Posted Pictures #54- if anyone has any advice LMK (formerly advice for children's hosptial thread) - Mothering Forums

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Old 07-20-2009, 02:44 AM - Thread Starter
 
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So my middle son has always been a bit off, weird symptoms never amounting to much. He has `eczema` but honestly not like anything you have ever seen. People have started asking me if it is really eczema its not the behind the knees, elbows type. It`s pus filled, oozing, open sores, watery, swollen mess. Last week he started complaining and had a few days where he wouldn`t walk. I have had enough of the allergist, (tested found he was allergic to nothing) this kid looks like a walking allergy - big red bags under his eyes, itchy, oozing mess, the dermatologist who perscribes steriods of every type, bleach baths. But even with the bleach, the steriods, antiboitics and antifungals he`s a mess.

He also was jaundiced until 6 months old a reaction to some hormone, protien in breastmilk. He used to poo a white green colour (no mucous) but if snowmen pooèd they would poo this colour. He did that for amost three years and now hasn`t done that in a while.

Got any advice for walking in off the street. I am scared I am going to get railroaded out with a course of oral antibiotics.
I am taking him to emergency as he`s been hobbling around, the pus situation is getting worse and honestly looks like its comming OUT of his body like draining not a local skin infection. He won`t straighten his legs this week.

I feel like we`ve been nice patients for too long. Even his allergist said hed only ever seen one case as bad as my sons...then was shocked when his full panel of skin test came back negative even for the run of the mill dust or mold. My heart breaks for the little man and he even hobbling around isnt complaining...

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Old 07-20-2009, 03:48 AM
 
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I would say the he needs to be seen by a GI doctor that would be my first stop. Have you tried elemination diet - what does he eat now, it could be a sensitivity to dairy, soy, corn, wheat, ect that cannot be picked up on an allergy test. My DD has a wheat sensitivity - but is negative for allergie and negative(by blood) for celiacs - but her poor tummy will certainly tell you different.
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Old 07-20-2009, 04:22 AM
 
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My advice would be to get a good general practitioner, someone recommended by someone you know WELL. Someone who has a bio on the net that speaks to you. Not the hospital. You need a proper practice. Which allergy tests did he have? What kind, and for what things? Did he have the blood tests?

I agree that an elimination diet might be in order but your son also needs nutrition and it could be an allergy to something in your home, kwim? So I wouldn't jump right on that.

A good doctor that is open to natural healing while at the same time being aware of the medical problems side of things is someone I'd seek out aggressively, and demand an answer within a set period of time, based on how long it takes to get the labs back. Make sure the doctor has access to an excellent allergist. There are a lot of things it could be besides allergies, though.

Beware of any doctor that uses the word "just" or "only", or who belittles your concerns.

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Old 07-20-2009, 11:30 AM
 
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What about hair, teeth, finger/toe nails are they 'different'? Does he have bald spots, thin hair, brittle hair? Is his teeth missing, old shaped, peg shaped, slow growing, many cavities? Nails, are they split cracked, thick, thin, non existant? Does he get overheated easily? Does he sweat?

I'm throwing out possible Ectodermal Dysplasia symptoms, here's a link that explains what ED is
http://nfed.org/about_ed_faq.asp

Look around there and if something pops out as possibility for your son give them or a call or email them, they are great at connecting families and as a resource of information.

Good luck, I hope you can find a doctor who can figure what is going on. Hugs to your son and family.
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Old 07-20-2009, 11:30 AM - Thread Starter
 
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I`ve done the elimination diet atleast three times.
Nothing. He has had this since before he started eating.
He`s only had skin allergy tests and a naturopathic doctor tested him once.
I know about sensitivities, but this is so severe it must be something a little more testable. He hasn`t had blood studies done, the children`s hospital will do that more easily. I`ve found that most doctors are reluctant to draw blood on a child. But it needs to be done.

