So now that we know some of the signs and symptoms of RSS..how does it affect us? How does it affect me, as a parent…and Molly, as a toddler? How can certain symptoms affect your life?

1. Hypoglycemia

• Can cause child to wake frequently at night, past a year of age
• Can cause extreme crankiness that’s eased with feeding.
• Produces ketones in the urine
• Makes it difficult to wake up in the mornings
• Excessive Sweating

Molly had all of these (well, besides the ketones…we never tested for that). When she was about 18 months (a year ago) she suddenly started waking just about every night at 2-3AM…MOANING. I had to feed her every night at 1AM for a very long time to get her to sleep through the night.

2. Lack of interest in eating

• Enter vicious cycle. Your child has a lack of interest in eating…it makes them eat little, which causes hypoglycemia, which makes you need to feed the child more frequently.
• You have to beef up the calories of every bite. Welcome butter, sour cream, dry milk, wheat germ, peanut butter (if allergies are not present), dry-milk…and the wonderment of DuoCal ($25 a can!! TOTALLY not covered by insurance! YAY!)
• The other vicious cycle – no interest in eating, but they have to eat, so you try to get them to eat smaller meals more frequently, so they assert themselves by refusing those meals, so you have to try to supplement more…and round and round and round!

This is STILL a sticking point for us. Molly is now a little more interested in eating…but I swear her stomach is the size of a peanut. After just two chicken nuggets, she’s full (that was her lunch today). She will still drink us out of house and home with the milk, though (chocolate only, please!)!!

3. Oral Motor and Speech Delays/Fine and Gross Motor Delays

• Therapy, therapy, therapy.
• Did I mention therapy?

That’s how we’ve come to have our life affected by this. Of course, on the flip side…some of these delays are enhanced in our case by the Autism. While most RSS children grow beyond these delays to lead ‘normal’ (we really use this term loosely in our house), healthy adult lives…we’re facing a slightly more difficult hurdle.

4. Physical aspects

Currently we have little repercussions for any of this. I know for my DH he faced a myriad of issues because of his appearance (he still doesn’t believe he’s attractive)…and he fears the same for Molly. I have to hope that how we treat the (relatively) minor physical abnormalities she’s facing will help determine how she deals with them. Me, I don’t notice these so much…because she is beautiful and they are rather minor…well, except she appears frighteningly skinny 🙂

5. Precocious Puberty

Yet another thing we aren’t facing currently…she is only 2.5 *lol* I have to admit…I FEAR the day that this happens…especially since we still aren’t sure about the severity of her autism. BUT…I suppose it’s something we’ll deal with soon enough (that is TERRIFYING!!!)

Those are the key ones I can think of now. If I forgot anything please feel free to nudge me and ask…I’ll be sure to add it!!