|Sep 23, 2008|
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Cooper's 9mo check; advice pleaseSo today was Cooper's 9 mo check up. I'm kind of frustrated with how it went. First, I wasn't sure what I was going to do about vaccines at the 6mo appt, so I decided to delay them. So today, I wanted to give him some. We are sort of following the dr sears alternate schedule. I don't like to mix ones that are high chem or have aluminum, so today I just wanted to give dtap and hib. They wanted me to give him dtap, hib, pc, hepb, and polio! I was shocked. That is 4 high chem and 3 aluminum together. No way! Plus, he doesn't even need a hepb or polio at this time. So I told her (the nurse) I just want to do dtap and hib. She said, well he's had these all before. I know that, but I don't want him to have them all at once now. She said that they have dtap,hib and polio all in one. So, I had to give him the polio when he didn't even need it! I was so mad. She also said, "it is 5 things, but only 3 sticks." like that was the reason I didn't want to give them. Honestly, that was the least of my concerns. Then, she tells me I have to read and sign this sheet accepting the risks of mot vaccinating my child b/c "they are expecting a big outbreak in a few years, b/c so many are not vaccinating". It isn't that I'm not going to do it, just want to split them up. Also, since when does the fact that I researched and made an informed decision about delaying vaccinations make me a bad parent. I have sacrificed a great deal to do what is best for Cooper, and *I* believe that splitting up his vacc is best for him.
Then the dr came in. We went over his weight, 17lbs9oz, holding strong at the 5th% still, but at least he is at it, not below. And he doesn't look skinny and sick anymore, so I was happy with that weight. He was 28 1/2in I think, about the 75% like always. It is good to see he's staying in about the same place. We went over development, all of that is good. Then we started to talk about food, well you all know how that has been. I told him I give Cooper peas, apples, and pears, as well as some homemade soup (carrots, yellow squash, rice, and chicken). I explain that he does not do well with anything in the soup on its own, but mixed in small amounts he enjoys it. I also told him he does some rice products for finger foods (brown rice cakes, puffed rice, perky Os(thought I think these may be a problem)). He said "that's fine, he's getting all the groups." I told him about the peaches coming up his nose and the sour breathe. He didn't seemed concerned. I mean really, he's 9mo and eats mostly peas! It seems like I need to do something. How is he ever going to wean!?! I told him I was concerned about feeding him and what to try, and that perhaps we should see a GI as the pulmo thought too. He said, "if you are concerned about feeding him, you should see a nutritionist, not a GI" Seriously, I know how to feed him, my question is about the intolerances. I've done all the elimination diet stuff on my own, I really don't think I need a nutritionist at this point, perhaps a GI or allergist. When I told him about the feeding issues and how little he is able to eat even though he wants to eat, he said "he has food induced antiphialtics" Ok, so don't you think we should see someone about that!!! He said, he'll outgrow it. URG! I was so frustrated. The whole appt I felt underminded as a parent. I mean I know if it weren't for me deciding to do the elimination diet on my own he'd have a tube right now. What should I do? I'm thinking of seeing another pedi who I know will agree with me on the GI. I mean seriously, we were considering a fundo, and the child has never seen a GI! It is kind of rediculous. I know the pulmo was treating him before, but know we don't see him, and I just know he needs a specialist. WWYD? Oh yeah, he also added back axid. I think it is probably a good idea, but at the same time it makes me nervous. It was one of the meds he was on when his liver function was so bad. I'm at a loss right now!
|Sep 23, 2008|
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!
|So many things going through my head: I think overall a lot of what happened is because the babies become "patients" and not babies to the nurses and doctors. They don't consider us or the babies as individuals making individual choices. They look at us as a group and when some make "unpopular" choices it probably makes bookkeeping and such a little more difficult for them (wah). They'll get over it. |
Sounds like your ped is kind of like my FORMER ped. He thinks he has all the answers that a specialist can provide and at a cheaper price. I was advised not to see specialists bc "he will tell you the same thing and it will cost more". So...with my ins I don't have to have a ped's referral. Do you? If you don't have to have it, just find a GI and allergist and handle it without the ped. That's what I did. Then if you see the ped isn't gonna cooperate with your decision--dump him. JMHO!
Ya know this whole vaccine thing kills me. I do give Mags and Morgan their vacs on the doctor's schedule, BUT that doesn't mean what I'm doing is RIGHT and the only way to do it. I believe that the drs just don't want to have to deal with someone doing it a little "out of the box". Sorry they made your visit hard. Hugs!
|Sep 24, 2008|
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
|You are not a bad parent! You are a caring individual who has taken the time to research what is best for their child!! Im sorry that you had to deal with such silly people. I just wish that they knew how to effectively listen. It seems so hard for them to think outside the box and beyond the masses. It is awful for them to be so pushy when you have already made up your mind. EVERY time I see the pedi I explain to him that I am uncomfortable with giving Seamus heavy metal laden vaccines when he has been injesting heavy metals in his meds for all of his life..Once he is off the meds I will go forth with crucial vaccines. He always makes me feel badly, and I never want to bring Seamus in for checkups. I totally know how you feel. Your know what is best for your child and you should not be told otherwise, period.Have you considered switching pedis and seeing somebody you feel more comfortable with? I think a check in with a GI is a good move, especially when it comes to giving Cooper meds. They USUALLY know their meds better than the pedis.AND usually they know a lot about nutrition and reflux diets..If you can see a GI, it probably wouldnt hurt..You kick bootie, don't let em make you feel otherwise!|
|Sep 24, 2008|
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
The only vaccine that we have declined is the Hep B. When I told the pedi she wouldn't be getting it he asked why and I told him that if she is having sex at her age someone is going to end up dead so her getting hep B would be the least of the worries. He told me she has to have it to enter 7th grade. Hello!!?? She was 2 months old!!