He, of course, woke up today and the pus, infections, swelling was all gone. In 6 freakin hours...always the way. So I am not taking him in today. My GP has been good and given me all the referrals to specialists. Its just the specialists really look at him as a severe eczema case, not looking for anything else beyond that.

When I was surfing around celiac sprue does fit his symptoms. His rash does look much more like the dermatitis herpetiformus than eczema. I could take him off gluten today but might that not mess up any testing.
My friend is going to get me into see his friend a dermatologist who cannot brush me off. My friend has seen my child for four years struggle with this.

How do I ask for a GI doctor referral. (sorry my question mark is kaput on my keyboard dang kids)

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Old 07-20-2009, 11:45 AM
 
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How do I ask for a GI doctor referral. (sorry my question mark is kaput on my keyboard dang kids)
Contact our insurance company, find a list of GI's in your area, (If your insurance does not require a referal for specalists then you could contact the GI yourself and ask for an appointment- although I find it better to go through your primary for referals even if your ins. does not require it) call your primary doctor and tell them you want your son to see a GI, may need to give them "why" use whatever reasons you can think of and keep giving them reasons if they are not on board yet, when all else fails the statement of "There is something going on and we have already been to an allergist, a dermatologist and you and I'm hoping a GI might be able to figure things out for him"

If you take him in the hospital ask about the GI there and tell them your concearns on what is going on and go from there just like you would if you were at the primary.
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Old 07-20-2009, 12:27 PM - Thread Starter
 
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we usually have to have referrals up in the great white north.

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If you take him in the hospital ask about the GI there and tell them your concearns on what is going on and go from there just like you would if you were at the primary.
I guess I got to speak up more. I wish he was a little worse today so I could take him in and not get the you brought him in for this look...I shoulda gone yesterday!

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Old 07-20-2009, 12:30 PM
 
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yeah - a GI would be a good place to start. if your little one has GI issues it can cause hypersensitivities.

i am puzzled by the abrupt cessation of the symptoms, though. have you ever kept a journal charting all food and activities? i wonder if he is allergic or highly sensitive to something that is off your radar - maybe if you kept a really scrupulous journal you might be able to pinpoint the source.

also, i'm sure you done a gluten and casein free diet? gluten can take six months or longer to leave the system. my son's big sensitivity was casein - when we removed it from his diet, his eczema and ear infections went away. i am certain he was reacting to it in my breastmilk long before he ever started eating solids.

i hope you find an answer - your poor little one - sounds really miserable
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Old 07-20-2009, 01:10 PM - Thread Starter
 
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am puzzled by the abrupt cessation of the symptoms,
it wasn`t all the symptoms just the scary pus and inflamation. It`s still scabby and rashy.

I`ve kept records, journals and I think that is part of the problem I have to start fresh.

Yes he was off all dairy for a long time. I guess maybe my other problem is I am looking for a cure. The only major time he had no noticable rashes was the month we were in Egypt.

In Egypt it was very hot (over 100 degrees), very very dry. He drank a lot (fanta). Food wise I am not sure what was missing there that we eat here. We don`t do detergent, perfume, etc. I am open to all ideas.

If I take gluten and casein out of his diet..would that affect a blood test later on
keep the ideas coming. this is a mystery I must solve.

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Old 07-20-2009, 01:14 PM
 
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The only major time he had no noticable rashes was the month we were in Egypt.
that's an interesting piece of data - i think i would really start looking at environmental triggers.
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Old 07-20-2009, 01:24 PM - Thread Starter
 
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Environmental triggers -well if it were pollution Egypt has that hands down!

The biggest thing I can think of it was really really dry and hot.
But he is worse here in the summer - but its hot and sticky.
But our winters are hot and dry (inside) and he`s better in winter but most kids with eczema are worse in winter.

Water in egypt was heavily clorinated, but we do bathe him with bleach added to his water to keep down the infections.

He really only gets it on his hands, wrists then knees to toes.
He`s never had a rash from elbow to knees - no bum, no back, nothing.
Its all extremities.

