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#31 of 53 Old 04-02-2014, 12:04 PM
 
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http://www.cureceliacdisease.org/archives/tag/gluten-sensitivity

 

The last question mentions this kind of testing. It's very expensive and not accepted as diagnostic by most Dr's. 

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#32 of 53 Old 04-03-2014, 06:29 AM
 
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We never had testing, but I refuse to go back to eating gluten because we all feel so much better on it (and conceived our rainbow baby after 5 losses in a row).

 

I would say if symptoms are reduced/gone, then they're sensitive. You know your children best. 

 

If you do send to public school, just send all of their food in with them. I would never let my kids eat school food anyway! LOL If you know they're having something special (cupcakes or something), you could always send in a GF alternative.


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#33 of 53 Old 04-08-2014, 12:11 PM
 
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Originally Posted by nycmom18 View Post

Also, is it true that you need a diagnosis from a doctor in order to keep your child gluten free at school? How can they tell you what your child will eat?

I just tell the teachers my son is gluten sensitive, and cannot consume gluten. I recently had to update his school profile where it says 'any allergies', where i wrote, he is wheat, corn and oat sensitive. Even though he isnt allergic, he is 'sensitive' they said it didnt matter. I didnt need a docs  note, and you can bet that if i did, i would make a big fuss.....

 

....no,...come to think of it,  i would just let them see what gluten does to him and they can handle it. They will love his hyperactive,obnoxious, oppositional, aggressive behavior after ingesting gluten. :lol  Let 'em deal with it i say!

 

Fortunately for them, they are smarter than that, no need for anyone to suffer.

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#34 of 53 Old 04-09-2014, 06:01 PM
 
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OP, can you explain the correlation between dark under eye circles and gluten sensitivity?

I hope I am not crashing your thread, just curious. Thanks!
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#35 of 53 Old 04-10-2014, 05:56 AM - Thread Starter
 
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I have read it could be a sign of gluten intolerance. I'm not sure if that means allergy related, or that the gluten causes mucus in the sinuses causing restricted blood flow.
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#36 of 53 Old 04-11-2014, 09:27 AM
 
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Hi, I hope I'm not to late to help! I didn't have the time to read all anwers, so i don't know if someone whit a gluten allergy child answerd!

My son, my sister, my grampapas are very allergic to gluten! But a blood test isn't always positive for celiac disease couse it is not always a celiac desiese! Sometimes it is just an intolerance but they don't test for intollerance anless the doctor ask's specific for it!

My son showed his simptoms very early! At age 1 and a half! But we didn't know back then that it was, becouse the simptons on my sister and grandpapas wore very differnt then his! So first of all, go see a doc! Normally they don't even know how to procede or what to do! So inform yourself very good before going there, so you know the types of testing that could be done! 

For example: my son had a very strong asthma that never seemed to desappear and he always had stomach pain, heart burn and diarrhea, fever, ecsema's all over his body and never seemed to be healthy, we tried almost everything! 

One day a doctor made those skin testing! Those where a needle with the probable allergy is pinned in to the skin! It tested positive for gluten allergy! But not for lactose! Lactose intolerance is very comun to see with gluten allergy together! 

We did cut all gluten out of our lives and he now is a 5 year old boy, that doesn't even questions about not eating gluten (he did it a few times knowing he should not and was very sick for a few days, so he learnd it the hard way)!

Today he knows that he has to eat different than most people, but doesn't complain or anything, and of course, it is harder to live without gluten then we first thoot! But it is worth it!

Hope I helped a little bit!

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#37 of 53 Old 04-11-2014, 09:28 AM
 
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Perhaps your first step should be finding out if the school requires a doctor's diagnosis of gluten sensitivity and why they need it.

Why would they need it? For admission? For free school lunches? For liability reasons perhaps? They are dealing with hundreds of children daily, so it's easiest for them if everyone is following the same protocol. If your child has an official diagnosis of celiac disease, or peanut allergy for that matter, they will have to go the extra mile and be super careful about making sure your child does not consume any gluten. That means extra work, planning and precautions. They do not want your child to have an allergic reaction and they want their bases covered legally if he or she does. If there is no positive test for celiac disease on record, there is less pressure on them. Perhaps the purpose for a diagnosis and testing is to distinguish between children who have celiac disease and those who may just have moms who read that gluten is a bad idea so they're following a gluten free diet. The precautions needed for a child with celiac disease would be more stringent, so this is understandable. (I personally am gluten free because I have gluten sensitivity but do not have celiac disease, so I'm not belittling a gluten free diet by any means. I know I don't have celiac disease because I had a scope put down my throat and a tissue sample taken for diagnosis.)

