Chips, Cheese and Sometimes Marshmallows

Life with 2q23.1 microdeletion syndrome (chromosome 2)

Chips, Cheese & Sometimes Marshmallows? What? Let me explain, if anyone knows my daughter Asia this completely makes sense:) Not only do we have many medical issues but, food issues are one of our major daily obstacles. You'll see...

Asia's List of Symptoms (2q23.1)

Whether or not all of Asia's Symptoms are related to the 2q23.1 microdeletion is unknown at this time:

At this time her symptoms are: Seizures, Hypotonia (muscle weakness), Development delay, Motor Delay, Language impairment, Non-verbal, Ataxia, Behavioral problems, Sleep disturbances, Short attention span, Repetitive behavior, Aggression, Autistic-like Symptoms, Sensory Processing Disorder (hypo-sensitive), Tongue-tied, Sacral Dimple, Possible Macroglossia (large tongue), Sandal Gap on foot, Constipation, Blepharitis, Hearing loss & Microcephaly.

~This list may be edited with new information~
There are additional symptoms with this rare syndrome that Asia does not have.

Many people contact me to ask what type of testing Asia had to get her diagnoses. Asia had a simple blood test performed which is called a "Cytogenic Microarray". There is a post in the blog that goes over this a little more.

Conact Info and Support Group

2q23.1 Microdeletion Syndrome has a great support group on Facebook. It is a closed group where parents can discuss their questions/concerns about their children with 2q. When logged into FB just search 2q23.1 Microdeletion Syndrome and find the closed group and "join". Also, please feel free to email me with any questions at

Thursday, April 11, 2013


I am setting aside the cleaning and work right now to post this message. I feel like I received a huge blessing-this post will be a little lengthy but please read the end results:) Someone shared some information with me and I want to spread the word. This is VERY important because it affects so many children. I am almost sick that I did not have this info a few years ago!

Asia has suffered with constipation since she was little. I don't remember her having to many issues before she was 1yr old but, I remember it becoming a problem after that. Not sure why, it may be her low muscle tone or something directly related with the missing info from Chromosome 2. Asia along with other 2q kids have a hard time with potty training and severe constipation problems. We have tried everything-with diet, we tried taking her off of corn, dairy and gluten (didn't see any results). When Asia was small (up until a couple of years ago) she would eat ANYTHING:) At that time she definitely got her daily dose of vegetables and fruit. For constipation we would give her prune juice and additional fiber to try to get her to go and none of it worked. With Asia, it seems as though her constipation problems directly affected how frequent and severe her seizures were so we definitely wanted to get it under control.

We were soon introduced to Miralax. In fact, I remember sitting in a waiting room with a GI doctor and she told us her daughter had constipation issues and she just gave her a dose everyday and it kept her regular. We inquired with Asia's Dr and were given prescriptions to get her Miralax-even though you can buy it over the counter some insurance will cover the cost of it. I can not remember the exact date but it has been at least a few years since she started taking it-maybe longer. It worked great-we were so relieved to have something. If she missed a day she wouldn't go. Along with being miserable, she would have increased seizure activity so it was important she got it everyday. With in the last couple of years Asia's personality has changed. She is extremely aggressive, lethargic, terrible mood swings, her Autistic characteristics seemed to be amplified. You may have read from previous posts about her erratic behavior. At home on the weekends all she wants to do is lay in bed-took several naps a day, just miserable. I recall bringing her in to the Dr.'s office last year because she looked like death-so sick, no energy, limp, pale, lethargic, expecting there to be a ear infection or something and nope, couldn't find anything wrong. I sat there and said to her (Dr.) "look at her, somethings wrong".  I didn't know what to do. Then I got this report on Miralax-and all I can think right now is are you freakin kidding me!! I encourage you to read the full articles for all info-what it is actually made of and all the effects.  Here are just a couple excerpts and my main concerns:

In some situations, metabolic acidosis can be a mild, chronic condition; however, it may lead to shock or death in severe cases. Neuropsychiatric adverse events may include seizures, tremors, tics, headache, anxiety, lethargy, sedation, aggression, rages, obsessive-compulsive behaviors including repetitive chewing and sucking, paranoia and mood swings. (this is Asia, I've seen it all except the "tics" & not sure about the "tremors")

use in children and warning of potential adverse events associated with PEG 3350 laxative products. Adverse events reported in the FDA Adverse Event Reporting System include, but are not limited to: gastrointestinal, renal, urological, hematological, neurological, neuropsychiatric, dermatological, and at least 3 child fatalities.

Technically, PEG is an osmotic laxative. Because of this property, it blocks the absorption of nutrients in the small intestine. Its extended use may result in severe malnutrition-related disorders, particularly in young children and older adults. Autism is one such disorder. It may take only two weeks of an acute iron or iodine deficiency to cause autism in a child younger than two. (Asia has a  slight iron deficiency right now)

Safety and effectiveness [of PEG] in pediatric patients has not been established.”
Administration back in 1999 only for use by adults, and for no longer than 7 days. In spite of this clear and unambiguous rule, pediatricians routinely prescribe PEG-containing laxatives to children of all ages [8] anyway. Equally disturbing, many doctors encourage adults and children alike to take them indefinitely, even though the label clearly states: “Use no more than 7 days.

