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Shame On Me

I have not been doing a very good job keeping up with this these past few months and that is a shame. Silas has been doing so many awesome things and achieving so much! I promise to write another post to catch up on where he is at now and then continue to make frequent posts. Sorry everyone! Life gets crazy sometimes!

Sh!tty Situation

I was scrolling through my Facebook feed the other day when I came across an article a family member had posted and it definitely caught my attention…

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My first thought was “WTF?! My son takes this!!!” So, I immediately began reading and the farther and farther I got into the article the more I could feel my heart pounding and my blood boiling. For those who don’t know, MiraLAX is prescribed for constipation. My son, who recently just turned 4, was prescribed this medication when he was around 2 years old by his gastroenterologist. I never questioned her because she is supposed to be one of the top G.I. specialists in the state of California.

MiraLAX’s main ingrediant is Polyethylene glycol. According to the National Institute for Occupational Safety and Health, it is an extremely toxic substance:

“Ethylene glycol is chemically broken down in the body into toxic compounds. It and its toxic byproducts first affect the central nervous system (CNS), then the heart, and finally the kidneys. Ingestion of sufficient amounts [as little as 30 ml — KM] can be fatal.” [2]

If you’ve even made it this far you can see why I was becoming upset….and this is just the beginning. Keep reading…

In addition to neurotoxicity, the following serious complications have been associated with polyethylene glycol-containing laxatives:

Nephrotoxicity: PEG has been connected to nephrotoxicity — an euphemism for kidney damage — when used as a drug solvent [link, link] or when applied to skin [4].  For these reasons PEG is contraindicated for patients with kidney disease. This particular “side effect” is most likely related to the hydrolyzed (separated in water solution) molecules of ethylene glycol.

Urticaria: PEG may  cause allergy-related hives (urticaria) — raised red welts on the surface of the skin. Children are particularly susceptible to hives, and face a grave risk of anaphylaxis — a life-threatening allergic reaction that may develop within minutes or even seconds after ingesting a PEG-containing laxative. Links between PEG and urticaria have been documented as far back as 1991 [link].

Esophageal perforations: Also known as Mallory-Weiss tear, esophageal perforations associated with polyethylene glycol electrolyte lavage solution have been reported as far back as 1991. These tears and related bleedings may occur in the mucus membrane of the lower part of the esophagus, or upper part of the stomach [link].

This particular side effect isn’t directly related to MiraLAX which is taken in smaller doses, but the potential is always there, particularly among young children or patients with GI tract obstruction that may initially manifest itself as constipation.

Encopresis. The involuntary passage of stools in toilet trained children is one of the nastiest side effects of taking PEG-containing laxatives. The same condition may affect adults, and for the same reasons — a continuous leakage of semi-formed stools from the large intestine, an outcome of PEG “working” too well.

All of the “collateral damage” from PEG shouldn’t surprise anyone, least of all seasoned chemists, pharmacists, and medical doctors. This industrial chemical is manufactured by The Dow Chemical Company for use in wood treatments, paints, coatings, rubber, textiles, detergents, and toilet bowl cleaners [5].

Wow. Just wow. Oh, we still have more…

Despite all of its well-established risks, MiraLAX has never been tested for safety in pregnant women and children:

Safety and effectiveness [of PEG] in pediatric patients has not been established. ” “Animal reproductive studies have not been performed with Polyethylene Glycol 3350 NF. It is also not known whether Polyethylene Glycol 3350 NF can cause fetal harm when administered to a pregnant woman, or can affect reproductive capacity…” [7]

ARE YOU KIDDING ME???

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OKAY, JUST SHOOT ME. This information isn’t all of it either. There is a LOT more if you want to continue reading and find out more. http://gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html#.VKJIw4x4940.facebook


So, what did I do with all of this newfound information? I called his G.I. doctor and his peditrician because I was absolutely livid. I called and left messages the next morning for both of them to call me back. I finally heard from them around 5 p.m. I had already had ALL day to fester over things and boy did I. The G.I. doctor called first.

Her first sentence: “So my receptionist said you wanted to talk to me about a medication I put your son on?

