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Anika needs prayers


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  #1  
October 1st, 2004, 08:51 AM
LuckyGirlx4's Avatar Mega Super Mommy
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I don\'t understand it. Why can\'t things just happen one at a time????

History: Anika has severe GERD, Laryngealmalacia, Reactive Airway Disease, Hypotonia, Sensory Integration Disorder, Speech delay, balance/coordination problems (possibly mild ataxic cerebral palsy- still waiting to meet w/ the neurologist on that one)

Ok, lately I\'ve been trying to get Anika in to see the physical therapist at her thearpy school (she gets Speech, OT, and developmental therapy there), because there was a mix up in paper work and she\'s SUPPOSED to be getting PT @@. That\'s been my stress lately until now:
Anika\'s GERD has been stable at silent reflux, no vomiting for over a year, suddenly about 6 weeks ago she started vomiting (not a heaving sick kind of vomiting, but where massive ammounts of food and liquid just seem to FALL out of her mouth no less than an hour after eating what little she does eat- that started happening every once ina while. I mentioned it to her GI doc at last visit, and he scheduled another endoscopy in November (another hospital stay ) and said we will probably be talking surgery after. He said something about a hernia in her stomach? I\'ve never heard of that and I was too shocked about the surgery to get it together enough to ask. Well, since then it went from once in a great while, to once a week, and this week it\'s been every other day!!!!! She\'s already lost a pound that she can\'t afford to lose!!!
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  #2  
October 1st, 2004, 08:51 AM
LuckyGirlx4's Avatar Mega Super Mommy
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Sorry that font is so big! I didn't mean for that to happen, lol
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  #3  
October 1st, 2004, 09:23 AM
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AWWWWWW That poor little one! I hope you can find some help for her soon.....That is so terrible that she has to go through all of that. GOD BLESS HER.
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  #4  
October 2nd, 2004, 08:56 AM
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Definitely sending tons of prayers towards your little angel. Oh and also some to keep you strong!! Keep us updated. She's so young, I can't believe the stuff she has already been through....
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  #5  
October 2nd, 2004, 09:10 AM
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My heart goes out to you and Anika. I'm so sorry she's having to go through all that!

I once worked in a group home where I cared for a woman with a hiatal hernia (is that what Anika has -- the stomach hernia thing?). This woman also had SEVERE reflux too. I know that eating small meals and not drinking too soon after eating helped her. The hernia can be fixed through surgery I believe.

I will be thinking about you guys and I really hope Anika is feeling better soon!


Hugs!
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  #6  
October 3rd, 2004, 07:15 AM
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Anika is such a cutie pie. She will be in my thoughts.

My little Abbytale is a 7/02 baby also.
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  #7  
October 5th, 2004, 10:16 AM
LuckyGirlx4's Avatar Mega Super Mommy
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Quote:
Originally posted by collins73@Oct 3 2004, 07:15 AM
Anika is such a cutie pie. She will be in my thoughts.

My little Abbytale is a 7/02 baby also.
How cool! When is her birthday? Does she have special needs too?
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  #8  
October 5th, 2004, 10:33 AM
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I'll be saying lots of prayers for your little one. I'm sorry your going through all of this. Both of the boys had hernias. they found them when they were about 2mnths old. Andrew's was in his belly button and Nikolas's was in the groin area. The dr said it was because they were premature, and things just weren't quite finished when they were born. Evidentally it's common among premies, and it can happen in various places from what I understood. I don't remember all the medical jargon, like I really understood it, but something wasn't closed inside. Andrew's belly button looked like WC Fields' nose. His eventually closed on its own, but we watched it to make sure that the intestines didn't come through the hole and pretty much get strangulated. We have to watch for the same thing with Nikolas. Nikolas may still have a hole there, one dr said he didn't, he couldn't find anything but the surgeon said he did. So I keep an eye on him. Lots of hugs for you and your family.
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  #9  
October 5th, 2004, 11:11 AM
LuckyGirlx4's Avatar Mega Super Mommy
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Quote:
Originally posted by linda11567@Oct 5 2004, 10:33 AM
I'll be saying lots of prayers for your little one. I'm sorry your going through all of this. Both of the boys had hernias. they found them when they were about 2mnths old. Andrew's was in his belly button and Nikolas's was in the groin area. The dr said it was because they were premature, and things just weren't quite finished when they were born. Evidentally it's common among premies, and it can happen in various places from what I understood. I don't remember all the medical jargon, like I really understood it, but something wasn't closed inside. Andrew's belly button looked like WC Fields' nose. His eventually closed on its own, but we watched it to make sure that the intestines didn't come through the hole and pretty much get strangulated. We have to watch for the same thing with Nikolas. Nikolas may still have a hole there, one dr said he didn't, he couldn't find anything but the surgeon said he did. So I keep an eye on him. Lots of hugs for you and your family.
Thanks Linda. Anika had an umbilical hernia too, but it wasn't very big, and it closed on it's own. It was only the size of a grape. My friends' baby had one the size of a plum (and she was full term) that closed on it's own eventually. I don't know if this hernia (if indeed she has one) has anything to do with her prematurity or her luck, lol. I mean, she's over 2. It doesn't matter anyway, as long as she starts to feel better. Thanks for your prayers Linda
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  #10  
October 5th, 2004, 11:15 AM
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Gosh I know what you are dealing with, but not in such huge amounts.

