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Apollo Update {Pulmonologist}

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Apollo (13 months) had his appointment at the Pulmonology Clinic at Seattle Children's Hospital yesterday. As luck would have it, Apollo woke up four or five days ago and his breathing was suddenly silent. The wet, rattle-y sound he's had since at least last Decemember, had suddenly vanished. This would be good news, I suppose if he weren't headed down to Seattle because of his noisy breathing.

In reality, it didn't particularly matter. 

The pulmonologist said he coud still hear the stridor and in fact, since the wet sound was gone, the underlying "wheeziness" was more apparent (to me, I'm sure the doctor could hear it anyway). The doctor observed that Apollo retracts somewhat when he is breathing, even just sitting on my lap. And this is with Apollo as heathly as he's ever been in his life.

After a thorough history and exam, the doctor said, "Basicly, what I see, is a kid who is breathing through a straw. He has to work way too hard to breath. It's like he's running in place all the time.  That's the amount of effort he puts into breathing."

The doctor believes he can't consistantly put on weight (he's still less than his peak weight) because he is expending so many calories just trying to breath. And of course he's a very active baby. He wants him to put on weight at any cost. The doctor wants him on a "high caloric supplement".

As to why this is all going on, he didn't have an answer. He said a probable senario is: Apollo had an obstruction in his upper airway (trachea perhaps) which caused him to reguritate his food, which caused him to reflux into his esophogus, which caused damage to his esophogus and voicebox, which caused the wet/rattle-y breathing. The reflux medicine has taken care of the acid in his esophogus, it has finally healed, hence the now quieter breathing.

But none of that tells us why.

When I asked about the obstruction he said that we could do a bronchoscopy but "no one would be jumping to do that. We don't like to do it during flu season or when a person is sick" and he continued on about why not to do the procedure. It looks to me like it is much more invasive than the camera the ENT stuck down his throat and would likely require sedation if not anesthesia.

Right now the plan is:

* to have Apollo gain weight and get back on the growth chart (He is currently in the .54%. That's right, out of 100 babies, half of one baby would weigh less than Apollo. Don't you love percentiles 😉

* go back to see the pulmonologist if any thing changes/worsens

* follow up in three months

We then saw the nurtritionist who said she had a high calorie forumla he could try. I said he was allergic to milk and she responded that they have a great soy formula. I asked if there was anything non-soy (I avoid it for a variety of reasons) and she looked right at me with a smile and said, "Well, most people who are allergic to milk are allergic to soy too!" Then WHY did you just suggest I put my sick, underweight baby on soy if you KNOW he is likely allergic to it?! I always wonder in situations like this what happens to the parent who is less informed or less assertive?

So she brought in another formula that is made of who knows what. I could only read two ingredients on the can and those two were corn syrup solids and safflower oil. Yes, this high calorie supplement is, in fact, made up of 54% corn syrup solids. So, apparently fattening him up on pure sugar is just fine. He's suppose to drink two eight ounce bottles of this stuff a day!

Really? I feel like I'd be better off dumping 1/4 cup of raw sugar in his morning oatmeal if it's just about the calories….

The only other suggestion she has was to add olive oil to his food. That I'm totally fine with. It's high calorie and nutritious (Chuck went out and bought some last night).

I will be discussion the supplement with Apollo's doctor and making an appointment for him with my midwife/naturopath. 

So, once again it feels like we are just sitting around waiting to see what happens. I've been told my baby constantly struggles to breath, but hey, we'll see how he feels in three months.

*sigh*

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45 Comments

  1. Kate

    Ugh. I’m so sorry. I have a little guy who is five and has a very serious, untreatable, progressive genetic disorder. It took over 2 years to get a diagnosis and it was SO hard to be told over and over that he was sick, he was fragile, etc. but that no one knew why or what to do . . . sometimes the lack of urgency was appalling. When he was almost 3 he started losing a pound per week (he was underweight already) – the GI said he’d see him in 4 months. (!!)
    Apollo and my son are very different
    medically, but I just wanted to send you a cyber hug from another mom of a kind of big family (8 dc) who understands how soul-wearying it can be to chase answers while trying to help your baby get better!!
    Blessings,
    Kate
    http://www.prayingfornoah.com

  2. Vivian

    doesn’t it feel like you are running in circles?
    praying for God to show them the “way” to help this precious little guy!

