Posted By Posting
Dec 05, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
My heart breaks more everytime (rant-sad)
My Meggy is having such a hard time. It feels that doctors and medicine just can't help her. For those of you that have facebook, if you see her next to the last video, laying in front of the computer, face red as can be, this has become a daily thing for her. The spasms, the gulping, then the screaming in pain and not wanting to be touched or held. If u have any suggestions, I am all ears. We have tried so many meds and none work. She is worse on elemental formulas. I took her outside before I started the recording and she screamed louder. I think the light was hurting her head. None of my usual distractions seemed to help in the least.

We had a neurology appt. yesterday and he is referring to have the mitochondrial work-up done. The neurologist says she fatigues way to fast. Unfortunately, the wait is long to get an appt. and may be late January to February before we can get in. This will require anesthesia and muscle biopsy.

We have a sleep study tomorrow and won't get the results for up to 14 days. We have to schedule an EEG for next week and an MRI on the 16th again requiring anesthesia and we won't be allowed to stay with her. We have the OT, PT,SP, evaluations next Friday.

We are currently scheduled for the laporoscopy and colonscopy on the 19. I hope somewhere in all of this, we can get some answers. I hope we are not putting her through all of this testing and radiation for nothing.

Sometimes it just feels that no matter what decision we make, it is wrong. We cannot very well leave her in pain every day of her life, but we have to consider her emotional well being and future too.

I am not doubting myself as a mother or anything, just feeling like there has to be answers. Like there has to be something very simple and obvious that we are missing.

Thank you for listening and all your patience with me.

Dec 05, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
BIG ((HUGS))! I know what you mean... you just feel like the testing can be so rough on them. I think it is rough on me too! ;) You are doing such a good job with her to find answers. Obviously she has a lot of things going on and hopefully some of these tests will tell her doctors how to better treat her. I hope that they will figure out what exactly the problem is... and soon!

I thought I would share with you something a friend just told me. I was telling her I was not happy putting Ella through testing and was afraid to scare her etc... She said that she had a ton of GI problems when she was a child and had a lot of testing at her local Children's Hospital. The thing that struck me was that she did not remember any of it in a negative way... and she was 7! So hopefully if you can keep things positive and bring some fun activities and maybe that will be what Meggy focuses on.

We will be thinking of you!!! I know this must be sooo hard!
Dec 05, 2008
ethan's mom
Meridith
Mom to Ethan, born 4/23/08. Diagnosed with Reflux at about 1 month, started medicating with Zantac, which wasn't helpful for us. At about 2.5 months, we started on Prevacid, twice a day, and that is working much better.
Ethan is breastfed and has a few solids that he is enjoying very much.
I just wanted to send hugs your way. I hope that some of the tests lead you to answers, and I hope, as was said in the previous post, that Meggy remembers the experience positively.

Dec 06, 2008
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.
Personally, I urge you to consider looking into alternative medicine -- Craniosacral therapy, Chinese Medicine, Acupuncture and Homeopathy. None are exclusive of western medicine, so you could still continue to investigate things trough western medicine, but you might find that treating her whole body, as most alternative approaches do, provides more relief, if not answers. I'm so sorry you're going through this -- it is so incredibly difficult to know there is something hurting your child and not only not be able to do anything about it, but not even know what IT is. I fought for over a year to get doctors to take seriously my concerns about Lorenzo's choking and apnea episodes, and in the end, we were able to get at least parts of a diagnosis. However, it has been alternative medicine that has brought about the most improvement in his health and well being. Hang in there -- it is so lonely and heartbreaking, where you are right now, but Meggy is blessed to have a mother who is so dedicated to finding a way to help her. ((HUGS))
Dec 06, 2008
jedd'smommy
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
Can you start he ron the Mito diet now and see if you get results. I know alot of the kids at P2P who start to get suspected for Mito, they put them on the diet right away unitl the muscle biopses tell them otherwise.
Dec 06, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Thank you everyone for all of your wonderful support. The neuro asked us not to start her on the diet right now because it could skew the test. It sure seems the reasonable thing to do to me.

Our schedule is so busy this month with diagnostic testing, but I may go ahead and call John Hopkins and others to see if going out of state would get the mito testing done sooner.

Dec 06, 2008
bib3mama
I have 3 boys, youngest has gerd, 18 months of no sleep. Prevacid 2x/7.5 mg thinking of switching to prilosec.
Sometimes it helps me to put it all in a timeline. Sounds like December is a big testing month for you. You can say by January you will have some more insight to this and maybe even some relief for her. In the mean time just keep loving her, stay calm, whisper in her ears, "I love you" when she is screaming and pushing you away. It's hard but it helps me to do that.
Dec 06, 2008
ceramom
Sarah
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
Mila screamed her whole entire first year. I held her and told her ( and myself ) repeatedly " I cannot soothe your pain but you don't have to cry alone." Sometimes that stopped me from feelign so overwhelmed.

Hope the testing goes well and quickly.

Dec 07, 2008
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.
HUGS! I am sorry you have so much to deal with right now. You know you will get to the bottom of this. Good luck with all the tests.
Check with your
doctor first!