My dd possibly had GERD as a baby. But we never did find out. She throws up easily and has a gag reflex. She doesn't eat many foods, mostly mushy foods. They have to be bland as well.

She has SID as well, it's sooooo hard!

I feel for you...you must be sooo exhuasted and overwhelmed. Every day is a struggle for us. But b/c dd's symptoms are soo mild and she is sooo smart and talking fine, they leave her be, so no help for us. B/c she gains weight, no one cared that she had such a bad gag reflex.

I feel your pain. My thoughts are with you.

Have you checked for post nasal drip for the throwing up? I'm sure it is what the drs are saying though. My dd has allergies and whenever she has a stuffy nose, she pukes all the time. She used to go to bed and wake up a half hour later and throw up and then go back to sleep. She will throw up if she eats too much at one time b/c it's sitting right up there and any gag (like brushing teeth) will bring it all up.

I hope all the testing goes well. Good luck to you.
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  #11  
October 5th, 2004, 11:24 AM
LuckyGirlx4's Avatar Mega Super Mommy
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Quote:
Originally posted by mom2one@Oct 5 2004, 11:15 AM
Gosh I know what you are dealing with, but not in such huge amounts.

My dd possibly had GERD as a baby. But we never did find out. She throws up easily and has a gag reflex. She doesn't eat many foods, mostly mushy foods. They have to be bland as well.

She has SID as well, it's sooooo hard!

I feel for you...you must be sooo exhuasted and overwhelmed. Every day is a struggle for us. But b/c dd's symptoms are soo mild and she is sooo smart and talking fine, they leave her be, so no help for us. B/c she gains weight, no one cared that she had such a bad gag reflex.

I feel your pain. My thoughts are with you.

Have you checked for post nasal drip for the throwing up? I'm sure it is what the drs are saying though. My dd has allergies and whenever she has a stuffy nose, she pukes all the time. She used to go to bed and wake up a half hour later and throw up and then go back to sleep. She will throw up if she eats too much at one time b/c it's sitting right up there and any gag (like brushing teeth) will bring it all up.

I hope all the testing goes well. Good luck to you.
My dd possibly had GERD as a baby. But we never did find out. She throws up easily and has a gag reflex. She doesn't eat many foods, mostly mushy foods. They have to be bland as well.

She has SID as well, it's sooooo hard!

[b]It sounds like your dd's reflux may be the SID. What you're describing sounds a lot like tactile offensiveness.[ She's not even getting OT????????? HOw old is she?/B]


I feel for you...you must be sooo exhuasted and overwhelmed.

That pretty much sums it up. :bricks:

Have you checked for post nasal drip for the throwing up?

Anika has had all the sleep studies, ph studies, endoscopies, even biopsies and we're sure it's GERD. She actually has a congenital anomoly in her stomach. Normally, your cardiac sphincter (the top narrow part of the stomach) opens up slightly when there is pressure in your stomach, this allows you to burp, throw up, whatever you need to "expell", Anika's for some reason opens up 2 to 3 times larger than it should when there is any pressure in her stomach- that's why she throws up- and that's actually not GERD. She has GERD on top of that. AGain, it sounds like your dd's throwing up and gagging is SID, and she should be getting OT services for it. ((()))
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  #12  
October 5th, 2004, 08:53 PM
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"How cool! When is her birthday? Does she have special needs too?"


