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

Archive for the ‘Hypotonia’ Category

Is It Possible?

Is it possible that the twins have stayed on the same meds for a while? Fred is on Risperdal and it’s working fairly well!  Wilma is on adderral and geodon (and all the poop meds— enemas, metamucil, colace, probiotics, etc) and….. it’s working fairly well!  Is it possible that Fred has had ONE toilet accident in the past many months (not counting night-time)?  Is it possible that Wilma (only so far through great scheduling and enema timing, etc) only has one accident every few weeks or so?  Is it possible that Fred is down to biting once a month?  Is it possible that Wilma is down to massive tantrumming once a week?  Is it possible that Wilma’s whining and impatience doesn’t bother me so much anymore BECAUSE things are so much easier in general?

And the BIG ONE—- -because the Jewish camps aren’t affordable (as if I could afford two camp tuitions AND two one on one aides) and the special needs camps aren’t affordable (the past four summers we sent them to the ONE affordable special needs camp on this side of town and it got worse and worse each summer—- AND they tripled their price— so now it’s babysitting, not camp— AND too expensive)——– I’m doing CAMP MOMMY and it’s going halfway decently?????

So far we’ve done playgrounds, science center, out to lunch, out to ice cream, spraypark, mall, chuck e cheese… and we built a swingset (they helped me drill!). cooking, baking— Wilma thinks challah dough is a great sensory activity. gonna put up a basketball hoop next week and then we’re getting either a trampoline or a pool (Wilma keeps changing her mind). later in the summer we’re doing piano lessons, and we’re keeping up the limudei kodesh tutoring. We’re down to 3 ABA sessions a week and up to 2 speech therapy sessions a week. Most of my work I’m doing after they’re in bed (and still making decent money, amazingly), but for a few hours a week they come with me to my local sm client and they play with the ipad and read while I work. On the docket still to do…… bowling, library, playground world, and lots of the area playgrounds. We’ve played a few games, read a bunch of books, done some coloring/painting/etc— and so far in the past 15 days have watched ONE dvd— my daughter is NOT good at sitting and watching, lol. TRYING to get them to ride bikes with training wheels, but our gross motor skills are kinda rocky and that’s definitely a non preferred activity (double meltdown fodder). They DO like their scooters though. Here’s a funny—– one twin got a TONNNNNN of summer homework and the other twin got none. So unfair— that’s the icky thing about them being in different schools.

And the zoo. how the HECK did I forget the zoo? and I’m getting braces again so soft food for mommy will be a theme— lol.

I hire help, I utilize my hubby who is off all summer (hello, I’m the only income all summer— you will play with kids when I wanna work, k?) and SOMEHOW, so far so….. GOOD?!?!

BARUCH HASHEM for ABA (6 hours a week for Wilma these days— still waiting priority on the waiver wait list for Fred) and the right meds…… and for these monsters getting older and more mature!

Also?  Also?   Wilma can walk a mile with no stroller now!  HA HA HA HA!!!  Every family walk does NOT involve her flopping down and refusing to move!  (as long as SHE picks the route).  Bye bye hypotonia— you don’t rule our lives anymore!  I might sell the fancy expensive special needs stroller soon!

 

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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.

I’m so sick of all the poooooppppppppp!

Every night I put the kids to bed.  Every night I go back into both rooms to change diapers.  Every #$%#$% night.  They’re 6 and a half years old.  Our entire upstairs smells like a zoo.

Fred, I’m not as worried—– He’s well over 90% toilet trained during the day and if I simply forced him to TRY to poop each night before bed rather than just ask him if he has to, he’ll stop waiting until his night-time pullup to do his business.  So from now on, watch out Fred, mommy is going to make you TRY each night before bed.  Won’t that be fun?

Wilma’s next GI appointment is tomorrow. She’s 6 and a half and the only 3 times in her life that her poop ever went into the toilet is after her 3 enemas (pre xray and pre procedure). She’s had xrays and a manometry so far and though the MUSCLES are working, it’s clear that something else isn’t (nerve endings? communication from that part of the body to the brain?). Her typical poop schedule is 3-4 small poops per day rather than one large one. The GI doc has been saying it’s constipation and we just need to get her pooping more often so that her muscles can retrain to feel the urge. Everytime he has her do a cleanout, she poops 15-17 times per day for 4 days in a row (meaning she misses school and I get kicked in the face a lot— she hates being changed). We’re all much happier when she poops ONLY 3-5 times per day. Clearly, he’s wrong. She might be constipated, but so what— there’s something else happening here with the nerve endings or brain communication. When she fell and needed stitches she didn’t feel the pain. She doesn’t feel pain or hot/cold like other kids. My plan for tomorrow is to ask about a spinal MRI.   If he tells us just to do another cleanout, he’s done and he’ll be lucky if I don’t beat him up. She IS hypotonic and is late on all gross milestones, but I haven’t met another mom of a hypotonic kid yet who can’t toilet train by this age unless there is something more severe.

