Endocrinology

Last week Ryleigh had two appointments at SickKids. We saw the FTT in the morning and they were very pleased with her growth. She weighed in at 20lbs and 76cm long. This puts her around the 10^th percentile for weight and 5^th for length. So she has made some decent gains. They suggested resuming the prevacid to help with the recent increase in vomiting. We are to follow-up in 3 months time.

In the afternoon we saw Endocrinology. They were also pleased with her growth. The have some minor concerns with her hormone levels, which were tested again. It could be from the failure to thrive and her levels may have increased now that her size has. They were also going to watch her thyroid levels. We are to begin testing her blood sugar again, especially when she shows symptoms of high/low levels such as sleepiness, sweating, thirst, irritability more than normal, or the shakes.  We do not follow up with them for 6 months (to get a better picture of her growth over time). We are to call if she has more sugar issues though.

After the blood work we were able to head home. It was a looong day. She is back at the end of the month for her abdominal ultrasound.

Summer Time

It has been a busy summer! Lots of work and travel. Ryleigh has been making great progress this summer, she is gained weight well, talking more and has started walking.

Over the past few weeks Ryleigh was seen in the metabolic/genetics clinic at SickKids and had a follow-up with the GI specialist. We also had a follow-up with the infant development team who has referred her to speech and language services.  The GI specialist is pleased with her growth and has “discharged” her from the service.  We are welcome to return at any time if further concerns arise or Ryleigh begins to lose weight.

At our SickKids appointment the team was very thorough. They do not have any major concerns in regards to genetic conditions however there are some things that cannot be completely ruled out at this time (not sure what) so they have requested some follow-up testing and another appointment in Sept.

Upcoming this month we have Endocrinology and an abdominal ultrasound as well as her 18mth check up with the family doctor.

Overall she is making progress and we are getting good news!

MRSI

Today we went for her MRSI. She was pretty cranky before going in. She was NPO after midnight and the procedure was not until 10:45 even though she had been awake since 7am. 

They ended up having to use contrast however she did very well. She was very dopey afterwards and not able to move around or drink on her own.

Too sleepy to open our eyes

She stayed really sleepy all day and got very cranky and cuddly.  Early to bed!

Follow-up

After our followup with FTT clinic today she has put on weight. She weighed in at 16.5lbs! Since the end of April she has been throwing up randomly and with no reason. Usually in the evenings or while sleeping. Our MRSI has been bumped to priority status and will be happening on June 12/12. We are waiting on referrals to Metabolics and Endocrinology at this point.

A brief history

As of May 3/12 SickKids has now become involved in Ryleigh's care. I decided at this point to start writing about her journey.

Ryleigh was born at 35weeks weighing 5lbs 5oz. She had some reflux issues between 3 and 6 months old. At 8  months old she had her first "episode" of convulsions. She did not have at fever. She then had two more episodes of shaking and spacing out. At this point we were referred to a Neurologist. Just before her first birthday the doctors became worried as she was very tiny and not gaining weight well. At 8months old she was 13lbs 6oz. She weighed 14lbs at her first birthday. She was referred to failure to thrive clinic (FTT) at SickKids. A whole work up of blood work was done.She saw the neurologist on May 1st.  Blood work was done again at SickKids, and then repeated at SickKids. It all came back the same... unusual and unexplainable results. After these findings more referrals were sent.