Posted By Posting
Jan 16, 2009
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
Rory Update
Well, I thought I would pop in and give everyone an update on Rory, since we've been so scarce lately.

So, Rory has been GERD and med free since September. Eating like a horse, but not drinking much milk. Since September and starting daycare, she has had Hand Foot Mouth Disease, two ear infections, two bouts of pink eye, and one continuous cold.

We stopped seeing her pediatrician in September, when she refused to see Rory for her pectus excavatum (chest wall defect). (Long Story)

Anyway, we now see the GP only, who very happily put in a referral to an allergist for Rory, because she has a huge stomach and recently developed excema. We were thinking allergies could be a cause to her poor weight. Problem is, the wait is 6 months.

Fast forward to her last weigh in. 19lbs. She is 22 months old. It occurred to me that she hasn't been getting any taller so I measured her. 30.5 inches. She is now off the charts for height too. So, I made her an appointment for this coming Monday, for full measurements. Her head hasn't been measured since she was 6 months old, nor has she had any bloodwork since then. I think it is time to re-evaluate considering that she is eating now. She is gaining LESS now that she is eating. Mind you, she doesn't eat well when she is sick....but she is not playing any catch up afterwards. I am demanding that we be referred to a new pediatrician.

Do you think I am right to be concerned about this? Despite the obvious, that she could just be small, is the fact that her tummy looks like it does not belong on her body, and her butt muscles are wasted. Her colour is always crap too. The closer she gets to two years old, the more concerned I am becoming with the fact that she does not even weigh 20lbs. What could be wrong with her?

Here is where she lies on the growth chart.

Photobucket

Jan 16, 2009
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.
Michelle,

I don't think u r overreacting in the least.

Couple questions: Has anyone checked her growth hormones, bone age, or digestive enzymes?

Also, being all that you mentioned with her being sick, I would certainly request that she be checked for Immunity levels. My allergist checked me for Pneumonia because I have had it so many times, and found that I am immune to something like 11 of 14 strands. I say this just to say that I am building immunity and that is very important.

You could ask that they check her for some of the things that she has had immunizations for in the least, like Chicken Pox to make sure that she is building immunity.

You have probably told us this already as well, but has she seen a geneticist. Sometimes they have a totally different outlook on everything as well.

What other symptoms is she currently showing other than the Pectus Excavatum, and the low height and weight? Does she appear in pain ?

If u have the opportunity and ability, I would suggest gathering all her medical records u can and creating a file for her. Also, I made a summary of all Meggy's Medical records that go to every doc. with us.

I would seek out another referral for pediatrician.

Jan 16, 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
Photobucket
Michelle, i would be very concerned too!

i think you are right in finding a pediatrician. it is one thing to be tall and skinny, that is not too much to be concerned about but the fact that she hasn't grown any in height is a concern. I think that coupled with the other symptoms such as her illnesses and stomach distention, you could be definitely dealing with allergies and/or enzyme deficiencies. But i also know you have known this for a long time. it is hard when you have to literally scream at the top of your lungs to get any doctor to pay attention. it pains me to know that she has not had any bloodwork done since she was 6 months old! most preschools require that lead levels and hemoglobins to be checked. Not to mention the fact that she is underweight, she should at least be checked for any kind of anemia. And a failure to thive work up should be protocol when children fail to follow their growth curve

I am glad that you are seeking additional help. I think that at this point, it is very important to find a doctor who is willing to listen to your concerns and approach it with an open mind.

in my honest opinion, i don't know how any one with such advanced educational background can ignore the obvious. I wish you luck with this. you are an awesome mom! -Sarah

Jan 16, 2009
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
Thanks girls. It makes me feel so bad when it is OBVIOUS to me, but not to her doctors, because they make me feel like I am overreacting and they say she is just small. So, I have been following orders and taking a wait and see approach, and quite honestly, I am DONE! I can't wait any longer. I want them to pay attention, because I am losing sleep over it. Engi, she's never seen anyone but a pediatrician and a psychologist. Oh, and a GI twice. I just don't know anymore, but I'm starting to feel like "enough questioning myself"......the dang charts don't lie!
Jan 16, 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!
I hate when doc won't take a concern seriously. It's not like she's had no other issues! Granted, there is a general slow down at a year, but it shouldn't stop. Alle's hit that point too, but she's at least maintaining on her own curve. You are right to be concerned....never let anyone tell you otherwise! Yes, she could just be small, but then again, it never hurts to check, right?

Alliergies are a thought, though I'd lean more toward a metabolic issue, like she has a nutrient malabsorption or something (esp with the belly and lack of growth, prior refusal to eat, wasting muscles...) Maybe request a blood panel for nutrient ratios? I dunno, mama - I wish the instruction manual was more than instinct!!!!