If confirmation is required for school admission then go to a naturopathic doctor and get a diagnosis based on observation. The naturopath might be a good starting point if you are concerned that full blown celiac disease is a posibility. 

If your children are sensitive to gluten and you know this through observation, what good will come of putting them back on it in order to test positive on a test?

The main point is, get a confirmation from the school about the need for gluten testing BEFORE worrying about it any more.

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#38 of 53 Old 04-11-2014, 09:37 AM
 
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wow- what a thread!

 

i am gluten-free and have been since 2001.  i had the bloodwork done b/c my family/in-laws didn't believe i was actually allergic (sometime in 2003 i think, when i was already gluten-free but not safe from cross-contamination) but it was negative (to be expected).  BUT IF YOU CAN GET TESTED- do so.  just don't make any long-lasting judgements on a negative test.

my grandmother is a diagnosed celiac, and i was SO SICK for years.  anemia, edema, no cycles, skin rashes, constipation alternating w/ diarrhea, mood swings, just to name the major issues.  nothing worked until i went gluten-free cold turkey and started this journey.  it was harder back in 2001 when nothing was labeled, so i stopped eating processed foods.  and learned to listen to my body.  even now, i can eat food and tell you if it's MILDLY cross-contaminated or extremely cross-contaminated.  not a fun skill to have, but useful in it's way!  i remember having a 50lb bag of brown rice for my husband and son and my husband noticed that i wouldn't eat it, and i would wash the pan after we cooked the rice in it and not mix my food with it and treat it like it was cross-contaminated. i called the farmer and it was grown/processed with the same equipment as his wheat.  but not labeled.  

 

so when i got my cycles back and started having kids, i was asking my Dr the SAME QUESTIONS.  should we look for genetic markers?  am i hurting them by not feeding them wheat (but i can't really do it myself b/c i get sick from kissing them or having them stick fingers in my mouth after trace amounts!) and will this be a problem later?  He informed me that a balanced healthy gluten-free diet wouldn't hurt them.  most tests are not accurate enough before a child is VERY sick (he's diagnosed a few young celiacs) and that it'd be a waste of time unless my kids were actually sick.

 

so we're taking the eat well now, and deal with sensitivities later IF they come up.  If when my kids go to college and live on beer and pizza and ramen and get sick or have gluten-sensitivity, it's not gonna be fun or easy.  BUT it's also not a childhood of illness or chronic pain.  as someone raised w/ chronic pain, i believe this gift is more important than 'a normal childhood experience' of junk food and sandwiches and pizza daily.

 

that was 6 years ago now that my pedi and i had this talk and went forward.  my kids don't eat gluten-free 100% of the time.  but at this point it is 98% of the time.  i focus on giving them balanced meals, quality grains and foods, and they've all been very healthy- no allergies, no sensitivities (not even dairy which my husband and i have both had from young ages), no skin issues (husband and i are both very prone to skin reactions from gluten), and great healthy growth.  i'm not saying it's for everyone,  but it is the decision that has worked beautifully for our family.  

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#39 of 53 Old 04-11-2014, 10:21 AM
 
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Thanks. You just answered a question I had about the big bag of rice from Costco...

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#40 of 53 Old 04-11-2014, 02:54 PM - Thread Starter
 
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Great info mamas, thank you! I guess I'm a little confused now about celiac blood testing for my 6 year old. He has a check up next week and I was going to ask our doctor to run the celiac panel. I would prefer to at least run this test on the small chance he would test positive. If he doesn't, then we'll continue to be gluten free as much as possible at home, based on my own opinion and how I feel.
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#41 of 53 Old 04-11-2014, 06:59 PM
 
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I do want to say this, there isn't any such things as a gluten allergy.  There are allergies to wheat, rye, barley or other gluten containing grains but NOT gluten itself. 

 

There is Celiac Disease which WILL NOT show up on an allergy test but needs to be dx with a Celiac Panel which is several blood tests run together when the person is EATING gluten for a prolonged time. Genetic markers are there BUT having them doesn't mean the person has Celiac disease, just the genetic predisposition to having it. 

