Need advice... one year with apnea, anemia, and frequent infections... facing surgery as well

[triscuitsmom]

OK this might get long but I could really use some outside eyes...

DS2 (aka Frog) was born at the end of January, 2009. He was born at 38 weeks (early for me, but still full term I guess... I felt he was not quite ready yet). Almost 8 pounds at birth, good APGAR scores etc etc. Exclusively breastfed.

About a week after his birth he started having apnea spells. He'd turn blue and he would not start breathing again unless touched/stimulated. I had him to our family doctor and the hospital and was brushed off. This continued and continued. They would happen anytime he was sleeping, day or night... I felt like I couldn't put him down without wondering if he'd still be alive when I came back I kept being told he'd outgrow it. Finally we got referred to a pediatric respirologist but by the time we got the appointment he was already six months old. We went for the first appointment and I cried with relief. He believed us, he validated that this was not normal and was a problem, and he felt strongly that us keeping him with us at all times (cosleeping, wearing him etc) had likely saved his life.

He by this point was being treated for reflux as well. He'd also had a couple of infections already. Pneumonia at 10 weeks old (which involved a couple of day hospital stay) as well as ear infections. Although the respirologist was supportive he didn't really have any answers for us either. Through all of this Frog met all of his milestones early and was in the upper percentiles for weight and gaining height quickly too after being short at birth.

Just before a year old a couple of things happened. We had bloodwork done with our family doctor because he was losing weight and screaming a lot of the time (both VERY unusual for him up to then) and found out he was anemic. He won't take the iron supplements, even if we force them down he throws them back up (this is a kid that has no problem taking meds usually).

We also had an appointment with the respirologist and an xray was done to check his adenoids on the recommendation of a resident. Despite his young age they were very enlarged. Because he is now snoring as well we were referred to a pediatric ENT. He suggested taking the adenoids out and putting tubes in (the tubes being for the recurring ear infections he's had throughout his life).

So at this point his immune system still sucks, he catches everything. He's also had a reaction to cephalosporin antibiotics and can't take those anymore. As far as I know he's still anemic. The apnea spells have gotten much less as he's gotten older (only at night now, and only when he's sick). Still refluxing, still snoring.

He's scheduled for surgery on Thursday. They won't do it unless his hemoglobin is higher, although we won't know what that is until the day of. I don't even know anymore if that's the right choice. I feel like there is so much going on with his little body.

Thoughts? I'd really appreciate any feedback. If I left anything out let me know.

[sbgrace]

In my experience with my son I felt then (and feel even more strongly now) that when you have multiple seemingly unrelated issues going on you have to look at conditions that might tie them together. I see a tie but, admittedly, I'm reading your (sad) situation with the eyes of my own sad situation so I could be off. If I am keep looking for what ties them together.

I'm going to throw stuff out here but it's just stuff, you know:

He's got reflux--hence screaming and losing weight--signs of severity in my experience. It may have gotten worse at a year it sounds like. Did he outgrow his medication dose possibly (what med/how many times per day--marci kids site has excellent information about dosing properly)? Did his diet change at that point? There is a link between reflux and ear infections, enlarged adenoids, (resulting) apnea, and very (very) possibly those episodes he had when he was a baby as well. http://www.marci-kids.com/eerpharynx.html What you describe with the episode isn't uncommon in severe reflux babies. So severe reflux is a huge part of your picture. I'm not sure if his pain is well controlled now or not. How is his growth at this point? Does he seem to be in pain?

I'm a strong advocate of adequately medicating reflux. I've seen what happens to kids without adequate control (my son, he wasn't dosed correctly until he was 18 months and it wasn't pretty at all). I'm thinking your son isn't adequately controlled. I would look into zegerid 3 x's per day according to dosing guidelines on the marci kids site if possible. As the website states compounded prilosec has issues with stability and potency and that was part of my son's issue (he was also dosed twice per day rather than three times). Zegerid is preferred because it works regardless of food in the stomach. Others need to spaced out from food and that's impossible with a young child. If you can't do Zegerid make sure whatever the PPI (he is on a PPI I hope...) is dosed according to guidelines at Marci kids which will be three times per day (and will be in your doctors book but take the marci kids information in too just in case). If it's prilosec it needs to be compounded every two weeks--they can write the script that way. I would also strongly consider a tucker sling for him. That will keep him elevated at night helping with the reflux and, hopefully, helping it stay out of his ears/throat/etc.