Umm..yea. I explained to her all of the information previously stated and she was downright offended that I questioned her. Hold up, this is my son’s well-being we are discussing and you want to be offended because I questioned you? Are you out of your mind? I was trying to be polite as possible but that quickly ended within the first minute of the conversation. Basically, she went on to tell me that it’s not approved for use for children because people do not want to give their kids up for drug testing but it is the most commonly prescribed drug for constipation. IDGAF! Then how the hell are all of the other drugs approved for use in children approved?! Oh I guess my questions make sense huh…and why has he been on it 2 mf’ing years?! She said to go ahead and take him off of it and we can try a diet plan. I asked if there were alternatives she said no and hung up on me. Little does she know we go to see her in 22 days!!

His pediatrician called almost immediately after. I was quite nice to her because I actually like her. She told me the same thing in a much nicer way and said my concerns were definitely valid ones. She gave me some suggestions to try and said to go ahead and stop giving him the MiraLAX. We will try giving him fiber supplements first and go from there.

They don’t get it though. I don’t want to just treat his constipation. I want to know WHY he is chronically constipated. Ugh…

ABA Progress

Summary of the Quarter
Silas had a successful quarter meeting 27 of his 33 goals and partially meeting 2 goals. The family strongly supports the program by maintaining expectations and running lessons during and outside of program time. Silas began attending pre-school through the Sutter County Office of Education once he turned 3 years old. He made significant progress in manding and will request items or activities using an “I want” carrier phrase. He made significant progress in matching and can now perform the task in a unorganized field of 5. Most recently he is independently urinating at home and at school.

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Hooray Silas! I’m so proud of the progress he has made so far. Everyday he shows us something new he can say or do. I’m loving it!!!

Progress at School

This is an email I received from Silas’ teacher at school…

I just wanted to send you a quick email because sometimes in the rush of things we don’t have time to talk.

  • At school silas seems to be speaking with more intonations, especially when we are playing with him. For example if we try to give him the wrong transition strip he might smile and says no (with a higher intonation)
  • Today another student was waiting while Silas was in the bathroom, the student wasn’t super excited, laid on the floor & Silas independently said “It is ok ____”,
  • When going out to recess today he was asked if he wanted his jacket on he said “no” but when he went outside he told another staff member “I want my Jacket Please”
  • He seems to be more interested in others on the playground and will run around with them.
  • Today he asked once independently to go to the bathroom..
  • Along with his goals we are working on many other skills.  Some of the recent  activities that we are focusing on are,  cutting, gluing/pasting, and working on independence with these tasks.

Let me know anytime if you want to talk or get further information about the classroom.  Having the home program information and knowinf what he is doing and struggling with in that environment is great to have.

Thank you,

That is some awesome stuff!! Way to go Silas!!!

Potty Update

We began potty training not too long ago. Silas learned what he is supposed to do quite quickly, but he learned how to get out of doing it even faster. He is so in the routine of having a diaper and will do whatever it takes to get one. He has figured out that if he says he needs to poo poo that he will get one. He is taking Miralax for constipation which makes his BMs quite runny. I made the mistake a few times of leaving him in underwear and that was a terrible experience for both of us. Plus, he refuses to poop on the potty.

Now, just to get out of his underwear he will say he needs to go pee pee so that he can take the underwear off (he is a stripper for using the bathroom). He is too smart for his own good. He has tricked me a few times when he said he needed to poo and then immediately filled up his diaper with pee.

Over the past few days he has been fighting pretty hard to not wear underwear. It’s a battle of the will power now. He thinks that if he brings a diaper to one of us that he will get to wear it so I have had to put them somewhere he cannot reach them. The child is so persistent.

School 

The first day I sent him to school in his underwear he held it the entire time he was there. That’s over 3 hours! Child has amazing bladder control. As soon as he got home he ran to the bathroom and peed for ages. I figured out what the issue was when I made an appearance at the end of his school day. It was the toilet they use. He is used to having it a certain way at home so I brought up his seat for them to keep there. Also, at home we let him have his privacy. At the school, someone was sitting directly in front of him. I know I wouldn’t like that when I was trying to go. Once they stepped outside the door and he had his seat then he was successful! Woot! Woot! Hopefully that continues to improve.

Potty Time

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In our household we have begun the fun period of potty training! Silas is almost 4 (2 weeks!) and is showing all the signs and interest in using the potty. I have been talking about this with his therapy team for some time now. We formulated a plan, rewards, and reenforcers for all the different aspects of going potty. Last weekend, I decided it was time to start.

