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Nov 03, 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.
Venting-Would u be concerned?/am I overexaggerating?
Sorry for the vent. I am just feeling frustrated and afraid for Meggy's life.

My daughters current pedi. and my DH both think that I am blowing things out of proportion and that there is no concern here. I feel in my heart that something is wrong and needs to be addressed sooner than later. I have taken her to every specialty I can think of other than orthopedics, but we are sent home always with words similar to: I don't know what her problem is but it is definitely not "whatever specialty we r at."

She is just so so thin and she lost over an inch in her belly. She gained some height yes, but at what expense. The GI says yes, we can put a feeding tube, but what would we put in it? She reacts to everything. I think he is right. Can't fix one problem to create 20 others.

Sometimes I feel the pedi. must be seeing a different child than what I see. She tells me that Meggy is just small like her daddy.

I don't want my daughter to lose her life because I failed her as a mommie. I love her so very much! Am I forgetting something? What else is there to do for her?

We got to John Hopkins on the 23 of November for endoscopy and colonoscopy. We are asking them to get genetics involved and biopsy for mitochondrial disorder as well. We don't know that they will, but otherwise we can't get anyone here to test her before the new year.

U may not know what to say, but the fact that u read this whole thing means something to me. I just don't know what to do right now. I feel helpless in the situation. I feel I am her mommie and I should be able to fix this, to take away her pain, to make her healthy, but right now it is not happening.

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Nov 03, 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.
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Nov 03, 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, I've often been told by Rory's daddy that I worry too much. I, like you, have questioned so many things on these boards with respect to many aspects of her health, the main one being her growth. I'll first say that Rory has never been in extreme pain, as you describe for Meggy, but I have also been "pshawed" by doctors. Here in Canada, I have had to BEG to see the GI, convince her pediatrician with videos and then proceed to BEG that she see someone in the feeding clinic. I know that I did the right thing by begging. We've come to the point that I am mostly convinced Rory is healthy, now that we've had testing to rule certain stuff out. I have had to "train" myself not to analyze everything and not to worry so much. Sending her to daycare and getting a job helped with that. I have no choice now. I've left here numerous times hoping that it would ease my obsession, kwim? It is true, though, that some kids are just small. I've not fully accepted that as true for Rory. She is tiny. Too tiny, IMO. She is ribby, has the teeniest little bum-bum, her skin hangs in her pits and groin. But she is healthy. If it were not for Meggy's pain episodes and allergies, I would tell you not to worry. Instead, I will tell you not to worry TOO MUCH. You don't want to feel like you missed out on enjoying her while she was little. Have you been plotting her? Does she follow her own curve? What is her weight-for-length?
Nov 03, 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
She's beautiful, btw. She reminds me a lot of Rory, same hair color, same skinny little arms....our little doll babies, eh?
Nov 03, 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'm so sorry that you are so worried. I generally believe that our worries are clues to what we should be concerned about, and try to trust my instincts.

This has probably already been done, considering she has been at Johns Hopkins, but maybe it hasn't and it will help. I don't know if this is an idea that would help or hurt, but could you convince a doctor to do a complete blood work up, seeing where all of her nutrient levels are. If the tests are okay, then you might worry less about her weight. On the other hand, with her allergies, I'm not sure what you could do if something was off.

If it helps any, just from reading your posts, I can tell that you are a great mommy. You are trying so hard to find a solution, and Meggie seems to interact well with you. (hugs)

Nov 03, 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!
Of course we care and we read the whole thing!

I do have personal experience in the "overreacting" dept, but I also have personal experience in the "mother's intuition" dept. I don't look at Meggy's pics and think she looks sickly or malnourished, but she is definitely small. I will say that my 9yo has always grown up and then filled out shortly after. She is the size of most 6 yr olds and she is perfectly healthy. My ped always said to look at her weight compared to height, not her size compared to everyone else. How does that compare for Meggy?

I'm not real up on all the tests and stuff, but I think you're going in the right direction. Do some tests, then if they don't show anything, do some more. As long as it's nothing that will hurt her, then do what you have to do to figure her out. And you never know...it may turn out that she's just a small child :)

Just know that you ARE a good mommy. You're doing all that you can. Hugs!

Nov 03, 2008
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 never had the pain issues, but I NEVER got above the 5th percentile in anything. I looked back at my records at Allie's one year check to compare - I was 25" and 14 lbs (at 28 I'm 5'2" and about 95 lbs.) So being small sometimes does just mean bring small. But listen to the pain. You're being a good mommy by acknowledging it and trying to do what you can. HUGS
Nov 03, 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.
just curious, hospitals can build formulas, has anyone on P2P talked to you about it? I know a few moms that had formulas built for their babies by specialists. Have you ever looked into to TPN? maybe that might be a option i don't know the extent of circumstances they do that under but i think it's usually pretty drastic ones. Scope is a very good idea and probably the first really good step into figuring out what's going on. i wish i could help you more :(
Nov 03, 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
Big hugs, Norr, you are NOT overreacting, you are being a GREAT MOMMY!!!!!!!!