  3. Lisa

    Oh Apollo….just a sweet little mystery boy he is. 🙂
    Still praying for answers but thankful he is in good hands…yours and Gods!
    Sometimes drs are like computers, can’t live with ’em, can’t live without ’em. With my youngest we’ve had way too many visits to drs., specialists and lots of guesses and no definite answers. When we decided to get off that ride the main pediatrician seemed to have gained respect for our opinions now. Go figure!
    (I am in no way comparing our sons journey with yours because ours was minor compared to Apollo’s). Just sharing our mutual frustration with the wait and see, no answers agenda. LOL!
    Praying for his healing and weight gain!

  4. JCF

    I generally have a personal policy of not offering any unsolicited advice, so please ignore/delete if you wish. A good source to contact might be your local Weston A. Price Foundation chapter leader. He or she may have some good suggestions for some real foods that might help Apollo gain weight, while avoiding corn syrup and soy and taking his allergies into consideration. Coconut oil may also be a good way to get healthy fat into him (Nutiva brand, sold on Amazon, is a great brand for a great price).
    All that being said, I’m sorry you’re still dealing with “wait and see” and getting frustrating medical advice. I hope you can find some more solid answers soon.

  5. Taryn

    Hi Renee,
    I just wanted to share this link…my young cousin who is 9 has been having similar problems since he was a baby…he has been tested for allergies, cystic fybrosis, celiacs and a bunch of other things…his next test is for Eosinophilic esophagitis…don’t know if you’ve heard of it but thought I’d point it out in case you want to have a look….
    http://www.chop.edu/service/allergy/allergy-and-asthma-information/eosinophilic-esophagitis.html
    Hopefully whatever it is causing Apollo troubles you will be able to find out sooner rather than later. Sending hugs and prayers your way.
    warmly,
    Taryn

  6. Sally

    Oh dear. Poor little guy, and poor you! My nearly eight (though severely delayed) year old had pneumonia in June, once he was off oxygen he was still breathing hard for a few days, and I can’t imagine a kid having to work that hard to breathe all the time!
    While we were there the new paed (our amazing paediatrician retired a year ago) created a big drama about his weight, though in our case he went about it entirely the wrong way. Anyway, we also have dairy issues and have a dietician appointment this afternoon, so I’ll let you know if we get any more help than you did!
    Avocado is another great food, and if you wanted to go the supplement drink route you could make smoothies with coconut cream. That could be a base to throw high protein foods in (spinach, nuts?), with bananas and/or a more natural sugar, and even cocoa is pretty nutritious.

  7. Lauri Kozier

    I can feel your frustration! ((hugs))
    I’m wonder how Apollo would do with a high caloric smoothie – maybe with almond milk, fruit, coconut oil, flax oil……? Even some good pure whey powder – for protein?
    I am praying for Apollo, you and your family!

  8. Tracy

    That is so frustrating. I am sorry you didn’t get real answers to the whys and it sounds like no real help for his breathing. aaargh!
    I wish for you that they would treat the real problem and not just try to treat the symptoms. Guess it makes too much sense that if he could breathe easier, he would be able to gain weight. This is why I so dislike going to the doctor.

  9. sheila

    Please make sure his reflux has been taken care of before adding olive oil to his food! I can not stress this enough!!! Long, very sad story short….our Hannah was born early…very small…NICU added olive oil to her breast milk tube feedings….they did not test her for reflux….it coated her lungs and destroyed them. She died at 14 1/2 months. Also know that she was given the olive oil for many months…I am not trying to frighten you…just want to make sure it never ever happens to anyone again if we can inform them.

  10. Renee

    Sally, thank you for your words and thoughts. I agree, certainly I can make some kind of high calorie smoothie for him. Thats why hell be going to the naturopath, I want to make sure Im giving him something his little system can take and that will build it up, not rip it to shreds (like corn syrup!)

  11. Renee

    JCF, unsolicited advice is officially solicited! At this point I am willing/happy to look into any leads. I have gotten several emails from doctors who have read my blog as well. Who knows what/who will lead to discovering his problem. And YES, I want him to bulk up from reall food, NOT sugar. Thanks for the suggestions.

