Progress Report & Naturopathic Doctor

It’s been about a week and I’ve backed off the homemade formula for a while.  Henry had been throwing up alot and we didn’t know why.  He was throwing up such thick phlegm than he was choking on it and couldn’t get it coughed out.  This, combined with the bloating and constipation made us think that he isn’t able to digest part of the formula.  We went back to commercial formula and expressed breastmilk until his vomiting is under control.

We visited Dr. Anita Bratt, a Naturopathic Doctor about 2 weeks ago – to see if she could add into more information into Henry’s condition.  We originally thought we wanted allergy testing, but were also open to her suggestions.  She agreed with the allergy testing as the first step, perhaps followed by a stool analysis.  She agreed that it certainly seems like he’s not digesting part of the formula, so if we can identify what it is, perhaps we can eliminate / replace it – and he’ll tolerate it better.  She also finds it strange that sometimes he doesn’t throw up at all, and other times multiple times a day.  Some allergies occur with combinations of foods, so perhaps this is part of it.  Or… perhaps it’s something we have no idea about!  (Too many “what ifs…!”).  We go back in a few weeks to get the test results.

 

Feeding Study

Henry has a feeding study last week.  His last feeding study was about 1 year ago, when he was just over 8 weeks old.  This one was certainly a different experience!

To begin with, there was about 3 hours of consultation before the study, to see if Henry would drink enough liquid to get results.  Henry is taking water, but no much else, so we weren’t sure if we would get useful results.  But we decided to go ahead with it.

We arrived at the hospital at 7:45am and didn’t get home until after 4pm… whew… what a long day!  Henry showed his wonderful personality the whole time.  There was no way he was going to sit in that chair and drink yucky looking water!  Needless to say… it was a trying time for all of us.  He was screaming and yelling and breathing heavily – so not at all representative of at home.  But we did get him to drink a bit, so got some results:

• no pooling (yeah!).  This means that when liquid is in his mouth, he swallows it.  He didn’t used to – the liquid would just sit in his mouth and he wouldn’t automatically swallow.  His swallow is still triggered farther back in his mouth than we would like, but it’s a definite improvement
• no reside yeah!).  This means that when he does swallow, the muscles are strong enough to get all the liquid down
• some penetration (boo!).  This means that some liquid was breathed into his airway.  NOT GOOD!.  But he was also yelling, screaming and hating the whole experience and I was pouring water into his mouth – so not a good study to accurately show a “typical” meal.  But it was the best we could do.
• the good news is that he coughed it all out right away – which means his cough is definitely stronger than before.
• and seeing as he doesn’t cough as home anymore when we drinks small amounts of water – we’re confident he’s ok with this (I know… there’s silent aspiration too… but he’s never had any lung infections, unexplained fevers, flu, etc – and the lung specialist says he sounds fine – so we’re ok with making this assumption as a family).

We couldn’t get Henry to drink any thicker liquids, so we still don’t know if his swallow is strong enough for something like pudding… but at least it’s a start!

Cheers, Shelley

Heart Warming Inspirations: “A Story by Erma Bombeck”

I first read this story on the Lucky Lakai blog, posted by his mom Nicola.  Sadly, this blog is no longer being published, so I searched for the story online and wanted to post it here.  Perhaps it was just great timing, but this story meant so much to me when I first read it.

I hope you enjoy it to…

A Story  by Erma Bombeck

This year, nearly 100,000 women will become mothers of handicapped children. Somehow I visualize God  hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes,  he instructs his angel to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint, Matthew.”

“Smith, Marge, daughter, patron saint, Cecillia.”

“Rutledge, Carrie, twins, patron saint…give her Gerard. He’s used to profanity.”

