|Oct 21, 2008|
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Info on TPNOkay, I know that I have looked at almost every article on TPN in the past several days. I know that there can be complications and what the risks are. Which I'm not sure I am willing to take. Anyone on here have experience with this? I am feeling like I am at my last rope and I am getting ready to call the GI back and I don't want to cry at him. I already cried and yelled at the nurse.
One thing I don't understand is that he did a endo but he won't do a colonoscopy(sp). In my opinion he should have done it while she was out for the endo. I am tired of getting onto her when she tries to get her sister's food. (She picks on the weakest on us.) She has bit Morgan once so she knows that Morgan won't fight her much if she tries to take the food again. I am tired of her vomitting or having diarrhea regardless of what she is eating. He says that the Zantac won't stop the spitting up but why is a 17 mo still spitting up? The blue spells are back with a vengance. We are on our last formula and I never thought that we would be considering TPN at this age. I thought we avoided this last year when we found a formula that she could tolerate. Then that went badly. I feel like we have just delayed the inevitable. Should I just try to wait until we go to Denver? Please share your opinions. Thanks- Amanda
|Oct 21, 2008|
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
|I don't have alot of time because Ineed to go make dinner but...|
I would not jump right to TPN that's for darn sure...JMHO...
I would at least do a G or a J tube first. That way you could try the G at continuos low feeds for 24 hours a day. IF that didn't work out you could advance the G to a GJ and do 24 hour continuos feeds ther and bypass the stomach all together. By going to GJ feeds you can also continuosly drain the G tube part of the GJA nd then there is pretty much NOTHING left in the stomach to reflux up and cause blue spells.
TPN is a whole different monster to contend with. You can get line infections tha tcan cause serious issues. Also they can't ge the line wet at all, onlyh sponge baths....As well as liver failure becomes a possibility allthough that can be rare. NOt somethign I'd sign up for that fast either.
I'll be back later. In case you have any other questiosn. I don't know alot about TPN. I know there are a bunch of Mothers at www.parent-2-parent.com whose kiddos are on TPN.
|Oct 21, 2008|
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Paraesophageal Hiatal Hernia,
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Visceral Hyperalgesia,GI Dysmotility,
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
Bronchs w/ BAL's,lung biopsy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
NPO tubefed continuous elecare 24 hours/day
I agree with Jessica, I would try feeding tubes, try everything to avoid TPN, there is soooo much serious risk involved there, in some instances it causes liver failure,rarely death.I would do everything possible to ensure she is not sneaking food, that may be detrimental as you know already, it may be exactly what is causing her problems? If she starts TPN and is still sneaking food, what good will it do???You have to get that figured out.
Wait and Avoid!!!!!!
Has she had any motility testing?I see she isnt on any meds to help the stomach empty faster, have you tried something like that, if reflux is causing the blue spells, it may help. I hope something is figured out soon, many hugs.
|Oct 21, 2008|
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We have been to John Hopkins for Meggy. On every formula but Good Start, Meggy also only tolerated them for 4 days at a time, then the vomiting would began.
Recently we tried her on Ultracare and we were doing okay until she increased to 14 ounces a day. Last night she had what looked to be either seizures or sandifer's syndrome. It wasn't like before though when I was definite it was sandifer's, as she turned blue this time.
What treatments have been tried for your little girl? Did the seizures start before or after Zantac? Is she allergic or sensitive to corn? Which formulas has she tried?
I am sorry for so many questions, but the answers are important in getting help for your little girl.
I am guessing the answer is yes to this considering u have seen a geneticist, but I will ask anyway. Has anyone done urine organic acids or stool fat studies for her? Has she had an extended metabolic panel?
Meggy started having the Tardive dyskinesia after taking Zantac. She always screamed worse while on it too. She also had what appeared to be migraines where she was sensitive to light and sound. We would administer the Zantac and within minutes she would start screaming like someone was trying to kill her. She wouldn't calm no matter what for hours after.
Her doctors assured us there was no way it was a reaction to the meds and encouraged us to give it again. We had to make a choice as parents and direct observation of our daughter that in this particular case Zantac was doing more harm than good.
If you need anything, I will do what I can. The crying and the pain can get to anyone after a while.
Where r u located? Have u been to a major diagnostic hospital like John Hopkins for Mayo?
|Oct 22, 2008|
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
|I am no expert, but i agree with Jessica....if the problem is that severe, continuous feeds may be a good option. Also, in response to "why is a 17 month old still spitting up?", Elyse still does have spitting up and all out vomiting, although it is only every couple weeks now. We tried a med wean last week and on the morning of day 3 she spit up twice and then puked, all within an hour. so we know that her zantac is helping at least...even though I have always heard that the meds won't stop it, and in our case it didn't for many many months, now it does appear to help on that front. From your siggy it looks like she is not on any reflux meds right now (except I don't know what xopenex is)...is that correct? The only thing that stopped E's blue spells was prevacid but it looks like you have tried that too.|
She looks so happy and healthy in her photo you can't even tell there is a problem! :)
Oh last thing, if you want her to have further testing done on the other end of her digestive tract, maybe you should get a 2nd opinion since the current dr does not want to do it?
|Check with your