Quick S.O.S. update!

September 13th, 2013

SAT. SEPT. 14 UPDATE:   Tommy’s diarrhea has come back.  Thank you so much for praying for our boy!

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Thank you to everyone who prayed for Tommy and for us over this past week!

We definitely could see the answers to prayer as a few different pieces of the puzzle are slowly coming together.  This is not going to be solved quickly.  We can see that there may be a G-tube at the end of this road, but we’re not ready to go there quite yet.

We did a lot of trial and error this week.  On the worst day, Mr. Tom-tom was taking two hours to eat each meal and there was still no change in his bowels.

What’s (sort of) working right now is to eliminate simple sugars like fruits, discontinue the low-dose antibiotic, and give him heavy-duty probiotics.

We changed his diet pretty drastically in one day, which isn’t the ideal way to handle it, but we were desperate to resolve the diarrhea.

We’re giving him a mineral-rich bone broth as the liquid part of his diet.  We made this by roasting a turkey, de-boning, chopping, and refrigerating the meat, then putting what was left of Turkey-lurkey into a stock pot with apple cider vinegar, onion, garlic, real salt, butter (the only dairy product we’re giving him), cayenne pepper, and some culinary herbs.  After that comes to a boil, we keep it simmering for several days.  It smells fabulous!

We take some out each morning to make up his day’s food and then add more water, return it to a boil and continue to simmer it.  We thicken some each day to spoon feed him.  For his solid food, we’re grinding turkey with baby rice cereal and bone broth.  We’re adding about an ounce of my milk to each of his meals.  We can alternate rice with potatoes and add other fresh or cooked vegetables as he tolerates them.  We’ll use chicken and beef as well as turkey as time goes on.  I’m not finished researching which fresh and cooked vegetables meet the narrow criteria.  His bowels returned to normal, but didn’t stay there consistently throughout the week.

We’re finding our feet again after our wonderful routine had to be interrupted.  I look back at this past week amazed that any schoolwork happened, but it did.

We’ll continue to seek for answers to the big question–

What can we feed Tommy that he will tolerate, that will help to heal his gut, that will not cause diarrhea, and that will contain just the right amount of the kind of nourishment he needs?

Thank you from the bottom of our hearts for reaching out to us with love, strengthening words and your best advice!  We are astounded at the response you gave to our S.O.S. post, both in comments and private emails.  I wish I could have replied to every one individually. but please know that you all are making a difference in our lives, and we are so thankful to the Lord for all of you!

THANK YOU!!!

 

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28 Responses to “Quick S.O.S. update!”

  1. Missy says:

    I’m praying for an easier week for all of you.

  2. Anne K. says:

    http://www.breakingtheviciouscycle.info/
     
    Hello! Long time reader here. I just wanted to let you know that this diet has helped my husband (Crohns disease, g tube at one point and possibly full bowel resection in the works before starting the diet, and now full remission from Crohns and pain free after being on the diet.) He saw major improvement after just weeks and now, 3 years in, would never go back. 
     
    You don’t have to buy the book either, all the information is available for free online. I can’t recommend it enough–we were in a pretty scary situation and this diet (seriously) gave him a quality of life that he hadn’t experience since being diagnosed with Crohns disease 10 years ago. 