“I’ve had kids on it daily for years,” said Dr. Scott W. Cohen, a pediatrician in Beverly Hills, Calif., adding that he will generally refer them to a specialist in prolonged cases. For children with chronic constipation who are not being helped by dietary changes, “We literally give it like water.”

The problem is-no one knows what this does to children. The research hasn't been done. When you  look at the Miralax label it does say "do not use more then 7 days"-for adults and kids over 17.  Children are being given adult doses of this product indefinitely. I brought this up with Asia's pediatrician and he had not heard anything. In fact, he tried to look it up on the web and couldn't find anything. I did send this info to him and I would be curious to see what he thinks. The following links are full of information-please read them. In the article on the first line it gives you links to many other articles.

So-after all of that:) I never would have suspected Miralax to be the cause of so many of Asia's issues.  I took Asia off of Miralax almost two weeks ago...I am substituting for now with some digestive enzymes and they are currently doing the trick but, I don't know how long that will last. I hate the thought of having to deal with the pain of constipation again but, I will never give her Miralax again. It feels like I was poisoning her. I don't know how I can completely describe her change but, she is a COMPLETELY different person-and I am getting emotional right now even typing this. If I didn't see it I wouldn't believe it, night & day difference. Two days later I remember telling my husband in bewilderment-Asia just said this or just did this. She is herself again, she teases, she plays, she is bringing back words she used to say, she is eating better, she has more energy, she has a kindness again, a calmness and clarity. This happened with in 2 days-it was like a miracle. I have been holding back on this post because I didn't think it was actually happening. Don't get me wrong-she still has her tired and frustrated "tantrums"-but she doesn't have the rage and aggression that she did. I don't feel abused anymore:) Even when she is extremely frustrated she refrains from hitting and hair pulling like she was. She doesn't want to spend all day in bed! She gets up and makes a mess:) Gets in to stuff:)  Everyone has noticed a difference in her-even before I tell them this story. She has been getting notes from school saying-"She was so happy today!" Her teacher commented that "I got Asia to sit and concentrate on work today?!" and "She ate great".
I just wanted to do my share and "Spread the Word" because so many little ones are in the same situation and we really don't know the long/short term effects. Whats this product going to do to them in another 15yrs? It has never been approved by the FDA for pediatric use. Look at the labels because there are other brands made with the same ingredient -polyethylene glycol. I will be curious to see how this will effect her seizures and I hope that there is no permanent damage....


  1. Wow Season. I didn't know you had this blog about Asia. It's incredible. Thanks for the Miralax warning. I'm going to post a link to this on my facebook. It's scary how so-called "cures" can hurt us more than help us.

  2. Wow. I can't believe this it seems so common sense after reading everything. I hope she continues to progress! I thought of you and your family just this week when a patient of mine told me about the free autism program that the university of Utah is currently offering where autistic adults help autistic children build and create projects. I wondered how Asia was progressing. Love you guys hope and prayers for more progression.

  3. Thanks Season! This totally confirms what I have been feeling in my gut. Several pediatricians have told me to put my 4 year old and 7 month old indefinitely on miralax because they have "slow intestine." This has not sat right with me - but when doctor after doctor told me otherwise - I started doubting myself. My sister told me about this post and it was truly an answer to my prayers. Thanks for sharing the info!

  4. I just found this blog after entering "Miralax and behavior". My son is two and was prescribed Miralax last year for chronic constipation. He had been treated for ITP which is an idiopathic condition where the body stops making platelets. I was so afraid that the straining would cause internal bleeding that I was happy he was getting proper attention (his ped. just acted like his constipation was no big deal. It was, and continues to be a very big deal). Long story short, the Miralax didn't seem to be helping much, after a year, and I had reservations about continuing its use. I have come back to this blog about 8 times today to follow your links. When I took my son off of Miralax, the change was noticeable within a week. He is now on probiotics and I just started giving him baths with just a little Epsom salt. His movements are still somewhat hard but he is passing them, not withholding, and, most importantly, he is a delight to be around again. He doesn't have uncontrollable fits, he isn't gray in the face, he doesn't sit on the couch staring into space all day, he doesn't seem to have many of the strange little compulsions that he had only a month ago. I'm shocked that doctors suggest giving this poison to children. Good luck with your continued pursuit to relieve your beautiful daughter's gastrointestinal problems, and thank you for posting about your findings. I feel like I have a little direction for continued treatment now.

    1. Thank you Near Westside! It makes the biggest difference when your child has personality again doesn't it! It is almost unreal the difference in behavior. So sorry for your little guy...I hope you find something that works well for him. Severe constipation is one of the worst things to see your child go through. Thank you so much for your comment. It's been several months since I took her off of Miralax and I am still in awe some times when she has so much energy and is in such a good mood:)She took Miralax way too long. It has made the biggest difference in our lives removing it from her diet. I literally was about to start seeing a counselor because she was so frustrating:) I feel so strongly about it's effects that I found a Miralax yahoo group that has a lot of info and I filed a complaint with the FDA and reported it on hopefully "someone" will take notice. Thanks again!