Finally he passes a name to the angel and smiles, “Give her a handicapped child”. The angel is curious. “Why  this one, God? She’s so happy.” “Exactly,” says God. “Could I give a handicapped child to a mother who does  not know laughter? That would be cruel.” “But has she patience?” asks the angel.” “I don’t want her to have to much patience or she
will drown in a sea of self-pity and despair. Once the shock  and resentment wear off she’ll handle it.” “I watched her today. She has that feeling of self and independence  that is so necessary in a mother. The child I am going to give
her has his own world. She has to make it live in  her world, and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you,” God smiles. “No matter. I can fix that. This one is perfect. She  has just
enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”

God nods, “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman  who I take for granted a ‘spoken word.’   She will never consider a ‘step’ ordinary.  When her child says  ‘Momma’ for the first time, she will be present at a miracle and know it!   I will permit her to see clearly the things  I see…cruelty, ignorance, prejudice…and allow her to rise above them. She will never be alone. I will be at her  side every minute of every day, because she is doing my work as surely as if she were here by my side.”

“And what about her patron saint?” asks the angel, pen poised in mid air.”

God smiles, “A mirror will suffice.”

A tough week of vomiting

Since my last post, we’ve had a bit of a tough week.

Henry’s been on a vomiting streak and he thrown up at least once every day.  No obvious reasons why (not sick… no rash…) but a few speculations.  He’s an “equal opportunity” pucker – throws up commercial formula, homemade formula and expressed breast milk (EBM).

Our speculations include…

• the more constipated he is the more he throws up.  Since he’s been on the neocate formula he’s had a lot harder time filling his diaper.  We’re giving him lots of water – we try for a total of 5 cups of fluid a day – but this doesn’t seem to work.  I give him prune juice through his tube, but too much of this results in diarrhea.  Can’t seem to find a happy medium.  PEG has been recommended, but we still need to learn more about this medication.

• his low tone plays a role.  Sometimes he wakes up more sluggish and will often get sick.  But this doesn’t seem to the be the case this week – at least not every day.

• he’s having trouble digesting something in his food and this is causing the vomiting.  He will sometimes throw up food/liquid that he had 1-2 hours ago.  We saw a pediatric naturopathic doctor this week and will write more about this in another post.

• he has a slow-emptying tummy.  His OT has wondered about this.  His upper GI study when he was 2 months old showed a slight rotation of one part of his digestive system that was of “unknown significance” at the time.  Perhaps this is playing a role.

• he has alot of air in his tummy and this is causing the vomiting.  He often has alot of propulsion when he pucks – lots of force

• ???? (who knows!)  a combination of lots of things!

His vomiting has changed in the last couple of months, since he started having various commercial formulas, instead of exclusively EBM.  He used to get sick and feel immediately better.  We believed it was related to volume… we didn’t know the signs of when he was full and gave him too much.  Once he got sick, his tummy was better and he was happier.

Now when he gets sick it’s alot worse.  He throws up several times, over a longer period of time.  And he’s often throwing up massive amounts of thick phlegm – it gets caught in his mouth and throat and he coughs and chokes on it.  He’s miserable – often for more than an hour.  Plus he continues to drool alot for the rest of the day.

Anti-reflux meds have never helped, so we’ve started to look at other ideas.  We have been refered for a GI consult, but haven’t got an appointment yet.  We’ve also seen a naturopathic doctor.  We’re doing another feeding study next week, so perhaps this will offer some possible answers.

Cheers, Shelley

A hiccup along the way

Henry developed a slight rash on Saturday afternoon, and we’re not sure if this is just due to a cold, or if it is a reaction to something in his formula.  He also vomited once on Friday (while filling his diaper – so totally normal) and twice on Saturday (no apparent reason).   Henry often gets a slight rash and throws up with even the slightest cold, so we’re not sure the cause.  However this rash did look a little different from his others.

His latest batch of formula contained egg for the first time – a known allergen.  Henry’s had egg yolk lots of time, but never a whole egg before.  So, just to be safe, we went back to commercial formula and expressed breast milk for a day or so.  His rash cleared up really quickly and he hasn’t vomited since.