Jan 16, 2009
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.
just curious does she suffer from constipation? i came across some pictures while i was researching for audrey and this one medical picture i found was for congenital megacolon and the little girl had a belly and body that looked exactly like rory's picture you showed us. not saying rory has it but it looked so similar. i hope you get some answers on monday. good luck!
Jan 16, 2009
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+.
Trust your instincts you are a very good Mommy. I think it is way over due and time for a change. I hope the GP helps and gives you a new referral to a new ped. And I hope the new ped isn't a quack like your old ped. I hope you get some answers soon. Take care of yourself so you don't get anymore run down.
Jan 16, 2009
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!
As I said to Engi, I believe we MUST be advocates for our lil ones bc nobody else will! I def think you should push for anything you want...you're the mommy! We all pray there is nothing wrong with our kids, but if there is WE NEED TO KNOW!
Jan 16, 2009
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!
If it were my child the first thing I would get is a cbc and an iron level. She may be anemic... that would cause pallor and lack of appetite. Iron deficiency is the #1 nutritional deficiency in children so it would be a good place to start.

http://en.wikipedia.org/wiki/Iron_deficiency_anemia

Is there some reason why the pedi can't run the allergy testing blood work portion while you wait for the full allergist appointment??
Jan 16, 2009
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!
You know, one of the first things they suggested to me when Melina was FTT that didn't want to respond was genetic testing. Your last pedi didn't do that did they? (Like I don't know the answer). Maybe your GP will??
Jan 16, 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.
Hey Michelle, it's sounds like it's time to raise some crap and get Rory tested. I won't mention more, everyone has left you with great advice, but really, enough is enough now. No gain or growth is definately a concern. I hope they can also get you guys to see an immunologist. Keep us posted...HUGS and lots of luck!
Jan 16, 2009
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
I agree with the pps - you've been patient enough...someone needs to LISTEN. The total lack of growth is very concerning. Rory and Halley are only one week apart, but there is a huge difference in their weight/height. There has to be something going on and I hope you are able to find the doctors who will help you. (((hugs)))
Jan 16, 2009
jeddsmommy
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
Not to scare you further but Jedd was 20lbs at one years of age and that was WITH his feeding tube. At that tim eit was his sole source of nutrition.

Someone needs to stand up and LISTEN to you. Momma's do truly know.

I knew form day 2 something was wrong with Jedd!!!!! And he was my first. I knew his eating was WAY WAY off normal.

I pray the Dr appt on Monday will lead to further testing to get some answers.

BTW I know with feeding aversion kids it is VERY common to see a LOSE in weight when the chidl moves to solids form pureed foods. Purees just have SSSOOOOO many more calories than solid foods. So that could be why you are not seeing as much of a weight gain now verses in the past. I know she really doesn't have the averion much anymore WHOOO just he caloried thing I thought would interest you.

Has she been dropping in weight and height %tiles or is she still follwoign her onw curve?????

Jan 17, 2009
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 so wonderful. I agree with you all. I think, at the very least, for my own peace of mind, I want to have her evaluated from a nutritional stand point, iron levels, etc. I should clarify. She hasn't stopped growing altogether. Herein lies my problem. At our last GP visit in October, she was 18lbs 11 oz. She had HFMD in Sept and went down to 17lbs 7oz, so from the GP's perspective, there was a 1lb gain in 6 weeks, so she was satisfied that she was catching up. When I reminded her that she was 17lbs 7oz at her 12 month check up, so technically there was only a 1lb 4oz gain in 7 months, she said that toddlers growth slows in the second year. So now it's been three months and we've seen a 5oz gain. Also, she was up to 20lbs fully clothed on the hospital scale in November, but 3 weeks ago, fully clothed, she was 19lbs. I want to get a comparison weight on the same scale, to compare to the October weight. I know what she is going to say. It's all the viruses and infections she's had that is causing her to gain and lose. *MY* problem is that this child IS failure to thrive, and no one even thinks to measure her height?? My other problem is with her *rate* of growth. If she is following her curve it is one that takes her further and further away from the chart. She was in the 88% at birth for weight AND height. And the large quantities of food she is eating, it's very disturbing that she is not growing at a better rate. I have major guilt for taking her off the bottle, taking her off formula (even though she wasn't gaining great on it anyway), sending her to daycare to get sick once or twice a month, and for leaving her pediatrician. I just can't accept she is just small. My friends little girl is 8 months old, born THREE MONTHS premature, and now weighs as much as Rory. It's scary.
Jan 17, 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.
You are a GREAT mom Michelle, how could you have known then? The weight gain is too minimal despite the viruses. Obviously kids eat less when they do't feel well, but hers is too minimal. She should have normally gained weight, even 3-5 lbs per year (which is considered minimal/normal for our LO's at their age). So Hopefully you can talk to your GP and ask that he either give you a referral for a PED. or ask if you can do weight and height checks every month or two months, so that you can establish a pattern. It may be difficult to compare everything since all weights were different scales etc... But no reason why you can't start now, and keep a record. It's never too late.

Take it easy on yourself too, you are doing the best that you can and that's all any of us can do. HUGS

Check with your
doctor first!