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A Little More About Apollo’s Health

I get comments and emails in regard to Apollo's weight frequently. His weight is what made me realize he had a "problem" to start with. He's always had feeding/nursing issues but as a young baby he gained weight well. I weighed him monthly for my own records. He weighted exacly 14 pounds at four months. He still weighed 14 pounds at 5, 6 and 7 months which is when I began taking him into our doctor. Here is a little photographic evidence of what we have watched happen to Apollo.

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This is Apollo in September 2010. He was three months old. 

 

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Here is Apollo (in the same swim suit!)  in January 2011, at six months old. He begain shrinking before our very eyes. This is what the doctor has found so worriesome.

On top of that he is a baby who still doesn't eat or nurse well, has noisey audible breathing, doesn't sleep well and spends much of his awake time fussing.

I forgot to  mention (and I am writing it here because this is my family record) the doctor said there are no other tests to be done at this point. He said, "I feel we've done everything for now. He's been to the ENT, they sent a camera down, he's on reflux meds, he's off of dairy, he's had x-rays of the soft tissue in his throat and he's been tested for cystic fibrosis. The next step is the bronchosocpy". But he can't do the prodedure of course.

At this point, after thinking and researching for a couple of days, I haven't totally decided whether or not to fight to get him in sooner. Even if I get him an earlier appointment with the pulmonologist he may not be happy to see me again so soon and probably won't be willing to do the bronchoscope sooner. He is hoping the stridor improves. Apollo has gained 11 ounces on his high fat diet (and we've fought to get every bite in his mouth). My concern is if we wait until his November 22 appointment it will be too late to schedule the bronchoscopy before flu season is in full swing.

There are no pediatric pulmonologist in our city (that I'm aware of) for a second opinion. Everything in the ear/nose/throat department has been ruled out.

I just want my little man healthy….

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27 Comments

  1. Suze

    I feel for you I truly do. My last child was classed as failure to thrive. At five she was finally diagnosed with migraine. The right medicine made an overnight difference. Before that she had multiple ENT surgeries and admissions for extreme vomiting etc. It is terrifying to watch a child not grow and then shrink.
    I hope and pray there is a solution for you. It saddens me to read that little Apollo is fighting to breathe, sleep and eat.

  2. Jean

    Foods can cause wheezing, raspy noises, horse voice, etc too. I have a lot of food allergies and am active in causes relating to food allergies. He might be allergic to something that you’re eating and are passing to him when nursing. Some common foods that can cause wheezing are eggs, dairy (you already cut that out), nuts, beans. But it could be anything, really. Has he gone to a pediatrician who specializes in allergies? I am not a fan of holistic allergists (they are not MD’s) because they tend to tell the person that they are allergic to everything. But a doctor who specializes in allergies is someone to look into.

  3. Emily

    Poor Apollo! Those photos are a great visual way of showing how little weight Apollo has gained. He is such a cutie though.
    My only advice is don’t give up! Put pressure on the doctors! You are his mother and you know him best! My younger brother was in and out of hospital for the first 7 years of his life, he had allergies, severe asthma and other ‘unknown’ problems. The doctors kept telling her he was depressed and ‘just in a stage’ but my mum kept pushing the doctors to ‘prove’ what she had known for years, that he was intolerant to steroids. The doctors put it on his record when he was 7! She fought for him because she knew what was right. There were many doctors that wouldn’t talk to her, but she found one doctor who would listen.

  4. Kara

    There might be another pulmonologist at Children’s he could see. They don’t tell you that, but there is usually more than one. Call down and ask for a patient advocate. Tell them that you didn’t really feel a rapport with the one you had seen and are worried that it won’t go over well if you ask for the test to be moved up. They might be able to get you into someone else. Tell them your concerns about having the procedure done during flu season and about the fact that the breathing worsened right after the last appointment. At the least they might be able to smooth over the process of getting the test sooner.

  5. Julia

    Hi Renee, I meant to post something about TCM but forget whether I actually got around to doing it. I wanted to ask whether you had considered/looked into traditional chinese medicine for Apollo? We have used it very successfully to build up the immune system of my son who is very prone to bronchitis because of a birth defect. Last year, we started in August and continued all through April and he never had anything more serious than a mild cold/cough. In additon, I had the feeling it had helped his appetite (he is a very poor eater, possibly because of that very same condition (although he doesn’t know it differently so we will never know for sure) and made his way from below the 3rd percentile very very slowly to around the 15th. Still not great but improvement!
    In any case, praying for this cute little guy! He looks so happy and active in the pictures, it is hard and heartbreaking to picture him suffering so much!
    Julia

  6. Heather C

    Renee,
    I’ve been following your blog for about 2 years, and I’ve never commented before. But I can’t imagine how awful it is to watch him suffering so much, and I want to let you know that I’m praying for you and your sweet little man.