  3. K says:

    It sounds like you are doing every single thing you can.  I commend you for trying everything before resorting to a g-tube.  It’s fantastic that you have breastmilk for your children.  I wish I did.  I’m trying to lactate since my baby nurses, but she’s an older baby and doesn’t nurse frequently like a smaller baby.  I have a pump, though, and I’m going to try getting on it twice a day, too.
    I wonder if you have a pressure cooker.  I have a huge electric one (3 of then actually) and it’s my favorite kitchen tool above all others.  You can make Tommy’s broth in it (whole chickens fit) in a fraction of the time it takes to simmer one on the stove, but it keeps as many nutrients in as possible.  It saved me when I had to fatter my first daughter up.  I also have a Vitamix and it’s my second favorite kitchen tool.  If you don’t already have one, I know that Vitamix sells the used ones (from the road shows) for a fraction of the cost to families with medically needy kids and adults.
    Getting Tommy on high doses of probiotics and off the antibiotics was a good move.  It’s hard to avoid antibiotics when truly necessary, but they wreak havoc with digestive systems.
    Are there any medications that can help Tommy with this?  I use Reglan for my cat with megaesophagus because his nerves don’t tell his stomach and intestines to move, but this might over-stimulate Tommy’s gut, but might make it work better.  On the other hand, you probably don’t want to slow his gut down with anything either, unless slowing it down gives it a chance to absorb the nutrients for a longer time.  But this won’t work if the gut is damaged and can’t absorb.  I really feel for you and the dilemma of Tommy’s situation.  It’s such a hard thing!
    I just thought of something, but some might think it’s gross.  Before babyfood grinders, moms chewed food and put it into their baby’s mouths.  Not only was the food small, but the mother’s saliva helped florinated the baby’s digestive system with healthy bacteria and enzymes.  These days, our babies put their hands in our mouths when we nurse them and play with them and then put their hands into their own mouths.  We also kiss our babies on the mouth sometimes or clean their pacifiers off with our own mouths before giving it to them, so we are finding other ways, without realizing it, to florinate our babies’ intestines with our own microbes.  Even sharing a spoon does it.  Since Tommy has terrible breath, I’m sure you aren’t kissing him on his mouth and he doesn’t play with his hands like a small baby, so he missed this step.

  4. Melissa says:

    So glad to hear things are looking up. What you’re doing sounds so incredibly labor intensive, but I know that your family works together as a whole (and I’m sure more than one person snuck a bite of freshly roasted turkey!)…and this is a labor of love. Jesus did no less for us; He went to the cross and endured much for ‘the joy set before Him.’ We are supposed to be transformed into His likeness…and it sounds like you are doing a fine job of it.
    Tommy (and Katie too!) are both miracles, and they are headed for miraculous lives. Bless you as you do what you do every day for these littles (and the not so littles). Your children are watching, and they are going to be the hands and feet of Jesus, touching lives in their own rights. What a legacy! :)

  5. Jamie says:

    I am mostly a lurker here.  But the first thing I thought of when I read of Tommy’s problem was that perhaps a J-tube or G-J tube would work.  So he is being fed directly into his intestine and bypassing the stomach.  Giving the stomach time to heal.  You can still feed him a blended diet this way (real food made at home) as far as I know. I don’t know if you are on facebook but there is a GREAT FB group for feeding tube info.  I am betting some parent there can give you help with gut healing and feeding and all of these issues.  (I had a Gtube fed daughter…she is tube weaned now).  Also any possibility of food allergies??  Is his stool mucousy? Prayers for resolution!!

  6. May says:

    I just thought I would tell you that you are doing a great job with the bone broth.  One thing you could always add to it is egg shells from breakfast (extra calcium) and nettles (yes stinging nettles) as they have large amounts of Vit. C.  If you want to make sure you are only giving him simple sugars then taking him off of all starches and grains would be good.  They are very difficult to digest and when you lack enzymes in the gut to break these down, they cause gi problems.  The probiotics are great as well and make sure that fruits and veggies are cooked thoroughly.  They have simple sugars in them but there is a hard shell around that sugar and again you need enzymes to break this down so anything in raw form would not be advisable.  I don’t think Tommy has enzymes.  As gut flora is formed from in utero and infancy then there are fantastic God made microbes that work together in a well orchestrated even tto enable digestion.  Tommy, I’m assuming from infancy never was given the opportunity to have that created.  So, repair is in order.  We have celiac disease in our house and are not only gluten free but are grain, starch and sugar free (we eat raw honey).  We also have 24 hr fermented yogurt for our probiotics.  Going gluten free was putting a bandaid on things kind of like the good foods that you are giving Tommy.  If I could recommend anything to you I would suggest going to pecanbread.com website to help out in this area.  The diet is wonderful for kids with celiac, IBS, down syndrome (they are tupically in need of gluten free diet)  and autism.  I know you don’t have free time, but I would check it out as it may save you and poor Tommy.  His gut needs to be turned into a shag rug instead of linoleum.  His villi in the small intestines are most likely non existent.  Blessings to you!

  7. Jaimie says:

    This mom did doing a great job with a blended diet for her son that uses a j-tube to bypass his stomach: http://heidis-place.blogspot.com/2011/07/blenderized-diet.html?m=1
     
     

  8. MamaV says:

    So glad to hear an update! We will pray for healing for Tommy!