I’ve frozen the rest of the formula that contained egg and am going to make a new batch of formula based on a previous recipe that he has tolerated before.   I may try the egg based formula again in a week or so, to see if he reacts to it again, or if it was something else that caused his symptoms.

Cheers, Shelley

Henry’s Homemade Formula – 3rd Attempt!

All’s good so far.

I’m thrilled and actually really surprised how easy this has been.  I was cautioned so many times how hard it would be and how unlikely it would be that Henry would digest and tolerate a homemade formula.  And yet… it’s been over a week and he seems to be doing really well.  Little to no vomiting or retching.  Less drool.  And most importantly… he seems happy, comfortable and energetic!

Tonight I’ve worked on another variation of his recipe – again substituting some new items:

Grains: 3 – 1 ounce equivalents

• 1/2 cooked rice: 108 cal.
• 1 slice whole wheat bread: 85 cal. (estimated*)
• 1 cup dry cereal (bran flakes): 110 cal.

Vegetables: 1 cup

• 1/2 cup steamed yams: 68cal.
• 1/2 cup steamed peas: 52 cal.

Fruit: 1 cup

• 1/2 cup mashed banana: 100 cal.
• 1/2 steamed apple with peel: 32 cal.

Milk or Milk Substitute: 2 cups

• 2 cups expressed breast milk: 320 cal. (estimated**)

Meats, Beans, Nuts: 2 – 1 ounce equivalents

• 1 ounce chicken: 47 cal.
• 1 hard boiled egg: 78 cal.

Fats: 3 teaspoons

• 3 teaspoons canola oil: 120 cal.

TOTAL CALORIES: 1120

* We make our bread at home, so I estimated the calories using this website:  http://caloriecount.about.com/calories-bread-whole-wheat-commercially-prepared-i18075

** I have a supply of frozen expressed breastmilk (EBM), so I used this for the dairy this time.  EBM has an average of 20 cal/ounce.

For a step-by-step description of how I blend the formula, click here.

protein:

• Recommended protein for children ages 1-2 yrs: 1.1gms/kgram/day
• Henry is 9 kgs so needs 9.9 gms/day.  This formula provides well above that amount (29.5g).  This is not including the EBM which I’m told is higher in protien than whole milk.  Still need to follow up with his pediatrician.

Fibre:

• Recommended Fibre for children ages 1-3 years: 19 grams/day
• this formula provides approximately 21.2 grams, based on the foods I was able to find fibre amounts for.  Not all the foods in the formula are listed, so it may provide slightly more.

This time I am increasing the calorie density of the formula to 26 calories/ounce, so the final volume will be approximately 5.2 cups.

Instead of freezing in ice cube trays, I have some 250 mls glass mason jars.  They can be frozen, refrigerated and warmed – so hopefully will be very convenient.  As we are using the formula 2 times a day now – on our way to 3 times per day – I may stop freezing it and just make up a new batch every couple of days.  Will have to experiment a bit to see what works best.

Free Water

I’ve been giving Henry some prune juice in addition to his water in between meals today.  It’s hard to give him the amount of water the book suggestions, as I don’t want to wake him up from his nap to give him water, but if I don’t then I’m giving him water right before bed… not good for overnight diaper changes! (lucky me… my hubby does most night stuff so I can sleep… yeah!)

Cheers, Shelley

ps… great news – we were approved for the At Home Program Medical Benefits and Respite, which means our supplies will continue to be covered by the BC Government! Yeah!

Henry’s Homemade Formula – 2nd Attempt… Follow up

We tried the Homemade Formula twice yesterday – at lunch and dinner.  He did well at lunch, but got sick about 30 minutes after dinner.  Sure smelled different than the commercial formula… definately real food!

Anyways,  I was a little sad at first, trying to figure out why it happened.  Then we realized he had filled his diaper at the same time.  Ah ha!  It’s always been a challenge for him… he can’t push in only one direction, so if his tummy is full… out it comes.

