Intake with The Pediatric Weight Management Program Endocrinologist

Today we had the intake at The Pediatric Weight Management Program with an Endocrinologist.  I was impressed. The 1st thing I noticed was that her office had all kinds of signs that I noticed while waiting about Autism Research Studies.  We arrived early, but Honeybunches must have approved of the waiting room because he was very well behaved.  They had a show he liked on Disney Channel on the big flat screen television.  Ollie I think it was.  He sat quietly in the seat until we were called.  They took his weight, height and blood pressure. He was 4'8'' and 129.6 lbs.  That left his BMI to be 28.9 which is 98.9% the paper says. The Endocrinologist said she has a lot of experience with children who have Pervasive Development Disorders.  I explained to her how a  lot of his eating is behavior related.  She said she understands, knows that from his diagnoses and medications plus that we'll work on it.  She blames the antipsychotics.  We went over his history with that type of med.  I told her how he was on Risperdal from ages 4-6 and gained 65 lbs in those two years going from 35 lbs at age 4 to 99 lbs at age 6.  The 1st thing she said we'll do is put him on Metformin. She said it would work with the brain's insulin response to food or something like that.  In her experience 8 out of 10 children who have antipsychotic induced weight gain, lose weight on it.  With the other 2 out of 10 she said it just doesn't work for whatever reason.  She is calling in a script for that so he'll begin it either tonight or tomorrow.  She said we'll know in a couple months if it is going to work or not.

She said with the antipsychotics and his Autism he can't help eating a lot.  He's hungry.  We went over what he usually eats.  She said I'm doing a good job with his diet already and doing lots of what she tells other people to do.  The dietitian came in to talk with us too.  She gave Honeybunches a cool plate:

He was excited about that, because I made it seem like a big deal to have his own special plate that he'd be the only one in the house to have and he just loved it anyways so that worked out well. 

The Dietician also gave me a Food and Activity Journal to fill out daily until we see her again in a month.  She had a couple ideas, for example:

•  I said how we give him a veggie, grain and protein for dinner.  She said that we should add in some fruit and yogurt or cheese too like the plate suggests. 
• A good snack he agreed he'd like is fat free butter popcorn, a boiled egg or 1 packet of oatmeal. 

She gave us a folder with this magazine in it called Chop Chop which Honeybunches enjoyed looking at on the way home.  It had recipes (None of which I can see him actually eating), snack ideas and a word search he enjoyed doing.  The folder also had handouts:

• Meal and snack pattern A 

• Healthy Snacks 

• A "Nutrition at a glance" card.

So his 1st appointment went very well.  I was highly impressed by them, how much they know about Autism and how understanding they were.  Everyone in the office was awesome, especially the doctor.  We go back again in the middle of May.  The doc ordered some fasting blood work to check his A1C, liver enzymes, cholesterol and some other stuff.  He has 3 blood work slips we have to have done in the next week.  Two of them are fasting, so I'll just do them together on the same day.  The other one specifically has to be next Monday, but can only be at a certain hospital, so we'll make two lab runs next week.   Tomorrow we go for a follow-up with his Pediatrician in regards to today's appointment. 

Oh, Honeybunches did absolutely awesome all the way to his appointment, at his appointment and all the way home!  :)  We had a really nice driver who actually talked to us this time lol.  She took the back road instead of the highway so there was more sightseeing to do.  I hope we get her again sometime, because she's been the best, most patient, friendly driver we've had yet. I brought a travel style version of the Marvelous Marbles with us, so that might have helped.

My New Life as a BzzAgent

On Easter weekend when one of my sisters was visiting, she brought this new hand-soap with her.  We tried it out as she was mentioning to me how she got it for free and more about being a BzzAgent.  She thought I might really enjoy doing it too, since I love free stuff, writing and social media.  She explained it to me a bit more.  The next day I signed myself up.  I am excited that my 1st product to test and write about will be coming in the mail shortly. If I tie my blog to the BzzAgent website and write about stuff here from time to time I'll get more points.  I promise I'll still talk about my life as a mother to Honeybunches, so don't worry about the blog being all about being a BzzAgent now.  I'll still talk as usual, with a little bit of BzzAgent reviews mixed in. Please stay tuned for more details!