 

There is non-celiac gluten sensitivity where the blood work isn't positive for Celiac but there are issues that resolve when going GF.

 

Schools need documentation IF your child will need accommodations for the diet they are on. If there isn't a dx many schools will say okay we hear ya but there isn't going to be anything like a 504 plan that legally makes them responsible for things.

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#42 of 53 Old 04-11-2014, 07:21 PM
 
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There is a lot of confusion out there on all things gluten, allergies, sensitivities, celiac, etc.  Many years ago when my oldest, then 18 months old, appeared to suffer from cow milk allergy, I found the yahoo group foodlab very helpful.  They're very pro breastfeeding & there are a fair number of posts from parents (mostly moms) who need info/help on dealing w/ life w/ a food sensitive child.  The topic of handling things w/ school comes up often enough.

 

Depending on what your son needs, your word may be fine or you may need further documentation.  The problem w/ tests is the false negatives, the rules that go w/ them (like you need to be eating gluten in order to be tested), etc.  It's hard though when you have people in your life who don't believe the mama test (BTDT).

 

My children's food allergies is one of the reasons we home educate.  Maybe consider that?

 

Foodlab is the main thing I wanted to mention.  I hope you figure out something that will be helpful for you & your son.

 

Best wishes,

Sus


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#43 of 53 Old 04-12-2014, 05:52 AM - Thread Starter
 
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It's funny, because we ended up homeschooling for kindergarten this year, just by chance. And while I think we're finally starting to enjoy it, we plan on doing public school for next year. I think my son really needs a lot of socialization to be happy. The food factor will definitely be a concern of mine. I'll obviously be packing his lunch, but things like birthday treats at school is just something I'm not comfortable with. It'd almost be easier to say he can't have wheat and dairy, just so he doesn't get the added sugar and junk. He was only off of gluten for one week before I added it back in to get tested next week. But, in that week his eye circles did lessen as well as his nervous tics. So I feel confident not having gluten in our home based on those observations and the fact that I'm miserable when I consume it regularly. I thank you all so much for your help and time!
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#44 of 53 Old 04-12-2014, 02:48 PM
 
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Originally Posted by Claudia Chapman View Post
 

Perhaps your first step should be finding out if the school requires a doctor's diagnosis of gluten sensitivity and why they need it.

Why would they need it? For admission? For free school lunches? For liability reasons perhaps? They are dealing with hundreds of children daily, so it's easiest for them if everyone is following the same protocol. If your child has an official diagnosis of celiac disease, or peanut allergy for that matter, they will have to go the extra mile and be super careful about making sure your child does not consume any gluten. That means extra work, planning and precautions. They do not want your child to have an allergic reaction and they want their bases covered legally if he or she does. If there is no positive test for celiac disease on record, there is less pressure on them.

 

Perhaps the purpose for a diagnosis and testing is to distinguish between children who have celiac disease and those who may just have moms who read that gluten is a bad idea so they're following a gluten free diet.  (bolded mine)

 

 You really reveal your ignorance when you say this.

 

For what its worth, you dont need a doctors slip. You just put it in the records, and let the teachers know. You provide a gluten free alternative if necessary. If a child is gluten free because those silly moms did a bit of worthless research on the internet, and are following a fad (because they cant think for themselves, and i one of those brainless moms), then gluten sensitivity/and/or celiac will not show up on one of those marvelous  tests.

 

 

The precautions needed for a child with celiac disease would be more stringent, so this is understandable. (I personally am gluten free because I have gluten sensitivity but do not have celiac disease, so I'm not belittling a gluten free diet by any means. I know I don't have celiac disease because I had a scope put down my throat and a tissue sample taken for diagnosis.)

If confirmation is required for school admission then go to a naturopathic doctor and get a diagnosis based on observation. The naturopath might be a good starting point if you are concerned that full blown celiac disease is a posibility. 

If your children are sensitive to gluten and you know this through observation, what good will come of putting them back on it in order to test positive on a test?

The main point is, get a confirmation from the school about the need for gluten testing BEFORE worrying about it any more.

 

I see you are not so ignorant. So why be so dismissive in your choice of words about moms who want their children gluten free? 