This leads me to the topic of water, or “free” water, as the books call it.  Basically it’s just a fancy name of drinks of water between meals.  Henry doesn’t get “free” water, he gets a drink of water.  According to his dietician, at 900 mls of formula per day, plus 5-10mls flush before and after, he should be meeting his fluid requirements.

However, as Henry continues to be constipated, we’re still giving him more water.  Then I read (in my favourite book, of course – Homemade Blended Formula Handbook) that they recommend much more water.  For a child Henry’s size – approx. 20 pounds – up to 5 cups of liquid in 24 hours (water, juice, broth, etc).  The authors’ readily admit their recommendations tend to be much higher than typical medical advice, which they say is based on metobolic needs only.

• Henry recieved 900 mls of liquid formula, plus approx. 100mls more in pre-and post- meal water flushes.
• This leaves another 250mls of water that we try to give him throughout the day.

Their advice is to give a bolus of water 30 minutes prior to the meal as a way of “priming” the body for food.  As water is not digested and moves through the body quite quickly, this is also a way to help transition a child who is being continuously fed onto bolus feeds (if appropriate).  It helps the person become accostomed to feeling “full”.

We found 30 minutes wasn’t enough time proir to Henry eating, so we try to give him a drink about 1 hour pror.  We started at 30mls and are now up to 60 mls.  We try for 4 times per day, but don’t always get them in, depending on naps, outings, etc.

We have started to substitute some prune juice at times, to try to help with Henry’s constipation.  We’ve just started this, so not sure how much we will need to give, or if it will work.  Will keep you posted.  So far, just 30mls at a time, 1 to 2 times a day.

The authors do caution about giving too much water as this can lead to some serious side effects.  Everything in moderation.

Cheers, Shelley

Henry’s Homemade Formula – 2nd Attempt!

So far, so good!

We’ve used up all of the Henry’s 1st batch of formula… 7 lunches so far and he’s tolerated it really well.  At first the formula was watered down quite a bit as I just wanted to see how he would tolerate the real food versus his commercial formula.  I knew I couldn’t maintain this consistency for long as it didn’t provide enough calories, but it was a place to start.

He’s now had two lunches of this latest formula and again he’s tolerated it great.  This new formula matches the calorie density of his commercial formula (24 calories/ounce) and he’s had the same volume as he usually gets (150mls).

I once again followed the template suggested in the Homemade Blended Formula Handbook for a 1000 calorie/ day diet (see link on right side for Mealtime Notions Website).  As Henry needs between 800-900 calories/ day, this made slightly more than one day’s worth of formula.

Here’s the recipe for this new batch of formula:

Grains: 3 – 1 ounce equivalents

• 1/2 cooked rice: 108 cal.
• 1 slice whole wheat bread: 85 cal. (estimated*)
• 1 cup dry cereal (bran flakes): 110 cal.

Vegetables: 1 cup

• 1/2 cup steamed broccoli: 22 cal.
• 1/2 cup steamed carrots: 35 cal.

Fruit: 1 cup

• 1/2 cup mashed banana: 100 cal.
• 1/2 steamed apple with peel: 32 cal.

Milk or Milk Substitute: 2 cups

• 2 cups organic whole milk: 300 cal.

Meats, Beans, Nuts: 2 – 1 ounce equivalents

• 1 ounce chicken: 47 cal.
• 1/4 cup cooked chick peas: 68 cal.

Fats: 3 teaspoons

• 3 teaspoons olive oil: 120 cal.

TOTAL CALORIES: 1027

* We make our bread at home, so I estimated the calories using this website:  http://caloriecount.about.com/calories-bread-whole-wheat-commercially-prepared-i18075

I also confirmed the fibre and protein were within the recommended range for a child of Henry’s age.

• Recommended protein for children ages 1-2 yrs: 1.1gms/kgram/day
• Henry is 9 kgs so needs 9.9 gms/day.  This formula provides well above that amount (21.5g), given the milk alone provides 16 grams.  I’m not sure if this is a problem and am going to follow up with his pediatrician.