Iwould wait until you get the results back form the scope. They amy end up giving you LOTS of info to work with. KWIM....I certainly hoep they come back clear but if not, then you ahve more information to process and to make a better decision.

I knwo it's hard to be in a holding pattern, but I woudl jsut hold off and see what those 2 tests will tell you. From there you can make a game plan.

Have you talked to anyoen at P2P about Viscreal Hyperaglesia??? That may be what is going on. It's really rare and I don't know alot about it, but there are a few over there with it. So I'd ask. Do it in the Motitliy section and you shoudl get a bigger response.

A member here Jessica Lynn, her son, Brent, has this.

Nov 03, 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.
It is not so much Meggy being small that bothers me. I love it that she is so teeny tiny and still fits into 0-3 months clothes.

It bothers me that she is hurting to much to eat enough to maintain nutrition. It also bothers me to see her muscles appear to be wasting away and her being so much less active than she has ever been.

It breaks my heart to see her so tired she can't stand herself, but hurting too much to sleep.

It just seemed odd that she lost a whole inch around her belly in one month.

Meggy has had some pretty extensive work-up. There are some consistencies in abnormalities for Meggy.

Her MCH is usually low,

Her platelet count is often high,

lymphocytes are often high,

bun is often low,

chloride is often high,

CO2 is often low,

Urine specific gravity is always high,

usually puss in urine, but no infection,

usually blood in urine,

sometimes crystals and ketones in urine,

sometimes protein in urine,

Her urine organic acids has this statement:"Mild elevations 2 ketoglutaric acid and medium chain dicarboxylic aciduria are probably secondary."

Endoscopy biopsy showed complete lack of enzyme lactase.

Endoscopy biopsy showed eosinophils (allergy cells) in stomach, and intestines.

She has low ammonia,

Moderate aniso,

Few Shistocytes,

2+ Micro,

Occasional Creanated RBCS

Occasional Poly

Her weight has flat lined. She hasn't gained any according to the way the doctors calculate since February. However I am looking at her hospital records right now and it says she weighed 14.1 in February and weighs 17 lb now. Her head circumference was 42 cm in Feb. and is 45 cm now. Her height was 27" in Feb. and is 30 now.

So, although they tell us that she is not gaining, she is, but not enough to compensate when she is growing in order to maintain proportion.

This combined with what looks to be petite mal seizures (absence seizures) and the other strange stuff like fainting spells, heart rate 140 + while sleeping, sometimes breathing rate is over 30 while sleeping. The blue spells she has been having.

I know some things can be coincidental, but it sure seems like a lot going on.

Just during this last week, she has been holding the back of her head and sobbing. she sits on her knees with her head down to the floor and her hands on the back of her head (like we were told to do for tornado drills during school) screaming owe, help, owe help, pees pees pees. She doesn't want to be touched even. Sometimes, I am not sure she even knows that I am in the room with her during this.

Nov 03, 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.
Oh, mama, I am so sorry you are going through this. It is so hard to watch your little one suffer and not know what to do to help. I, too, have been told I was over reacting and was even told I was flat out wrong in my own observations of my son when it came to him not breathing in his sleep. I fought for months trying to get his pedi to take what I was saying seriously, and when she finally gave in and referred him to a doctor who ordered a sleep study -- guess what? He has sleep apnea. Now I knew that at one point, but I was so demoralized and exhausted and lacking in confidence by the time it was diagnosed that it took a long while for me to get my head around it. And then I was furious. I knew something wasn't right, I even had a pretty damn good idea what it was, but still I wasn't taken seriously.

Do not doubt your mama instincts. If you feel like something isn't right, it probably isn't. The big question is, is what is wrong something that needs to be treated in the ways western medicine treats health challenges. One thing that has become clear to me is that western medicine is really quite good at treating a crisis. If someone is suffering from an acute illness, that model generally does a pretty good job of taking it seriously and trying to treat it. If, however, the problem is not acute, if it involves either long term health issues or quality of life issues, the western medical model seems to have very little to offer. Personally, if I were in your shoes, I think I would continue to try to insist that her doctors help you understand EXACTLY what is "normal" and what is not about Meggy's health/body/systems -- you have a right to have them explain exactly what all of the highs and lows in her blood work indicate, for example. You are the customer in the health care system, and physicians have an obligation to provide you with information to the best of their abilities. But at the same time, I would investigate alternative medical models, like homeopathy, Chinese medicine, acupuncture, and craniosacral therapy, to name a few. These offer a more holistic approach to medicine -- looking at the whole person, body, mind and spirit, in order to address the ways in which all influence one another. I truly believe that we are more than just our bodies, and that makes us very complicated creatures, but western medicine is really designed to treat just the body.

