Thursday, February 7, 2013

And so the guessing continues.. what stinks about non-verbal children

We made our way 2 1/2 hours to Pittsburgh today for an appointment for the twins in the Urology Department.  I left there honestly disappointed.  About four weeks ago I was given some hope that we might have figured out a problem that we are seeing with Isaac and have been seeing for over an year now.  You can read about that HERE...

My twin boys are now 7 1/2 years old.  They both have Down Syndrome.  They both have Autism.  They are both non-verbal.  And they both have so many things in common that when something is different between them, its REALLY different.

Isaac has been signing hurt when taken to the toilet for over a year now, therefore, potty training is not even  happening at this point.   If you read the post above you can get the whole story; so in brief, after many many months I realized that if he was signing hurt, then bye golly he is hurt.  We took him to pediatrician and she suspected meatal stenosis which is a narrowing or closure at the end of the penis that often causes pain for boys to urinate and has to be surgically repaired or opened.  Not that I was glad Isaac may have to have another surgery, but I was glad that we might have figured this whole thing out and could move onto potty training.

Get to urologist today, he looks and says that yes there is a narrowing there but not enough that he would consider surgery.  He said that "if he is eliminating in his diaper and not signing hurt, then he's not worried about it."  SERIOUSLY, I'm back to not knowing what is causing him to sign hurt.

We then go on about medical history and they ask if twins have constipation issues.. I say YES they have chronic constipation issues and they are on Miralax daily at this point... Then just like every doctor says about everything... Well, you have to get the constipation under control and then the pain will go away...

OK, here goes my rant!!!

You see that label from the MiraLAX container.. Use no more than 7 days.  We faithfully use Miralax 5 out of 7 day.  We have been for several months and before that we were using 2 to 3 days a week with no success.  Ontop of the five days a week we still end up doing full cleanses about once a month.. I am so fed up with Miralax blow outs.  I am so fed up with being afraid to send my boys to school and having them make a big mess for the aides to clean up.  Both boys have come home in a change of clothes a fair share of times.  Isaac probably more than Caleb.

We have increased their liquid intake, we have given the Miralax as directed, we have tried to give them fiber as much as we can.. I am out of ideas..

About four or five doctors have now told us "You have to get the constipation under control".  So here's where I need some reader input.

Tell me something new to try.  Is there any "Natural" things to try?  Something I should ask the pediatrician about?  A test that might be helpful to run on them?  Seriously, I know that this is a "Down Syndrome Thing" but how do you get it under control?

And to boot... the doctor said he doesn't know for sure if this is why he's signing hurt, but its as good an idea as he's got with him not being able to tell us anything else.  He did not want to get invasive and do catheters and such (which I appreciate) to test anything else, but What IF?? What IF its something else, What IF he is hurting, What IF we can not get this figured out??? I'm tired of trying to figure this out by myself..  Dang It, I'm tired of worrying about it!!!!


Anonymous said...

Years ajo--when I was a youngster- so you can imagine how long ago...I had constipation issues. Stomach hurt all the time. Our Dr. told mom to give me a small glass of orange juice with a teaspoon of mineral oil in it. Stir and drink. Worked wonders. I went and no pain. Finally, I outgrew it. Worth a try and all natural.

Anonymous said...

Thats something new to me, mineral oil? Humm, going to look into that thank you!

viv said...

Some say decafe coffee
Some say Epsom salts (but good luck getting kids to drink it)
Personally I find 1 whole orange each day and a washed down with a cuppa tea works every time .
Good luck such a horrible thing when it happens at school, I feel ya

Nikasha said...

First time reading your blog, but has a urinary tract infection been ruled out? They really should be able to do that without needing a catheter.

Some things that could help the constipation are flax seeds/oil & EVcoconut oil, and buffered vitamin C powder. Taking high volumes of vitamin C is not dangerous, because your body is able to eliminate excess easily. The way you know your tolerance level is if you get diarrhea. So, you just find the level that gives the right amount of help (maybe start with 1/8 tsp and work up). It is super easy to stir into a smoothie or juice, and you don't even notice.

If you're looking for a way to use a lot of flax, try this recipe: It's like a sweet little cinammon patty topped with fruit. I wouldn't give a child more than 1/4 of the flax though - maybe even less the first time.

Good luck!

Leah S. said...

We still deal with constipation with Angela. Miralax just causes pure liquid stools for her. Ducolax is no better. Finally, out of desperation, I put her on Benefiber. Seriously, just benefiber. It made a HUGE difference for her!!!