The first day actually went really well. He didn’t seem to mind sitting on the potty. Each time we went, which was every 30 minutes, he would sit for about 3-5 minutes. For some strange reason he thinks he needs to get naked from the waist down to sit on there but whatever works for him is fine with me. We pulled out some fun books and the dry erase board to keep us entertained while we sat in there. Throughout the day I was peed on multiple times, my floors got mopped, and carpets scrubbed. I changed two bowel movements, which were utterly disgusting since he takes Miralax so it was super stinky and runny. Overall though, he didn’t hide from me near as much when he needed to pee since he figured out really quickly he didn’t like having wet underwear. At the beginning I thought to myself, wow…this may actually be easier and go faster than I thought it would.

The first day of therapy of the week, one of his therapists was sitting in there and started excitedly yelling for me to come in there. She said “Tomonica, Silas is peeing in the potty!” I listened for a second and started laughing. It wasn’t Silas peeing, it was the toilet making sounds. When I told her this it looked like someone had just crushed all of her hopes and dreams.

I sure am glad we thought to include the potty icon on his schedule. He is a very visual learner and really enjoys being able to add and remove icons on his schedule. Plus it helps him know what is up next so he has time to mentally prepare. He thinks he is sneaky though. When he thought we weren’t paying attention he would remove his potty icon from the schedule and put his iPad icon in its place.

We have had a few successes so far. The first time he peed while sitting on the potty his face was priceless. He looked about like this…

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We were so happy and were also dying from laughter. He was holding onto the handles on his potty seat looking confused as hell. Total so far, we have had 3 pee successes. And you know what…he could care less. Silas shows absolutely no excitement at all. He is happy, but not about peeing, it’s about him being done sitting on the damn toilet. He has begun saying bye bye to underwear and even taking them off. Then he will ask for a diaper so that he can pee or poop in it. Yeah, I knew it couldn’t be that easy.

Silas is very set in his routines. In his mind, he has peed and pooped in diapers for the past 4 years so why change that now? Plus, it is not cool when he pees and ends up stepping in it. He gets very upset. I would think that this would be more motivation for him to go sit down and piss in the toilet but nooooooo we can’t do that. He ignores the social stories and every other attempt at convincing him to use the toilet. I broke down and let him have his iPad while sitting there. That worked but I can’t let him have it every time we go in there because he will think he gets to keep it and momma don’t let that fly. Oh look, it’s time to go sit on the potty….

Good Day

Today was a fun and relaxing day for Silas. Despite having a cold, he was in a great mood. It has been raining here all day which is unusual considering we are going through a drought. When I realized that it was pouring outside I opened the window so that Silas could see it. He stood in front of the window flapping with excitement. I had forgotten how long it has been since he had seen rain. We put on our jackets and went outside to take it all in.

Silas sat in my lap on the front porch watching the rain for about 30 minutes until it stopped. We talked about all the things we saw and he repeated everything I named. I brought out his little chairs from his table and we ate a snack while the rain picked up again. We played cars and even went into the rain for a second. Silas wasn’t too fond of the cold rain which was hilarious watching him run from it. We stayed outside for about a total of 2 hours.

I really like the fact that he enjoyed being outside and did not want to go in the house. Usually it is a fight to get him to do anything outside other than jumping on the trampoline, which is why we went out the front door.

Tonight he surprised me again by taking a bath with me. When Silas was little he used to take baths but ever since we moved into the house we are in now he has always taken showers. Not quite sure why that is but tonight he decided to try it out with me again, At first he was pretty unsure about the whole thing and sat on my lap. Daddy brought us Captain Hook and Spider Man who were then repeatedly thrown into the deep end of the tub. I did the voices of them begging not to be thrown and then screaming while they sank. This ended up being pretty amusing for Silas and I was able to slowly move him into the tub so that he was sitting by himself. By the end of the bath I had to tell Silas it was time for him to get out and pull the plug since he kept saying he didn’t want to get out.

Every day he surprises me more and more with the little things he does.

