Megan's Gagging Isn't Any Better

[VydorScope]

TCA,

Do you knwo how the heart condition could be cauing the gagging? I am sorry if you said that already and I missed it somehow...

[TCA]

TCA,

Do you knwo how the heart condition could be cauing the gagging? I am sorry if you said that already and I missed it somehow...

We don't know for sure, just hopeful. Her body is not a well profused with oxygenated blood as a normal baby's would be. Her gut is therefore not getting a lot of oxygen. The GI is hopeful that fixing the heart will get more oxygen to the gut and allow it to work better. He basically has tested for everything he can with now luck, so that's what he's hoping and I'm hoping he's right.

Andrea - Thanks for the encouraging words. I guess I need all of you to remind me of what I already know!!!!

[Judyin Philly]

tanya

just sent you a email. I think Andrea hit it

( - Thanks for the encouraging words. I guess I need all of you to remind me of what I already know!!!!)

The forum helped me do this when I was trying to hard to figure it all out...They'd remind me of things I'd forgotten b/c of being so over saturated with new info and was really 'spinning'

also I kept trying to focus on "LET GO AND LET GOD" Sometimes I have alot of trouble with that one...

i keep trying to 'take it back' and tweek it alittle..If we give it to him..we should just let him KEEP IT. AND WORK HIS MIRACLES.

HUGS AND LOVE

JUDY

[Fiddle-Faddle]

Hi, Tanya, just checking in. I hope you have a better night tonight.

I'm sorry to ask y ou this, you've probably answered this several pages ago, but I can't find it--is Megan's surgery to close the VSD, or to connect the 2 chambers, or something else? Is the pulmonary atresia the more serious problem? How big is the VSD? Did the VSD change in size any as she has grown?

I've been looking things up on the Internet, hoping to find something helpful for you, but am coming up empty. Michael's VSD was 6 millimeters when he was 7 weeks old, which they said was pretty large for a 4 1/2 pounder.The cardiologist didn't expect it to close on its own. We didn't even know about the second VSD until the first one started to close when he was about 18 months old. He still needed surgery when he was 2, but by then both holes had closed--the surgery was to remove an anomolous muscle bundle from the right ventricle.

He did gain better after the surgery. With the breastfeeding, I was able to get him to the 10th prcentile in weight from about 3 months old and he zoomed to the 75th percentile in height at 3 months old, too. After the surgery, his height went to the 90the percentile, and his weight went to the 75th, which is about hwere he is now, but there were several years where he was so far off the charts for height , they tested for Marfan's and a bunch of other stuff. We will be going to see his old cardiologist (who moved to another city )this summer to check on the new cardiologist's diagnosis of an enlarged aorta.

I'm sorry to be babbling on like this. I feel like somehow the answer to all this must be staring me in the face if I could just put everything (all the info on this thread plus Michael's experience) together, but I just can't figure it out. Michael had reflux (but very mild compared to Megan), he definitely had a problem with milk between the ages of 1 and 2, he responded really well behaviorally going off gluten and casein at 5, but didn't react at all going back on, he reacted very badly to at least one vaccine....WHERE IS THE CONNECTION, WHERE ARE THE ANSWERS??????

Rhonda said something about shots--sere those childhood vaccines or something else? And sulfites--where does that fit in? It seems very likely that it does, but WHERE????

I feel like a 2-year-old trying to put a jigsaw puzzle together that's in a language I don't know.

[AndreaB]

I'm sorry to be babbling on like this. I feel like somehow the answer to all this must be staring me in the face if I could just put everything (all the info on this thread plus Michael's experience) together, but I just can't figure it out. Michael had reflux (but very mild compared to Megan), he definitely had a problem with milk between the ages of 1 and 2, he responded really well behaviorally going off gluten and casein at 5, but didn't react at all going back on, he reacted very badly to at least one vaccine....WHERE IS THE CONNECTION, WHERE ARE THE ANSWERS??????

Rhonda said something about shots--sere those childhood vaccines or something else? And sulfites--where does that fit in? It seems very likely that it does, but WHERE????

I feel like a 2-year-old trying to put a jigsaw puzzle together that's in a language I don't know.

Do you remember which vaccine. DTaP, MMR, Varicella have gelatin, Pneumococcal has soy protein & yeast, Hib has yeast, most shots are also involve aborted fetal tissue as well. I have a long document that lists ingredients used...if you remember which shot he reacted to (or the group) and can let me know his allergies maybe I can find something.

[Judyin Philly]

wow you MOM"S amaze me...best 'RESEARCHERS' OUT THERE.

HUGS AND LOVE

JUDY

[VydorScope]

wow you MOM"S amaze me...best 'RESEARCHERS' OUT THERE.

HUGS AND LOVE

JUDY

Most of us parents (us fathers alwyas get overlooked here ) have learned the hardway to research ourselves and not count on the normal channels.