  12. Barbara

    Maybe goats milk? Often times kids will be allergic to diary but do fine with goats milk?
    I do think coconut oil would work too.

  13. Mommaofmany

    Renee, one of the best foods you can give him should be coconut: coconut cream, coconut milk and coconut oil. Add them to all his food, make smoothies with veggies, fruit and fat, cook with the oil, spread it on bread or stir it in oats like butter. Add avocado also. High-quality fats will keep him nourished! I’m so glad for you that his noisy breathing stopped, even though it’s frustrating that it stopped when it did. I hope you get answers sooner than later. Did you discuss the possibility of a pulmonary fistula with him?

  14. Heather

    I agree with looking up Weston A Price Foundation. And I second the coconut oil, it tastes yummy too 🙂 I would think all that sugar in the high calorie formula would just lower his immune system. I will be praying for you.

  15. Danielle

    My son had a heart defect and had to be tube fed because he would not eat. When he was on the tube, and when he was able to come off of it, we fed him only high calorie foods. A lot of the suggestions people have made are great. Flax seed oil still gets added to pretty much anything I can mix it into for my son. I also add a probiotic supplement to his smoothies and milk to help his digestion and immune system. For kids who are not big eaters because of reflux this can be a big help.
    If you look on some tube-feeding message boards, some more naturally minded parents have come up with their own high calorie “formulas” to use instead of the traditional stuff. I also know of a mom who blogs whose husband is a doctor and they have been thinking about making a commercial high calorie formula that is made of whole foods and has actual nutrition, not just sugar and chemicals. Her blog is http://www.shiftinglife.com and I am sure she would email you about it.
    Good luck, sending love and prayers.

  16. naancy

    If that’s the same Kim Bauer that was at one of my children’s births, she’s FANTASTIC! Knows her stuff. I echo the coconut oil- same fatty acids as found in breastmilk. Also, my new favorite treat is avocado chocolate pudding. Whirl up at avocado and some cocoa powder in a food processor. I add a splash of milk and some vanilla and stevia. It’s fantastic, creamy and delicious and good for you. You could put in some good sugar, and milk substitute. LOTS of good, healty fat for him. Hang in there Rene!
    Blessings,
    Nancy

  17. kris

    LOL..of course! That’s how little ones roll, at least in my house. 🙂 Keeping you all in my prayers that you find some good options when you see your own person. And that his breathing gets better. My youngest sister was born premature (many moons ago) with under developed lungs. She looked a lot like Apollo, so skinny and those little ribs sticking out. She burned a lot of calories just breathing. At some point she saw a new doctor and he basically said “holly cow she is underweight”, changed her meds and told my Mom to put her on a high cal diet. Of course my Mom felt awful. I will say she’s always been the thinnest of all the kids and still is at 31. And she’s been a spit fire her whole life!

  18. Mary

    Oh, Renee, my heart goes out to you. I was really hoping that this hospital would be able to give you some answers. Apollo will continue to be in my prayers and I’ll be praying that some of these natural food suggestions will help him to gain weight. This all must be SO frustrating for you and Chuck. Blessings to your whole family.

  19. Amber Hanshaw

    We had a pediatrician recommend putting butter in/on everything my son ate to get him to gain weight. I admit I am not all that particular about our kids’ diets, but I could not believe that a doctor would suggest butter on everything! We’ve since switched doctors.

  20. Lara Moore

    Thinking of you all!
    These are all great suggestions made by everyone here…I would only add that sometimes children tolerate raw milk as it is essentially digested differently from processed milk. Do look at the Weston Price Foundation, meat broths, soaking grains, they have many “old fashioned” ways of preparing foods that make them easier to digest for the whole family as well as for those who need extra nutritional support.
    You will figure this out! You are one smart cookie:)
    Lara

  21. Angela

    Praying for you guys, I am sure you are beyond frustration..
    I was also going to reccomend coconut oil and coconut cream etc. The Nutiva brand is good quality and a great price. If you add it to smoothies or yogurt etc, melt it first and stream it in while mixing.

