December 10, 2012


A few weeks ago we had a scare.... Jayden had an x-ray to check for scoliosis and the results showed a 14 degree curve. We were devastated! We quickly set up an appointment to meet with an Orthopedist. When we arrived for our visit, we did not have access to the original x-rays so we took a second set. These showed NO curve. Apparently you can get a false positive with poor posture but you cannot get a false negative. So we are in the clear.... for now! Lesson #1: Have your x-rays done with the specialist! Thinking Jayden had scoliosis, we quickly made some changes which we are continuing with the hopes that we will prevent a curve. Jayden is now horseback riding twice a week. Dr. Van Bosse stressed that horseback riding is a great activity which should help keep curves from progressing, or at least slow their progression. We also purchased a used core trainer which Jayden uses here and there which should help him strengthen his core. Wednesday we will be trying a demo theratog to see if he will tolerate it. The thought is that it will provide constant input that would help him activate his muscles and improve his core. I am very interested to see the results!

June 18, 2012

Provigil - Day 4

We are giving Jayden 25mg of provigil daily. So far, we have noticed him having a lot of "good days". I haven't noticed anything outstandingly different but there have been small things that all add up.... 1. He seems generally more compliant. When you ask him to do something, he surprises me by following instructions. Is this all the time? NO!! But it is more often than usual. 2. He WANTS to communicate. He HAS to have your FULL attention. He is telling us stories, he is involving us in his circles. Is this new? NO, but the intensity is. 3. He is sleeping in... It has been over a year since Jayden has gone to sleep in his bed and stayed there until morning. Two days now he has slept in his own bed until 5:30. He is there now and I hope I can say tomorrow that he has stayed in his bed again!! Overall, I feel that he is simply having "good" days. He is easy going, overall happy and his meltdowns seem fewer and less intense. I hope to continue to see improvements. We will stay at 25mg for a few weeks before going to 50mg.

June 14, 2012


Today I gave Jayden his first dose of Provigil. Per Dr. Miller's instructions we gave him 25 mg in the morning. Not sure if its the meds or coincidence but Jayden had a great day today! His communication was animated and appropriate. He seemed controlled and purposeful in his play. Interestingly, he did not ask for snack or dinner!! I hope that is a trend that continues!

Thats all for today! More updates soon!

February 5, 2012

IEP preparation

Jayden turns three this month so we have been preparing for his first IEP meeting scheduled feb 10th. I have letters from all his therapists, his most recent progress report from his current preschool and some helpful handouts from the Pittsburg partnership regarding food security.

We are very concerned about food security, as I think all Pws parents are. Much of our preparation has been setting our food rules. We have tried to make things as black and white as possible.

Our second biggest concern is Jayden's speech. Our therapist has suggested he receives speech therapy 4 to 5 times a week for a minimum of 45 minutes a day. These are the recommendations for treating apraxia. It will be interesting to see what the school offers. It would be nice for him to receive all his speech during the school day so we could have fewer appointments in the afternoon.

Our school visit is tomorrow and we have asked to be given copies of all the evaluations. Then we will go to meet our advocate and decide if we need/want someone by our side during the IEP meeting.

January 27, 2012

Dan and I are preparing for Jayden's first IEP meeting. It is nothing short of exhausting. I hope we have a team of positive, proactive educators...

I was reflecting today about how much of my life has prepared me for PWS.... here is my laundry list...

In college I was interested in genetics, nutrition and physical therapy so I took introductory courses in all of these subjects. PWS is a genetic syndrome which requires you to be VERY nutritionally conscious and daily physical exercise and therapy is crucial.

Even though I received my BS in business administration, I became a credentialed teacher and taught for over 5 years. Having gone through the credentialing process I am familiar with IEP's and how schools function. I also know what good teaching looks like and the challenges of managing a classroom. I believe this experience provides me with empathy for the requests and demands we put upon our teachers but also provides me with a "no-bullshit" mentality as I know what is reasonable to expect from an educator.

As I mentioned, Dan and I have been discussing our IEP and these are the food rules we plan to give to the school and have documented in the IEP. I would love to hear what your comments.


Food is stress and stress causes anxiety leading to behavior problems and inability to learn. Food security must be in place at ALL times. Successful behavior management of PWS requires uncertainty about food be eliminated. Meals and snacks must be given in a predictable routine. There may be no opportunities to obtain food outside of the scheduled meals and snacks.

Only food provided from home can be given.

Food cannot be used as punishment or reward.

Food cannot be withheld - food must be given during the scheduled snack time.

Food cannot be used as positive reinforcement - food can only be given during the scheduled snack time.

No outside food can be distributed during the school day (this includes special treats for birthday parties.) If outside food MUST be distributed to the class, food must be packaged in a non-see through bag and distributed as students are leaving. Jayden is not to be handed the bag directly - it must be given to his parent/grandparents upon pickup.

Access to food must be eliminated:

Garbage needs to be removed from the room after snacks and meals

Food must swept off the floor, chairs and tables after snack time.

Student snacks/meals must be kept out of reach and out of sight.