[VydorScope]

We don't know for sure, just hopeful. Her body is not a well profused with oxygenated blood as a normal baby's would be. Her gut is therefore not getting a lot of oxygen. The GI is hopeful that fixing the heart will get more oxygen to the gut and allow it to work better. He basically has tested for everything he can with now luck, so that's what he's hoping and I'm hoping he's right.

Andrea - Thanks for the encouraging words. I guess I need all of you to remind me of what I already know!!!!

Well I must say that sounds very logical. I hope it is right. If not, repairing the heart might at least make seeing other issues easier!

[Fiddle-Faddle]

In Michael's case it was the vaccines he received at 2 months . I think there were 3 or 4 at once--this was before I knew any better. I assumed it was the DTaP that caused the reaction (hours and hours of screaming like I've never heard before or since). His only allergic reaction has been to amoxicillin. He had diarrhea and and ear infection with his first glass of cow's milk, so I waited a week, tried again, same thing, so we did soy milk (first mixed with breastmilk) for several months, then gradually added small amounts of cow's milk, and he had no further problems with it.

Michael is doing fine. Since, like Meg, he had the cardiac problems (big VSD) and gagging (much milder than Meg's), I'm trying to figure out something, ANYTHING, that might help Meg.

[evie]

Most of us parents (us fathers alwyas get overlooked here ) have learned the hardway to research ourselves and not count on the normal channels.

<_<I knew the guys were going to feel left out!! Vidor, it is just that you guys are in the minority, not that you are not appreciated...you defffinitley ARE. Keep helping us Mom,s and etc out. Off to church so all of you guys and gals have a GOOD Day. evie PS. Have a dinner after church and a wedding shower so I am taking food for group and my own food (gluten free). Am getting used to this, took to another shower and to my quilting group, might as well not be shy if I want to be social at all!!

[Judyin Philly]

DEAREST VINCENT--'MY OLE' COOKING BUDDY' IF you take note of the time i posted-- you'll understand.... 3:49AM.. My original post DID INCLUDE DADS but i had to re type it all b/c i started typing with my fingers on all the wrong keys ...I guess at that time of the morning i'm lucky i'd even got the post up.

I posting while waiting as the printer was printing all 67 pages of Tanya's thread. T

There is just so much info there and even tho i'll never have more children of my own at 64 you never know when you need the info for someone else or at least to help me keep all her info straight so i don't have to keep re asking questions.

I've posted on your thread about your son on what a great job you and your wife were doing..hope that covers my 'big butt'

I sure did my share of research on DYSLEXIA ( of course i found i had it but guess you all know that cause of my horrid spelling on here)

So when our son was dx'd back in first grade and fought for him and his rights all through his school years and college..so i have my battle scars too...but non like the ones i see here on the food issues. my son did have allergies and asthma but i didn't have a computer back in those old days...so my research was mostly limited to books and the computers I gain access to.

we still friends????

Judy

[Cheri A]

((Tanya)) ~ thinking and praying for strength, wisdom and sleep for you! Hope that last night was a better night for Megan! I have never been in your situation, but I so know about being sleep deprived as my 7 year old did not sleep until last Fall b/c of all the itching, bleeding, oozing eczema she had.

[VydorScope]

Of course Judy!

[Judyin Philly]

whew! Now i can take my nap.

Hoping to hear your nite and day are going well Tanya

Judy

Of course Judy!

[TCA]

sorry it's taken me a while to post today. I've been trying to spend all the 1 on 1 time with Meg I can while the boys were gone. She slept all but about 5 hours yesterday and has only been awake about 3 so far today. Everything I read says sleeping a lot can be a sign of heart failure. I'm so glad the drs. will be back tomorrow. I'm anxious to hear from them, as you all know.

Vincent, you're right that getting this behind us will be one of the biggest hurtles. If things don't improve GI wise we at least know that it's not her heart at that point. BTW - I have a special place in my heart for dads. My Dad raised me and my brother when my mother left. I was 4 and my brother almost 2 when he got custody of us. No parent has ever fought harder for their kids than he has us.

Evie - glad you're getting out more! I'll be glad when we're able to. Thanks for the prayers!

Judy- I replied to your e-mail. Thanks for the suggestion of starting a post surgical thread for updates. I'll try to do that!

Fiddle-Faddle- You make my heart swell so much that tears spill out! You are so loving and kind to be so dedicated to finding answers for us. I know exactly what you mean. It's a BIG puzzle with a gazillion pieces. I'm so thankful to have put part of them together with the help of all of you, but working hard to figure the rest out. I'm so glad your son is doing so well now. I didn't realize about the enlarged aorta. What does this mean long-term? Meg's aorta has a slight leak and may have to be fixed in the future, but is ok for now. She will undergo her next surgery at around 5 or 6 and her next as a teenager if things go as planned. I'm sure they'll have opportunities to look into it then. Meg never had any reactions to her vaccines. I don't think there is a connection there, but who knows????? This sulfite thing is sounding more and more like a possibility. I'm just so hesitant to take her off of everything. Andrea made an excellent point about being able to try it better after surgery.