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#45 of 53 Old 04-12-2014, 02:57 PM
 
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It's funny, because we ended up homeschooling for kindergarten this year, just by chance. And while I think we're finally starting to enjoy it, we plan on doing public school for next year. I think my son really needs a lot of socialization to be happy. The food factor will definitely be a concern of mine. I'll obviously be packing his lunch, but things like birthday treats at school is just something I'm not comfortable with. It'd almost be easier to say he can't have wheat and dairy, just so he doesn't get the added sugar and junk. He was only off of gluten for one week before I added it back in to get tested next week. But, in that week his eye circles did lessen as well as his nervous tics. So I feel confident not having gluten in our home based on those observations and the fact that I'm miserable when I consume it regularly. I thank you all so much for your help and time!

I find people more and more accommodating  because there is more an more information. 3 children in my sons class of 12 are gluten sensitive, with two celiac moms.  If its a fad, then its a great fad. I attribute it more to increased information and awareness of the true damage gluten can wreak. s for birthday parties,  i just let the host know, and provide an alternative snack for my child. My son is very good at saying 'no thankyou'. More and more, the party is gluten free itself, or alternative treats, like ice blocks rather than cake, is provided. At my sons party, i  was going to bring ice cream, but one girl had  dairy intolerance, so i just brought iceblocks.

 

One mom brought dates....

.

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#46 of 53 Old 04-12-2014, 05:43 PM
 
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My intention was to help the mother who posted the original question. She raised a concern about the school her children will be attending and her understanding that the school may require a doctor's diagnosis for her children's gluten sensitivity. If you go back and read the original question, you will see that this was a concern of hers. At first, when I read her question, I wondered why a school might make such a request. Upon some reflection, I came up with a number of possibilities which I outlined. I suggested a naturopathic doctor as a way of by-passing a test which required the children to eat gluten. I believed when I wrote my response that I was choosing my words carefully and being respectful. I can understand how, taken out of context, a reference to a person following a gluten free diet for no other reason than she'd heard it was a good idea, and contrasting her with someone with life threatening Celiac disease, might be seen as dismissive, but that was not my intention. 

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If anything, I was making what I thought was an obvious reference to the fact that most of us who are gluten sensitive often have to justify our dietary practices to others. In fact I think that most of us fall somewhere in the middle of the spectrum between Celiac disease at one end and trend followers at the other. 

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#48 of 53 Old 04-12-2014, 06:49 PM
 
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You really reveal your ignorance when you say this.

 

For what its worth, you dont need a doctors slip. You just put it in the records, and let the teachers know. You provide a gluten free alternative if necessary. If a child is gluten free because those silly moms did a bit of worthless research on the internet, and are following a fad (because they cant think for themselves, and i one of those brainless moms), then gluten sensitivity/and/or celiac will not show up on one of those marvelous  tests.

 


 

 

IF you want/need accommodations for a child in a US public school, you NEED a Dr's "slip" to confirm a dx. You're getting defensive for some reason.  You can do whatever you would like but the OP was specifically asking about school and a dx. Sure, anyone can send anything they want to school for kiddo to eat BUT if you expect the school to be on board with your kids dietary issues, there will need to be a dx.

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#49 of 53 Old 04-13-2014, 07:02 AM
 
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IF you want/need accommodations for a child in a US public school, you NEED a Dr's "slip" to confirm a dx. You're getting defensive for some reason.  You can do whatever you would like but the OP was specifically asking about school and a dx. Sure, anyone can send anything they want to school for kiddo to eat BUT if you expect the school to be on board with your kids dietary issues, there will need to be a dx.

Gluten sensitivity cant be diagnosed by a doctor, it requires an elimination diet, which does not require a doctors prescription, and a doctor isnt trained in this area. I am only relating my experience, where a  doctors dx wasnt required. My own dx is enough. It is not a life and death situation, but as i said in my post, let the teachers suffer the consequences of feeding my child gluten.(read symptoms of gluten contamination in my above post) There is a reason he is gluten free, but a doctor isnt trained to figure that out.

 

I have not heard that public schools require a dx of gluten sensitivity. This is silly, because as i said, doctors cant dx such a thing. Some dont even believe it exists.

 

If public schools require a dx, then this should be changed.   A parent has the right to know their child is safe from harm. I doubt this is true however.

