Froggie’s many little medical issues
This will be boring to most but it will answer many of the questions we are getting!
Since I am not a doctor I may not explain these things perfectly so feel free to use the links if you are so inclined.
When you have a child with Down syndrome the first thing other parents with kids with Down syndrome say is “How is his heart”. The reason for this is because almost half of all children born with Ds have a congenital heart defect.
Patrick’s heart is doing great! Patrick was born with a hole in the upper chamber of the heart called Patent Foramen Ovale (PFO), a hole in the part of the heart called Patent Ductus Arteriosis (PDA) and a leaky aortic valve. At our last appointment with the cardiologist these all closed and he has a slight amount of Peripheral Pulmonary Stenosis (PPS). You can read more about it HERE if you are interested but his cardiologist thinks he will outgrow it by 6 months old.
The second question is often about hypotonia or low muscle tone. More HERE. About 90% of children with Ds are born with low muscle tone and usually start therapy right away to help them work on this. Patrick started OT 1 hour a week at 6 weeks old. On April 1 we are going to 2 hours a week. One hour to work on his tone and the other hour to start working on cognitive skills or infant stimulation.
The rest of these are not necessarily because of the Ds. They could be and they could not be. Clear as mud, right?
He has something with eyes called Fovea Hypoplasia. You can read more HERE. It is basically part of the eye that is under developed and he may not have perfect vision. This can not be corrected by glasses. This is a wait and see type of problem.
He has Laryngomalacia. This is when a part of the larynx is soft. It causes him to sound congested and squeak at times. More HERE. Since he also has a tiny bit of GERD he is on medication to prevent stomach acid from further aggravating the larynx. Hopefully he will outgrow it.
He also has a variant of hypospadias. It is a birth defect of the urethra and will have to be operated on when he is about 6 months old. It makes diapering a challenge More HERE. Additionally there is a small amount of hydronephrosis. More HERE. Hydronephrosis is reflux in the tube between the bladder and kidney. We will watch and see if he outgrows this. Peanut also had hydronephrosis and outgrew it at about a 1 year old.
Finally when he was 6 weeks old he was hospitalized for 2 days. He caught RSV. It was very scary and can effect his lungs in the future. More on RSV HERE
That is it for now. Hopefully nothing else will pop up but we are confident we will be able to deal with whatever comes our way.
April 17th, 2013 at 4:51 am
No PT? Get PT and OT. But we had only two PT until one too. –well we only got two because one was feeding therapy but our area is awful about services. Some give PT ot and stim and some of the three more than once a week very early.
Ideally you want speech ASAP at least consult. Doesn’t happen. Club 21 has an excellent ASL class but also a cheap (donating time/ reduced fees; excellent therapist ) option under 18 months. Get there once or a few times or just first steps & talk to Rachel Douglas about speech/oral motor stimulation!
I already spent a fun night googling your lil health quirks–very interesting new avenues I found myself learning. Much support and excellent physicians & nurses to guide you; strength to see it through as best and smoothly as possible and support & time and successful business to make it feasible without incredibly adding to the extreme worry & stress !!!
May 15th, 2013 at 8:54 pm
Thanks! He is getting OT twice a week. We have PT filling in for two weeks and she is doing all the same things. Remember he is only 4 months old right now!