  9. Mia says:

    I have been praying, praying, praying for Tommy and your family!  I am so enjoying your posts about him, though they are making me ask myself some tough questions.  I have Celiac disease and many other food allergies and intolerances that have caused not only digestive issues but many other health problems throughout my life.  As a child, I was in and out of doctors’ offices and hospitals all the time.  From my perspective, and from the perspective of my parents who saw friends’ children go through terrible, life-threatening diseases, these are “small” health problems, pretty easily remedied.  But, if my childhood had been spent in an orphanage in Eastern Europe, would they have been small problems?  Or would I have been too much trouble, needed too much?  What would have happened to me? The answers I have imagined to these questions have made me feel grateful, for sure, but so, so, humbled.  
     
    I’m so glad Tommy is with his family now, so that his health problems and needs will never be too much trouble.  I will keep praying for all of you.

  10. Cinderellamommy says:

    Wonderful news! Continued prayers for you all! :) Laura

  11. Galit says:

    I’m surprised you are using butter in his diet.  What is the advantage over a different fat, like olive oil or coconut oil (which many moms rave about) or flax oil (rich in EFAs)?  I would think butter would be harder to digest, no?

  12. Lorena says:

    Happy to hear that you’ve seen some progress, and praying for you & Joe & docs to have wisdom, clarity, & peace with all the information available for you to process!

  13. Susanna says:

    Galit, we’re still in the experimental stage with the fats, and that was one a dr. friend suggested we try, because it makes the food taste better to him as it would to you or me and we’re not worried about cholesterol. :) Everything we make for him right now is going into his mouth and he is extremely picky. A lot of what we could otherwise try to give him, he would gag on, vomit up, or simply refuse to eat. We do know that coconut oil is not the right oil for him, as it’s a great fat for those who want to lose weight, as it can alter the metabolism temporarily. Tommy needs to grow and put on weight, so he needs the kinds of fats that typical Americans are trying to avoid.

  14. Susanna says:

    May, thank you for these suggestions. As far as raw veggies go, I was considering greens? Because his BMs are loose again, we are taking the rice out of his diet to see if that helps the matter. We had been giving him unsweetened Greek yogurt, but we discontinued that in order to cut out the sugars. I’m not sure he would be willing to eat the fermented yogurt.

    Trouble is, meat is difficult to digest. Fat is difficult to digest. Starches are difficult to digest. Raw veggies are difficult to digest. Dairy is difficult to digest. Simple sugars cause diarrhea. What’s left? Is it what he needs? And would he eat it? That’s our dilemma.

  15. andrea mann says:

    susanna,
       i know we’ve talked a few times here and there through e-mail, and i shared a blog with your girlies in it a while back.
       anyway, our little, with Ds had a g-tube.  she gets NO formula.  i know her dietary issues aren’t the same, but we have had an amazing experience with a blenderized diet via g-tube.  she gets all real foods, that are healthy, whole, etc.  we have a blendtec blender, and our life, and hers, has truly been revolutionized by this.
       if you end up with a g, g,j., or j. tube, please don’t hesitate to contact me.  i can give you information on a blenderized diet, as well as help you to get a deeply discounted (or possibly free) high end blender to make it possible.

    praying for you all!!

    andrea

  16. Jennie says:

    Bone broth is rich in protein and gelatin.  Gelatin is excellent for constipation.  Is it a possibility that the bone broth may be contributing to his diarrheal episodes?  Just a thought. 

  17. May I suggest this book, The Specific Carbohydrate Diet? It has done wonders for our family in healing the gut. It’s similar to what you’re doing, with some differences. I hope this is helpful for you. Julie Monteleone
    http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Daps&field-keywords=the%20specific%20carbohydrate%20diet&sprefix=the+specif%2Caps&rh=i%3Aaps%2Ck%3Athe%20specific%20carbohydrate%20diet

  18. Beth says:

    Just a thought.  I had a friend who had surgery to lose weight, but then aa year after surgery she ended up in the hospital and in rehab for about a year because she was not absorbing protein.
     
    Anyway, they put in a port in her chest that went right into one of the chambers of her heart, and she received all of her nutrition that way for quite a while.  Would that kind of a port let his stomach rest?  
    Of course, maybe it would be difficult for him to leave the port alone and not try to take it out.  
     
