Posted By Posting
May 13, 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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More on Quinn :(
Ugh! i don't know what is wrong with this child and i just wish they could figure it all out! The oxy guy came out here to deliver a pulse oximeter for Quinn and an o2 humidifier to help with her bloody noses from being on oxygen and her heart rate was high for her age... like 130bpm... and her o2 was low... between about 90-92% on room air. he said that she should probably get it checked out. and that it is indication that she is probably working too hard to breathe. we put her on some o2 and her sats went back up to 95% and hr 115.

so another ongoing issue

My thing is that we just don't know what it is that is causing her to loose o2 and become tachycardic. WE have been going swimming a lot and after like 15 minutes or so of her swimming, she will turn blue... i mean her hands, her arms, her cheeks and lips and i will have to put her on o2. it's just so frustrating becaus we don't ahve an answer as to why she is doing this! she also had that urinary tract infection not too long ago and her o2 was super low on 1 liter of o2 with a heart rate in the 200s. for a freaking urinary tract infection???

so i know the doctor is gonna check her out for some GI issues and cystic fibrosis of some sort. Her poops has been weird. she hasn't really been pooping much at all. it's multiple times a day but it's all soft and sticky and tiny amounts... almost like it's just skid marks and shit. How am i suppose to potty train her when her body isn't functioning right?

how am i suppose to get anybody to listen when she looks and acts pretty darn normal aside from her petite figure?

it is known that obviously, she does not have normal bodily function. But what is it? why can't we get an answer? We have been doing nothing but beating around the bush and trying to figure this all out and all we come up with is misdiagnoses and nothing at all in the end. WTH is torturing her body?

so i am just venting. i am so frustrated and just wish that we can finally reach a landmark. -Sarah

May 13, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
I hope you get some answers and if I hear...what are you worried about, he looks great one more time I will scream. Then YOU come over and feed him. You watch him subsist on air. You have him kick and scream instead of eat....then you watch him bounce around and sing like the happiest kid on earth...who doesn't care that he is starving.... Sincerely, I hope someone can give you answers...I pray every night for one.
May 13, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
I feel your pain. Don't have anything much to say except you are a good mommy to keep fighting for your little girl...Hang in there Sarah, it's GOT to better soon.
May 13, 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
oh you guys, it breaks my heart to see you struggle so much. Wish I could be there to give you a big hug and provide you some much needed respite. Thinking about you and Zach too. Hugs and kisses to you all!!!
May 14, 2009
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Oh man, Sarah, I feel your pain. That is exactly why we ended up turning to alternative therapies (Chinese Medicine, Craniosacral, Homeopathy) for treatment and reserving Western Medicine for crisis intervention. No one seemed to have a clue why Lorenzo was having so many issues, and no one really seemed to care since he hadn't had a crisis for such a long time.

Don't get me wrong, I am all for Western Medicine when facing a crisis and for many diagnostics, but when it comes to real healing -- to understanding how the various systems of the body interact and can affect each other, Western Medicine is, in my opinion, extremely ignorant. Have you ever taken Quinn to an alternative health care provider? I know it isn't easy to find a good one, and that it can be hard to understand exactly what they are offering, and to make matters worse many insurance companies won't reimburse for visits to alternative providers, but Quinn's situation just screams out to me as one that has great potential to be helped by a good practitioner. If you are interested, email me at cristina@mothersupportnetwork.com and let me know your general geographical location (largest nearby urban area) and I will ask our alternative practitioners for any recommendations in you region)

((HUGS)) to you -- as always, I am blown away by your continued dedication to understanding Quinn's health issues. I hope some insight into the mysteries of it all finds its way to you soon...

May 14, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
HUGS mama - you do such a good job with her!!!! I came across some info regarding child breathing issues while finding out stuff for a client. May be some things to look up more in depth:

Children’s Interstitial Lung Disease (Disease problems to be excluded include: cystic fibrosis, cardiac disease, asthma, acute infection, immunodeficiency, neuromuscular disease, scoliosis, chest wall abnormality, typical premature lung disease, and confirmed significant aspiration on a swallow study.)

May 14, 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.
I'm sure with all the Dr.s she has been to that you have been to cardio. Didn't she have a VSD? Did it close up on its own? I'm sure that could cause issues if it was big enough. How about side effects from all the meds she is on? As far as the pooping problems, it really sounds like some type of intolerance/enzyme deficiency, but I bet that is a symptom for a number of conditions too. I'm really sorry you are still looking for a dx (or dxs) - that is extremely frustrating & unexpected (it's natural to think the Drs. and testing will pinpoint the problem). Hang in there, that day has got to come. El
May 14, 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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Hey guys. Thanks for the very kind words. I have looked into insertial lung diseases and her pulmonary doctor doesn't think she has it. mainly because her lungs are pretty darn clear most of the time. He doesn't want to do a bronchoscopy. But we have an apointment with him again on June 2nd. So we will see what comes of that. I'm bringing my mom because she has been watching Quinn a lot for me lately. As for her heart, she did have an ASD... two of them taht closed up on their own when she was 10 months old. As for seeing the cardio, we saw him last year sometime because she had a "blue spell" that lasted for a very long time. At that time, he said that she had definitely gone downhill from the time he previously discharged but that he couldnt' find anything wrong with her heart and that it was probably metabolic related. He discharged us again and told us good luck with everything. I'm going to see what pulmonary says. he wil probably want us to get her into cardio again.
May 14, 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.
You are such a strong and smart mommy. Keep up the incredible work and the answers will come. I pray for them to come soon.
May 24, 2009
momtochubmuffin
I'm new here but wanted to say you are an incredible mother to your daughter and it sounds like you've been through alot. I also hope you get some answers! It also amazes me that our children persevere through the most difficult things and still have happy personalities and energy! I guess that's why we love them so much :)
Check with your
doctor first!