Edible food (that will be eaten after the activity) cannot be used in the curriculum. Uncooked beans, rice and macaroni are acceptable for art projects but a one-on-one aid needs to supervise to ensure it is not consumed.

Jayden must be supervised during snack times to make sure he does not take food from other students. A one-on-one aid may be necessary during snack time in the future.

Jayden will look for opportunities to eat non-edible items. Please closely monitor his use of play dough, glue, crayons, shaving cream, lotions etc

January 4, 2012

ripping off the bandaid

Jayden turns three in February so we are beginning the IEP process and working with regional center to determine eligibility. Today, Jayden had a developmental assessment. The assessor thought he did really well....I thought Jayden performed as expected. The results (if I remember correctly):

Cognitive Development is at 26 (or was it 28....) months
Receptive Language 24 months
Expressive Language 17 months

Although they can't measure IQ at this age, he was given a score of 80. I was told 85 is the low end of normal or average. This puts Jayden just a bit lower than normal but will not qualify him for regional center based on a diagnosis of retardation.

Even though I expected these results, its still to easy to hear. Its like ripping off the bandaid again. The diagnosis and its challenges are in black and white in front of me.

Tomorrow we return to speech. We purchased proloquo2go for the iPad and have begun introducing it to Jayden. I look forward to our speech session tomorrow and hope the therapist will share some ideas for implementing the program.

December 23, 2011

Teeth Grinding....progress

Jayden seems to grind his teeth less on days after he has gone to the park. THis past Tuesday, at OT, Jayden did a lot of proprioceptive work: swimming in balls while wearing a weighted vest, running up a ramp and jumping, swinging.... At the end of the session we gave him cold water and there was no grinding.

This afternoon Jayden went to the park. He is drinking his milk right now with much less grinding than usual. Although there is still a bit, it isn't after EVERY sip. Wish we could find that miracle activity that would stop it completely.

December 17, 2011


Jayden started grinding his teeth as soon as they broke through -- so basically he has ALWAYS ground his teeth. Lately, however, it has become HORRIBLE. The majority of the grinding occurs when he is drinking.... from a cup, straw, whatever. Sometimes he grinds while eating but this is infrequent. I have asked all his therapists about the grinding and they are all in agreement that it must be a need for proprioceptive input. No one, however, has been able to prescribe a regimen to reduce/eliminate the grinding.

The grinding is like fingernails on a chalkboard - it makes you hair prickle... There are times when I have to take his drink away it bothers me so much!

This afternoon, after a particularly busy day of going to the park, running around at the horse barn and going to the park a second time, Jayden drank for the first time in FOREVER without grinding his teeth! I was in heaven, and praising repeatedly!!! Tomorrow I plan to implement a little experiment. In the morning, I want to see if the grinding is back. If so, I plan to take him to the park and see if that helps. Should be interesting!

Stay tuned.

December 7, 2011

I know its been a long time.... here is a quick update!

Ok, So life is crazy.... I never blog. I am SOOOO sorry. Here is a quick update. We went to our annual check in at UC Irvine. Jayden participates in the natural history study there. Dr Gold kindly mentioned he does not present many of the physical traits of PWS, although he does have a few. I guess that is a compliment??

Anyway... the highlight of the visit for me was checking in on Jayden's growth. He is 37.35 inches tall and 33 pounds. This puts him at the 75% for weight for height and between the 50th and 75th percentiles for weight AND height. This is a bit heavier than the PWS specialists want their kids BUT I think it is good for Jayden. He has stayed on the same growth curve for the past 2 years which is what is most important - he hasn't had any huge unexplained jumps in weight. His weight has increased proportionately to his height. YAY!

We are still working on getting him to eat more vegetables. He is now eating carrots which was a huge achievement! He will now eat carrots, tomatoes, avocado, dried snap peas and dried green beans. Of course he continues to LOVE all fruits and nuts. We have really cut back on dairy. He rarely gets any cheese and we give him coconut milk or almond milk instead of dairy beverages. The only dairy he gets regularly is his yogurt for breakfast and dinner - since we add his supplements to yogurt, this works nicely for us.

We have really been focusing on Jayden's speech. He has a half hour on Mondays, a combined speech/OT on Tuesdays and a REALLY GOOD 1 hour session at Innovative Therapy for Kids on Thursday. He is beginning to sing along with songs (if you listen VERY closely you can hear him saying some of the words). He is attempting many more sounds but often needs encouragement to use the appropriate sounds for words.

We are starting to potty train. He is sometimes reluctant to sit on the potty but we have been reinforcing his attempts with music from the WIGGLES (which he loves!) and he will often be successful. I'm hoping to report daytime training is complete sometime soon in the new year!

September 22, 2011

Speech Part Deux

After our speech session at innovative, Dan went strait to management at Rady's asking why we weren't getting appropriate care. Long story short, we have a new ST and are combining ST and OT for a one hour session. The plan is to have one hour a week to start, then move to two sessions a week.

We had our first session this week. I wasn't too very impressed. I'm hoping things will take off as we get more familiar with both therapists working together. In the meantime, I have weekly appointments made at innovative for the next few weeks. I'm really looking forward to those appointments and hope to see some positive changes!