October 22, 2010

This ugly thing called Hirschsprungs....its sneaky....

I may not be a doctor, a surgeon, a nurse, or even a scientist...but it doesn't take a genuis to figure some things out. This thing called Hirschsprung's, well it is difficult, a real scary thing at first. Any parent with an HD child knows the first year of Hirschsprungs is the hardest, gradually things get better, then there are back sets as well. With everything Dylan has been through the toughest by far is the surgeries of course, irrigations (who would like those?), and there is bowel obstructions/enterocolitis symptoms. Dylan has done so well since early spring. He has had 1 tummy bug since then (and since preschool started)....But today the ugly Hirschsprungs has showed itself again....Dylan became sick the other day, not "gut" related sick, just sick--like a cold virus/allergies...coughing, sneezing, runny nose and a bit of a fever...As if that weren't enough for him to have to deal with, I woke up this morning to a "mud puddle" on the sofa, any Hirschsprung parent will probably know what I mean by that...My little guy standing beside of the sofa crying his little heart out because he was soaked with watery poo. As I said, this HD thing can be ugly....So here we are today with a nasty cold, and smelly, watery diareaha...Thank you Hirschsprungs for testing my strength. Things are getting better slowly today and Dylan is finally starting to drink a little bit of fluids, and as usual since not eating much for the last few days my little guy looks so skinny....The moral to the story you ask? Hirschsprungs never completely goes away, just when you think things are looking up, it sneaks back in with either a tummy bug or a cold virus....But you know what, we will get through it time and time again, and forget about it a little while longer before it happens yet again....But I can say we are blessed compared to some. Never lose hope, to all those out there trying to keep your HD children healthy, there will always be times when HD seems to get the best of you, or seems to always cause problems, but just remember stay positive things are always going to get better and they will hopefully never be as bad as the previous years....Never give up and know tomorrow is another day, and possibly a healthy HD symptom free one!

22 comments:

  1. I'm with you on this. Everytime I feel like we have it licked, it rears its ugly head.

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  2. Oh I hope you guys are doing better! I came across your blog tonight looking for a link between HD and Autism. Was so excited to see you were able to potty train your little guy! Mine is nearing 4 are we still aren't there. You gave me hope!

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  3. Thanks Lee Anne, Dylan is doing better, he just takes these little episodes sometimes. Less often now of days though....My son does have HD and autism, not sure if you have a child with either disorder but know that it is rare for a child to have both. Good luck to you with the potty training, glad that these posts helped you...if anything just know that its not impossible and IT DOES get easier...Dylan is proof of that...He has done well and we are blessed...I hope the same for your child!

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  4. My 8 month old daughter has HD. She has an ileostomy and will have the pull thru next year. She caught a stomach virus this fall and it was terrible. Her ostomy bag wouldn't stay on with all that liquid poo. HD is terrible and we still have more to get through. Iam a first time Mom as well. I know that there is hope. Thank you for your blog!

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  5. Bless his little heart. This disease is extremely frustrating. I don't understand how to explain it to people who aren't familiar with this disease. The looks because my 3 1/2 year old is still in diapers, the refusal to allow him to move up in school, the insurance that says diapers are a luxury item. I know it gets better and I am thrilled to find other mom's who have babies like mine, but at the same time there needs to be more information out there!

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  6. I agree...there have been many bumps along the way, as you said the stares, the glares, and then the unfairness of the way the health insurance system works at times. Indeed there needs to be more awareness, after meeting as many moms online as I have, I begin to wonder just how "rare" this disorder is....As moms and advocates we do what we can to raise awareness and educate these judgemental people who tend to not understand things just like bowel disorders, kids still in diapers, and my favorite, the ones who stare in disgust at colostomy bags...I can confess that I have been quite rude before when someone stared at Dylan as though he was deformed just because he had a little colostomy bag attached to him as a baby. If only people in general were more understanding, but it has opened my eyes, and when I see a mother with a disabled child, or special needs child, I just smile because i know what its like...

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  7. Wow, Just read one post, and it brought me to tears (which isnt hard these days being 8 months pregnant) I have a 2 year old son with HD.. We are in a 5 month bad period... In our first really bad period of the 2 years i have seen the "mud puddle" too many times but probably wont be the last of them... Thank u for sharing ur sons history.. Iam finding it hard to find support and advice with HD.. I do have 2 questions for u, 1. do you do any speical diet?? all my sons drs say diet wont give guidence on diet.. 2. potty training?? when to start?? ive been feeling very alone in dealing with his disease thank u for sharing :)

    Elizabeth

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  8. I haven't tried any special diet with Dylan just because we tried no dairy and lactose free and it didn't help...and he is such a picky eater, so I have just always been glad to get him to eat anything! lol As for potty training, dear it all comes in its own time, when your son is ready you will know...The best thing to do is just make it an option when he gets to where he is aware of how it happens...Dylan was 4, when he potty trained, and it happened rather quickly after introducing the toilet, but I did wait until he was mature enough to get it...Don't push and be patient is my only advice...Good luck to you and your son, and know that it does get easier, never give up, never lose hope!!!!!