  7. Lisa Meier

    Renee,
    I am so sorry for what you are going through trying to advocate for Apollo. I understand how difficult it is. I had a foster daughter who was Downs Syndrome and had severe issues. We went through a time frame with her that her Oxygen Saturation levels would drop at night to the point that it was setting off alarms, but as soon as she woke up her breathing was raspy, but her oxygen levels improved enough that her Pulmonologist wasn’t worried. I literally kept bringing her into his office, and had multiple trips to the ER in the middle of the night, only to have them tell me there was nothing wrong.
    Since he was literally the ONLY Pediatric Pulmonologist in Alaska, and he wasn’t responding to my pleas for help, I finally went back to her Pediatrician and begged them to just observe her overnight at the hospital. (I had spent weeks sleeping on the floor in her room because of how badly she was doing, and was completely desperate and exhausted.) Anyway, that night in the hospital they did a sleep study on her and after having to call in the PICU doctors because she was crashing, they finally listened to what I was talking about, knew what to look for and were able to help her.
    Unfortunately, some doctors have “god complexes”, they think that they know it all and they don’t truly listen to what you have to say. YOU are the expert on Apollo and you ARE doing the right thing following your instincts and not waiting for their timing.
    I looked up the Seattle Children’s site and found a listing of 16 doctors in the Pulmonology Department. Hopefully you can find a different doctor who can help you. Here is the link to that listing.
    I will continue praying for you.
    http://www.seattlechildrens.org/clinics-programs/pulmonary/your-care-team/

  8. Michelle

    Praying for you all, Renee. Personally, I would push the doctors into doing the bronchoscopy sooner rather than later. When Coley had his 5-9th surgeries (at the age of 22 months), his doctors realized how thin he really was. They didn’t realize that he was such a feather-weight guy until they picked him up to carry him into surgery. After it was over, the primary surgeon said, “He’s so thin!! We have to get some weight on him!!!” We pointed out that THAT was why we had been pushing them so hard. At the end of the day, you have to do what you believe is right for Apollo. Good luck!!!!

  9. Renee

    Lisa, I guess my hesitation is that this doctor wont listen to me. Our family doctor and I are on the same page. He doesnt see any reason to wait….but hes not the expert…and while I am confident my doctor listens to me and I have some influence over his decisions in regard to Apollos care, I dont feel that way about the pulmonologist. He doesnt know me or Apollo and probably has a couple hundred patients. He saw Apollo on a good day…I dont know that seeing him sooner will make a difference…

  10. Christina

    There is a video swallow study they could do before the bronc, the good news for Apollo is that he is developing normally! Although he is tiny (and I get that with my youngest who also hates to eat) minus the health issues to be developing normally on top of the issue’s is a blessing (he speech is better then my twins at 2 1/2! ) I get the unknown and stress as it is the life we are dealing with, in my case also the youngest.

  11. Susan B.

    I think I would also look into other food allergies. It really could be anything youare eating or that he is eating. We went vegan after learning the effects of meat, dairy, and eggs on our health. I would suggest a vegan diet to anyone having health problems. It’s a place to start. Maybe he has a problem with gluten, or an allergy to wheat or soy. I am thinking of you all the time and I hope you can get your little man’s problems sorted out. I know how difficult it can be dealing with doctors, they always seem to think they know better than you (they did go to medical school ya know..lol) and refuse to listen to you. Good luck.

  12. Robyn

    There’s more than one pediatric pulmonologist at Seattle Children’s. (I trained there). See another one. I am not up on who’s there and who is good but if you want I can contact friends a the hospital who are.
    Consider seeing a pediatric gastroenterologist as well, and discussing whether an upper endoscopy (camera to look at and biopsy his esophagus, stomach and upper small intestine) would be helpful in figuring out his problem. They might be able to do both a bronch and an upper endoscopy at the same time if it was planned in advance.
    I don’t know you except from your blog, but I worry about your little guy. (From a mom of 2 and a doctor).

  13. Cecily

    As a mom of a couple of medically involved kids let me encourage you to Push and push. You know in your gut things this doctor doesn’t and any doctor worth their salt will respect that. Also has Apollo had an echo of his heart. Some heart problems can’t be found without them and can manifest in breathing and eating difficulties. good luck

  14. Michelle, RN and mama to allergic kiddos

    Are you nursing? If so, are you gluten free? Giving up dairy is a great choice, but can you give up gluten? It will take a few weeks to tell a difference in him I haven’t kept up with your posts so maybe you’ve already tried. I highly recommend it!

