Monday, February 7, 2011

Nat update..... finally!

*I apologise for the length of this post here and now, but this is a long story that NEEDS to be told. I hope that it will encourage other parents like me out there and be worth the long read!*

 I AM going to do this....
I AM going to get through this Nat update and get it posted....
Sometime soon.

If you are new around here, or blissfully unaware of our life I will give you a touch of back story.

Meet Nathaniel.

My darling 10 1/2 year old son, who happens to have Spina Bifida and some of the fun sideshows that go along with SB (neurogenic bowel and bladder, behavioral issues galore (OCD and ODD being the two biggest ones we deal with daily), processing challenges (especially linear processing), social quirks and rages, lots of rages) to name a few.

Nathaniel is a lover of all sports and will play anything as long as it has a ball, bat or racket in it!

He HATES to read, and loves to listen to anything (stories, books on tape, movies, music... anything!).

He thinks art is for girls, painting is to express anger, and creating is NOT his strong suit.

He can figure out ANY electronic game without reading and will play them for hours on end.

 Friendships are not something he is good at building and he is fine playing alone, unless he needs a body for sports and even then, he will play the sport with you, but conversation is not a part of it to him.

I love my son to pieces. But I do have to admit he has a few quirks!

We have been having increasing problems with Nathaniel, his rages and his quirks.

Some blamed the problems on my unstable marriage. My husband and I have been separated for 15 months, the kids have limited and supervised visits with their father and our home environment is no longer a battle field, yet Nathaniel's rages continued.

Some have blamed the problem on my parenting skills. I open my home and life to outsiders and they come in daily, we are constantly under a microscope.  I have been praised time and time again for my parenting and coping skills and yet the rages continued.

Many have blamed Spina Bifida, but that is a fact of life in our family and it can't be taken away. On the other hand I see so many others deal with SB daily and not have the rages, so I continued to seek answers.

Then there were others that said we had him on the wrong mental health medications, so this seemed like the next area to look at to me. In late November I FINALLY got the authorization to have a Neuro Psych evaluation done on Nathaniel. This was a LONG process, yet we walked in out in hope and prayer that answers would come from it. I was definitely seeking answers on HOW to better the quality of my son's life and our families life.

In the end I was disappointed with the Neuro Psych report because I felt like it was just passing the buck to Spina Bifida and medications used to treat that. The one thing that I saw was some finger pointing to a certain medication that Nathaniel has been on his whole life for bladder management. I was crushed because I have researched this medication before and tried to have him taken off of it before to see if it made a difference, but met brick walls with the urologists. But I had an appointment with the urologists just days after the Neuro Psych report came back, so I hit my knees in prayer over how to best proceed.

At this point in our life the rages that Nathaniel had were completely out of control. He would rage almost daily and HURT me most days. I was always walking around covered in bruises from my son, physically exhausted from dealing with the situation and constantly keeping my children apart to protect my daughter. It was emotional hell, and physical torture for me. I knew that something had to give with the rages, or I was going to have to seek out of home treatment for Nathaniel and I DID NOT want that. So I resolved that I would speak to the urologist and INSIST on a 30 day trial period without the medication.

The day of the urology appointment I prayed all the way there (and since it is over a 4 hour drive I had lots of prayer time :) ) and I went in KNOWING how we were leaving the appointment. After the urodynamics test I presented my case. I took my time, I cited many medical reasons for wanting to try a period off of the medication and I tried my hardest to remain non emotional, just the facts. And I got shut down by the nurses and doctor.

This is the only medication approved for use in children.
He HAS to be on a medication.
They are just telling you this to blame it on SOMETHING, it is not really this.
ALL kids with SB have to take this medication, it is just life.

Those are some of the  things that I heard, and I KNEW that they were just scare tactics! I had done my research and I KNEW that some of those things were just lies. So it was time to play hard ball.

"I understand that you don't WANT to take him off of the medication, but the bottom line is that I am his mother I and I have 100% legal right to make his choices medically speaking. I AM taking him off of this medication for 30 days with or without your support. Now, do you want to discuss how you would like to see this handled or shall I leave now?"

To say that they were TICKED at me would be an understatement, and our appointment ended up going another hour as we discussed all kinds of aspects to this. But I got what I needed. I just NEEDED to know that it was not the medication before I looked into the extreme and heartbreaking options of out of home treatment.

