play with blocks, spell with magnet letters, do math workbooks, read books, jump on his trampoline, and be tickled.  He is not as prone to enjoy playdates with children his age or typical games for four year olds as he has trouble taking turns.  He doesn’t enjoy taking walks if the destination is unknown and therefore requires that an adult push a stroller so that when he melts down, he can sit in the stroller.  He requires constant redirection so as not to stim on particular toys or activities.  He needs frequent reminders before activity transitions will take place.

We tend to avoid group activities:  picnics, barbeques, parties.  His behavior in public is completely unpredictable and though at times he is successful, he most often needs lots of support as he tantrums, screams and bites.  He does well in a SMALL group with mostly adults.  In a larger community event or a room with more than two or three children, he is extremely overwhelmed.  We try libraries and playgrounds from time to time but those visits need to be short and well supervised.  As his twin sister also has special needs I can no longer take them both to the library or playground by myself due to his unpredictable behavior.  If she refuses to leave the library, he bites me and then runs off to bite another child while I’m picking her up.

Going to the dentist is a horror show.  Thus far, we’ve been using a dentist who does not put children to sleep.  From now on, we’ll be going elsewhere.  I’m physically incapable of holding him down without getting extremely bruised in the process.  Going to the doctor has been getting steadily better and his behavior is unpredictable—at times he’ll tantrum as we’re walking in and at other times he’ll play happily until he sees that he’s about to be examined.

As he is not yet toilet trained we are sitting him on the potty every hour on the hour.  He does not yet use the potty but he is now comfortable sitting there as long as we don’t ask him to perform.

After plenty of occupational therapy he is now extremely successful with bathtime and enjoys it.  Nail cutting, however, is still a massive challenge and a two adult effort.

At this time he has no problems with eating what is served to him although if he’d rather play than eat, he tantrums and requires a four minute time out in his room before he will buckle down to eat.

He is a good sleeper and sleeps through the night but usually takes a while to settle and runs around his room.  This is typically when he chooses to defecate so I go in and ask him if he needs a change and I change him.  THEN he goes to sleep.

Mothering this child is my greatest joy and my greatest challenge in life.  It’s very difficult to hire a babysitter or  leave him in a room unattended for a few minutes.  However, I need to make an income so I work at home.

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