GI Doc Appointment--Upcoming Biopsy

This afternoon we went to see Honeybunches Gastroenterologist.  He didn't have much to say, but sent us to the lab for more blood work to test for some rarer things that can cause liver issues. In case it means anything to anyone reading, he tested:

LFTs
GGT
Acute Hepatitis Panel Viral (Which has been ruled out as a cause of his liver issues many times)
Ferritin
Cerulopasmin

He said that Honeybunches does have to have the liver biopsy still.  The nurse said she's waiting to hear back from the team, but she should hear from them in the next few days.  Then she'll call us with the appointment, which will be probably in 2-3 weeks but maybe as far out as 4 weeks.  Anyways, it's coming up soon. She said there was a mix up with scheduling last time, but when I called last week she called them so they should call her back within a few more days.  The nurse went over a paper about the biopsy.  She said to prepare to be in the hospital for 8-24 hours after the biopsy.  That day sounds like it will be a hard one.  No food after 8 pm the night before, no drink after midnight but she said they usually don't do the biopsy until noontime!  I asked if they could try to give him a morning appointment, because by noontime he'd be very unhappy.  She didn't quite understand.  She said that "Nobody is happy when they go for that".  Yeah, well they have not seen my little man unhappy lol.  I wonder if they've seen a child with Bipolar and Autism unhappy?  I guess they'll get a lesson! It's not clear if he'll be able to have his morning meds that day.  If not then his Lithium level will probably get all messed up.  Plus him going until noontime or later with no morning meds should be fun. (Insert sarcasm...) Once I have a date, I'll be even more nervous.  It has to be done though, as that's pretty much the only way they can see what's really going on with his liver.  Blood work and ultrasounds only tell so much.

According to the GI doc's scale, he gained more weight which is concerning as he's already very overweight. IDK why because he's been eating less lately.  He is 4'7'' and 130 lbs according to their scale, but he had thick jeans plus a big sweater on.  On Wednesday we'll get a more accurate weight at his pdoc's appointment.  Last I knew he was 116. IDK where the extra pounds all came from.  The GI doc was happy that we got Honeybunches into the Pediatric Weight Management Program.  He has an appointment there next week with an Endocrinologist. 

Honeybunches said something that concerned me a bit.  He was asking why everyone is Spanish or Chinese and said he needed a white person. The big hospital is in one of the biggest cities in our state.  It's much more diverse there, so there are several Spanish, African American and other minorities working at the hospital.  I told him that God made everyone different, because if everyone were the same the world would be boring.  He said it would not be for him.  IDK where he gets that from, because Honeybunches is 1/2 black although he looks white with a tan, DH aka "Daddy" is African American.  Princess looks like Daddy.  I have no idea where he is getting these ideas in his head from.  We live in a mostly white town, but I don't raise him to be that way at all.  In fact, I have tried to instill in him just the opposite.  I've tried from the time he was an infant, to train them to be accepting.

Besides picking his nose about 30x on the ride there and back, he did really well. The more I told him not to, the more he did it and laughed.  Gross!  He wanted the sandwich and cucumbers I packed right when we got in the vehicle, about 3 pm.  I tried getting him to wait, but he used his words and said he'd get really mad if I didn't let him eat.  I just let him, but explained that was dinner.  He accepted that and didn't ask for another one tonight.  He even did okay with the unexpected blood work. The unexpected is always rough.  In the waiting room he was telling me that they needed to get a man to do his blood work because he only likes the lady at the usual lab we go to.  I told him we'd have to wait and see who it was.  Then once inside, she tried to use an adult needle instead of the butterfly one.  He didn't like that.  He was telling us he was going to act up.  She got another lady to help her.  Then he said he'd behave.  I was hoping it didn't come to her holding him down, because that would have made getting blood work a traumatic experience for him.  With how often he gets it done because of his Lithium, we surely don't need that! It turned out okay though, thankfully. 

