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
A general chat about health
Okay, I'm totally bored, and need to chat. Mike's on the playstation. Anyway, this is more of a reflection, but I'd appreciate any opinions. :) I've been doing a lot of thinking about Rory.

Yes, she's tiny. I can accept that, but a few things are bothering me.

I asked the GP about allergy testing, because the last time Rory had eggs, she vomited profusely, lost her color and her lips turned blue. She's always vomited them. She said "it depends on how far YOU want to take it?", which made me feel like I shouldn't have asked, and that it was unnecessary. She said that it's probably just a "tummy thing" and since she can handle eggs as an ingredient in other stuff, she is not allergic. That seemed fine to me, but I also asked "could an allergy or intolerance lead to absorption problems and low weight gain?" to which she replied, "yes, but Rory has had weight issues before she started solids". Okay. Fair enough. BUT, she was also a chronic projectile vomiter before she started solids, so THAT would account for the weight issues THEN. Right?

Also, she hasn't had any blood drawn since she was like, 6 months old. How do they KNOW she is nutritionally sound? Can they make that assumption based on the fact that she eats and drinks? I know that sounds dumb, but I'm honestly curious. Because she is now below 10% on her weight-for-length, which I *think* reflects that she is malnourished.

She also said Rory's breath holding and grunting is just "her weird thing", but I can't help but wonder if there's more to it. I mean, I might not be concerned except for the fact that she has this pectus that they are assuming isn't causing problems, but how do they know? The GP goes, "oh, everyone's listened to her ticker enough to know it isn't a problem".....well, guess what? They listened to Mila's ticker for a year, too, and we all know how that turned out.

If these were all separate issues, I might think I was a total nutcase, but, put it all together and I just feel like there is *something*, kwim? ....*Something* that explains why she is so small.

The pediatrician was not willing to look at the whole picture, which is why we no longer see her. The GP thinks I'm a nut case (probably because I bawled in her office constantly in the beginning).....so what do I do? If this was your child, would you ask to see a new pediatrician? In Canada, we need referrals to pediatricians. I definitely need a ped, right? I think I'm going to get her weight done at 20 months, and then ask for a referral. But I don't even know if she'll give me one, because she doesn't see anything to be concerned about. WHY AM I CONCERNED????? I'm right to be concerned, aren't I?

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
oh yeah, and do any of you have any idea what I need to do about green eye goop? lol. Does this mean she has an infection in her eye? Do I need an rx for cream, or do they sell stuff over the counter at the pharmacy? We were just at the doc yesterday....figures.
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.
i was looking up blue sclura today. I had been asking about why the whites of audrey's eyes are bluish and i mentioned it to the GI and he called it blue sclera- it's most often a preemie thing but can be a symptom of other things too.

so i was curious about those other things. anyway there is they website i found while searching called Wrong diagnosis. (http://symptoms.wrongdiagnosis.com/cosymptoms/pectus-excavatum.htm) it is incredibly frustrating b/c there is sooooo much stuff to search through. but i noticed that small stature and ftt and low weight gain were criteria for many diseases (some included blue sclera, others that i looked through did not).

I took one of rory's symptoms the pectus thing and put it in, the link above goes to the site. this is not to scare you, you know me i would rather die then hurt your feelings! but i think it is your right to be informed since the drs are not helping- btw happy late b-day ;) )

this was kind of round about way of me getting to the point so my point is: it COULD be something. whether it really is nothing as in audrey's blue sclurea case or something as in mila's heart case; if you think there is something wrong you deserve to be taken seriously and you deserve to know what it could be. I would get the pedi referral. Do you get referrals for genetic testing in Can.?
Nov 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
Hey!!!! :)~
What other specialties have been given a "crack" at Rory's case????
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
Kat, I've used that site before and it drives me crazy, lol. Maybe I shouldn't be concerned, but I'm cursed with having a history of researching(like you :)) and following families whose kiddos have growth and other concerns. I know what the possibilities *could* be, and perhaps that is why I worry. I just want to know who decides which small babies are healthy and which ones are not. It's obviously not the charts. I think a new ped might give a new perspective. I mean, seriously, she's only gained 1lb 4 oz in 8 months (she lost and gained in between). I just don't feel comfortable accepting she is small, knowing WHO I have been dealing with. She did see GI twice, the GP, the Ped, and a behavioural psychologist at the feeding clinic. I have no idea about genetic testing. Sorry for beating a dead horse guys.
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+.
Don't apologize for talking out your feelings here. That is what we are here for. I think you should keep pushing until you feel comfortable. My ped would test until the end of the world even if there was nothing wrong if it meant putting my mind at ease. And anyday, anytime of day I can walk into their clinic and do a weight check. I am not sure what the answer is for you guys but I hope you find it soon. That being said having gone through all that I have been through with both my boys I do suffer from some anxiety and often have to just put my anxiety in check and realize that sometimes there aren't answers to all the questions and just accept that is how life is. That is incredibly hard to do for a control freak like me but it is also exhausting constantly worrying about the issues 24/7. So trust your Mommy instinct and push for more answers if you think that is what you need and if not give yourself permission to just be and enjoy the moment and stop worrying. I know way easier said then done and you can feel free to quote that back to me the next time I am doing the same thing. LOL!
Nov 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
I would also have to agree that you can take your frustrations out anytime here.