We don’t think it’s Hirschsprung’s.  Now the possibilities include a mild form of cerebral palsy, a mild form of spina bifida, CIPA or another HSAN, Celiac, and a bunch of other things my helpful facebook friends have told me to pursue.  When these kids were diagnosed with autism, I had no idea that nailing down a PHYSICAL problem would be even more complicated than the constant med changes/ IEPs of autism!

 

Results from Monday’s test

The manometry was fun!  As much fun as sticking wires and balloons up your child’s butt COULD be…..

For most kids, it’s painful or irritating or annoying.  For Wilma?  She didn’t feel a darn thing.  The computer showed that her rectum and shpincter work just fine— but they filled the balloon to the extent that most kids desperately have to go to the bathroom and she didn’t feel any difference.

So we know that it’s not her hypotonia—- it could be a nerve ending issue.  It’s not just the autism or just the adhd. It’s not Hirschsprung’s disease.

So now we do further testing— is it a very mild spina bifida?  Is it a very mild cerebral palsy?  WHY can’t a six year old, whose muscles WORK, toilet train for #2?  The mystery continues.

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 Part two.

Once upon a time, Wilma had never pooped in a toilet.  She had one poop a day in her pullup— usually at nighttime after I put her to bed in her nighttime pullup.  Life was calm.  As calm as life could be with two autistic five year olds.

Wilma turned six and her school nurse suggested I take her to a GI doc to rule out physical problems.  Was her encopresis PHYSICAL?  EMOTIONAL?  IMMATURITY?  Who knew?  So I figured the GI doc would find nothing wrong and life would go back to the usual.  She just wasn’t ready to toilet train.  okidokee.

GI doc did an xray.  Despite Wilma pooping at least once a day (nice normal sized ones), she was backed up to her eyeballs.  I agreed to a cleanout.  She pooped like CRAZYYYYYYYYYYYY for a weekend but then on the maintenance meds she was at three to four poops a day.  ok, that was do-able.  Until it was five to six poops a day.  Then up to ten poops a day.  On the maintenance dosages.

So we went back to the GI doc Friday.  He wanted us to do cleanouts EVERY weekend for the next three months.  He wants to re-train the neurofibers in her anus or some ridiculous sounding bunk like that.  He did not suggest a rectal biopsy to rule out Hirschsprungs or a scope.  He simply wants to INCREASE the meds.  I was in shock, but agreed.  Oh Lordy Lordy.  Friday night I gave her his recommended dosages.  Saturday she pooped 14 times.  That’s 14 pullups, people, at 70 cents per pullup.  Today, Sunday, she pooped another 14 times.  Might have been 15.  I lost count.  Her body cannot be enjoying this.  I am going CRAZY.  He’s got to give me money for all these pullups, some respite care, and dammit, I want HIM to change her for a day and see if he still thinks this is the route to take!

He increased the maintenance meds too.  hah.  After 30 poops in 48 hours, my husband and I agreed– NO MEDS TONIGHT.  As it is, even with no meds tonight we have no chance in heck of her being able to leave the house tomorrow– trust us– there will be another 8-12 tomorrow!  It’s president’s day so no school, but we’ll just sit at home playing games, coloring, reading, and changing pullups.

I’ll call the doc— NO WAY am I putting her through this anymore.  He needs to jump straight to a rectal biopsy or a scope, OR I need to stop going down this road and forget about toilet training her for another year or two.

It’s heartbreaking to have a fully verbal, cognitively aware, “HIGH FUNCTIONING” six year old NEVER defecate in a toilet, but I think it’s even more heartbreaking to allow poop to rule our lives in the name of “maybe this will teach her anal neurofibers”.

Hirschsprungs?  EE?  If this is a physical problem, what’s your diagnosis, fellow moms?  At this point it’s pretty obviously a physical problem.  Despite her severe adhd and her autism, she can speak paragraphs about where poop is supposed to go and she IS able to put her urine there.  She cheers her brother on through his poops and flushes for him.  She watches me poop.  She totally gets it.  I don’t think she’s cognitively perfect, but THIS—- SHE GETS IT.  But her body doesn’t.  I can’t believe it’s just her hypotonia either.  I don’t know anyone with hypotonia like THIS.

SO SICK of wiping her butt.

And for all of you wondering—- if she’s so high functioning, why not just put her in a Jewish day school with a one on one aide—— here’s your answer.  How many day schools are obligated to change a six year old?  Public school HAS to take her.

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.

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