  22. XK

    Hey, I’ve been reading your blog for a while now (my boy is 14 months, just about the same age as Apollo). My sister Carrie (http://www.organicthrifty.com/about/nutritionconsultations/) is a fabulous nutritional therapist here in Portland. She does remote consultations, and, coincidentally, she also happens to have first-hand experience with traumatic birth.
    Soy formula… sugar… sometimes I wonder about the “experts.” Take care, my prayers are with Apollo!

  23. Kay

    Lurker here. I know a child that has the exact same symptoms and it is due to subglottic stenosis. Not sure if anyone has mentioned that before? I don’t know enough about it to know if it would be something obvious to the doctors or not.
    The child I know is extremely underweight, has severe reflux, hoarse/breathy voice, and he’s constantly sick. His mom told me that it’s like he’s constantly running up stairs and breathing through a straw. Eventually he’ll need surgery to open his airway more.
    I know it’s a long shot but Apollo’s symptoms sounded so similar to his that I thought I should mention it!

  24. Heather B

    It is so disconcerting to hear the ridiculous things professional medical people say. It seems like a bad plan to fatten him up with corn syrup. Aren’t they planning to one day have him not burning a zillion calories to breathe? It would be nice if he was on a real food diet so when his breathing is “normal” he can easily lower his calories. It would be very unfortunate to trade his breathing issue for an addiction to sugar.

  25. Renee

    Nancy, this Kim is a midwife, so I imagine its the same one! I photographed a birth she was at where the baby didnt not breathe on his own right away and she was AMAZING!

  26. Ingrid

    “Breathing through a straw” sounds like asthma. Has that possibility been ruled out?
    Taking steroids on a regular basis as many people with asthma need to do doesn’t sound like a great idea on the surface, but trust me — as a mild asthmatic, simply being able to breathe is worth just about anything! I’m sure you can relate to that feeling on your son’s behalf, at this point.
    Ingrid

  27. RebeccaK

    Echoing the Weston A. Price/coconut recommendations. Coconut milk is very calorie-dense, and it’s easy to order cases of it, or make it yourself from shredded coconut. They also have homemade formula recipes, including one based on bone broth.
    Also wanted to throw out that if there is *any* way you could get a reference to the Mayo Clinic, they do exactly what you are looking for. . . they take mystery cases, re-do all testing, and get an expert in each relevant specialty into one room to discuss the patient’s case together.
    Hugs to you and your sweet Apollo!

  28. Kate

    Have they discussed nebulizer treatments, would that help at all?
    @ of my boys have asthma, one you would not know except he is often sick, not sure if it would help your little guy but worth a shot, we didn’t realize our one ds was so bad until he was seen by an allergist.

  29. Reka Morvay

    Hi Renee, both my girls are allergic to dairy and soy. When I was doing research to find alternatives to formula, I came across a formulation for meat-based formula. Sounds kind of yucky, but if you want him to bulk up, he needs protein as well as calories (which, as you know, fats have the most of, gram for gram).
    Also, I wouldn’t put whey in his smoothie, since that also comes from cow’s milk and can trigger his allergy. Same with goat milk, most people who have a cows milk allergy are also allergic to goat, since the proteins are about 80% the same.
    Is Apollo still nursing? If so, you could express milk and take the cream off the top to add to his food. There is also a machine called a creamatocrit that does the same thing, but can also regulate the amount of fat (and thus calories) in the resulting milk.

  30. Renee

    Reka, he is still nursing. So far I have utterly failed in getting him to eat anything through a bottle/sippy cup. He just doesnt want to eat 🙁 Thanks for the heads up on the meat based formula. I think theres a recipe for one in Nourishing Traditions.

  31. Sarah

    Renee,
    I know you are swamped, but if you want to seek more help, contact National Jewish http://www.nationaljewish.org/ They are a childrens research place for breatheing problems. They (were when I was a kid, maybe still are) number one in the nation. They know their stuff and do not encourage over dosing of meds. They encouraged me not to be on meds, and taught me how to manage my own perscriptions so docs would stop making me sick. Good luck!

  32. Mary Grace

    I see you’ve gotten tons of advice on the coconut oil already, so I won’t repeat, but just chime in to say that this is what keeps Oli steady at his “just slightly under the charts” weight. Without the amazing amounts of coconut milk, oil, etc., I have no idea how little he’d actually weigh. (He is almost 5 and is not quite 30 lbs.)

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