• Recommended Fibre for children ages 1-3 years: 19 grams/day
• this formula provides approximately 18 grams, based on the foods I was able to find fibre amounts for.  Not all the foods in the formula are listed, so it may provide slightly more.
• Fibre amounts will be something I carefully monitor as Henry’s low tone does make it more difficult for him to fill his diaper.

Steps to Blend:

• steam carrots, broccoli and apple (I toss them all in the steamer together)
• measure milk into Vitamix Blender (add liquid ingredients first as this makes it easier to blend.  I made the mistake of adding the milk at the end last time, and it was very hard to get it incorporated into the drier ingredients).
• add pre-cooked items:
• rice – cooked per package directions;
• chick peas – bulk dried peas, soaked overnight, cooked until tender approx 45 minutes;
• chicken – BBQ, blended slightly, then frozen into 1 ounce cubes.
• add fruits, steamed veggies and oil
• add cereal
• blend until all ingredients are incorporated into a smooth mixture.  This could take several minutes depending on items.
• my one semi-complaint is that the Vitamix blender is REALLY loud!  I can blend for a minute or two with Henry in the same room, but more than that and he starts to cry (plus I’m sure it’s bad for both of our hearing).  So, it’s hard to make the formula when he’s awake, but it’s too loud when he’s napping.  So far I’ve done the final blending when my hubby is at home and can take him into a different room to play.

My goal was to match the calorie density of this formula to that of his commercial formula (24 calories/ounce).  To do this, I blended all the required ingredients in the Vitamix Blender.  I blended for about 4-5 minutes until it looked completely smooth. I then added additional water until the total volume was approximately 5 cups (40 ounces).  This total volume gave me the calorie density I was wanting (thank goodness my hubby is a math guy and can do the calculations for me!).

Since Henry is not yet receiving the homemade formula for every meal, I froze the mixture in ice cube trays – each cube is 1 ounce (I measured them using water and a 30 ml syringe).  There is some discrepancy between the Vitamix blender container and the ice cube trays, as the container showed 40 ounces, but I only had enough formula for 37 cubes.  Not a huge deal, but something to keep in mind moving forward.

As I said, Henry has received this new formula twice so far and it’s been great!  No vomiting, no retching, almost no drool to be seen.  I am curious now whether his intolerance to the commercial formula was due to the calorie density, or perhaps something else.   Perhaps it is the high amounts of corn syrup in the commercial formulas… or the “thinness” of the liquid… or… ?.  I  don’t yet know the answer to that (and I suppose I may never know), but who cares… the real food  is working!

Moving forward, my plan is to…

• start increasing the number of times/day Henry receives the homemade formula;
• slowly start increasing the calorie density of the formula and see what happens;
• continue including new foods each time, especially in the fruit and veggy categories;
• look into using some of the expressed breastmilk we have frozen, instead of the whole milk.  I need to do more research to see if the calorie, calcium, etc are comparable.
• create a spread sheet or find a nutritional website to help manage menus and make it easier to calculate totals each time (I am NOT a math person!).
• if anyone who either has a spreadsheet template they would share, or knows of a good website…  I would love to hear about it :).
• follow up with our pediatrician to have him review some sample menus.  Does he recommend any supplements?   Vitamins?  Additional ingredients?
• Once Henry is fully on the homemade formula (hopefully!), I would like to try using different ingredients at different times of the day.
• for example: a “morning” menu of fruits, yogurt and granola; an afternoon menu of veggies, meats and milk, etc
• This way he will get different tastes throughout the day and closer approximate typical oral eating.

Cheers, Shelley

Continued success

It’s Saturday night, and Henry has received homemade formula for lunch since Thursday!

Yeah!!!!

I’m over the moon pleased with how well it’s gone.     🙂   🙂  🙂

I’ve stuck with the slightly watered down version – 120ml formula mixed with 75 mls water = 150mls total volume, and have increased the volume each day until he got his full 150ml.   Thursday and Friday went wonderful… no distress, no vomiting!