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#50 of 53 Old 04-13-2014, 07:06 AM
 
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If anything, I was making what I thought was an obvious reference to the fact that most of us who are gluten sensitive often have to justify our dietary practices to others. In fact I think that most of us fall somewhere in the middle of the spectrum between Celiac disease at one end and trend followers at the other. 

I agree there is a spectrum. But it is wrong for anyone to assume that a person is  has their child on a gluten free diet for trivial reasons.  Adults can experiment with diets, and some might choose to go gluten free for what may appear to be trivial reasons. The difference is, they dont require a doctors slip to eat what they choose.

 

I see that you did not intend to be dismissive.

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Gluten sensitivity cant be diagnosed by a doctor, it requires an elimination diet, which does not require a doctors prescription, and a doctor isnt trained in this area. I am only relating my experience, where a  doctors dx wasnt required. My own dx is enough. It is not a life and death situation, but as i said in my post, let the teachers suffer the consequences of feeding my child gluten.(read symptoms of gluten contamination in my above post) There is a reason he is gluten free, but a doctor isnt trained to figure that out.

 

I have not heard that public schools require a dx of gluten sensitivity. This is silly, because as i said, doctors cant dx such a thing. Some dont even believe it exists.

 

If public schools require a dx, then this should be changed.   A parent has the right to know their child is safe from harm. I doubt this is true however.

 If you want official accommodations in the form of 504 or other plan, there needs to be a dx.

 

I know there's no test for gluten sensitivity and the it isn't commonly believed in the medical community. I am fairly up to date on the research of all things gluten as my child has Celiac Disease.  I also know that for a 504 plan there must be a dx.  Some schools are willing to do more than others but you don't get a 504 without a dx.

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#52 of 53 Old 04-14-2014, 08:02 AM
 
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Yes, you need everything official for a 504 plan, but i didnt see anything in the original post to suggest that that is necessary at this point.

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#53 of 53 Old 04-14-2014, 08:23 AM
 
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It's funny, because we ended up homeschooling for kindergarten this year, just by chance. And while I think we're finally starting to enjoy it, we plan on doing public school for next year. I think my son really needs a lot of socialization to be happy. The food factor will definitely be a concern of mine. I'll obviously be packing his lunch, but things like birthday treats at school is just something I'm not comfortable with. It'd almost be easier to say he can't have wheat and dairy, just so he doesn't get the added sugar and junk. He was only off of gluten for one week before I added it back in to get tested next week. But, in that week his eye circles did lessen as well as his nervous tics. So I feel confident not having gluten in our home based on those observations and the fact that I'm miserable when I consume it regularly. I thank you all so much for your help and time!

yeah- i have a SUPER social son.  we have kept homeschooling so far (he's 8) b/c he became very advanced in math and not so much reading.... but we make social activities a top priority.  sometimes more than school work b/c he does that so well.  He is so socially motivated that he often does all his workbook work in less than 1 hour each morning.  and this is not simple work.  he's just more motivated to be out w/ the rest of us and active (outside, library trips, adventures in the woods, etc) than just try and work.  today he's working on composition for a while.  i have also kept him and his kindergarten sister (who's reading to me right now) at home so that they can sleep in some (they both like to sleep til 7:30/8am daily) and eat big breakfasts before facing school.  

 

each year we consider what steps we should take.  homeschooling solo is fun (:flipped), but i would LOVE to do it w/ more families and more of a support network especially w/ boys his age.  you might have that near you and that's another consideration!  

 

one friend has an extremely sensitive celiac daughter (mother, daughter both dx, other family members not but definitely reactive) and it's amazing how much school she misses from cross-contamination and getting sick.  she often can't finish the day b/c after lunchtime she is in so much pain, and they're careful.  it's challenging to face ongoing illness and if a school cannot help maintain a safe environment, that can actually factor in to how your child enjoys/learns in that environment.  also, some people have horrendous reactions that can take them out for a week!  

figuring out your kids sensitivity, and then finding a good balance is never easy, but so worth it in the long run!!!  having a medical professional who is supportive and alongside you can be such a great asset as well.  


joy.gifSAHM and Holistic Health Counselor with  angel.gif 1/05, DS1 blahblah.gif 3/06, angel1.gif 5/07, DD1 dust.gif 3/08, DD2 thumbsuck.gif 11/09, DD3 energy.gif 4/11, and DS2 babyf.gif 2/13.  expecting a surprise stork-suprise.gif 8/14!
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