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Old 07-20-2009, 02:01 PM
 
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Has he been tested for common pollen allergens in your area? Like, my ds was tested for juniper since it grows every where here, and yup, it's the cause of his eczema. I bet more of whatever he's allergic to grows in the summer when it's hot and sticky.

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Old 07-20-2009, 02:30 PM - Thread Starter
 
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He had the full skin panel last time at the allergist.
Should I ask him to repeat it (question mark)

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Old 07-20-2009, 02:49 PM
 
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No, you should get a new allergist if possible, do the proper blood tests (skin tests are notoriously inaccurate, and with this level of suffering, it's shocking that your allergist hasn't gone further) and repeat the skin panel, and also see a dermatologist, who will have more experience with skin problems and their varied causes.

Get a referral from a GP or a naturopath who is also a doctor. You need someone who has more than general knowledge.

Environmental triggers are not only pollution. They include dust, pollen, dander, etc.

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Old 07-20-2009, 02:52 PM
 
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I would definatly look into the celiac - call your GP have him arrange for a blood test to be done - this is not always a good test for kids (high false negative) but he may show positive. You could get the blood test done in a day or two. The definative test for ceilic is intestinal biopsy but with symptoms as severe as your sons I would do the blood test then remove all gluten. My DD had a negative blood test and we didn't want to put her under GA to do the biopsy so after talking to her pead we took her off wheat and it took about 2-3 weeks to notice much difference but since then it has been great - she is no longer FTT despite other issues that tax her system.
I would suspect that when you where in Egypt the food was different as well - less wheat products, less REFINED wheat products - this is big for my DD the more refined the wheat the greater and faster she reacts. She stole a cookie the other day that was made from sprouted whole grain organic wheat flour and had no reaction at all (not that I would willing give her that even if she didn't react).
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Old 07-20-2009, 03:25 PM - Thread Starter
 
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Oh I know environment is beyond pollution.
We have no animals, we live in the city (few trees, plants), we have no carpet, they have basic foam matresses, we have radiant heating no forced air, dust we keep pretty clean, his bedroom is very sparse.

I will have to ask my husband what they ate in Egypt that was different.
There was definetly less processed food. But there was a lot of bread.
And ice cream, cereal with milk... but maybe I am missing something.

Keep the ideas coming!

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Old 07-20-2009, 04:08 PM
 
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How horrible.

Don't remove gluten until you've done the skin test. Find someone who will do that along with blood allergy tests so he isn't poked more than once.

I would wait until I saw GI. We made the mistake of pulling gluten, dairy, eggs, etc. out before we saw GI. They ended up doing a biopsy but because I had removed everything we couldn't "count" on negative results if that makes sense.

What types of steroids did you try and did he respond at all?

Are his stools normal now? Did they ever culture the stool for blood? Any reflux? How is his growth?

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Old 07-20-2009, 04:21 PM
 
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Sounds to me like a contact allergy since the affected areas are the ones that would be exposed when wearing shorts and a t-shirt and you say he improves in the winter (when he would presumably be wearing long sleeves and long pants).

Martha

ETA: I forgot about the other problems you said he had. I would still investigate contact allergy but the other stuff really needs to be looked at. Am I correct in remembering that you are in a large city on a lake? If so, I would really push for a referral to SK. Don't let up on your HCP until you get it.
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Old 07-20-2009, 04:47 PM
 
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I hope you find some answers. Have you tried the Feingold program at all?
www.feingold.org (I seem to be recommending that a lot lately!) My dd's eczema was nothing near as severe, but she did get raw hands, and since eliminating apples from her diet and using more natural products, she has not had a flareup in more than a year.

We did MSA testing for her (Meridian Stress Test) with a homeopathic dr. It is a little probe they use on the thumb and then a computer generates a list of all the things you are the least bit sensitive to- food, environmental, etc.

