Posted By Posting
Nov 06, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Engi, how was Meggy's 18 mos check-up?
Been thinking of you both, and wondering how it went. I didn't want you to think I was being insensitive on your post about Meggy's weight the other day. I can't imagine what you go through with her. I was trying to alleviate some of your worry about her weight because the underlying issues she has are of much more concern. I didn't realize the extent of her "medical mysteries" regarding her blood work and stuff. I understand your worry on the weight issue, though, I truly do. I wasn't trying to compare the girls, so much as I was trying to encourage you that there is hope for Meggy. I hope things went well at her check-up. Hang in there, mama. HUGE HUGS.
Nov 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.
Very very long
Thank you greatly! U r so kind. Well her GI scales says she is 16 pounds and 12 ounces, but the new pedi. scales says 17 pounds and 12 ounces.

The very conservative pedi. was telling me that Meggy's head is too small and now she is very concerned. She wants us to return to the neurologist as soon as possible.

I told her she puzzles me, because just maybe a week ago, she was assuring me that Meggy is perfectly normal and just small like Daddy. She said well that was before I measured her head.

The pedi insisted I was being overprotective of Meggy and that Immunizations are a must. She told me kids have gotten them for decades without problems. Then made a statement about me being just a first time mom. She kept pushing me saying we have to get her caught up, and that if I refused, I was doing wrong by Meggy.

I told her about the reactions to previous vaccinations. She said she would consider them minor. We fussed back and forth over an hour. She told me to do the MMR, DTap, and Polio the same day. I told her I have no intention giving her MMR at all. I asked if she had to choose one that was more important than the other one of DTaP or Polio which one. She grudingly said DTaP.

So, unfortunately against my mommie instincts, I gave in and let them give her the one. It was a big mistake. Though this one was not a live virus, she had as severe a reaction. I haven't been on the last two days much because Meggy is having trouble breathing. She had less than 21 ounces of Ultracare yesterday and nothing else. Today, she only took 4 ounces of Ultracare and 2 ounces of water from Midnight till now at 7:31 PM. Her mouth is still a little moist and her skin is still bouncing back, so she is not dehydrated yet.

Her fever has spiked 105 twice, but we got it back down. She had what looked like Sandifer's syndrome 3 times today. Each lasted about 15 seconds and she remained awake after. The pedi. still insist this is a minor reaction and that Meggy doesn't need to be seen.

I am certain that no matter how much I am frowned upon in the future, that Meggy doesn't need anymore vaccinations. They are as much danger to her as not getting them.

She stopped breathing in the car twice today. I just wanted to get her home so that if she stopped breathing again, I could stimulate her.

I would hear her gasping, and hoarseness and her saying Mama. Then, nothing. I stopped the car and got out. Tried to count her breaths, but couldn't see, feel, or hear them. (I even tried to listen with a stethoscope. Her heart was still beating but at 80 per min. She rarely goes below 95.

She was okay with a little stimulation. Either way something in the vaccinations doesn't work with her little body. She had her first apnea after her 2 month shots and now this, but pedi. still says minor reaction.

When I called the nurse advice line, they told me that the pedi. left notes on Megan's chart that she had already spoken to us about the problem, and that we should see her back in a week. Of course the ER is gonna follow along the same lines.

I don't understand how I pick such careless or incompetent docs. We are on Pedi. #3. It seems they either totally over-react, or wait till she is in serious trouble to say there is a problem.

The pedi. argued with me as well about giving a referral for Babies Can't wait, the early intervention program here, but finally said maybe we should.

She wouldn't even send a medical necessity letter or referral to apria for us to try and get help with Ultracare because she didn't prescribe it and feels Meggy should be eating regular table food.

She asked me to get some video's of the problems I describe with the carseat, stroller, and Meggy's sleep.

I feel like the local docs. just don't care about Meggy. I feel when they look at her, all they see is money, or a number. The pulmologist is planning to schedule Meggy for a bronchoscopy. I did like him, as he listened and seemed to care a lot.

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Nov 06, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
sorry to butt in- maybe this will help meggy in the car http://www.rightstart.com/global/store/product~item~8135.html
Nov 06, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Oh man...I believe in vax, but I'm with you. If I saw those reactions, I wouldn't do them either. It sounds like you need a new ped. Is that possible?

Hugs to you! Hope she feels better.

Nov 06, 2008
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+.
I am so sad for you and Meggy. I am seriously crying reading your story. Your ped is absolutely awful and ignorant and I would say downright abusive. I would never ever step foot in that office again. There has got to be another ped or even a GP that you could see that would be more helpful then that. I am so sorry. I hope Meggy comes around from the shots. If she stops breathing again I wouldn't hesitate to take her to the ER. BIG HUGS and hang in there. And don't feel bad about giving her the shot I think we have all been in that situation where the docs are telling you one thing and you want to believe them. You are an awesome Mom and you are doing everything you can for Meggy and someday she will tell you how much she loves you for it. I am blown away that she can still fit in the infant carrier car seat. Neither of my boys fit in it after 4 or 5 months old. You both will remain in our thoughts and prayers.
Nov 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.
The support and care I receive here is beyond amazing. Thank you all for caring so much. U know I was an orphan, then I met my husband and I have family now, mostly in Egypt, but all of you feel like family to me. It is great to know u care and will do anything possible to help.

