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Discussion Starter · #1 ·
Okay this is long thanks for reading!

the following is what I give to the docs when he goes to the hospital and than below is my own explanation sorry for so long.

Kaden was born full term at home on April 14th 2006. He weighed 5lbs 10 oz
Kaden does not receive immunizations
Kaden is exclusively breastfed

Kadens symptoms started in August 2006 around 3.5 months of age. His symptoms are tychpnea with a respiratory rate ranging between 55-110 breaths per minute as well as severe hypoxia even on the oxygen. He is also struggling to gain weight, which started at the same time and we believe is due to his rapid breathing.

He has been hospitalized 4 times and had many ER visits.

He has had 4 echo's showing trivial aortic valve dysplasia with effusion that is being watched to make sure it clears up as he grows. He has a murmur He is scheduled for an MRI on Dec 19th with a specialist.

He has had normal ph probe study, barium swallow and checked for a fistula and ph impedance probe study. The barium swallow may need to be repeated, as he didn't

He had a bronchoscope done on October 6th 2006 showing irritated adenoids, a floppy voice box, and aortic vein compressing his lungs. The BAL culture showed pepcid proteins.

He has had over 30 tests done and most are normal His liver enzymes are low and he has had a UTI had a normal UCVG and one of his lungs collapsed a few times. Sweat test negative for CF.

We do not have a definite diagnosis as of yet his current condition is he is still tachypnic and he is on home oxygen 1 liter.

He has brochilitus its mid Nov. he has started an antibiotic to treat the infection last week he was on orapred since his symptoms have gotten worst. He has been having apnea and cyanosis and an increased respiratory rate accompanying the infection.

Kaden is a highly active happy strong baby boy who is on target with development. He is receiving xopenex 3x daily pulmacourt and atrovent 2x daily as well. Started azithromycin on 11-21-06

Kaden started having a cough at 3 months with an increased respiratory rate I brought him to the ped she sent him to have an echo. which by now he has had 5 echos and is waiting for an MRI to completly rule out the heart that will be done in december. at four months he was givin antibiotics neb treatments and a steroid he no longer coughs but his respiratory rate is normally 65 breaths a minute over the past two months his respiratory rate can go as high as 110 and has been 90 most of the time all this week. he gets xopenex pulmacourt and atrovent through the nebulizer. He is on 1 liter of oxygen 24/7 and he is not improving. he is not gaining weight very well he is at 15lbs he was a great gainer before the respiratory problems. He has had many tests a normal swallow study (he didnt take much as he is only breast fed and didnt want the bottle.) He has had a ph probe study and an impedence probe study both normal. he had a brochcoscopy showing his adenoids irritated and that his lungs are being compressed by his heart artery.

He is on a round of steroids this week but they are not improving is respiration at all. the doc thinks its chronic silent micro aspiration causing chronic lung disease. I am home with him and they dont seem to plan on doing any more tests. if it continues they are thinking a fundo and a nissen (surgery on his intestines and a feeding tube)

I cant handle seeing him breathe like this I am always panicked and the other night he was having apnea episodes (he has had a normal sleep study) and when he did breathe he let out this awful cry.

He is neurologically on track and is usually very happy and extremely active he tries to keep up with his sister can crawl and loves to stand its all he wants to do. I am worried sick about him and I dont think enough is being done. Please help if you can. any ideas?

He also prescribed him Axid I had asked for something else and he said yea its the same but from what I've read online I heard good things about domperidone and its not the same.

I dont want to give him a reflux med if two ph probes said he doesnt have reflux and the GI doc said he doesnt need them?

So Im going to start a probiotic diet and see if that helps him any.
He got the referral to the ENT and GI but the ENT appt isnt until feb 21 he still goes for the MRI on dec 19th

He said when he turns blue turn the O2 up to 3 liters for a few minutes and if he goes into respiratory distress after this round of antibiotics to bring him in.

Thank you for any ideas

and I am on an elination diet not eating dairy chocolate caffiene.....and just started today giving him a vitamin and fish oil.

plus I just started today taking acidophilus calcium magnesium vitamin c zinc echinacea prenatals and I have to pick up Flax seed oil. and emergency packets.

Thanks! if you got this far you are amazing!!!
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