Road Trip

Friday we decided to go on a road trip since Silas was out of school, I was off work, and Daddy didn’t have class. Our original destination was Jackson State Forest. Since the travel time was 3hr 15 mins one way I was unsure of how Silas would do since it had been forever since we took a long trip. The last one we went on was when we moved from Louisiana to California back in 2011. We got up, did the things we had to do, and left the house at about 11:30. To our surprise, Silas did fantastic on the drive.
First, we stopped at Clear Lake to stretch and get some built up energy out.

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Silas really liked being able to walk down by the water and sit on the large rocks.Plus he just looked super cute doing it!

Then we got back on the road. Ironically, the GPS took us to an unexpected destination….California State Penitentiary.

We 1391474_10202835156699344_665658446675697459_nwere technicially at the Jackson State Forest…10704129_10202835156819347_4689536749975672881_n

but not where we intended to end up! We took advantage of the location we stopped at and snapped a few pictures of us by the redwoods. Then, back in the truck we went down super curvy, sloped roads leaving the mountain range. We decided since we were already so close we would head to Fort Bragg, CA. Little did we know, we were only about 30 minutes away. Once we got to Fort Bragg, we saw a sign that said Coastal Ocean View and we took it. We ended up finding a beautiful, peaceful sight.

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Silas absolutely loved the ocean and was extremely quiet as he was taking it all in. He told us he did not want to go bye bye which was super cute!

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We had an amazing time and was so impressed with how well Silas did with the trip. He enjoyed sitting in the truck just looking out the window at everything. We brought his iPad and he barely played with it at all the entire trip.

Don’t be afraid to take your kiddo(s) on long trips…they may just surprise you!!

Since You’ve Been Gone

So, since it has been so long since I last wrote I’m going to give a brief overview of the time that has passed.

July 19th – Silas and I attended the Peach Festival. I was unsure how this would go because of how Silas usually acts in public settings where there is a lot of people in a tiny area. It actually went pretty well. We didn’t stay long because it was hot but Silas was great the whole time.

July 24th – Silas surprised Robert and me.  Silas was sitting on his Mickey Mouse couch humming and Robert asked him who he was humming. Silas said, “Beethoven”. It really did sound like it too.

August 13th – Silas started school!!! This was so hard for me to believe!

He is in a transitional pre-K class with five other children. He attends in the afternoon from 11:40-3:10. At first the transition of me leaving him with people he didn’t know in a place he didn’t recognize was tough. He overcame that quickly.

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This is one of his teachers carrying him. At first he would only go to one of the female teachers and she would have to carry him and his backpack to class. We slowly worked on that and that is not the case anymore. He carries his own stuff and walks to class all on his own!

August 23rd – I finally saw Silas really “pretending” while playing. I caught it on video and I will post that for all to see.

August 27th – Silas received a toy baby grand piano as a present from great grandma LaDonna. It is absolutely the cutest thing ever! Silas really likes it a lot. 🙂

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September 26th – I finally was able to get a picture of Silas walking all on his own from his classroom at school!

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Silas has this new thing with constantly saying bye. Bye. Bye. Bye. I’m losing my sanity and I say to him…you say bye one more time I’m going to go crazy. He looks at me and yells…BYYYEEEEEE!!!!

Other than those specific days, Silas has been doing so well. He is communicating with us everything he wants. His speech and verbal skills have come a long way. In ABA therapy he is doing great! We got him to play with shaving “fram” (cream) and he didn’t even realize it. That was a huge step because he won’t touch shaving cream because of th10580097_10202607702733137_6360274943547143960_ne texture.

He is doing fantastic in school. On September 22 I had my first IEP (Individualized Education Plan) to set his goals to achieve. I’m looking forward to most of these, especially the potty training ones.

Soon we are going to be fully implementing the PECS program in our home to match what they do at school. I have briefly covered this program before in a previous post. This is going to be a lot of work on our end and will require us to have training on how to properly use it but it will definitely be worth it.

I apologize for neglecting to make posts on how things are going in our life. From now I will make sure to make regular updates on Silas and all the other crazy things that happen.

Take care!

Been Gone Too Long

Wow, I cannot believe I have neglected this blog since July 8th! The time has flown by and I have often thought of making another post but never actually made it as far as actually doing it. A lot has happened since the last time I wrote and Silas has made a tremendous amount of progress. Soon I will sit down and give a brief update of all the events of the past 2 1/2 months.

Until then…take care! Oh, and I hope you like the new layout 🙂