And the iron I suspect is related too. It's possible (likely in my mind) reflux and/or meds are part of your iron issue. What iron forms did you try and how long ago did you try it? Will he eat iron fortified foods? I'm going to strongly suggest you try a ferrous bis-glycinate (ferrochel is a brand name) because that form will raise him much faster (without slowing down his gastric system/giving him constipation which slow digestion you definitely don't want in a reflux kid). It's absorbed 3 x's better than other iron forms and without gastro effects. He's rejected stuff so I know it may not work. But anemia is horrible for him in every way and so something has to work so I'd go at this again (even sneaking it in at night if it comes to that). Given his rejections previously I'm going to suggest http://www.koshervitamins.com/shop/s...zmap=MXS-17608 this even though I've not tried it. It's the one liquid form of this type of iron and this type is what you need imo. You could put it in something else if he rejects it too (orange juice...I don't know). I'd try it at night. And we got really good at giving my son meds so he couldn't spit them out (toward cheek way in back with chin tilted upward if I remember right).

I would want this child's immune system checked (formally--IGA levels, etc).

If he continues to struggle with growth after reflux is controlled you want him checked for malabsorption.

Is he on track developmentally? How about gross motor milestones (holding head up, rolling over, pulling to stand) on time?

[chlobo]

I agree with checking out the above. We are in a situation of enlarged adenoids (not as severe as yours) and we're in the process of exploring other options before surgery. Adenoids are part of the immune system. They are one of the first lines of defense. If you remove them, it will have an effect on other systems in the body. If his reflux is causing the enlarge adenoids and you remove them, what damage will the reflux do next? Hard to say.

Also, I have heard several stories of adenoids growing back. The doctor who was telling me said it was likely the kids had food allergies and because that wasn't addressed, the adenoids grew back as an immune response. I think going through the surgery once would be bad enough, but twice would be horrible.

This is anecdotal, but another doctor also told me that it can be a symptom of food allergies to walk early & meet milestones early. Sounded weird to me but both my kids have allergies (intolerances really) and both walked at around 10 months.

I guess my advice would be to keep digging. I would look more into the reflux issue. I would also explore allergies (IgE & IgG). If you are able to financially, I would probably try to find a naturopath who has worked with kids with sons kinds of problems and see what advice they give. It might be you still have to do the surgery but you can also do things to improve his immune system going forward. I might also look into some structural work - maybe chiropractic or craniosacral. We found someone in my adrea who is a "craniopath" and has worked with a lot of kids with enlarged adenoids & helped them avoid surgery.

There is a book called "Childhood Ear Infections" that talks a lot about alternative ways to deal with ear infections. You might want to check it out.

Sorry I'm rambling. I hope some of this has been helpful.

ETA: I just wanted to mention that the apnea is likely due to enlarged adenoids. It sounds like his adenoids may have gotten worse lately so its not surprising that he has more of those episodes.

[sbgrace]

OP, I can suggest things that research shows boost the immune system. But I wouldn't do them until I had formal testing of immune function. You need to know if there's an underlying issue.

If adequate PPI treatment (Marci Kids guidelines) don't result in improvement in reflux you have to look at things like eosinophilic esophagitis.

[Satori]

To tired to elaborate but I agree with Sbgrace, reflux and check for immune def issues. Repeatedly being sick can cause anemia, a single bout of pneumonia can cause a 2-4 point drop in iron levels.

[triscuitsmom]

Thank you sooo much for the advice everyone. I went ahead and cancelled his surgery for today. We also made an appointment with the Naturopath, who was able to get us in today on a cancellation.

She went over his history with us and the bloodwork he's had done. She thinks given the family history as well as his own history he is likely gluten sensitive as well as possibly dairy. We did allergy testing today and she gave us some things to try and boost his immune function. Because a lot of his chronic problems started after he got broad spectrum antibiotics for the first time (which he also had a severe allergic reaction to) she really wants to heal his gut as well.

We are going back in a couple of weeks to get results and see how what we have is working. She didn't do more blood work although she will at the next appointment and I wasn't 100% sure what to request.

I feel like we have a starting place, and someone who is listening to me and taking his whole body at once into account. I don't know what the end result will be but hopefully we'll have some answers sooner rather than later.

Thank you again for the help and I am open to any other viewpoints or suggestions. I'm going to look into that different iron supplement as well!