The man who gave us a ride today was really rude in a quiet way lol.  He didn't say anything at all.  I guess maybe he doesn't like me too much lol.  He remembered us when we got in the vehicle and asked if he'd driven us before.  I remembered him to and said he was supposed to but had car trouble.  Yup, car trouble which made Honeybunches miss an appointment in the past so I called to complain because he came an hour late but they didn't send anyone else. I even talked to a manager.  I was very mad that day. I guess he might have remembered that because he didn't talk at all. When we got in after the appointment Honeybunches asked him "So what did you get"?  The man didn't answer.  Honeybunches surely said it loud enough.  I think he wanted to show the man the chick we bought at the gift shop.

Marvelous Marbles

So plan #1 didn't work so well.  We moved on to plan #2 which we called Marvelous Marbles.  I made a "Marvelous Bag" with items I found at Walmart on clearance for about $1 a piece.  I got him some envelopes, white board crayons, a spider ball, stretch elastic ring things that were only a quarter for a pack, Reese's cups (He loves them but we never usually buy candy so that will be a special treat), a keychain and a few other items I found for around a dollar each or less. (Yeah, sometimes he loves things that other children don't like envelopes and keychains.) This version is much simpler. I can change up the coupons, so when I feel like he might be ready to go on outings again I can add them in on the reward coupons. Next time I might make police or ambulance coupons.

He was getting confused with how I had the last one where we'd tally up by 5s. This one will be simpler for him so he can just check off a box along with each marble he earns.

With the Checker Chart things began not going so well rather quickly.   Going on all those outings was not working well. He held me hostage at the railroad tracks, refusing to get back in the vehicle because I would not let him buy something at the store. Then he got angry because he chose the railroad tracks as part of the incentive he earned, but then after we were there for about 10 minutes he changed his mind and wanted to go for a walk instead.  He tried pinching my hand and was ready to hit me with the snow scraper if I didn't get it out of his hands in time. That was not a very fun trip. :(  Here are the coupons I made:

That is the reason why I came up with this new plan instead. Princess helped me name it.  I wanted something that flowed well with marbles.  She came up with the Marvelous Marbles.  I loved the way it sounded.  We also began a new computer sign up time sheet at home today.  Honeybunches was not very happy about that.  He was often trying to control the computer it seemed.  He'd kick people off to just go on for five minutes.  Princess was rarely getting turns.  It wasn't fair.  Now on school days they can each pick 2 one hour slots and on no school days they can pick 3 slots.  I wrote it on paper and placed that in a plastic sleeve so we can circle the time slot next to the names.  That frustrated him today the 1st time he learned about it.  He became a bit aggressive because of it.  Hopefully after a few days things will calm down with that too.  He hates changes and new things.

New Behavioral System

Above are pictures of a new behavioral system I'm implementing.  I asked people in an online group I belong to as well as got some other ideas from looking up Token Economies plus from a couple people on my Facebook page.  I combined them into something that might work better for Honeybunches.  Basically today I went to a local thrift shop, where I found all the incentives above for $5. (Yeah I know some of it might look interesting like the roll of paper, cards, calendar and other papers, but he likes different things.)  They didn't have marbles as somebody else suggested using, but I found some checkers (From checker games which probably didn't have all the pieces but will work excellent for this purpose) which can replace them with the same principle.  I made the checker behavior jar from a pickle jar I cleaned well, de-stinked and disinfected then decorated. In case you can't see 30 minutes = 1 checker for each successful behavior... 5 checkers earns 30 minutes of computer time or 30 minutes of the Netflix box... 15 checkers earns watch Netflix box with Mom or Dad; Play game with Mom or Dad; Arts and crafts project with Mom or sister; 45 minutes of computer time... 30 checkers earns go for a walk with Mom, Dad or sister dd16; 1 hour of computer time; go to train tracks for 5 minutes; print 2 papers.... 75 checkers earns go to train tracks, airport or jumptown for 20 minutes; Help Mommy plan dinner menu for one night next week; Bake a special snack with Mom; Pick something from prize box... 150 checkers earns going to the park in nice weather; June-August go to beach if hot enough; Go to buy a donut, Mc Donald's or other special outing; Go to Dollar Tree on next counseling day. 

