Posted By Posting
Jun 04, 2009
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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OMG! a Quinn Update!
More and more stuff... and coming back to cardiology. I wish i could write a little history on Quinn... but damn there's just so much.

Ok so the lodown is that a couple weeks ago Quinn had a Heart Rate that was 220beats per minute accompanied by chest pain (like she was literally holding on to her chest and telling me that it hurts so bad and crying for about 20 minutes before she finally fell asleep on the couch, which is WAY NOT LIKE HER) I couldn't even count her rate by pulse or apical, so the pulse ox was accurate. her sats were quite low too.

So, metabolic appointment, GI appointment, Pulmonary appointment and Cardiology appointment later: Quinn is being testing for more on MITO since her labs that indicate MITO are a little high (thyamidine, lactic acid, urine organic acid stuff) So he is actually taking a genetic test and redoing a few of the same tests to see how accurate they are. Quinn lost more weight, she is 3 1/2 years old and weighed in at 28 pounds. So she is back on g-tube feedings. She continues to eat, however looses weight without the feeds (this might be old news), Quinn's echocardiogram and 1minute EKG came back very normal. However, the doctor wants to catch these heart rythms and so Quinn is now on a cardiac monitor called an EVENT MONITOR that measures her electrical heart activity. it records when there is a rhythm that is out of the norm. She has only had it on for 1 day and we have had 1 alarm already. She will have this monitor on her at all times for one month. She is also being tested more in depth on cystic fibrosis. And she does NOT have CSID. biopsy came back clean. However, she is having so very strange stomach juices that concerns the doctor, which is why she is having more testing done on stuff like elastase or whatever...And hse is also going to be having a chest CT scan to try and find out if her low o2 levels are at all related to breathing.

So, what is life like for us now? VERY normal, if you can believe that. Despite it all, she just looks and acts so freaking normal. Quinn has been sick off and on with fevers and low saturations, but holy cow! i have a whole hospital right here, so i just take care of her at home and she gets better. Every night, she is hooked up to her oxygen, her feeding pump, and her cardiac monitor and i go in and check her sats a few times a night. We are going on a trip to hawaaii in a few days (i recommend not traveling with a child on o2! it's too expensive, we will never do it again), and we are also moving on tuesday to a nicer, bigger house! busy busy busy days. and i passed my EMT class! i just have to take national registry. -Sarah

Jun 04, 2009
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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I wanted to also add, Quinn wakes me up every single morning and wishes me a "HAPPY MOTHER'S DAY!" I dunno why but it is the cutest and sweetest thing in teh whole wide world and I wake up with a smile every single morning. Her vocabulary is awesome! she says the sweetest and simplest things. it's so cute. she has such a tiny little voice. I remember back when she was 2 and barely said "ma". I hope everyone is ok. I'll come back and read this post so please, please, update me and let me know how everyone is doing!
Jun 04, 2009
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Sarah, I hope they figure out what to do for Quinn!! Glad that they figured out she doesn't have CSID but hope they figure out what she has since I know she can't have certain foods. Glad that she is talking up a storm and has grown out of her terrible twos! Congrats on passing your class!!~Tracey
Jun 04, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
It sure sounds like you are on the road to a diagnoses. I hope it comes quick. I have a smile on my face reading about how sweet she is and that you seem to have things down pat at home.

Have fun in Hawaii - it is so beautiful - a great place to forget about reality for a while.

Jun 04, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
No wonder you passed your EMT class. I think you have lots of experience in the medical dept.! I hope the answers eventually come as to exactly what Quinn is suffering from. She sounds like a happy, cute kid overall & that is what counts. On my end - Eric has been on elemental formula only for 5 weeks now, his next scope is next Wed. If the eosinophil count is down where it needs to be, we will start trialing 5 fruits/vegtables. He is still high maintenance as far as behavior. That's the worst part sometimes. Ellen
Jun 04, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
So Happy for you guys!
I am so happy the doctors finally seem to be listening. I think the cardiac monitor sounds like a good addition to her treatment because some of her episodes definitely sound heart related to me. I hope it provides lots of answers for you. Have fun in Hawaii. I just went to celebrate my 30th birthday and it was so beautiful. Aidan is doing good. We just scoped him again and although his esphogus looked clean his Nissen was loose and twisted and he has a rather large hiatal hernia. Both aren't surgery worthy yet so who knows. He still pretty much only eats Elecare and everything else still makes him wake up screaming at night but life feels very normal for us now too. Keep us posted when all these tests and labs come back because I am always thinking about Quinn. She is such a trooper. Good luck on the national registry test. I am sure as with everything else you will do great!
Jun 07, 2009
mely
Amalia 11/1/06, Silent reflux- Weaned off prevacid in the summer- back on again 15mg. Back on lactaid. Atalia- 6/17/08 DX with GERD and colic at 9 days of age. Appears to have mild MSPI. Upper GI. On Prevacid 22.5mg. Successful transition to whole milk! Eats everything!
Pic. Amalia and Atalia having fun at home.
Wow!!!!! That's a lot..But I'm glad the doctors seem to be on top of it. You are such an inspiration- you and Quinn. May God continue to strengthen and bless you both. Have fun in HAwaii!!!!!!!!
Jul 19, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Sarah, How is Quinn doing?
Hi! I have been thinking about you and Quinn. How are you doing?
Jul 19, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Sarah, How is Quinn doing?
Hi! I have been thinking about you and Quinn. How are you doing?
Jul 19, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Sarah, How is Quinn doing?
Hi! I have been thinking about you and Quinn. How are you doing?
Check with your
doctor first!