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Update! Henry Saw Dr. K, the ENt and did PFT's - Parent-2-Parent & Reflux in Children
Henry Saw Dr. K, the ENt and did PFT's We had a very busy 24 hours!
Yesterday afternoon we went to allergy/immunology for the lengthiest PFT's ever!
He was taken off his daily Symbicort (combo daily asthma inhaler) 2 weeks ago in case it was causing his swelling/anaphylaxis.
They did the PFT's to make sure he was okay off the med.
They tested him about 15-20 times before and after albuterol and did asthma education and gave him new spacers for his inhalers.
It took almost 2 hours!!!!
He did okay before the albuterol but then had a 25% increase after the albuterol so he will probably go back on the daily meds.
Today, he saw Dr.
K (and we had a little P2P get together in the waiting room!) and she had some surprising news for us.
Henry had some blood work drawn by Dr.
P at the end of May.
We never got the results b/c our appointment kept getting rescheduled.
Dr. K looked at the results and they were very remarkable.
The most disturbing is that his ionized calcium is over 1000 - normal is under 200.
She said she has never seen a number that high.
She is calling Dr B and Dr.
J (Endocrinology) on Monday.
His glucose was also very low - 44 - after lunch...
And his immunolglobulins were all low.
Except IgE which was high.
His carbon dioxide was high.
His liver enzymes have been elevated and his liver is enlarged.
Dr. K does not want to do any other testing for mito, etc until we get the swelling/anaphylaxis and this calcium issue figured out so we do not stress his system any further.
We RAN out of there to run down the street to the ENT (Dr.
N. D. - for the Houston folks).
Both boys saw him.
Sam for sinus pains - Dr.
D does not think it is his sinuses but migraines and his nose looked good.
He looked at Henry who also looked good from an ENT standpoint except for the edema.
He did reassure me that we were going to the right docs and kind of cheered me on to keep advocating for him (Dr.
K did the same - she and Henry "high 5'd" that she had actually found SOMETHING- he was very excited about this).
Then we went back to Dr.
K's hospital to get labs done and finally went home.
Now I am researching high calcium levels.
Henry is determined to get on Mystery Diagnosis or one of those tv shows - he really feels he deserves to be on tv He has at this point stumpted about 25 of the best docs in Houston and in other parts of the country!
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Re: Henry Saw Dr.
K, the ENt and did PFT's Oh wow, Betsy!
Ali said she met you today!
I am just glad you are finding something to go on.
I am sure Dr K will be on top of it.
Is this Dr D the one that works with Dr J, who is British?
We see Dr J for ENT and love him!
I will keep praying that you have enough info now to start piecing together a dx...
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Re: Henry Saw Dr.
K, the ENt and did PFT's Thanks Missy and Melody - yes Dr D works with Dr J.
We love Dr. D but I know a lot of my patients adore Dr.
J and their other partner Dr.
E.
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Re: Henry Saw Dr.
K, the ENt and did PFT's I know a lot of people who see Dr D and love him.
Dr J drives a Porsche and I parked next to it after Nathan's 2nd surgery.
It still had paper plates on it and had his name so I knew it was his.
I could not help but think we helped pay the downpayment for that since we had just had 2 surgeries with him...LOL!
I LOVE Dr J's accent.
He is awesome!
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Re: Henry Saw Dr.
K, the ENt and did PFT's Wow!
The calcium levels are amazing!
Praying this is a clue!
((HUGS)) sweetie!!!
Glad you are finally getting somewhere!
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Jennifer Married 5/9/98 to Matt Megan 8 (6/6/00)
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Constipation, lazy eye, mild reflux.Alyssa 10 (10/20/98)
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CIPS with possible urinary association, GP, FTT, Migraines, severe constipation, bowel and bladder incontinence, G-tube fed since age 2, fundo and G-tube 2/2001, tubes & adenoids 5/01, Muscle biopsy 4/24/07.
Recently upgraded to "probable" mitochondrial disease.
Currently takes Nexium 40mg, Digestive Advantage, B2 200mg, Lactulose 10cc and mineral oil 10cc alternating days, Propranolol 80mg and Topamax 100mg.
Fixing to start the mito cocktail including B2 200mg (already taking), Folate 5mg, CoQ10 125mg three times a day and L-Carnitine 800mg three times a day.
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&Lane - 14 (5/8/94)
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, Total Brat most days!
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Re: Henry Saw Dr.
K, the ENt and did PFT's I too hope the calcium levels and other labs lead you to your diagnosis.
It was so good that Dr.
K saw those results!!!
Hugs and prayers for answers .
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Re: Henry Saw Dr.
K, the ENt and did PFT's I'm so glad that your appointment went so well!
I hope that they can figure out that calcium issue.
-Sarah
Mommy to Quinn
Born Jan 17, 2006, full term, 7lb.
Even. She had two extra pinkis!!!
History of GERD s/p Nissen Fundo August '07, FTT, malnutrition, aspiration pneumonias, heart defect (ASDs) and probably more.
Currently has: RAD, Epilepsy, CSID, hypotonia, Dumping Syndrome, DGE, heart murmur, tachycardia, dysphagia, sleep apnea, ataxia, cerebral palsy, bloody tummy and stools and probably more.
But, there is nothing wrong with her.
Medications: Xopeonex, Pulmicort, Singulair, Keppra, Sucraid, Reglan, Vitamin B6, Vivonex.
Supplemental Oxygen When Sleeping.
G-tube dependent.
Visit Quinn's Website:
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Re: Henry Saw Dr.
K, the ENt and did PFT's Sounds like you may be closer to figuring things out.
What a busy day. Hugs
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Nicky mom to,
Janessa 7 healthy little diva
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Isaiah almost 6, Mitochondrial disorder with PDH.
G-tube fed, fundo, wheelchair bound, deaf but hearing with implant , severely developmentally delayed and CVS but despite it all he is the most handsome, sweetest sole created in
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Avery almost 2., also Mito with PDH, gj-tube cont.
Feeds, severe global developmental delays, cochlear implant.
He has been through so very much but is my little warrior.
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