Friday, January 20, 2012

Just Ethan stuff (health update)

   I had mention on my last post that he had a vision test recently. Typically, children with Down syndrome should have their eyes examined yearly or something along those lines… maybe even younger before their first year…. I don’t exactly recall what age it is recommended for their fist exam. 

Yeah, we are bad parents and this was his first ever. We really didn’t have much of a concern when he was younger. I would still recommend you take your baby to get tested just to be safe.

Lately I had noticed that one of his eyes would cross, or at least I thought so. Turns out it’s just the anatomy of his eyes that cause the illusion of a crossed eye and every now and then it does cross because he does have some farsightedness. It is minimal and to be expected for a two year old since they are still growing and their eyes are still learning to focus and adjust. The Dr. said that his nerves looked real healthy as well, that sometimes in people with Ds their nerves don’t appear “normal” but his are really healthy looking.  

The visit was rather long, one of the longest I’ve ever had. Well, we’ve had other rather long appointments such as the Down Syndrome Clinic here at TCH but Ethan was smaller and NOT running away. Ethan was being chased around the room with a little light. Funny, indeed. Tiring, extremely. We had to hold him down a few times as long as he wasn’t squeezing his eyes shut or crying. He did rather well for a 2 year old, but it was a very long appointment and he even wore himself (and me!) out towards the end.  Sadly I had to be back at work that afternoon.

Another routine exam should be our children’s thyroid. I personally believe that many times Dr’s do not catch the issues with thyroids, especially if they are not aware of the guidelines for children with Ds. Anything over 3 on the TSH numbers should require treatment. His last bloodwork did reveal a hypothyroid back in August or September (whenever it was..), but of course pediatric endocrinologist in Houston are limited and we are not being seen until February. It would have been April if we wanted to be seen at TCH (Texas Children’s Hospital) but I cannot put of treatment until then. It is outrages that my son (and others) have to wait so freakin’ long for treatment.

Next month after out appointment, I’ll make sure to fill you all in on the details.

Late last week we noticed Ethan was bumping into walls… BAD. And falling and just being clumsy, then his appetite decreased then came the fever on Sunday, which I didn’t really think much off, but then Monday his fevers weren’t getting any better, so after a Dr’s appt on Tuesday, it was revealed that he had two ear infections.


Back in November his hearing test revealed mild hearing loss in his right ear due to fluid in one ear. He had just gotten over an ear infection then, so that makes it about 3 ear infections in less than a year. And those are the ear infections that we know off. Ethan has a pretty high pain tolerance and he gets warm every now and then and I typically don’t think much of it. I believe that children should be able to fight off low grade fevers on their own and I usually just let him be.  This gets me to thinking how many other ear infections has he had that might not have been as severe or didn’t complain about.

At that last appt I was determined to push adenoid removal due to his constant nasal congestion and all the snot causing infections in his nose. I wasn’t expecting to be told that he had mild hearing loss. Of course, I went in there unprepared and  I wish I had known what I was facing before going in there. If I could have done it all differently I would have pushed tubes in his ears.

But I didn’t. I fell victim (no, not really) to all the stuff the Dr had to say and it made it sense. And in all honesty it does make sense. 

The ENT did not want to do tubes because he felt it was unnecessary to go through surgery for just ONE ear. And I totally get it. He also did not believe adenoid removal was necessary at the time either and he put Ethan on Nasonex and Singular. Which both have been working great but as soon as we miss a few doses in a row (because I think Ethan is improving) the congestion comes back. The Dr. also believed that if we could control his nasal congestion it could possibly improve the fluid behind his ear and tubes would not be necessary. I totally get what the dr is saying and the risks of surgeries, I know the dr would rather not have to put a small child under because of mild hearing loss in ONE ear. I get it. Really I do.

BUT my Ethan is not like his other two year patients. He needs all the help he can get. ONE good ear is NOT enough for him. He needs both ears more desperately than I need two.

His speech therapist also believes in tubes and she said she has better results in children with tubes.

And I know his speech is being affected. I was trying to get Ethan to say “duck” after his ST had said that he was able to say “duck” when they were reading a book. But instead of saying duck he said “ta” and made the sign for “stop”. The kid is not hearing correctly.

And it happened again just the other day when I was trying to get him to say another word… once again he said “ta” and signed “stop”.

Needless to say, we have an appointment next week where I will be pushing for tubes.

I also noticed at times when we are listening to the radio in the truck, I look back at him and he is just moving his lips. He is trying to sing, but no words are coming out of his mouth (and I really hope we are not dealing with speech apraxia).

Overall I do believe he hears most of what I am saying and understands as well, but there is obviously something there that is delaying the process more.

He has a few words he attempts to say: of course there is “ta” for stop; “tither” for sister; “da” for dad; and “mawmaw” for grandma. Those are really the only ones that are the most understandable. (I’ve mentioned before that around a yr old he was attempting more words than now.) He could very well be trying to say other words but I might not be recognizing them.
Speech therapy

We’ve lost our Speech Therapist through ECI (Early Childhood Intervention). Our area only had one ST and it took forever to get on board with her and we seen a lot of improvement with him having ST, sadly though, she is gone. She left ECI to work for the school district. Heartbreaking indeed.

I learned about his mild hearing loss in mid November but didn’t realize how much it impacted him till December, along with finding out our ST was leaving. It all added to my anxiety and breakdown. I am thankful for new days. And recently I received a call from a new ST that has replaced the old ST… I’ll be jumping on that as soon as I remember to call.

Overall the kid is doing real well. Happy and sociable most of the times, his tantrums are horrible tough. Just hoping they don’t last for years the way they did for my middle child, although hers started at 3yrs old. The terrible 3’s.

And even if it seems like a lot of issues or concerns that I have to deal with (in regards to having a child with Ds and his health), his needs are really are not outrages or unmanageable. I still think I am pretty lucky and I’ll take his current issues over any others, that is for sure. 

maybe it's just in his blood to play with guns, he gets it from his daddy.. There are no toy guns at home...


  1. You're great parents! All these doctor visits are exhausting....especially when our kids are no longer content to veg out in the stroller. Ethan looks great, and so very healthy.

  2. Russell had tubes put in almost a year ago, but I am still unsure exactly what he hears. I mean I know he can hear, but he so often mixes up words that I wonder if he is hearing all the pitches and frequencies. We still have not been able to get a solid read at his hearing tests. He is due for another one this month and I think we may have to put him to sleep for it to get an accurate read.
    I think you are right to push for tubes for Ethan, all it can do is help.
    That's great you have a new ST...We didn't have one in our area so we only got to see her once every six months. So it wasn't very helpful.
    Ethan does look great Erika, he's such a cute kid!


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