chronic cough, weeze and respitory distress since birth (21 months) conflicting diagnosis...help!

[Danielle13]

I could really use some advice and help.  My son was born at home in water, 10 pounds..so fairly good sized.  He started coughing at 12 hours old.  He coughed so violently that he lost his voice and made only quiet noises for 10 days or so.  He screamed constantly from birth until 3 months.  I tried everything.  Chiropracter (multiple ribs out) elinimation diet for me, different breastfeeding positions, chranial sachral, massage.  nothing.  Finally I went to our ped who prescribed zantac @ 3 months.  That stopped the screaming but I could still hear him refluxing, so I stopped at 4 months.

Over the 21 months we were in and out of the ER and the doctor with chronic respitory distress.  Meaning, severe retractions, blue baby, vomiting, ect.  That is how he is during sickness.  EVERYDAY he vomits from coughing, with every breath he retracts, everyday of his life he's coughing.  we spent tons of money on  naturalpaths, chiropractic care, suppliments ect.  At 6 months we were diagnosed with "asthma" with NO tests done what so ever from our ped.  at 9 months I couldn't take it anymore and I caved and gave him the asthma drugs.  No improvement.  Albuterol made him breath louder but he seemed to be better rested.  At 12 months we tested for comprimised immune system, to see why he was getting so "sick" all the time.  All normal.  at 15 months we doubled the dose and the quantity of the inhaled steroids and added high dose zantac.  No improvement, he was getting worse.  FINALLY at 20 months (last week) we were refered to a pulminologist at Seattle Childrens. 

He was the first doctor to tell me that it was not asthma.  He gave us high dose oral steriods because Lyric was sick when we brought him and he said he was shocked they were letting that kid walk around and not be admited breathing the way he was.  I said this was pretty normal and on a scale of 1-10 his breathing was a 7.  He said it was a 4.  Once the steriods worked and the weezing was gone he said it sounded like he was breathing through a straw.  He thought it was a vascular ring, and said he was 100% sure it wasn't asthma.  We tested for the VR and it was negative.  Dr Redding flew down to seattle again (we're in alaska) and will be up in may.  In the mean time we've been refered to a pediatric pulmonologist here to do a scope to try and find a narrow trachea, or another structural problem.  Except my peds case manager told me our ped isn't surprised there is no ring because she thinks it's JUST ASTHMA.  She talked to the pulmonologist here who I'm pretty sure she has also convinced it's just asthma.  Who told her with out evaluating him "it's probably not a big deal at all".

Keep in mind, we're a natural home.  We've tried everything possible naturally for him.  Our naturopath said it was time for us to see an MD, as did our chiropracter and chranial sachral adjuster.  All 3 said he was too sick and they could do nothing for him.  I'm not sure what to do from here...I don't really know anyone who's kids have asthma that breath like my son on a regular basis.  I don't want to fight my doctor if this is asthma, but at the same time I just don't think it is.  I've never seen a kid act like him.  Any thoughts, wisdom or advice?  Does this sound like asthma?  We've tried the allergy approach as well, no change and we eats healthy.  I need help, I'm not confrontational but will be if I need to be to diagnose my son. 

[heatherdeg]

I would cross-post this in Allergies, but also in the Parenting a Child with Special Needs forum.  Someone may have come across this in one of those.

As for me, I'm stumped; but yeah--don't let them bully you into believing it's something when even the specialist says "I don't think so".  That specialist may not have found the cause, but it doesn't mean that it's asthma--it means that asthma is the only thing the ped & other dr. there can assimilate it to.  :(

Hugs mama.

[ASusan]

I am sorry that I don't have much other than sympathy to offer you. If it doesn't respond to asthma meds, then it's not too helpful to call it asthma, is it?

I know you said you did elimination diets, but if they are CERTAIN there is nothing structural going on, I can't help but think there is some food - or many foods or combos of foods - that he is reacting to. Wheat makes my son wheeze for days after exposure, and his nebulizer just doesn't cut it. We have to get a prescription for oral steroids each time he has it.

OR environmental allergens. Have you done any traveling? Is he ANY better when you go to different locations? (I had asthma as a teen, and I wheezed throughout our 2 week trip to the UK. And again when I visited twice in my 20s, even though my asthma had all but gone away by then. I'm allergic to the UK, it seems.)

Is the home entirely free of environmental allergens? Cat or other animal dander, dust mite and molds are the biggies that I can think of. What about things outside the home - agricultural or industrial pollutants?