    Good luck.
    Beth
     

  19. Jenene says:

    Just thought I would mention that a number of people have mentioned the same thing in different forms.  Not sure how familiar you are with it all.   Breaking the Vicious Cycle, Pecan Bread website and The Specific Carbohydrate Diet are all pretty much the same (I think Pecan Bread may have a few tweaks as it is specifically for children with autism if my memory is correct).  Also GAPS or Gut and Psychology Diet has a lot of similarities to the Specific Carbohydrate Diet but again it was designed for children with autism but also found to be helpful particularly for those with psychological issues as well. 
     
    It is so hard to know what to do and to have the time, resources, patience… to try everything.  We are about to begin a strict diet again for our adopted daughter.  We don’t have the bowel issues but we have severe anxiety that we are trying to improve before resorting to pharmaceuticals.  We know that she tolerates pretty much nothing but they still have to eat…

  20. Jillian says:

    You should talk to your doctor about a medicine called cholestrimine. I’m sure I spelled that wrong but anyways. It is a powder you put in liquid (I used to put it in jello) but I’m site you could put it in his puréed foods. A few years ago my stomach issues got so out of control I was home bound. I’m ashamed to say that I was even unable to control them for a bit. Within HOURS I felt 110% better. 

  21. Lauren S. says:

    Praying, praying, praying!  Bless you and your family for working so hard for these once “hidden treasures.”

  22. Melody says:

    When my daughter was a baby, I lost my milk. After some trial and error things, God told me to feed her very ripe papaya pureed with full fat coconut milk. Papaya, as you may know, has digestive enzymes in it. I used that as a base and slowly added other easy to digest foods giving her a week or 2 to test out the new food before I added a new one. It was our life saver. Now she is two and we have discovered that she is gluten and dairy intolerent. We did the SCD diet like several have already suggested. I highly reccomend that or the GAPS diet. By the way, are you using kefir. It is the best way to get probiotics. I make coconut kefir for my daughter. If you stick it in a blender with an extremely over ripe banana, it is sweet. My kids favorite smoothie right now is raw spinach, banana and kefir. You should try it! Yum!
    On a whole other note, I have a little encouragement for you. When you go thru tough times, don’t think of them as trials. Think of it as The God of the Universe wanting to get personally close to YOU.

  23. sabrina says:

    Praying for you and thinking of you now. Love you, dear sister!

  24. Goldengirls59 says:

    Have you looked into the Paleo diet? It eliminates dairy and is good for healing the gut. Just a thought!

  25. Susan says:

    I am so sorry that Tommy is still having so much trouble. I noticed that apple cider vinegar was one of the ingredients of his “recipe” – while apple juice can help with diarrhea, apple cider vinegar may have the opposite effect. Perhaps leaving it out for a day or so, experimentally, might be worth a try. 
    I know you are anxious to provide Tommy with much-needed nutrition, but things appear to be sliding through his system so rapidly that it seems unlikely that he’s getting much help from them. Perhaps giving him blander, more “binding”  foods, with less texture, might be helpful in getting things under better control – once that’s established, then more “challenging” foods could be slowly reintroduced. Tommy must be worn out – and I am sure everyone who is caring for his needs is approaching exhaustion by now, too.
    Is Tommy on any medication to help counter diarrhea? Obviously that’s not something he could remain on indefinitely, but just to break the cycle and give him a break (and to keep him from dehydrating), it might be helpful. Also, is there a dietician in your area who could offer some suggestions?
    Sending prayers and heartfelt good wishes for an answer!
    Susan in Ky
    Cousin to 2 from EE

  26. Maureen says:

    (((Many hugs0))) No brilliant suggestions, other than have they tried a predigested (“elemental”) formula yet, or do you think he wouldn’t take it? (they’re not real tasty…meant to be tube feeds for good reason. ;p)

  27. Lucy says:

    Have you looked into digestive enzymes? This website http://www.litalee.com/ has a lot of information and she does consultations that may help pin down excatly what Tommy is having trouble digesting.

  28. MJ says:

    A low residual diet (You can google it) can reduce diarrhea.  Foods such as squash are particularly good.  Pureed pumpkin often works quickly.

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