Today… not so good.  Henry woke up sluggish and didn’t seem himself.  He threw up his EBM for breakfast, his homemade formula for lunch and the commercial formula at afternoon snack time.  Only very small amount each time, but he had huge amounts of phlegm buildup, and was completely distraught.  Usually when he gets sick, he’s happy afterwards… his tummy feels better.  Not today, he was upset most of the day, and never napped.  Dinner went better and by evening he was back crawling after the cat.   I think maybe it was his low tone making things hard.  He’s been trying to fill his diaper all day and this often causes him to vomit.  Will buy some prune juice when I go shopping next and see if this helps.

I have enough homemade formula left in the freezer for two more lunchs, so am planning my next menu.  Going to try to match the 24 calories/ounce that he gets in the commercial formula and see how he does.  Think I’m going to continue with just lunches for a while longer and see how he does.

I’ll let you know more about his next menu and how it goes!

On another note… Henry loves baby mum mum crackers!  We have been trying encourage biting and chewing, so have always given him little pieces of food to play with.  Lately he has been loving the crackers, and when Shawn gave him a whole cracker yesterday, ho chomped his way through the entire thing!  He doesn’t actually chew and swallow yet… but he does bite off pieces and then spits/drools them out of this mouth.

But who cares!!!

He’s willingly putting food into his mouth… this is great!!!

Cheers, Shelley

Some initial success & new-found help

I did some more research online a couple of day ago and found some great blogs from other mom’s. Full of useful tips about ingredients, timing, volumes, etc.

1. http://www.samuelsformula.com/
2. http://ainsleyrae.blogspot.com/2009/01/blenderized-diet-for-g-tube.html
3. http://psychmamma.wordpress.com/2010/12/28/homemade-blenderized-formula-for-g-tube/#comment-3532
4. http://prayingforparker.com/1707/blenderized-diets-for-g-tube-fed-kids-featuring-greensbury-market-oranic-beef/

We’re back on EBM now, mixed with 1.5 tsp of formula powder increased the calories. Henry tolerated it well for breakfast this morning. Will do 2-3 times per day, as our supply lasts.

Tried his homemade formula for lunch yesterday and he kept it down!

Did 4 cubes of homemade formula (120mls) mixed with 75mls of water. End result was about  150ml. And it was thin enough to go through the pump. While this isn’t that important, at lunch Henry usually falls asleep while having his milk and has a nap – so easier to use the pump than a syringe. Only gave him 100mls of the formula. He was asleep and not showing signs of distress, but I didn’t want to overfill his tummy given then new foods. I know it’s not sustainable longterm, but I figure it’s ok while starting. He ate again at 3pm snack time and that stayed down just fine with no signs of distress. So it think he digested it just fine! Going to try again tomorrow at lunch time, and try for a larger amount. Because I watered it down and didn’t do the full amount, I don’t know how many calories were in it, but I don’t mind. Henry’s doing well and one meal a day of experimenting is ok, in my books.

I read in one of the blogs that people digest heavier foods better at midday, which makes total sense… that’s when alot of people eat their largest meal. So better to give new foods then, versus for breakfast or evening snack.

New Supporter – his pediatrician

We had a GREAT appointment with our pediatrician two days ago. The man who has up until now has always said that weight is the end-all-be-all of determining health agreed that, although  Henry is not currently gaining much weight, he wasn’t eager to make any changes or do any further interventions. He actually suggested just waiting a bit  and seeing what happens – and we didn’t even have to suggest it first! Plus.. and even better… when I asked him about making Henry’s formula myself,  he thought it was a pretty logical idea and couldn’t see any reason not to try. Finally… someone who agrees!!!! Admittedly, he said he doesn’t know  too much about it, but said he’s do some research prior to our next appointment and see what he could find out to help. Yeah!!!!! I felt like hugging the  man. After being told no by the dietician every time I bring it up, it feels so good to have someone on my side.

Cheers,  Shelley