Have you tried acupuncture? There are some points for acute treatment of lung problems. The primary one is 3 finger-widths down from the crease in the wrist - between the 2 prominent ligaments. (These 2 ligaments are MUCH more prominent in adults than they are in children, but the point sometimes helps my son when he is coughing or in slight respiratory distress.)

[Danielle13]

Thanks you two! :)  I'm sure we've eliminated things FOOD wise from him entirely.  But enviromentally there hasn't been any change.  Perhaps I should invest in a few air filters?  We do live in a very very old building that I'm sure has lots of mold!

We also haven't eliminated all structural problems.  I guess I just needed reassurance that this probably isn't asthma.  Since every dr wants to label the poor boy with it :(

[WildKingdom]

Has he been tested for cystic fibrosis?

[MoonWillow]

It sounds like asthma that is not under control yet. Not all asthma responds to the same meds. 

[Lazurii]

My daughter contracted RSV at 2 weeks old and wheezed for a little more than her first year, with a lot of doctor visits and a few ER visits thrown in.  We did have mold in our apartment but that wasn't the whole story.  I tried a lot of stuff to help like mullein tea in a nebulizer, vegan DHA supplements (we were vegan at the time), oh, a lot of stuff.  I finally started giving her cod liver oil (1/2-1 tsp a day) and she stopped wheezing in two or three days.

My daughter wasn't anywhere near as bad as your son, but cod liver oil won't hurt him.  I hope you find something that works!

[WuWei]

I'd eliminate all dairy sources. Here is a list of hidden diary: http://www.kellymom.com/store/handouts/concerns/hidden-dairy.pdf

I'd do Epsom salt baths for the magnesium. And include Omega 3 fatty acids, avoiding Omega 6 (soy and corn oil).


Where to start? Help 101


Pat

[MamasBoys]

I just posted a thread here titled "How a naturopath cured my son's asthma."  I don't think that all naturopaths are the same--I think we were lucky in that we were able to go to Bastyr University where they are using the newest, cutting edge treatments.  My son did not respond to asthma meds either.  The pulmonologist at Seattle Children's told us NOTHING new, except to get him vaccinated and keep using the meds that were clearly not working. 

[xivmom]

Danielle 13, I am pretty sure we have a mutual friend in Alaska, Lisa M. Anyway, I saw your post and had to respond. Your son sounds EXACTLY like my son Apollo (20 months) after a year of searching Dr. Redding diagnosed him with a vascular ring, specifically a double aortic arch. He just had surgery on it March 7th (I am in the middle of writing a blog post about it). A baby really can't be diagnosed with asthma, because they can't do the blow test... Our son choked, coughed, wheezed, got out of breath playing or crying. We've tried Alburerol.  We finally convinced our doctor to order an MRI (after he had a bronchoscopy that looked normal December 20) and the vascular ring was diagnosed January 18. Dr. Redding knows what he's talking about. 

We were told over and over by the ENT that it was just allergies. Plenty of people tried to convince us it was allergies, but I knew it was something more. He was tested for CF (negative of course).

Send me a message if you have any questions. 

[purslaine]

Hi,

I really do not have much to offer other than hugs.  Stand firm, mama, on advocating for you son.

My eldest went through a wicked bought of GERD (reflux disorder) at age 14 - he lost over 20 pounds and was in pain all.the.time.  Zantac did nothing for him.  He went on Pantaloc, and the acid was under control in days.  He was actually able to wean himself off of Pantaloc after a few months and has had no or only very minor recurrences.  I am not in love with Zantac.  If you think the GERD is contributing to  his respitory issues, maybe a different medicine would work better?  Just a thought.

kathy

[Danielle13]

Thank you everyone!  We have a list of tests to do now.  It's heartbreaking but must be done.

He had not been tested for CF because of our homebirth/no PKU.  It was negative thank God.  I was totally freaked out for a few days.  

So now we just have to search.  We bought an air filter and he's slightly better.  So enviroment is playing a role.  We also found out that there is no air going to the right upper quadrant of his lung.  Which is bad.

Anyways, thank you all for your ideas and support!  We did remove dairy last week, hopefully we'll see an improvement from that too.  :) 

[Danielle13]

I just wanted to update again :)

Yesterday at our rigid bronchoscopy we found a Laryngeal Cleft (a hole between the trachea and esophogus).  Hopefully this is our answer.  Thank you everyone for your comments!