  15. Peg

    Renee, I’m guessing this is a really, really stupid question, but is there any chance he has something stuck somewhere in his throat or esophagus? Something he could have picked up when he first started to sit up or creep, a small bit of plastic or even a seed? Sure hope you find out what is wrong and that he gets better soon.

  16. Melissa

    I’m sorry if this has already been covered, but has Apollo been tested for Celiac Disease? I know people have asked about it before, but I can’t remember reading that he’d actually been tested for it.
    I ask because my little guy had a first year very similar to Apollo’s. He was a chubby infant, then he quit gaining weight for a long time. He spent many months at 16 pounds. He also had wheezy breathing, made several trips to the ER and was admitted twice that first year with respiratory issues. He gained a little bit of weight on a high-fat diet, but then ended up worse than ever after his first birthday. He got very, very sick and at 18 months he was diagnosed with Celiac Disease.
    He is 8 years old now, happy, growing, thriving. All of his issues- both growth and breathing- completely resolved on a gluten-free diet.
    I hope Apollo feels better soon! All the best to you and your cute family!
    Melissa 🙂

  17. Renee

    Melissa- yes he has been tested for celiac. In some weird, sick way I was sad when it came out negative. I was hoping that was the relatively simple answer to his health issues.

  18. Renee

    Peg- I dont think thats a dumb question at all. Can you imagine if all of this was caused by a stray LEGO or something?! Hes had x-rays of his lungs and soft tissue in his throat and a scope send down his throat, so theyve ruled that out.

  19. Melissa

    Did they do bloodwork or biopsies? My son’s bloodwork came back negative so we assumed he didn’t have Celiac. We looked into other options and spent 9 more months off-track and getting nowhere. His biopsies were positive for Celiac Diease when he was 18 months old.
    I hope you get answers for your sweet little guy.
    Melissa 🙂

  20. Melissa

    I’d still consider Celiac as a possibility then. Bloodwork is very unreliable, especially in kids. As I said, my Joshua’s bloodwork was negative, but his intestines were severely damaged by the time we went for biopsies and he definitely has Celiac.
    Please just keep Celiac in the back of your mind as a possibility. Of course, you don’t need to run off for biopsies right now (because it’s a somewhat invasive procedure), but you might consider seeing a ped-GI sooner rather than later.
    I sincerely hope your little Apollo feels better soon. You are doing such a great job, Mama! Hang in there!
    Melissa 🙂

  21. Christy

    I am so glad I stumbled upon this post on your blog! My 18 mo sweetie L has tracheomalacia (strider), which we discovered in the first months of her life. She bf well, gained weight well but started tapering off around 12 months and has gained very little since then. She continues to bf well, thank goodness, as she really doesn’t like to eat food very much (max 3-5 ounces/day). She is only willing to swallow things with a creamy texture (ie: pudding, not apple sauce- it has too much texture). She happily chews and sucks on anything on our plates at meal times then spits it out. Sometimes she swallows crackers or things by accident. Her strider is becoming more pronounced in her second year of life when it is supposed to get better. Nights are the worst– I hate hearing the foghorn sounds get louder at various points in her sleep cycle. Our first experience with a pediatrician was awful…. told me to wean her and when I reacted to that advice she asked me if I wanted my child’s brain development to be affected. We had her tested for Celiac, iron deficiency and I’m sure other things you have as well (all negative so far). Little L is a perfectly normal 18 mo developmentally (more advanced than her sisters- 2 of them- in some ways at the same age, and less advanced than them in others). Wonderfully her. Just yesterday met with a new pediatrician and the doctor is just fantastic. She listened to me (almost 40 minute first consultation). Didn’t judge my parenting choices. Had the chest x-ray yesterday (negative, no obstruction). Soon to have the throat scope, and a feeding study to come. Like you I just want her to develop normally and be healthy. I have a feeling she’ll always be small (the doctors don’t seem to be able to agree on her weight- ranging from 17 pounds to 19 pounds). I’m just really tired of the comments from everyone about HOW SMALL she is (she still wears 6-12 month clothes) and then the forthcoming advice about how to get her to eat more food (of course #1 is wean her, grrr). I’m so glad I found this. I look forward to hearing how your sweetie does and medical path you follow.

  22. Geraldine Van Velthuizen

    I have a daugheter (now 6 years old) who had failure to thrive as a baby, and one thing that really helped was when I started feeding her bottles at night while she was still sleeping; I just put the nipple in her mouth and she would automatically start drinking and she wouldn’t throw it all back up like she did otherwise. I don’t know if Apollo would start sucking, or even if he could with his breathing issues, but you could try it, if you haven’t already. Two other things that helped, but I assume you’ve tried that, is visits to the chiropractor and putting digestive enzymes in his food.
    Geraldine

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