 He will earn the checkers, but not have them taken away. That's one thing everyone agreed on that gave me their ideas. The way I'm going to do it, he can earn up to 3 checkers every half hour to start with if he does all the 3 behavior rules. As he keeps doing well, he can keep earning bigger incentives. For example when he gets the 5 checkers he can pick something from that category. If he keeps doing well and works up to 10 then he can pick from that one. The same all the way up. I'm not going to make him wait and save his checkers for the bigger prizes, but as long as he continues to do well he'll keep going up. Then when he gets to the 150, he'll pick a choice from there and then begin the cycle again at 5 checkers. 


The time chart of when he can collect his checkers and incentives. He gets home at 3:15 on school days so then it's going to go 3:45, 4:15 and every half hour from there until 7:15. On no school days it will begin at 6:00 then 6:30 and every half hour until 7 pm. I also made a tally chart I made to keep track of how many checkers he gets up to 150. Then it will begin at 5 again after he gets a big reward.

Report Card and Progress Reports

 

Second trimester report cards came home today.  Above is how Honeybunches did.  I'm proud of any progress he makes.  This time it was in:

"Reading and Literature: Comprehends inferential meaning (implied, not stated) of texts went from just Modified to Beginning to develop standard (Not yet able to produce grade level work);

Math: "Organizes, displays and analyzes data" went from Beginning to develop standard not yet able to produce grade level work to Progressing toward standard (Producing grade level work with direction and assistance)";

He's meeting the grade level standard in Art and Gym. The rest of his grades don't show any changes since last trimester.

I got 3 of his progress reports too.  The ones from his teacher, she said she'll send home next week.  I got his counseling, speech and OT ones today though.
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In Counseling: 
She states he: "Has difficulty positively expressing his feelings of frustration, anxiety and stress.  He frequently uses verbal outbursts which become very disruptive to the class as well as limit his ability to complete work assigments.  When feeling frustrated or overwhelmed, he continues to escalate until he is often asked to remove himself from the class to take a time out.  He is not able to verbalize his feelings, instead uses disruptive, negative behaviors to gain attention.  Despite these negative behaviors, he has been able to transition into counseling very well.  He also participates in social skills lesson given to his class every other week.  He has an incredible sense of humor and can be a very engaging young man..."
 
Goal: "___ will demonstrate the ability to verbalize his feelings associated with frustration, anxiety and stress in a positive manner in order to produce work representative of his ability."

Comments on benchmark/objective 1 (Learn 3 coping skills and utilize strategies 50% of the time in order to help him appropriately express his feelings of frustration, anxiety and stress and reduce his disruptive behaviors during the class) say "___ continues to work on identifying and appropriately verbalizing his feelings.  He continues to struggle with the comprehension of his feelings, which in turn hindered successful peer interactions.  Continued work in this area would be beneficial..." 

Comments on benchmark/objective 2 (Will participate appropriately during social skills group 50% of the time) say "He continues to struggle in the larger group setting and often removes himself from the classroom's social skills lesson.  Continued work in this area for ___ to remain in the class and participate would be beneficial."
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Speech and Language: 

She reports how recently he has missed many sessions due to refusal to attend or that he is sleeping at the time of his session; .  "His sleeping was usually in the morning so speech time was moved to afternoon. Since the time change, he has not been sleeping, however, has refused to come on 2 occasions." She also states how he "Continues to make improvements in all areas of his communication... is increasingly cooperative and participates more fully in speech language therapy activities...articulation skills are within age level expectations...tendency to mumble and use a rapid rate of speech which impacts his intelligibility at times..."

Goal: "___ will demonstrate increases in expressive and receptive language skills to improve communication across all educational settings"

Comments on benchmarks/objectives:
1. (Will expand his vocabulary, understanding and usage by identifying synonyms/antonyms and provide definitions of words presented in 4 of 5 opportunities) He is working on increasing his vocabulary knowledge and usage by making associations of parts of a whole with 56% accuracy, and completing analogies for 71% of given opportunities.

2. (Will produce verbal and written forms of complex sentences in 4 out of 5 given opportunities):
Continues to work on producing verbal more complex sentences, by using picture prompts for parts of speech and sentence structures.  

3. (Will state the main idea, paraphrase and answer a variety of WH questions, following verbal and self read presentation of material and increasing length and complexity with 80% accuracy) 
States the main idea 67% of presented short oral stories, he is paraphrasing, with assistance and he answers WH questions about verbally presented materials and self-read with 77% accuracy.