I wonder how Egypt is with corn? Nearly everything in the US has corn. All the "natural flavorings" etc are all made with corn... Also something I am learning with sensitivities is that with things like corn and soy, sometimes you have a threshold where you can eat x amt and be okay, but anything over than amt and you get a reaction. Also some things take an incredible amt of time to be eliminated from our bodies (my dd is sensitive to food dyes- they cause aggression and it takes weeks sometimes to rid her of it.)

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Old 07-20-2009, 04:59 PM - Thread Starter
 
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contact allergy might make sense except he contacts nothing.
He wears gloves..and that has helped.
I have reactions to detergents so its pretty much bakingsoda and vinegar over here from before he was born. No fabric softener, I don`t wear perfume, no soaps (I react to those).
Quote:
Have you tried the Feingold program at all?
I can`t remember, but I will look into it tonight. Apples...interesting.
I realise I probably have to think outside of the wheat, milk, eggs box to eliminate.

Quote:
We did MSA testing for her (Meridian Stress Test) with a homeopathic dr. It is a little probe they use on the thumb and then a computer generates a list of all the things you are the least bit sensitive to- food, environmental, etc.
that is the one he did with my mom she said wheat, milk, eggs and tomatoes...I took them out for a long time (cant remember how long) didn`t do anything.

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I wonder how Egypt is with corn? Nearly everything in the US has corn.
I am in Canada we are not nearly as high fructose corn syrup happy as you are in the south.

Quote:
kittynurse Sounds to me like a contact allergy since the affected areas are the ones that would be exposed when wearing shorts and a t-shirt and you say he improves in the winter (when he would presumably be wearing long sleeves and long pants).
he be wearing long pants, long shirts and gloves...and a hat now and its about 90 degrees today.

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Am I correct in remembering that you are in a large city on a lake? If so, I would really push for a referral to SK. Don't let up on your HCP until you get it.
what is an SK...and yes I do live in a large city by a lake but I am a good 10 miles from the lake.

Quote:
What types of steroids did you try and did he respond at all?
steriods help to heal but they don`t do much to prevent. We just finished a week of fucidin hc. It works well. I know how to manage it once it comes its preventing it that I want to do.

Quote:
Are his stools normal now? Did they ever culture the stool for blood? Any reflux? How is his growth?
yes he had reflux as a baby. No culture ever. Growth is great, weight gain is good. But he also is depigmenting (lol its hard for him to get pigment being that covered up) but he is getting whiter patches on his blonde head. My husbands uncle has vitiligo, but my son is honestly so white it would be hard to notice

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Old 07-20-2009, 05:14 PM - Thread Starter
 
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Stools are lighter in colour usually like carrotish colour.
As a baby before solids they were often white and white-green (not mucous green more of an olive green) mostly this year being 4 they are light brown-orange-light beige

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Old 07-20-2009, 05:18 PM - Thread Starter
 
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I really appreciate all the advice!
Anything that comes to mind regardless how small please feel free to suggest. I really need to find a cure for him not just manage this with steriods and antibiotics.

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Old 07-20-2009, 05:28 PM
 
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what is an SK...and yes I do live in a large city by a lake but I am a good 10 miles from the lake.
The initials of the nickname for the children's hospital in the large city on the lake (is that confusing or what? I know not everyone likes to reveal their location online - just trying to be subtle - obviously too subtle lol)
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Old 07-20-2009, 05:49 PM
 
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Something I though of, do you have any pictures of your son when he is having a bad skin day? If not, start taking them - that way when you do go to the doctors and he is having a good skin day they can see what you are talking about when you say flare-up. get some close up ones and some from a distance.

Did the dermatologist you go to ever use a black light to look at your son? sometimes looking at the skin under totally different lighting really pops things out that you don't normally see in regular light.

What about a geneticist? many times they can look at a person's facial/body structure and be able to point you in the right direction. Also testing through bloodwork, but whether or not you want to go that route....
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Old 07-20-2009, 09:54 PM - Thread Starter
 
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lol I was thinking Saskachewan.

