Things are good…really, really, really good. Joey is almost 4.5 years old. He is in preschool 5 mornings per week. He is fully engaged, active, verbal, stubborn, adorable, sometimes fresh!, loves to wrestle w/ Daddy, cuddle and read w/ Mommy and play princesses and firemen w/ his sissy! He is FULLY potty trained. Wakes up in the morning w/ clean underwear. We are blessed! exactly four years ago today he went in for pull through surgery w/ Dr Levitt at Cinci Childrens.
We are very very careful w/ his diet, water intake and routine. When our days are too long or he misses time on his home potty then things may get a little off track. He eats a very clean, fresh diet. Whole grains (no white rice, bread, etc), fruit at every meal, veggies at lunch and dinner. Beans, lentils, yogurt (w no added sugar preservatives), kefir. He eats chicken, salmon, and ground beef but I only cook w/ meat 1-2x per week, the rest of the weeks dinners are vegetarian. I always look at fiber amount on labels and aim to buy bread, cereal, pasta that has 5+ g fiber per serving. My goal is 5 g fiber per meal. We try and avoid food coloring, preservatives and added sugar as much as possible. We have found some foods are hard for him to digest so we avoid those foods or alter them. For instance he can have nut butter (no crunch) or nut flour ( I grind almonds into almond meal) but he cannot have actual nut pieces. He does OK w/ skin on an apple but not the skin of blueberry or pea (weird!). So he knows he has a special diet and he is very good at school at avoiding things like raisins, grapes and other foods that have stopped the poop in the past. I think this summer I will reintro peas and blueberry and see how he does.
Our local surgeon told me 32 oz of water a day. WOW, we were not even close to meeting that goal so I started adding 1-2 tbs of juice to his 8-12 oz of water and it helps. Now he gets approx 24 oz water each day and I hope all the fruit/veg make up for the 8 oz we are missing. On busy, hot or fussy days- when he doesn’t or wont- drink his water I will let him have juice box (just one, low sugar, no added ‘stuff’).
He has been on Klaire Therabiotic Complete probiotic since 4 weks old (he started on infant formula till 2yrs, now he is on adult formula). He gets 1/2-3/4 teasp per day. he also gets 2 capsules of S. boulardii each day. Vitamin D, multi vitamin, DHA are his other daily supplements.
Natural Calm magnesium is a great help when he is having trouble pooping. He gets this pretty infrequently but we always have it w/ us just in case. We use it INSTEAD of giving him senna (laxative). When he gets it we give 2-3 healing teasp dissolved in hot water and it usually helps. If that doesnt do the trick then I will use senna syrup- hard to find- but will sometimes work.
When pooping stops (which it did this past Xmas 12/2012) and we have to start irrigating again we have found that two drugs really help. Vancomycin (abx) and Diflucan for 10/14 days. I dont like using drugs BUT I hate irrigating way way way more. So if I have to give these drugs once every year or two I am OK w/ that. They really work wonders for him.
He gets 11-12 hours of sleep every single night, even holidays, even vacations, even birthdays. He sits on the potty (and we have to tell him to go ) 3-4x per day. At least two of those times are 20-30 min w/ an electronic device in his hands. the really weird thing is he can hold his pee forever. He rarely says he has to go pee or poop, we MIGHT hear that from him once a week. His poop is loud, kind of loose and sometimes kind of explodes out of him (so it covers the entire potty). He finally graduated to the big potty a few mos ago. we found the little potty w/ his feet firmly on floor really helped him. Now he has a stool under his feet in case he needs help w/ pushing. The other weird thing is that he sometimes doesn’t know if poop has come out….maybe because he is distracted by cell phone games or maybe he just doesn’t feel it like we do?????
I think I covered it all. This might be my longest post ever!?!?!!!!!!!!!
Thanks for reading!!!
Hi, my son is almost 4 will be in november :). He had pull through for short segment HD at 3wks old. By dr mcbride at the mater childrens in brisbane aust. He had been doing well with poops until this year when constipation became a small issue. This last month it has gotten progressively worse. He has been in hospital last week as he was vomiting up bile and not pooping. He has been dosed with laxatives. For the past almost week. His tummy is gurgling very loudly dr assures this is good as his bowel is working. His diet is terrible. After reading this. It shows how important a good diet is for kids with HD. I feel very alone in this battle as not many people understand it. I just found this page today. Im glad I have as an insight into another boy just like mine. 🙂
Thank You for the comments. YES, we agree that a ‘good’ diet is so very important-one of the most important things, really. Each HD child is so different and you have to really work hard at finding out what workd for your individual HD child. I kept a daily log for food and poop for the first 3+ years, that helped me so much.
I just came across your page on the HD facebook page. Thanks so much for sharing! I have found your post above very helpful. I also like your approach trying to be as natural and as healthy as possible.
What is S.Boulardii? We give our 4 year old son (5 in April) a pro-biotic Prodophilus every day. I also have a pre-biotic powder and have a Magnesium supplement that I have used. Is this helpful on a regular basis or only when your son is constipated? Our son has never had issues with constipation. His BM’s tend to be very loose and he still smears several times a day. We have him on a lactose free diet, but he does seem to handle yoghurt and cheese fine. I have noticed that multi-grain bread isn’t good for him and like to now give him a good quality sour dough bread. I noticed you are not giving your son bread. Do you do pasta instead..I’m just thinking of lunch boxes as he starts full time school here in Australia in Feb.
Thank you again….these posts, pages etc are so helpful…the doctors don’t know or have the first hand experience that the parents on these pages have, it is a wonderful resource to be able to help each other.
All the best to your little boy.
Thanks so much for your comment and for reading! As for food, Joey does eat bread just not white bread, we stay away from white products 95% of the time. We buy whole wheat or multi grain bread. I recently started baking my own bread so I am more in control of ingredients. Joey will also be starting K in a few months. I plan on packing him ‘bento box’ style lunches. He eats beans, pbj sandwiches, hummus and veggie/crackers, cheese, whole wheat pasta, apples w/ nut butter…things like that. So the box would contain 3-4 healthy choices for him to choose from.
We also don’t deal w/ constipation very often, but more w/ looser stools. The magnesium is used only when things seem to slow. We always try the magnesium before trying an irrigation (when he stops pooping; usually due to illness). The s. boulardii is a healthy yeast, helpful in treating diarrhea – so we use it daily to MAYBE help w/ looseness of stool. It is used for a lot of other things as well, just google it! OUr probiotic is Therabiotic Complete (by Klaire) which has more strains than the Prodophilus, not sure if one is ‘better’ than the other but the Therabiotic is what our ped recommended early on.
Thanks again for reading and I wish GREAt health always for your little man!