Wow, I had never thought about the neck buddy. I knew the head support was working against her, but the neck buddy looks promising.

Yes, I think we will look for a new pedi. We had just switched cause the other was threatening us. We were not doing things his way, and he didn't like it.

We have a few ideas of new car seats to go try for her too. It is just hard, cause it looks like she will fit in store, then u put it in the car and it is a whole new story.

Thank you everyone.

Nov 06, 2008
nicholasmom
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
I can't believe all that you and Meggy are having to endure. It must be so frustrating to you. It definitely sounds like you need to find a new pedi. Follow your great momma intincts. You sound like such a wonderful mom and advocate for your daughter. Keep up the good work!
Nov 06, 2008
baby esme
I don't post that often on the board I usually just read the posts and listen to the advice given. I have been reading your posts about Meggy and I have to tell you that my heart goes out to you. I usually leave reading your posts in tears. I think you are a wonderful mother who is doing all that she can for her daughter. I hate reading that your docs don't take you seriously! I hope that Meggy gets better and that she is no longer in pain. My daughter was also a preemie and she was born at 34 weeks. At 18months she only weighed about 18 pounds. I hope Meggy nothing but good heath!! She is adorable and lucky to have you as her mother! Big Hugs!!! :)
Nov 06, 2008
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'm glad you're following your instincts. I too beleive in vacc. but in Meggy's case they can be skipped or done way later on if need be. I really hope you find a Ped. who listens to you. It's so important to get a Dr who will work with you. I hope the Pulmonologist proves to be a Dr that will get some results for you.....LOTS and LOTS Of Hugs!
Nov 06, 2008
elysabethsmom
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
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http://www.target.com/Graco-Comfort-Sport-Convertible-Seat/dp/B000WGYI5K/sr=1-1/qid=1226027215/ref=sr_1_1/179-9036545-5506721?ie=UTF8&rh=k%3Agraco%5Fmaggie%5Fcar%5Fseat&page=1

Above is the link for the carseat we have for Elyse...our girls are the same age and Elyse is 31 or 32 inches tall, and we still have her rear facing so it would probably work for Meggy.

Nov 06, 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.
Poor Meggy. I am so sad for you guys right now. I can't imagine what you are going through. (hugs)

Nov 07, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Huge Hugs, Engi. See, that is exactly the hypocracy I hate from doctors. They can bully you into giving a vacc because they feel it's in her best interest (regardless of your previous experiences), yet when you want answers about her health, the onus is on YOU as to what YOU want to do about it, it terms of testing and stuff. It's up to YOU to be an advocate for her health, and up to the doctors to advocate for the vaccs. It's not right. I hope you find a doctor who will advocate for her as well.
Nov 07, 2008
alex's mom
Alex was dx with silent reflux at 3 weeks old. Previously on Prevacid SoluTabs 15mg daily, now on trial of no medication. Was thought to have oral aversion, saw feeding specialist who says he's just not interested in food--no aversion at all. Slowly coming around to food. 15 months, 19lbs, 7 oz.
I have read your posts often and I just want to say that you are an absolutely wonderful mother and a champion for your daughter. I think that everything you have done for Meggy is by your sheer determination!! You need to trust your "mommy instincts". I'm sorry to find out that your pediatrician is so callous. I am absolutely dumbfounded and furious by some of the things she has said to you. I am glad that you have stuck up for Meggy and done what you think is best for her. I would consider getting another one. Have you tried asking your Pulm Doc/Neurologist who s/he recommends for a pediatrician (who they take their own kids to). I worked in the ER and I want to tell you that by LAW (EMTALA) you are allowed to go to ANY emergency room and your daughter WILL be treated regardless of insurance or finances. Do not wait for the peds okay before you go. If you think Meggy needs to go then rush her there! There should be pediatric intensivists on call that will be able to admit Meggy and treat her without your pediatricians ok. I am scared for Meggy and you. I hope she will get the care she deserves. You both are in my prayers. HUGS!
Nov 07, 2008
mom2adriane&morgan
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
I can't believe that this is happening in this age. I mean why are we forcing vaccinations on children who have adverse reactions? If this was the first time she reacted to vaccines this way I might say it could be a "huge" coincidence and say it could be viral. But this is a pattern. Same thing happened last time and docs are idiots!

You keep fighting! I know how hard it can be when you have so many problems. The pulmo guy seems like he would be a great assett. Can you call his office and ask for a recomendation for a new ped? there has to be a compotent ped in your area. We actually had to go to OKC, instead of Tulsa, to get a good Pulmo so if you have to find a town that is close but has a better doc. I know it is a pain but if they will take you and your dd seriously and care about them it is worth it.

As far as the car seat we also have the graco convertible one that was linked to above. We have to switch A back and forth depending on the week or weight. It is a pain but better safe than sorry! It could work and the good thing is that it goes into a booster so in theory you shouldn't have to buy another car seat again. Unless she is like my oldest who is so hard on car seats!

I really hope that Meggy gets better. If she stops breathing again I would call the pulmo office or just take her to the ER. If you have to call the pulmo and have him tell you where to go. I think you should just bypass the ped. Email me if you need to. -Amanda

Check with your
doctor first!