I did NOT tell anyone around us what I was doing. Not that I wanted to be secretive, but I wanted to see what people's reaction was without my input. Within days we started seeing a difference.

The first to notice anything was my mom. She was traveling with us that weekend, and within 48 hours of taking Nat off of the medication she came to me and said "Nathaniel is not stuttering anymore. I have not heard him stutter all day." I had noticed the clearer speech pattern too, but was unsure if I noticed it because I wanted to or because there was a difference. But my mom knew nothing about the meds change and she heard it!!

The next thing I really noticed was his tracking in conversations. He has always been able to articulate well, but seldom would he follow the same conversation as those around him. He would just interject random things where ever he chose to. Within the week I noticed that he was actually following and participating in the conversations around him without us changing the topic to whatever he was talking about! This is one of the first things his pediatrician noticed when I took him in off of the medication! His teachers also really noticed it.

About 3 weeks in I could honestly report that we had gone 3 WEEKS without a rage! This was HUGE! We went from violent physical rages almost daily to 3 weeks without a single incident!

Now 9 weeks in I can see so many changes.

His conversation skills are much more age appropriate. He tracks in the current conversation whether it is a preferred topic or not. His stutter is completely gone unless he is very agitated. And he is INTERESTED in others thoughts.

His attention is so much better. He can participate in self regulate in ways he has NEVER done before. He can REMEMBER simple sequences where he ALWAYS had to have them visually in front of him before. And he is starting to self start on daily routines instead of being completely dependent on his visual routines.

With his improved attention and concentration he is making huge leaps in school things, especially reading!! (He was reading at a 1st semester 1st grade level as an incoming 5th grader!) He is also telling me about things from school from memory without looking at his papers to remember! Overall he seems so much more calm mentally!

The HUGE things that we are seeing in our home are that he is much more empathetic to those around him and the rages are almost completely gone! This is making for a MUCH more calm and peaceful home. We all feel safe and supported now, and we are enjoying each others company like never before! I have NEVER seen my children so kind and caring to each other. Nat has never cared before and Audrey has been scared to go near him for so long. It completely melts my heart to see them now! And the rages.... they are virtually GONE! He is MUCH more age appropriate in his emotional pattern now.

The overall quality of my son's life has increased more than words can express. He is a new child and I am head over heals in love with him all over again! And the kicker??? The psychotropic medications that he was on to help manage his behaviors.... we have taken him off of 2/3s of them since eliminating the bladder medication!! It looks like we were having to use those medications to manage the SIDE EFFECTS of the bladder medication!

I am SO GLAD I stood my ground and insisted on trying this even though it was against medical advise. The issues that have come up around bladder care are a pain the booty, but I will take them any day of the week over the neurological side effects we were dealing with. The quality of life is SO MUCH better, we will NEVER go back to that medication!

I really wanted to share our story, not to scare anyone or to bad mouth any doctors, but to encourage parents.

Parents REALLY DO know their kids best.
Parents really are the only ones that see the WHOLE picture of our children.
We DO need to research what is happening with our kids and advocate for them.
And it won't always be easy, but we can do it!
If things are going in a way you are not ok with don't be afraid to try it a different way.
Don't be afraid to say "I need to SEE that what you are saying really is."

I could sit here and kick myself that I didn't take this battle on years ago, or I can accept what I can not change and learn from it.... and I choose to learn, to grow and the be eternally thankful that I took the chance now, before something worse happened! I am so thankful for the new child I have now. I am so thankful for the peace and joy that now abounds in our home. And I hope and pray that if anyone else is going down the road we were on that they can take hope and courage from our story.


Amanda said...

Hi Gretchen,
I've been following off and on for a couple of months. My son Nick is almost 15 months old.
I can't believe the battle you have been fighting - and you WON! You followed your gut and told people what you thought was wrong and then fought when they said no.
You are so right - you ARE his mother and you have the right to go against medical advice.

I am not going to ask what bladder medication gave you so much trouble. I think I'm afraid to, I imagine I know which one it is...

Thank you so much for sharing your story!

Jamie said...

Wow, what a story! Thank GOD you followed your instincts and found out what it was! I fight them on that medication all the time, and I'm glad to have one more thing to tell them when I do!

Becky said...

Praise the Lord! Good for you for sticking to your mama instincts, and fighting for your boy :). Thank you, Lord, and may you continue to bless this precious family with grace, strength, faith, joy, and love!