I feel for your suffering over how to do the best thing for your precious girl. It's one of the hardest things about parenting, I think, that balance between worrying enough to care and caring enough to not worry about every little thing. What you describe does not sound like "every little thing." Your mama instincts are not coming out of the blue, you are actually observing evidence that Meggy is hurting. You are observing and listening to your child and trying to find a way to lessen her pain -- that is what mothers do. It is our job, and you are doing great. Hang in there...

Nov 04, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Your daughter is very lucky to have you, and it sounds like you are doing everything you can to find out exactly what is going on. John Hopkins is suppose to be a great hospital, hopefully together you will be able to figure it all out. I wouldn't really listen to whether the pediatrican thinks everything is fine or not because conditions like this are usually out of their league. Ellen
Nov 04, 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.
You are the only one that really knows your daughter. You are the only one that knows if something is not right.

It is so hard to hang in there & fight but you are doing such a great job. Keep fighting and keep searching and you will find your answer. You will.

Sounds like the Nov. tests could be a big help and fight for genetics to get involved.

You are the best mom and I know you won't stop until you get it figured out.

Are you taking care of yourself? Do you need some help with your anxiety level to get through this? When I was in a major holding pattern with Katie, I had to take something for the anxiety. It actually helped me thing more clearly and make better decisions.

I always keep Meggy in my prayers.

Nov 04, 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.
has she seen a uroligist, or had MRI???
Nov 04, 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 know that we have talked about this before but alot of Meggy's symptoms and actions are so much like Adriane's. I think everything that you are feeling is warranted. Perhaps that is because I have been there. As far as the seizures go I think you should find a good Ped Neuro and get a long term EEG done. I know it is a pain, we have had 2, but it could be worth it in the long run. A didn't respond to the short term and the lights, thanks goodness, but they found the problem when they did an at home study for three or four days.

Is the screaming and head holding a new thing. Seems to be the first time I had read that. Has she had an MRI or anything like that. Seems like that could be a problem.

I think she could just be a small girl but until you know for sure it isn't due to a lack of something else or something that you can help and solve then you will not be satisfied with that answer. You are doing the right thing. I see where you say that she has a lack of lactase enzyme. That could be why she can't tolerate a lot of formulas. We have to put liquid lacteeze in her formula at least an hour or more before she drinks it. Our GI keeps talking about TPN. I know that it is so hard on their bodies. That is why it is only a last resort. It can really hurt their kidneys and stuff. Yet, if their bellies can't handle anything then that is your only option. Has anyone talked to you about this?

I know that you are doing everything in your power to help her. The worst thing is watching your baby hurt. You have some tests scheduled and I think you should call John Hopkins and get some other specialties involved in her case, if that is an option for you. I would def. get a neuro guy involved. As well as the geneticist. Please feel free to email me anytime. I finally got my computer back at home and we seem to be going through alot of the same issues. amandawhite@clevelandtigers.com -Amanda

Nov 04, 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.
Go with your instincts. Everyone told me the same thing each time we discovered something new about Jazz. It sounds like you need to take some drastic action. I hate to say this, but sometimes you need to exaggerate the truth, throw tantrums etc.. to get people to act. I am a Nurse in an ER hospital, and sometimes you have to do whatever you can, scream, cry demand and don't stop. I'm here for you. I know about the weight thing too, Jazz probably won't hit 22lbs by two..... but it's about the symptoms and comfort....HUGS!
Nov 04, 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.
BTW- why aren't they actively treating her Eosin. disorder?
Nov 04, 2008
amber f
I don't have anything to offer you except a big giant hug. Keep being her advocate. You are doing a great job with her. Keep fighting!
Nov 04, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
(((hugs))) to you...I agree, it seems like there is an awful lot going on. You are a good mommy and you should follow your instincts...I hope that when you go to John Hopkins you get a doctor who will be much more proactive in trying to find some answers for you. It must be so hard to see her in such pain! She looks a lot like my middle child did at that age. Sarah wasn't even on the growth chart but since she was plodding along at a steady pace (about half and inch *under* the growth chart!) her pedi told me not to worry. She was wearing size 6 months dresses as shirts at 2 years old! She did get better, though...she's pretty normal size wise now. But I understand your concern...and I don't think that you're wrong for wanting to continue to look for answers. I can't believe that nobody has figured out what she can eat and how to help her...it's not right for a doctor to just ignore that! I wish I had information that would help...but I will be praying for you and I really hope that the new doctors will be much better at helping you. I think in the meantime, I'd do a lot of video taping, record keeping, and symptom recording so that they can see what you are seeing on a daily basis. I'm sorry she's having so much pain, it's awful to see your child suffer!
Nov 04, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
Your situation has brought tears to my eyes , Im so sorry your daughter has to be in such pain. You have a lot of very concerned people here for support. I will pray for you.
Check with your
doctor first!