Cheri- So sorry about your little girl. Cole didn't sleep through the night until going gluten-free. I think most moms are very aware of sleep deprivation! I hope you're daughter's eczema is better now. Meg has it too, but not that bad, thankfully. Hers is just on her hands and feet and we have no clue about it either.

My MIL thinks I need to give the research a rest until after surgery to see if that fixes things. Maybe she's right, but my mind keeps racing and I really think there is something else that's being missed. Of course she also thought I was just crazy for trying the gluten-free diet after Cole's tests were negative, but now she's a believer.

God will reveal clues in good time. I just have to be patient and pray for wisdom. Patience is not one of my strengths, but I guess I'm learning the hard way!

[mouse]

Thank you for the update Tanya. I check in 3 or more times a day to see how you and Megan are doing. I know it is so hard for you to find the time, let alone the energy to keep us informed. Please know that we are not snooping, but are geninuely concerned for all of you. My many prayers and hugs are coming to you daily.

[TCA]

Thank you for the update Tanya. I check in 3 or more times a day to see how you and Megan are doing. I know it is so hard for you to find the time, let alone the energy to keep us informed. Please know that we are not snooping, but are geninuely concerned for all of you. My many prayers and hugs are coming to you daily.

I Never think you are snooping. I'm glad to give the updates. All of you make my day brighter!!! thanks for being so concerned. The prayers keep us going.

[Judyin Philly]

Tanya,

Going to bed early and wanted to ck in and see how you are.

blessings being sent for a peaceful and restorative nite for you and your family

Love, hugs and prayers..

judy

[Guest Robbin]

Thank you for the update, Tanya. Think of all the searching and praying so many of us have done before figuring out the gluten connection, we become dectectives! There is something causing Megan's gagging and retching and it is waiting to be found. The moms and dads on here have had to become expert "Miss Marples" and if the surgery doesn't correct the stomach issues, then you have the collective knowledge of so many people to help you. This is a resource that is better than a roomfull of drs. These people have lived the illnesses and we all have fallen in love with Megan . I constantly have the feeling that this is something staring us all in the face and we just have to focus--like one of those magic puzzle pictures. I am praying for you both, and for the doctors--that they have sharp eyes, warm hearts, and steady hands. Sweet dreams to everyone.

[Judyin Philly]

Robbin--what a beautiful post

you covered it all and in such a beautiful eloquent way.

judy

Thank you for the update, Tanya. Think of all the searching and praying so many of us have done before figuring out the gluten connection, we become dectectives! There is something causing Megan's gagging and retching and it is waiting to be found. The moms and dads on here have had to become expert "Miss Marples" and if the surgery doesn't correct the stomach issues, then you have the collective knowledge of so many people to help you. This is a resource that is better than a roomfull of drs. These people have lived the illnesses and we all have fallen in love with Megan . I constantly have the feeling that this is something staring us all in the face and we just have to focus--like one of those magic puzzle pictures. I am praying for you both, and for the doctors--that they have sharp eyes, warm hearts, and steady hands. Sweet dreams to everyone.

[TCA]

Thanks Robbin for those beautiful words. Megan has her own personal little team of detectives! Not many little girls can say that. I think most of you saw my post about our ordeal with the snake last night. Megan had a bad night. The gagging is still just completely out of control. I think she's teething too because she's crying a lot and pulling at her ears and rubbing her gums. Still haven't heard from drs., but I hope I do soon. I didn't get in bed until 1:45 with everything that happened, then Meg was up at 2:30, Cole woke up at 2:45, Meg again at 5 and was unconsoleable. I finally just stayed up with her until about 6:30, then went back to bed for about an hr when I finally got her eased off some. Hopefully we can all get good naps today!

[AndreaB]

Tanya,

I hope Megan and Cole end up sleeping at the same time at some point today so you can catch some z's. I don't know how you do it...I get really crabby when I am consitently down on sleep like you are. You're a great, albeit tired Mother!

[schuyler]

I'm sorry that Meg had a bad night; hopefully today is better. I'll keep praying or Megan and the rest of your family.

[DingoGirl]

TAnya - - I don't have children and can't imagine what you're going through, but my heart goes out to you and your family....I echo what Robbin said so beautifully - - sending prayers for you and hoping for strength and peace - and some sleep - during this time....

blessings -

[TCA]

Just heard from Vandy about an hour ago. Surgery is a go for 7/25. I was relieved to hear this, but I think I'm going to throw up at the same time. This isn't an easy thing for any child to have to go through, especially your own. Please pray for this to go as perfectly as it can. Thanks for all the support. I think I'm just overwhelmed right now.