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  9. My son was born with HD and had the pull thru at 3 wls of age, he has a rare case bcoz he didnt pass his first meceium, after the boipsy he started too poo alone. He recovered well and still does soft poo's and also does normal firm poo's he is 15 mnths old now and is a verry fussy eater. I am wondering if this is bcoz ofthe HD

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  10. I thought I was the only 1 with a child going through this because I have never heard of HD before my son just turned 4 and has now been diagnosed with it he's had rectal biopsy's done in the past which showed no signs of HD but after 2yrs the proof is in the pudding my son isn't potty trained but was due 2 start school come Sept he's such a bright kid but Idk now how he will adjust after all the procedures he has 2 have done I need some insight its greatly appreciated ROSA LOPEZ

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    1. Rosa, you are definetely not alone! Good luck, just know that things DO get better!!!!

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  11. Hi Catrina,
    I have found your blog, because I was looking for some information about HD in English (I AM FROM Poland). Thank you for your blog!!! My son actually is having colostomy, we are waiting for colon resection in January. I am so scared about it, but on the other hand I would like to be already after this operation. It is something like being pregnant about 39th week: you just do not know what is better: still being pregnant or already have the childbirth :).
    Xxxxxxxxx
    Kinga

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  12. i am a 16 year old guy who was diagnosed with HD as an infant. Thank god I've been able to tame my symptoms throughout my life and its gradually progressing as if i never had it at all. There is hope. Just takes time and the mental stability to get through hard times.

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    1. Hi,
      I have one question to you. Did you have colostomy? And if yes, how long after the pull-trough did you have it?
      Thanks!

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    2. Glad to hear you are doing so well! It is amazing to hear great stories such as yours! God bless you!

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    3. God bless glad to hear you are a success stories so many scary sad stories out there that it had made me quite depressed. Do you remember if you were hospitalized a lot with enterocolitis?

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  13. Hi Catrina,
    My son just turned 1. He was diagnosed at 3 months old and had the pull-through at 4 months. We still have to dilate him once a day but that will end soon. He is thriving right now. We did have one issue with enterocolitis about 3 weeks after the surgery but we caught it in time and he is doing really well now. My worry is that I have heard HD is connected with other issues, mental disorders and vision and hearing issues that are all part of a couple of serious syndromes....just wondering if anyone has had any issues with finding this later. I am of course constantly trying to monitor if anything else is going on with him but it is hard to tell with him still being so young. Just wondering if anyone has any info. I want to hear, "Oh you would know by now if it was connected to something more serious!" but I know that may not be the case. Thank you...from panicky mom!

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    1. Hi,
      my son is 16 months old. He is still having colostomy, but now he is after the pull-trough. I understand you, because I am still worry if everything is ok with him, even after my doctor said that all those other issues are always found shortly after birth. Of course, metal disorders are found later... But do not think about it! Everything will be ok!!! <---- I am saying that to me :).
      xxx

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    2. Its all very difficult to understand, some children have isolated Hirschsprungs, some may have other disorders. But Hirschsprungs disease in itself is not the cause of other disorders. Genetics is tricky to understand but as far as the research I have done, no there are no serious complicated disorders linked to HD itself. Hd is a known gene mutation disorder, almost like a genetic make up that went wrong. Some things just can't be explained. Please do not worry yourself with other things being wrong. I know SEVERAL healthy children who had HD as babies and are fine now...

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  14. I am 28 years old and I have HD. It has been a struggle all my life but I'm alive. I had the pull through surgery when I was little but it did not work. You can live with this and I am proof of it.

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  15. I am the 28 year old above.I tried the special diets and all of the medications and nothing worked. My parents didn't want to put me through another surgery becuase they were afraid I wouldn't make it. I do not have any mental disorders at all. I struggled through my younger years but once I turned 12 it was a little easier to deal with. At 28 I still have some issues as far as not going like a normal person and stomach swells at times. Til this day I still have not had any more surgeries. If you have any questions please post and I will try to answer as best as I can. I know each person with HD is different.

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  16. Hi thank you for sharing your experience my question is if you've experienced apt of enterocolitis growing up and can you get it as an adult?

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