4. (Will complete 3-4 step complex directions involving a variety of conditional, sequential, temporal and locational concepts with 80% accuracy)
Follows 3 step directions of increased complexity 5 out of 7 presented sets of directions. 
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OT: 
She wrote: 
He "has made great strides in all learning domains, but especially the development of frustration tolerance and work ethic.  He is a self-responsible learner who is proud of his many accomplishments... His rough copy is legible to himself and a familiar reader... Computer skills continue to improve to where he can use a 2 handed hunt and peck approach to both type final copy and compose 8-10 wpm... He tends to over or under focus on mistakes, which can slow his pace..." (This one was lengthy so I didn't write everything it says such as the details of what he's working on, etc. 

Goal: "Will demonstrate improved paper/pencil and computer skills in order to complete daily writing tasks legibly at his expected academic level".

Comments on Benchmarks/Objectives:
1. {Using a 2 hand "Hunt and peck approach" to keyboarding he will type final copies of written compositions up to 10 sentences, with increasing attention to details of punctuation, capitalization and spelling, 80% of trials (Typing tests and work samples)}
She said "He continues to work on this objective, with decreased adult intervention at his request.  OT assists as needed with editing, grammar and syntax, but generally he needs only about 5-7 cues per session.  He often insists on using only one hand, but this does not reduce speed of composing.  He is an excellent typist which is the best method of producing legible compositions. 

2. Will type 10-20 wpm {(Using a hunt and peck 2 hand approach) when composing rough drafts of assigned written compositions 80% of trials (Typing tests and work samples)}
She says he "Types 16+ wpm and continues to develop his ability to think and type.  This quarter he needs cue to use both hands... Met 75% at 16 wpm. 


3. {Given adapted worksheets as needed, he will size and space numbers correctly on math assignments, legibly to himself and a familiar reader, 80% of trials.}
He prefers to use math worksheets rather than any adaptations.  He does best and output is more legible to himself and a familiar reader when cued to slow down.  His 1:1 aide follows through with all recommendations on a daily basis.

She said "He has been consistantly cooperative and happy, demonstrating a great sense of play and humor, especially with written compositions.  He now prefers to complete work/journals without cuing or scaffolding from this OT.  He continues to make steady consistent progress in all domains and when focused, is a responsible hard worker.... He continues to make steady progress in the visual motor domain.  He is a delight to work with.  It is anticipated that he will most definitely meet all objectives by the end of this IEP, as he has made such progress."
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I didn't receive his educational or behavioral goals from his teacher.  She said she'll get those to me next week, as she had a doctor appointment and had to leave early today.

Pdoc called

Bye Bye Seroquel. Hello again Abilify, but a much lower dose. Pdoc emailed me back asking me to call her. It took her so long to get back to me because she's been very sick for a couple days. She was bedridden, but is getting better. She's decreasing the Seroquel beginning tomorrow. Then she wants him on 1 mg Cogentin once a day and is putting him back on Abilify starting tomorrow, but only 2.5 mg once a day. In the past he was on 10 mg, 15 mg and 20 mg. He was never on it so low. I don't think that will work, but we'll see. She said we'll just keep a very close eye on his liver enzymes through blood work. If that is not enough, she'll try 2.5 mg of Abilify twice a day. The next drug of choice she'd try is Lamictal. She didn't want to try that now, because she said it's so slow to work. She said it goes up in 25 mg intervals up to 100 mg 2x day. She wanted to try the low dose Abilify 1st. She is against the old APs (That the 2nd opinion pdoc mentioned) because of their side effects. She doesn't want to use Depakote (Which is what she thinks Dr T her boss lady would suggest and something the 2nd opinion doc suggested) because it's metabolized through the liver. She didn't agree with the 2nd opinion pdoc questioning his Bipolar, because as she said "He clearly cycles" and Celexa made him suicidal. She also said she's going to research some of the newer antipsychotics (New Risperdal and a few others she mentioned) to see what she can find out about them and if our insurance would cover them with prior authorizations. Insurance often denies requests for various reasons.