November 8, 2012

Bye Bye Hirschsprung's --- Hello Autism

It has been quite a while since I have posted anything. Of course that means our Hirschsprungs journey is still in off mode...No problems, no issues, just a lot of trips to the potty but that is nothing to complain about considering what we have been through. To bring us up to date, Dylan is now in full blown autism mode, he is 6 years old now and in his second year of Kindergarten. Instead of struggling with bowel infections, rectal irrigations, diets, medicines, we now struggle with sensory issues, behavioral problems, developmental delays, social delays, speech delays, which all of course affects his education and ability to learn. I must say after fighting hirschsprungs disease for 4 years I thought we were done battling but now we battle this daily. At least his health is no longer compromised, he is healthy and I thank God for that. We will fight and battle this just as we have battled everything else. The most important thing to me is having Dylan live life with a smile on his face, for him to have joy in his heart and to find a way to bring him out of himself, open his mind and let the real him shine through. I am hoping to start a blog about our autism journey, autism affects so many families, almost every family these days so I look forward to giving more inspiration and hope with autism just as I hope I have offered some of you with our story of hirschsprungs. Best wishes to all of you!

6 comments:

  1. hello catrina, our son was born with HD however we have seen no signs of autism. Is the autism part of the disease able to develop as he gets older? He seems to be fine and even ahead of the pack mentally. Please let us know! thanks!

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  2. Hi Catrina. I am so touched by what I read about the little Dylan. The suffering endured so young, it sometimes seems unfair and incomprehensible. We also experienced the hell of HD with our two children. Today it all seems so far away, but I think about very often. Our daughter is now 6 years old and our son will be 3 in a few months. They do not represent any sign of autism, but it is something that can develop when grow more. I wish you courage for the future

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  3. THANK YOU for your story and your journey. Our adopted son also has full colonic HD and at 19 months, sensory processing disorder. At this time, he's pretty social and communicative so they are not saying autism yet, but it's always in the back of our minds. BTW, I'm also a Katrina...of the hurricane variety, though. Lucky you to have gotten a C instead of a K. :) I will pray for Dylan and for you guys. I just related so much to all you said as our little dude wakes up almost every morning soaked with poo and vomit. All of the cultures have been run and the x rays and everything else and nothing is showing up so it's been hard.

    Much courage and endurance to us both. Great to have found your blog. I will lurk here as I see updates.

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  4. God Bless you and your family. Love him and enjoy him. Let Go, Let God. This was our statement of FAITH during good and bad times. You can bring him "OUT" with consistency, routines, practice, trial and error opportunities, exposure, and social-skills training.

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  5. I have no idea if you all will see these comments since its been so long since you posted them. I am not sure how to get access back to this account. I want to let you all know that autism is not related to HD, there are more cases of HD children without autism than there are with it! I absolutely believe it is just coincidence. Dylan is now 10 years old and has not had any flare ups related to HD in a long time. He has such a great appetite- so good in fact that he's again a lot of weight. Prayers to all of you who are also on this journey- it gets better- don't lose hope!

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    1. Hi, just came across your blog...I have one of those gifts, that keep on giving!!! Lol! My son will be 23 in a few months. At day 3 he was gravely ill in the hospital when he didn't pass meconium and refused to latch on while breast feeding. One of the lactation nurses noticed my baby had a very weak sucking reflex and after being bottle fed, vomited quickly thereafter. The ball pretty much rolled quickly after that, barium enema, x-rays, biopsy of intestine, diagnosis and Soave pull-thru. Seeing such a large colostomy bag on a newborn baby was surreal. The colostomy bag was the easiest part of the journey! Even when it would pop off and leak...nothing prepared us for what would happen next. 6-8 months later, he was reconnected. Short segment Hirschsprung's Disease. Was so happy that the doctors could fix him!!! Then came all the terrible bouts of diahrea and constipation, breakdown of skin around anus....poor guy. Now he's 15 months old, at his regular check up, there was some concerning milestones he never met. That's when the dr mentioned PDD...PDD??!! Waited til his second birthday and a SDCH developmental psychologist diagnose him with Autism. I was 7 months pregnant with my daughter at the time. So much has happened between then, 1996 and present. He's around 6' and weighs in at around 260. Big boy. Food is the most important motivator to him, besides his iPad. He is verbal, but is apraxic, and I was told he'd never speak, so whereas his speech sounds odd, he's always mistaken for an English as a second language student. Oh, he suffered from terrible insomnia, since birth he never slept on schedule. I've tried every sleep diet plan, medication etc, to no avail. So add that to the mix, Hirschsprung's, insomnia, autism. He keeps me up all night, been doing this regularly for nearly 23 years. That I believe is the hardest for me...not getting a full nights sleep. Sorry if I sound negative, but I love my son. I do not get compensate to care for him, the state I live in doesn't have that program. Infact, since he's aged out, I've been waiting a year for a day program. If there's one word of advice I can give parents of newly diagnosed and not newly diagnosed....BEHAVIOR MODIFICATION!!!!! Parents, please take this seriously, it was one thing when he was young and pushed his sister or I, now I'm dealing with a large grown up man, who could kill
      me if he so desired...WHY you ask??? Because no matter what behavior plan, and believe me, we've had dozens over the years, I could never get my husband to follow thru with them. He's a brilliant, loyal husband and father, but sucked at not being able to adhere to the plans. His method of discipline was perfect for a Nuero-typical child...NOT an autistic one. Very difficult. I was told by one of our behaviorlists that because of this, we WILL have problems and to not work on it now, will rear its ugly head when he's a tantruming and out of control adult. I was offended at the time...I didn't see it...well, I see it now! She was right. SO, here I am, a day after my son went on a violent rampage and a trip to the ER room, regretting WHY we didn't follow thru with his behavior mod and provide consistency in his formative years. Please, please, please....parents please, it's important, it's important to the WHOLE family unit, but most of all, for the well being of your autistic child. Thanks for listening. I'm just a parent. But this is my biggest challenge. Our biggest challenge. God bless.

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