When Katie was 5 months old we noticed she was losing a lot of baby fat and fitting back into clothes she had outgrown. I emailed her dr this and was told that once they start moving around they lose baby fat. I responded that she can't even sit up in her high chair without falling over so there is no way she is crawling! He responded that babies don't gain weight the same as those first few months. Then 3 months later when we are back in his office he is concerned that she has only gained a few ounces but since she hasn't fallen off of the charts he is not concerned. She went from the 50th for weight down to the 5th where we are now. I was ridiculed for spending money on Alimentum when ordinary formula would do and now we have been put on Elecare.
We are only on a few solids and her GI knows that this is going to be a slow road and approved Elecare for 1 year and older because she refluxes up EVERYTHING but formula. I thing that Cooper, Sebastian and Katie should all be in a play group for kids who can't eat! I think the main reason they want to move to food at 1 year is calorie intake needs to be increased but if they can't handle food then it is in their best interest to take it slow.
I absolutely DID NOT want to take over your post but since our kiddos have some of the same food,/weight (he is a few ounces bigger btw and 2 months younger) and pediatricians who are too stubborn. Mine by the way is the head of the pediatric dept. for our region in our HMO so I should feel *lucky* to have him. If you do need a referral to see a GI just ask and they will usually comply just so that you don't make a fuss. I had to request a ENT referral from someone other than her regular pedi who was more than happy to do it and her regular pedi gave the GI referral without any comment.
Not sure if this is any comfort but we were told by the Geneticist that Katie's refusal to eat comes from the fact that she is stubborn and controlling her world through food. The fact that she eats the same amount at 11 months as 4 months in quanity and duration was not an indicator of some other problems so not all lazy doctors are pediatricians. REALLY didn't mean to write this much on your post!! Sorry I wrote so much, it just struck a nerve!! Big Hug!!
|Sep 24, 2008|
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.
|Hmmm, perhaps we have the same pediatrician.... Personally I would (and just did) insist on a referral to a GI. Cooper deserves to receive the best available health care, and since he clearly has GI issues, he is not going to get that from your average pediatrician. I would specifically request a referral, and if the pedi disputes it, insist on knowing exactly what he is basing that decision on. If he is unable to convince you that Cooper doesn't need to see a GI (which, of course, he won't be able to do), thank him for his input and insist that he submit a referral anyway. And then find a new pediatrician. You are not supposed to feel diminished and insecure when you leave the pediatricians office -- that is not in the best interest of the child. You should be leaving feeling informed, empowered and confident that you and your child's pediatrician know how to take care of your child's best interests. |
|Sep 24, 2008|
Meridith, mom to Ethan born 4/23/08. Ethan was diagnosed with reflux at about 1 month. He has been on Zantac (unsuccessful) and Prevacid. He is currently taking 7.5 mg of Prevacid 2x per day, with good results. We also suspect MPI, though this hasn't been confirmed by a doctor yet.
Ethan is mostly breastfed, though we are doing one bottle of soy formula each day. We also do some homeade "solids' including, so far pears, avocado, sweet potato, and peaches.
|I am so sorry that they made you feel this way. Our pedi actually admitted that she didn't like alternative schedules because they take more of the nurses time. As if I care. . . bill the insurance. |
I'm not necessarily suggesting that this would be a good choice for anyone else, but we are thinking of taking Ethan to a family practitioner, instead of a pedi, and then having specialists for issues. We haven't fully thought all of this through, but I am thinking that a doctor that we trust for our own health care could check weight, give shots, listen to breathing, check ears and nose, and we'd be in about the same position, perhaps without the guilt trips and flippant advice that we keep getting at the pediatricians office.
For what it is worth, I think that you are doing the right thing, and that you are a great mommy to Cooper.
|Sep 24, 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
|You are not a bad mother, completely opposite in my opinion. I think that a bad mother wouldn't care what a doc does to their child. Even though a lot of moms don't take their kids at all. Everyone has their own feelings about vaccinations and you need to do what you feel is best. As far as his feeding goes I wouldn't worry too much about the fact that he is only eating peas. I would be concerned about the allergies and the food induced anaphilactics. That makes no sense that he was so non chalant about those. I think you should definitely see an allergist or a ped GI. I don't understand why they would discuss fundo without sending you to a specialist. Does your insurance require a referral because if you not you might be able to just make an appointment with one or both of those specialist. |
BTW- I love the new pic. So Cute!
|Sep 24, 2008|
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, firstname.lastname@example.org, 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.
|Follow those mommie instincts and don't let the doctor belittle them. |
I was worried for Meggy to have 1-the chicken pox vaccination. She had had diarrhea over 2 weeks by then and her system was down.
The pedi insisted I was just overly concerned and that she needed it then. Guess what-she reacted-it had gelatin- a known allergen. I gave in.
Just saying you know your child better than any doc. ever could.
Glad u stand up for what u believe in.
|Sep 24, 2008|
|Goodness, how frustrating!!! I would find a pedi GI as your reg pedi doesn't seem to really listen to what you are saying. If your pedi won't give you a referral, I'm sure your pulmo will. Good luck.||Check with your