  5. I also found this blog by typing in 'does miralax cause moodiness'. My daughter is 15 months old and takes this crape for constipation due to spina bifida. She has been for aggressive not only to others but constantly hitting herself!! I am never giving it yo her again. Both her doctors act like it is just fine for her to have it!! My mommy instincts tell me otherwise!

  6. I know this is an old blog but I started googling today after experiencing the same thing you have with my 7 year old daughter (on the autism spectrum). We had an ER visit over a month ago where they took an Xray and identified that she was severely constipated (this was prompted by a screaming fit in the bathroom at school where she could not be consoled). The Dr.ordered a Mirilax cleanout followed by a capful of Mirilax a day for 3-6 months. We have been on it about a month and the last 2 weeks she has becoming increasingly agitated with daily out of the blue drop to the ground screaming, crying, kicking fits that required me to pick her up from school. She had also began itching profusely upon waking in the morning. Earlier this week I followed my gut and took her off Mirilax (I have introduced additional fiber and probiotics into her diet so hoping it will keep the constipation at bay). The past 2 days she is back to the happy girl I missed so much and like you her school was "Wow! What did you do? She had the best day EVER!" When I posted my findings on FB this morning and friend who has a daughter with Down's who has also been experiencing extreme aggression and sensory sensitivities recently had her "aha" moment. It also started for her after starting Mirilax.

    1. I am so glad you saw a positive difference! I may not get to every comment but I love when that post can help others. It is a "real" thing, I can't believe I lived with a "psychotic" little girl for so long not knowing about this. Thank you for spreading the word, I know it will help so many others as well! If you want to do more-report it!

      My pediatrician recommended sending in a report to the FDA. Here is a link for FDA report and also report adverse effects to RXing.

      Here are some links to report to:

      This one is to complete a form 3500 online,

      Download a copy of this Voluntary Reporting Form FDA 3500 or the Consumer Voluntary Reporting Form FDA 3500B and either mail it or fax it to us at 1-800-FDA-0178. Forms are available at:

      Another great link to report at

      There is also a Yahoo Miralax group-that has a lot of people who have additional info on Miralax awareness. Just search Yahoo groups Miralax and it comes up.

    2. This is also a product I have found really helpful...
      Garden of Life RAW probiotics kids
      Its organic and has been doing the trick for a few months now-I am finding it at the local "health food stores".

  7. My son had chronic constipation for quite some time and was prescribed Miralax by his gastroenterologist. His behavior changed drastically with the behavior that other posts describe. I thought I was crazy thinking his behavior was linked to Miralax as I was assured it wasn't the medication but emotional or behavior issues he must be having. He was a completely different child....angry, would become enraged, couldn't get along with others, screaming, saying mean things, unable to make eye contact, completely unhappy just to name a few and this went on for months. I was at my wits end and was an emotional wreck. My son was not himself and I didn't know what to do to help him. I reduced the amount of Miralax I was giving him just because I felt he really didn't need as much as recommended because his stool was loose ALL the time, he had a poopy diaper all the time and due to this could not get the hang of potty training. Once I stopped giving him so much laxative his personality went back to the sweet, kind, caring boy he had been before. Our lives were a complete nightmare when he was taking Miralax. The only way I would ever give to him again would be if we become desperate and he needs some relief but I'm looking into alternatives. I wanted to post this to tell other parents that you are not crazy and if your gut tells you there is something wrong then there is. I've made appointments with psychologists due to his behavior and are going next week but feel certain after reading this that this is the cause. I can't describe the night and day as others talked about that I have seen on and off this medication. Thank you so much for this information!!!

  8. How do you control the constipation? My husband and I am in tears today feeling that something was off with our daughter and happening upon the information that it can have some of the adverse symptoms she's experiencing. She has bloody, horrible bowel movements if we miss a day and takes a capful. A CAPFUL! Have been to multiple gastro dr's and had barium enema trying to find a solution. They just kept saying keep her on her Miralax. I feel helpless. Have you found anything that works consistently? Thanks in advance.

    1. Hi Sara-I am so sorry and I apologize I did not see this earlier. I have been so busy with other things that this blog has taken a back-seat the last year or so!! This really is such a heart wrenching thing to watch your child go through. My daughter has been pretty regular the last year-it could be because she is getting a little older? Eating better? I am unsure but the very last thing we were doing that really helped is I would add a tablespoon of pure olive oil to her drink in the morning sometimes twice a day if needed and it really seemed to help. There was a post on this blog that had several different ideas to try that came from several different Mom's in the same situation. If this link doesn't work search "constipation treatments"

    2. Sorry that posted before I had finished! Good luck with this-if you find something that works great we would love to know. There are many more parents in the same situation looking for new ideas! xo

  9. As a pediatrician, I prescribe this almost weekly and will continue to do so. It is a completely benign and very helpful osmotic laxative and SAFE. If any of you would actually read the reports and links that they are tying things to, the adverse events are all in very elderly, cancer ridden, and had not been given miralax as 1 cap/day. PLEASE DO YOUR RESEARCH BEFORE POSTING IGNORANCE TO OTHERS.