After much frustration and many phone calls, A had his first therapy appointment this week.  This appointment was for a physical therapy evaluation, just to determine what his needs were.  Once again, it was recommended that he have therapies across the board–to include physical, speech, occupational, and behavioural.  In terms of physical therapy, the therapist thought he would benefit from occupational therapy far more.  That being said, we have no referral, and our primary care pediatrician won’t do anything else for us at this point, so until we can arrange it, she wants him in physical therapy. 

The eval was very interesting to watch, as it became very easy to see A’s physical limitations–many of which I had not really noticed previously.  After the evaluation, she sat down to explain.  Essentially, his torso muscles are very weak (meaning, it is impossible for him to use his torso to find his balance and stabilize himself).  As a result, his extremity muscles are very tight, as they have been over-compensating for the lack of torso stability.  This is why A does the toe-walking.  His hip flexors are incredibly tight, as are his hamstrings, calf muscles, ligaments and tendons.  This totally prevents the tissues from being used correctly when he walks and runs.  Although he his physically capable of standing on his flat feet, he has very limited range of motion in his ankle, so it feels unnatural for him.  Once he pops up on his toes, he feels more stable.  For some reason, she thought A received more neurological inputs from the ball of his foot than his heel, which only encouraged him to continue the toe walking. 

We are waiting on some paperwork stuff, but it looks like the recommended plan of action will be to almost repeat the process we went through with N, shortly after his diagnosis with Cerebral Palsy.  In this case, she wants an orthopaedist to cast A’s feet and ankles.  She explained that they would cast at a very light leg-to-foot angle, and then every week, change the casts for ever-increasing angles, until he was flexed slightly past 90*.  She said it would likely take 6-8 weeks.  The muscles and tissues would become very weak and atrophy to some extent, however, she explained this was a good thing in his case, as it would then allow us to redevelop them properly with therapy.  After the casts, she wants him in specialized braces, to discourage toe-walking, encourage tissue stretching, and also encourage range of motion in his ankles.  She said it was highly possible the braces could last several years.  One encouragement she offered, though, was that she has seen many children with neurological issues who exhibit this tight-muscle and toe-walking problem, and when casted and braced before age 5, she has seen tremendous success.  She said if we wait until after age 5, the joints can began to calcify and stiffen in that position, and it may never be recovered. 

And our pediatrician doesn’t want to worry about any of this until after he is 5!  AARGH!  Thank the Lord for “Mommy-intuition!”

So that’s all we have right now.  Next week, he has a speech therapy eval, followed by an EEG appointment, followed by a follow-up neurology appt.  Because the neurologist and therapist have now emphasized the importance of occupational and possibly behavioural therapies, after next week’s appointments, S and I will be paying a visit to the base clinic’s advocacy department.  We hope to not only request a transfer of primary care teams, but also to lay out all the facts and expert recommendations to the advocacy group, while informing them of our ped’s complete non-cooperation at this point.   A still needs to see the endocrinologist, but they won’t make an appointment without a phone consult with the primary doctor, and our doctor refuses to do it.  So that is on hold. 

Slowly, but surely, though, we are making progress.  A does not seem to be regressing like he was there for a spell, but he now seems to have somewhat “plateaud” in his development.  He is almost 4, and is nowhere near where S and M were at this age.  I was hoping to start schooling him next year, but I’m not confident it will happen at this point.  He can’t even remember his ABC’s or counting 1-10, and almost seems the equivalent of an 18-month old when it comes to phonics sounds and identifying things.  He only knows his colors on good days.  All that to say, he is WAAAAY behind.  I just wish we could figure out why.  I don’t want to wish for something to show up on the EEG, but it is almost our last hope in terms of learning an actual root cause, outside of just accepting that the drugs have done it to him.  So that’s that.  We are still traveling this journey, hoping to get answers, and most importantly, hoping to help A have the brightest future he can.

Here is a plea, though….if you happen to be a pregnant mom, PLEASE be careful what you expose your baby to while in utero.  That time is soooo very critical for his/her brain development, any type of chemical can potentially affect them years later–even if they seem OK at birth.