PWS Awareness Month-Day 28

Hi Everyone,

Today we will be talking about Kemett’s recent trips to the ER.  An ER trip for anyone with small kids can be a scary experience.  Kemett has been to the ER 4 times in his short life and it is nerve-wracking.

The biggest things is that most doctors don’t know a lot about PWS.  They may have had a day they studied it in school, but they do not know anything current about it and maybe even haven’t seen someone in years or ever.  As you have seen, PWS is so complicated.  Kemett may have a high fever with no other symptoms but in reality has pneumonia or some other infection.  Their high pain tolerance often masks other symptoms.  We are lucky to have doctors who get it in and out of Austin.

Kemett’s first trip to the ER was when he was almost 12 months old and got a cold, and could not breath well.  He was having retractions and wheezing.  We were treated, things went away and we saw our pulmonologist soon after.  That’s when Kemett was diagnosed with Asthma.

Most recently, Kemett busted his chin open and then three weeks later his forehead.  Kemett cannot have narcotics.  Individuals with PWS’s bodies don’t metabolize these drugs the way our bodies do and they can stay in their systems for a long time.  It’s best if you can avoid them (understandably, this can’t always be the case).  During our first trip, I was so nervous about what to do.  Luckily, I was able to get in touch with Dr. Miller, who talked to the amazing ER doc.  He listened to everything she had to say and told us she was worth her weight in gold.  He was very impressed.  We chose a pain reliever that was not a narcotic.  Kemett didn’t move the entire time and did great.

One week later, we went to get stitches out and on the way home afterwards, Kemett used his fingers and reopened the wound.  Back to the ER we went.  This time the discussion was should we put more in because of scarring.  We told them about the drug we used last time and the doctor asked if we could try without medication.  I agreed and Kemett did amazing!  We had to see a plastic surgeon to get the stitches removed 7 days later.

The following day, Kemett tripped and busted his forehead open right before his PT session.  Back to Dell we went.  More stitches, no drugs.

Our kids have a high pain tolerance and I’d say Kemett definitely does, but he did cry both of these times, so I know there is something registering in there.

Not only have we  been to the ER but Kemett has been put under anesthesia 4 times.  The first three times he came out quickly, but last August it took him a while to wake up afterwards.  I was a nervous wreck and the anesthesiologist seemed nervous as well.  Anytime we go in, I talk beforehand on the phone with the hospital about risks for Kemett going under.  I then talk to the anesthesiologist at great length about what could happen.  We bring in our Medical Alert book that describes what could happen.  So far the team at Dell Children’s has been fantastic.  The head of anesthesiology has protocol for PWS that they must follow.

We also do all procedures in the hospital rather than an outpatient facility because he may need to be admitted.  Our pulmonologist writes letters to everyone involved on the risks that could occur to make sure this isn’t a problem.

Anesthesia Issues in PWS

Special Concerns

Please let us know if you have any questions!  Thank you for your support!

Love,

The Demands

IMG_6877

Kemett after he got his first stitches!

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