Diagnosed on Dec 2nd..anyone else who has a child with autism as well?

[dalander97]

Hi, my name is Debbie I am glad to have a place to post. I had hydrodistention on Dec. 2nd which confirmed my suspicion of IC. I also have a son with autism and my life basically wraps around him. He is a little boy age 6.5 the youngest of 3 with amazing blue eyes that melts your heart. Now with my diagnosis I have a whole new world to learn about and honestly the diet thing is overwelming. I already removed all wheat, rye, oats, barley and much more (gluten) and dairy from my son's diet for 2 years. I baked bread every 3 days, researched suppliments, went to a nutrionist. This was in addition to fighting my school district for an appropriate education in court. We had to move. It is a long tough and nasty story but bottom line my son now receives what he needs but I am done. And I am not done. He gets what he needs but everyday we fight for him to progress and I can never ever let my guard down. He has recently regressed by peeing all over the floors again. I don't think I have anything left for myself honestly. I am going to try the Elmiron and just want the docs. to continue giving me pain meds without a hassle until I know whether the Elmiron will help. My uro wants to send me to pain management and I don't mind if they will simply regulate the meds but I don't want a whole bunch of stuff like electrical impulses or tubes placed in my back or even pschotherapy for the pain. Honestly, just give the the meds and let me get on with my life. I wouldn't mind trying a combination of pain meds and the low dose anti-depressant because that sounds easy as well but I don't want to be left to deal with any pain period. So I need advice as to how to effectively communicate this. This is no offense to anyone but most people who don't deal with autism just have no concept of what parents deal with in a day. I really have nothing left but I am really very good at helping my son and that is what I have to be. I also have ruled out the instillations. I can't possibly handle a catheter unless I am put out cold. I have had many surgeries and been put out before and typically you wake up slowly and start to be aware. This time...OMG I woke up instantly screaming in burning pain in my uretha I sat straight up. The nurses kept telling me to lay back and rest and I started crying literally in pain. They finally gave me a shot of Demoral upstairs in the same day surgery ward. Again, she told me to sit back but I couldn't. I was fine. The pain was bareable with the shot but I still needed to go back and forth to the bathroom and I didn't feel drugged up just better. I drown myself in water so I would pass some urine.
That worked but then over the last week and a half have still been in incredible pain and muscle aches. Lower back, pain in the bladder, pain while peeing, frequency etc etc. the whole gamut. Thanks for listening and any advice.
Debbie

[Indy]

Hi.

I have had IC for 11 years. I have 2 sons, 12 and 13. The 13 year old one has autism. It was very hard to care for 2 little ones as I got IC shortly after the 2nd one was born. My son is "high functioning" but as you know, that still requires the work of having 5 more kids.

I want to give you some hope. I wish someone would write an article about my boy. Two weeks ago, he celebrated his Bar Mitzvah. A boy who didn't speak until he was 4, read ancient Hebrew in front of 130 people and made perfect eye contact, used humor in his English explanations and had a party that equaled my wedding. In my speech to him, I said that if I had been able to visualize that moment 10 years ago, I would have known that having autism was OK and that I would have been spared all that worry and heartache. I know not every case works out like this, but I was sick and still focused on him.

Now I'm in a year long relapse but thank god my boys don't need as much from me right now as I search for another way to get this IC into remission. I have had 2 remissions lasting years. It does happen but this time I'm pretty floored.

Good luck.
Indy

[ICNDonna]

If you're still having pain from your hydrodistention, I suggest you contact your uro and ask to be checked to be certain you don't have an infection working. Sometimes it's hard to tell with IC whether it's a flare or an infection. Also, it can take several weeks to completely recover from a hydro.

You did a very good job of explaining your viewpoint when you posted --- you might just print that out and take it to your doctor.

Sending gentle hugs,
Donna

[Betsie]

I also agree with Donna and what an inspirational story from Indy. My hats off to both of you. I know little about autism, but just read a very interesting novel which focuses on a young boy with autistic issues. It was heartwarming and enlightening...I think many of us think we know what autism is, that book truly opened my eyes.

I am also wondering if a note from your son's medical team, might not get you the pain needs met in a more timely fashion...like skipping some steps and going right for the big guns. There is plenty you can take and function quite well. From where I sit, it sounds very reasonable that you need quick acting pain relief in order to continue being an advocate for youer son.

Just a thought and I wish you every pain free moment you deserve, though I am sure your love for your son is unbiased and equal to that of anyone's child. I hope your Drs will be understanding.