I would as well be concerned with such a slow weight gain over that time period. It is really slow.

All of her testing so far has come back normal, right???

Nov 06, 2008
amber f
I don't think you are a nutcase. I think you are a awesome mother and a great friend. If you feel in your heart that something is wrong keep pushing. A great big giant HUG to you and Rory. I hope you get some answers soon. I wouldn't think that green eye goup is pink eye. I would think that it would be more red in the eye lid. It sounds like she has a cold in her eye. What I recommend doing is taking a cotton ball with johnson's no tears shampoo and cleaning around her eye but make sure you use a clean cotton ball for each eye. If she will let you hold a really warm wet wash cloth on her eye a few times a day. I'm not a doc but that seems to help other kids. HTH
Nov 06, 2008
bellaria
(Maria)Mommy of 2 beautiful boys
Raymond(3) Severe Trachialmalasia, very mild Cerebral Palsy, and Reflux. Currently only unsing neb and doing well w/o Prevacid!
William(2) Reflux, MSPI, severe food/seasonal/environmental allergies. Currently on Prevacid, Zyrtec, and very limited diet.
Picture:William just turned 2!
Will 2yr old
You know, I was really die hard about the boys seeing a pediatrician too until we went through 3 of them in 1 year... Our current doctor is a Family Practice doctor so she can see all of us (a big plus) and she has been the best. I'm also a Google master.lol I research everything, of course it always seems to comes back with the scariest outcome possible.lol Breath holding and grunting are reflux symptoms. I catch myself holding my breath when I have heartburn. I think you should pursue it if you feel so strongly about it... what will it hurt? If you are right, then that good to catch any problems...if you are wrong, at least it will put your mind at ease. (((HUGS)))
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.
I think that you have every right to be concerned, even if it turns out that she is just small. You are her mommy and if you ignore what seem to be signs and symptoms, then no one will ever know about them, and there is no possibility of help.

I was thinking as I read this post, wouldn't it be wonderful if the doctors just came out and said what they thought, and parents could just say exactly what they thought. Then we could tell them that we have no intention of dropping this, and they could say we were crazy, and we could move on to the next doctor!

Sorry, got a little off track there. From what I have read of your posts, it seems like you do your very best to enjoy Rory, just as she is, and I thnk that makes you a great mom.

Nov 07, 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.
I think u r doing what is right for her and for you. Doctor's often dismiss us as parents, especially "first time Moms"

U live with her everyday and u certainly see her more than doctors, so I feel u would better be able to judge than they.

If u feel in your heart that something is wrong, follow that. Search for answers and don't let the doctors bully u.

I would want a referral to a new pedi.

As far as the Pectus Excavatum, as others have said, it could be something, or it could be nothing. My friend has it and she has dysautomia or however u spell that thing and some other genetic disorders. The Pectus Excavatum doesn't really cause my friend harm, it is just a difference.

Meggy also has the Pectus Excavatum, but not sure it is as deep as Rory's. I am sorry that the docs. are not addressing your concerns either. I know that it can be super frustrating.

It seems here that they are not proactive. I hope u get someone who will listen and someone who will take the time to observe Rory as a whole.

I guess it is quite different here as our GP won't see Meggy. We r required to take her to a pedi.

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
You ladies are all superstars! Thanks for ALL your input! Molsen, you are so right about having to keep the anxiety in check ;) I was TOTALLY trying to do that until this last weight check...lol. Bellaria, ya know, I've had that creeping suspicion but I'm not ready to accept reflux as the cause. If I could *hear* her doing it, or *see* her doing it like i used to before, I might look at reflux......and while I know it could still be there, we are refusing to put her back on prevacid. We feel like her DRASTIC changes in eating behaviour are significantly (not totally), due to us taking her off of prevacid. JMO, in Rory's individual case. I think what the doctor was saying is that she could have started doing this a while back because of reflux, and maybe it's just a habit. I really thing, though, that she's in some sort of discomfort. Thanks for chatting last night, ladies. HUGE HUGS!!
Check with your
doctor first!