Friday, August 3, 2012

Annual DS Clinic Visit

Today was Cate's annual visit to see Dr. V, a pediatrician who specializes in genetic conditions, at the Down Syndrome Clinic.  There is a big debate on the DS BC message board about the value of DS Clinic or geneticist visits.  I think that just like most things in the special needs parenting world - the value of a clinic visit depends completely on the doctors and team at the clinic.  Our DS Clinic is an excellent resource for so many issues from medical to developmental or educational.   One of the reasons we never miss our annual visit (we've been taking Cate once a years since she was 3 months old.) was a situation that happened when Cate was 2 years old.  During the year Cate was two she had pneumonia three times - never bad enough to hospitalize her but enough to give me gray hair and keep her up many nights.  After the third diagnosis, when the immediate care doctors and our excellent pediatric an had no insights on how to prevent it, I emailed Dr. V.  She immediately responded that we need to take Cate to a particular pulmonologist.  I had never even heard the of a pulmonologist before that email.  So we made our appointment, saw the doctor who diagnosed RAD (Reactive Airway Disease) which is a condition that causes lungs to overreact to viruses or bacteria making it harder for the lungs to clear and results in secondary infections like pneumonia.  It is a condition that most kids grow out of and is not surprising given the small size of Cate's breathing passages.  It was such a relief to have a name to put to this issue but even better then that, he had a treatment plan that was preventative.  Cate didn't have any more cases of pneumonia or even bronchitis.  Sometimes it just takes the right person to make the difference in Cate's care.  Dr. V is one of those people, she has experience and knowledge that I cannot expect from a pediatrician who sees a handful of children with DS in his career. 

At our annual visit to the  DS Clinic we do a few different things - first they do weight, height, blood pressure and listen to the heart to check general health just like a pediatrician can do but the difference is at this clinic they only use the DS grow charts. They know what to expect the curve to look like and are more likely to see a potential nutrition or BMI issue in a child with DS just because of their experience.  Cate was following a perfect curve and Dr. V has no concerns about her weight.
After that we sit down with Dr V to discuss Cate's progress at school, what therapy visits she has, what health issues she had in the last year and any concerns we have about her health or behavior.  In the past this discussion has lead us to change our therapy structure, she was even the one who suggested aqua therapy for Cate - so we have her to thank for Cate's early start in the pool.  Dr. V was very impressed with Cate's speech, not just the general clarity but her sentence structure and vocabulary too.  Cate asked me if she could have the iPad and Dr. V told me to let her have it.  She was also impressed with Cate's ability to maneuver it and the time she focused on a single game.  Her words - "Cate is very smart".    She agreed that Cate's school situation, her social growth and developmental progress are all perfect and that opinion was with Cate being anti-social and stubborn.  She refused to talk directly to the doctor instead pointing to me when she was asked a question and when the question persisted at her turned to me to say the answer.  She never smiled or showed off her fun personality.  I asked Dr. V about some nutritional supplements that are becoming popular in the DS community with claims they help improve speech and attention span.  She is not a proponent because no studies have been done on the physiological risks and there isn't a prescribed list of lab work that can be done to monitor any possible issues like the liver enzyme test commonly done with some medications.  The only concern of mine and Ric's that we discussed is Cate compulsive like behaviors of chewing her finger nails or cuticles and its predecessor, picking at scabs.  Dr. V did a sensory evaluation and based on that review is not concerned at all at this point.  She thinks it is just a phase that she will grow out of and she probably does it out of boredom more than as a coping mechanism.  So her recommendation is tell her to stop without making a big deal out of it, then to redirect her to a new activity is she continues and we'll look at it again next year.    The only other piece of advice she had for us was to start working on Cate's self confidence.  She says this is the age when that becomes so important for children with Down Syndrome.  Dr V suggest finding an activity Cate is good at and fostering that - her example swimming and being on a team then training for the Special Olympics.  Which of course is a perfect plan for Cate.

The next phase of our visit is a consultation with the DS Clinic education specialist.  She reviews Cate's IEP prior to talking to us then discussed our concerns and questions.  Since I didn't have any, it was a short meeting.  She told me this was one of the best IEPs she had seen for Cate's age.  She thought the goals were appropriate, well written and provided excellent measurements.

Then we headed to do Cate's blood work.  Children with DS have a very high probability of having thyroid issues so we do annual blood work to watch for them.  This part of the visit was unsuccessful in that we didn't get the blood, it was emotionally trying because although Cate keep saying "I'll be brave" she also freaked out at every new action of the very nice technician, and for me it was very wet (note to self take children to potty before having them sit on your lap while getting stuck with a needle).  We now have a lab order to take somewhere else when it is better for Cate and when I have a change of clothes handy.

Except for our little accident, the visit was great.  Very reaffirming that we are on the right track.  Maybe some people don't need to drive 30 minutes to see a doctor that just tells them we are doing everything right and that Cate is awesome but I do.  I helps my self confidence and gives me security that I have a resource if anything changes.   Sometimes I just need that, so that on those days when I don't feel like I am doing anything right and that I don't have a clue how to care for Cate's needs, I can remember a very educated person told me that I was doing everything right and she was very impressed!

getting bigger!  grew almost 2 inches since the end of PreK


  1. Thank you so much for sharing! What a great visit :) I considered taking Lily this year, but after a lot of the feedback that you mentioned at the beginning of your post, decided to wait a bit. I do think we'll probably take her next year though. Great post and I love the pics especially :)

  2. Thank you for sharing. WE are new on this journey (my daughter is 8 months old) but I think I will look into this for her. We have an excellent family practice doctor who is so great I can't say enough about her. But I think it might be nice to have another resourse who does see more than a handful of ds patients in her career.

    Your daughter is beautiful and a wonderful example for my daughter to look up to. Keep up the good work!