Abby was born with Bi'lat-congent-cataracts. She had them removed at age 10mths. Wore contacts for a few months and had the IOL implant surgery for both eyes at age 14mths. She is currently wear glasses.


Her birthday is 7/2/02.

We post on the VI board too.
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  #13  
October 6th, 2004, 12:52 PM
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Quote:
Originally posted by LuckyGirlx4@Oct 5 2004, 01:24 PM
[b]It sounds like your dd's reflux may be the SID. What you're describing sounds a lot like tactile offensiveness.[ She's not even getting OT????????? HOw old is she?/B]


Anika has had all the sleep studies, ph studies, endoscopies, even biopsies and we're sure it's GERD. She actually has a congenital anomoly in her stomach. Normally, your cardiac sphincter (the top narrow part of the stomach) opens up slightly when there is pressure in your stomach, this allows you to burp, throw up, whatever you need to "expell", Anika's for some reason opens up 2 to 3 times larger than it should when there is any pressure in her stomach- that's why she throws up- and that's actually not GERD. She has GERD on top of that. AGain, it sounds like your dd's throwing up and gagging is SID, and she should be getting OT services for it. ((()))
Owow, yes, i have heard and research the sphincter. That is tough.

DD is 3. I never pushed the OT b/c I was dealing with allergies and colic pretty early on. I didn't want to come across like a hypocondriact. So we just dealt with the allergies, the post nasal drip hoping to get some relief that route.

She has done much better as she has gotten older. We try new foods all the time and she knows she is allowed to spit it out discretely into a napkin if she handle it. She will take too big a bite and do the same thing. As long as I was able to get some nutrition in her, they didn't seem concerned that it was only mushy type foods. She was still eating baby cereal at 2 b/c she liked it and it was nutritious. She still is a huge milk drinker, her fav. We also looked into the tonsils being too big as the reason for her gag reflex, but they say they are normal, no redness or infection...just big and that she would grow into them. So we stepped back and focused on the allergies.

She doesn't throw up very often anymore, mostly when she is sick or over stuffed herself.

She is happy otherwise and has been talking since a year old and has never stopped. So she isn't being affected that way.

We put her in a Montessori program (school) where she will get the extra attention in that area that she needs. The program is based on concerte materials...she'll learn textures and things are always based on things they can touch and manipulate. She has always put everything in her mouth and still does, so we work on that one. She likes to grind sand box sand in her teeth!

But we have embraced her and we muddle through, never do I punish her for her SDI issues. She is also very spirited, another issue that needs attention. I just hate coming across to the doctors like I am always finding something new with her. Since the colic was sooo bad and then the allergies hit at 4 months old, we just deal one thing at a time.

But she is making strides! She will almost always try any new food I ask her too. She eats pretty well now. It was harder as a baby b/c she couldn't eat crackers or bread, so those little snacks we used to introduce to babies to have something to chew on, didn't work for us. She is still not a meat fan, but that is okay too. She just doesn't swallow it.

Anyway, thanks for your concern. I always revisit this issue every now and then and I just don't know when to push forward. We'll see what her school teachers have to say at conference time.

Take care
Nicole
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  #14  
October 6th, 2004, 02:26 PM
LuckyGirlx4's Avatar Mega Super Mommy
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Quote:
Originally posted by collins73@Oct 5 2004, 08:53 PM
"How cool! When is her birthday? Does she have special needs too?"


Abby was born with Bi'lat-congent-cataracts. She had them removed at age 10mths. Wore contacts for a few months and had the IOL implant surgery for both eyes at age 14mths. She is currently wear glasses.


Her birthday is 7/2/02.

We post on the VI board too.
What a brave little girl you've got! Anika was born 7/16/02
I"m glad that Abby is doing well!
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  #15  
October 6th, 2004, 03:08 PM
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I just wanted to offer my prayers to your sweet little Anika.
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  #16  
October 7th, 2004, 04:08 PM
LuckyGirlx4's Avatar Mega Super Mommy
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Thanks you so much Maggie, that means a lot to me.
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