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Something I though of, do you have any pictures of your son when he is having a bad skin day? If not, start taking them - that way when you do go to the doctors and he is having a good skin day they can see what you are talking about when you say flare-up. get some close up ones and some from a distance.
Yes I`ve started taking more since he can get better real quick.

Quote:
Did the dermatologist you go to ever use a black light to look at your son? sometimes looking at the skin under totally different lighting really pops things out that you don't normally see in regular light.
Nope. I guess I got the basic treatment. I think because he came predx with eczema no one really questioned it.

Quote:
What about a geneticist? many times they can look at a person's facial/body structure and be able to point you in the right direction. Also testing through bloodwork, but whether or not you want to go that route....
I will go any route.

A geneticist might be a way to go. There isnt`anything on MY side of the family that I don`t know about (a second cousin gets a boil I hear about it) but dh`s side has never taken any of the kids ailments or hospitalisations seriously (like pnemonia, rsv, asthma...) I keep joking dh was adopted, it might not be a joke. The peds. said when ds was born the type of jaundice he had was genetic and asked `whose` side mine or his it was on. Well my mom could still sculpt me as an infant, tell you the shape of cranium I had, how many days I did this or that....and they are uber medical on my side....the kind of people that buy their own anatomy books and collect diseases like brownie badges My grandparents also came from large families - 5 siblings each and they all had kids...nothing like this skin issue or the jaudice or the white poo and believe me I know how most of my family poos.....

I should post some pictures up for us amateur dr houses...and maybe you will have some ideas.

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Old 07-20-2009, 10:35 PM
 
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Okay, I'm not as subtle as kittynurse. If you are within a few hours of Toronto, definitely push for a Sick Kids referral. We were at McMaster in Hamilton with dd1 and found them not as helpful as they could have been. Our family dr. agreed, sent us to Sick Kids last February, and they were awesome, really thorough for a first visit. We go back Thursday for our follow up, so this opinion could change

But beware, the doctor sent the referral in in September, we got a February appointment - but apparently the hospital sent the referral around a number of departments before deciding where to send us.
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Old 07-20-2009, 11:01 PM
 
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If you are on the other end of the province - Childrens in London is not to bad either, we deal with them and have be pleased for the most part. Push push push to see an actual Peadiatrician not just your GP, If you can ask for a referal to the head of peadiatrics - they are generally head because they know thier stuff and deal well with people. I met a few peads - some are good some suck. Given that you are from Canada if he has another bad flare before you get some answere take him to a Childrens Emerge and tell them that you want answeres and are staying till you get some.- that generally get's there attention.
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Old 07-20-2009, 11:04 PM - Thread Starter
 
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I am in the big smoke.
Or the big garbage pile these days
I was thinking of just walking in...I have the referral papers for my doctor to fill out but I am not sure she`s taking this seriously and am not sure if I want to waste time waiting to see her...then waiting for a specialist...I think I will roll the dice at sk emerg one daytime when he`s jacked up

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Old 07-20-2009, 11:18 PM
 
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You sound like you have been doing everything you can for your son! Something that stood out for me while I was reading your posts was the fact that he is prone to infections. I'm sure this isn't a cure, but giving him a good-quality pro-biotic can only help his immune system get stronger. also, colloidal silver applied topically might be helpful to heal his open leasions, as it is an anti-bacterial. These are just band-aids, but I hope they help, at least with some of the symptoms. Good luck finding a diagnosis!

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Old 07-20-2009, 11:34 PM
 
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Quote:
Originally Posted by Shiloh View Post
I am in the big smoke.
Or the big garbage pile these days
I was thinking of just walking in...I have the referral papers for my doctor to fill out but I am not sure she`s taking this seriously and am not sure if I want to waste time waiting to see her...then waiting for a specialist...I think I will roll the dice at sk emerg one daytime when he`s jacked up
I might see you there on Thursday! Of course, neither of us will know it.
Irishmommy is offline  
 
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