Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 Rhonda my first thing I to learned from he mercury list was to get rid of the fillings in my mouth first and then to work on the gut yeast before I can be to get any chelation to begin for me. I to be just learning this though in the last few months. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 Be careful if you go ahead to get all your fillings out, take it from me a dental nurse, more mercury can go into your system with removal more than any other time........and don;t forget your teeth too, it can cause more probs with them as well. All i am saying is to be very certain, before you go down this very long and expensive time.........as new fillings will only last a short while, before you are back again for another one. I am just saying it how it is. Cheryl S [australia] -- Re: question Rhonda my first thing I to learned from he mercury list was to get rid of the fillings in my mouth first and then to work on the gut yeast before I can be to get any chelation to begin for me. I to be just learning this though in the last few months. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 > I've been meaning to write to you since I saw your post. You sound like a > younger version of me (though I don't have the nonverbal learning > disability). *grins* you can have mine. > I'm the mother of two girls on the spectrum - (6) is severely > autistic, nonverbal, but can type and read... and (8)who is HFA and > who also had hyperlexia. After finding out about the children it became more > and more apparent that I was AS so you have (38), AS,don't know about > my IQ (but its on the good side of reasonable). I could read before I went > to school (Shetland, Scotland, UK). I'm also very keen on Harry Potter, was > totally taken by Lord of the Rings when I first read it (though that is a > few years ago - it was the bit where the Ents joined in, I was totally > overwhelmed) and I am so taken with learning about autism I am doing a > postgraduate diploma in Autism - I'm nearly finished that and am intending > to go on to do a Masters (followed by a PhD if I can). But the bit that > struck me most was I'm a trampolinist too. I haven't done much trampolining > since i had because I just don't have the time but I used to coach > other people for 4-6hours/week. I am qualified to coach up to twisting > doubles and am now more interested in coaching special needs children. WOW! You can spot a twist?????? Right now I am so hung up on twisting because I need to feel the skill, and I cant be spotted at my gym because my coaches are DINKY. If you want to talk about any and all of the shared interests (4-now that is WAY COOL!!!!) email me off list, and we can stim on all that lovely harry potter and LOTR and trampoline and autism! Kassiane *missasparagus@...* _______________________________________________________________ Get the FREE email that has everyone talking at http://www.mail2world.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 Rhonda, I could not agree with you more. I have viewed Allie's therapists to focus on " catching up " Allie while I have focused on her biological isues. We have done gfcf for 1 yr 1mo, Allie spoke 5 days after removing dairy from her diet. Within 2 months she had a 100+ vocab. We do Super Nu-Thera, enzymes, and Paxil. I am taking Allie for blood work tomorrow and Friday we're planning on starting our first round of chelation. I'm doing the 4 hr ALA only Andy protocol from the autism treatment board, but I have some DMSA on the way. If anyone wants, I'll update from time to time on her progress. I'm looking forward to the possibilities of chelation, but nervous about the yeast issues that chelation can create! Debi > I'm Rhonda, mom to 26 month Olivia (PDD) and 7 yr old Madison (NT). > We've begun probiotics to heal Livia's leaky gut and next we're on to > enzymes. I believe some cases of autism are more biological than > neurological so that's the route we're pursuing right now. There's so > much info out there, it's hard to know where to start. Besides the > probiotics we also are in an EIP 2 hours a week and will hopefully be > starting Jumpstart in February. Wondering if you've ever tried DMSA or > ALA or such to remove the mercury from your system? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 , I will be to go to Pittsburgh ( wexford)? for a conference in a few weeks. I to be to go through Pennsylvania once and the hills, valleys and mountain areas are much beautiful there. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 Michele, thanks to say my posting to be of help to you, I to be hoping I to not be to overwhelm you in wrong ways, I can be to do this when trying to connect, not with intent, but via computer will say much. I tend to be lengthy in postings so will be to try hard to not be to wordy. Just get much happy when my words connect to others. I to be to feel like others when this happens in life. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 Much to tell me this to be the source of my mercury issues and such and for me to get high levels of mercury out of me I to need to get the mercury fillings out? I to be not sure of the choices I to need to make for to be to get better health. I to know one such dentist referred tome in our areas who to specialize in removing fillings and is cautious of the mercury. Yet at same time am feared. I to be much feared of the dentists. I to not like the pokes of the needles and the grinding of the tools they to use on my teeth and such and the drill is so much painful to me to hear. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 Ket you to be a much special person in her life to be to care so much about her and to bring a safe to her for her words to be to have comed while to live with you. I to wished in life I to be to have had a foster mom to have done this to me , but none to be like this for me as a child. It to cause a sadness in me but at same gives me the energy to fight harder for the children of autism of today. A funny thing my daughter to say to her dad tonight. Missy to be our picky eater who to be to wants to eat little and then to come back later wanting junk like foods LOL well her daddy to tell her to try to eat a few more bites of her meal. She to say. " I to be so much full now it to feel like my belly has stitches in it " . LOL I to not know where this to comed from as she to be so serious her father to rolled off hims chair in laughter and said well if you to be that full I to guess you better not eat another bite so to not bust those stitches open. She to looked puzzled and then tried to look to see if maybe she to for real have stitches.LOL she to be so much a fun kid. She to always be like this and her father to say she to be much like me. I to guess maybe this to be why she to be to look like me too. Sondra Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 Hi Sondra, I live on the other side of Pennsylvania, closer to Philadelphia. I do agree with you that we have some beautiful scenery in this state. Hope you enjoy the conference while here. Where did you say you were from? Re: question > , > I will be to go to Pittsburgh ( wexford)? for a conference in a few weeks. I > to be to go through Pennsylvania once and the hills, valleys and mountain > areas are much beautiful there. > Sondra > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 I to be from Ohio, the Columbus areas. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Hey the IVIg may help with the joint pain. It seems to have made a big difference for Lucas. He use to complain all the time that his legs hurt. I have not heard it for a very long time. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Actually one of our indicators that his dose needed to go up was that his joints began hurting again. So.... hopefully it will make it better. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 and ph both did this. ph had hip pain and had x-rays.. b/c they thought it was related to the SDS..but it was normal. Both of my boyshave leg pain and knee pain to this day....... Pattie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Barbie, that would be wonderful. Gosh-- I can;t imagine them not complaining that their legs hurt. WOW...... I have to carry up the stairs sometimes b/c his knees hurt so much and he says he can;t walk up the stairs. Pattie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 > Does anyone have there soaps/toiletries in stores, giftshops, etc? > I am getting ready to try it. Do you put your products in stores on > consignment, and if so, how much of a percentage do I give the > retailer? Or does the retailer buy the products from you at a lower > price to resell in his shop. Any info appreciated. > > Thanks, Betty Hi Betty, Generally it's either consignment, mall or boutique, OR wholesale. CONSIGNMENT: You give them the product, they sell it and give you the money (a percentage of the sale) after the fact. The benefit is that you can get exposure; the downside is that the shop owner doesn't have any real vested interest in the product - they're not out anything except some time and shelf space if it doesn't sell. Things to watch out for: check how the shop LOOKS before you put anything in there (dusty? clean? informed salespeople?); make sure you get a really good contract that covers inventory handling, payment schedules, how to handle theft and damage to product, cancellation, etc.; occasionally check to make sure that you've been paid for what's not on the shelves. MALL or BOUTIQUE (what it's called depends on the area you live in). You rent a space/stall for a fixed amount per month. Usually you are responsible for putting the product in, keeping it stocked and looking nice. There is a central check-out for all spaces/stalls in the mall. You get a percentage of the sales (usually a higher percentage than straight consignment). The percentage pays for your space fee first and you get anything over that. Sometimes that arrangement can be made long distance where someone in the shop sets up your space for you and keeps it stocked. WHOLESALE You sell your product outright to a store or shop, usually for 40% - 60% of the retail price. You can set a minimum amount of the sale (ie minimum order of $100 or $50 or whatever you feel comfortable with). The advantage is that it's a straightforward deal - you have no lingering responsibilities and are paid up front; the downside is that your revenue is generally lower. The biggest factor to consider, in the long run, is which retail presence will actually MOVE the product. It's where product moves that you will get your reliable and continued income, regardless of which way you go. Personally, I've been through all three. So far the most successful for me has been straight wholesale sales. HTH, Marie Gale Chandler's Soaps www.chandlerssoaps.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 From my experience STAY AWAY FROM CONSIGNMENT, I've lost A LOT of money trying that route. I sell mine wholesale or not at all now. If a store/shop owner buys your products wholesale they are more inclined to move the product because they have invested money and a vested interest in seeing the product move.if it's there on consignment they are not as motivated to promote your products. Just my 2¢ I'm just coming out a 6 month contract with a Crafter chain and have had a very bad experience.my products just sat.the store never cleaned my displays - even though it was in the contract.just always tell yourself.never do consignment, never do consignment, never do consignment. I've read from others on this chat and other not to do it but thought I could prevail.I bombed with consignment.definitely listen to the advice you see on these chats.the veteran soaps were right. Kim Lutz Isenhour Lutzy's Lather Re: question > > Does anyone have there soaps/toiletries in stores, giftshops, etc? > > I am getting ready to try it. Do you put your products in stores on > > consignment, and if so, how much of a percentage do I give the > > retailer? Or does the retailer buy the products from you at a lower > > price to resell in his shop. Any info appreciated. > > > > Thanks, Betty > > > Hi Betty, > > Generally it's either consignment, mall or boutique, OR wholesale. > > CONSIGNMENT: > You give them the product, they sell it and give you the money (a percentage > of the sale) after the fact. The benefit is that you can get exposure; the > downside is that the shop owner doesn't have any real vested interest in the > product - they're not out anything except some time and shelf space if it > doesn't sell. Things to watch out for: check how the shop LOOKS before you > put anything in there (dusty? clean? informed salespeople?); make sure you > get a really good contract that covers inventory handling, payment > schedules, how to handle theft and damage to product, cancellation, etc.; > occasionally check to make sure that you've been paid for what's not on the > shelves. > > MALL or BOUTIQUE (what it's called depends on the area you live in). > You rent a space/stall for a fixed amount per month. Usually you are > responsible for putting the product in, keeping it stocked and looking nice. > There is a central check-out for all spaces/stalls in the mall. You get a > percentage of the sales (usually a higher percentage than straight > consignment). The percentage pays for your space fee first and you get > anything over that. Sometimes that arrangement can be made long distance > where someone in the shop sets up your space for you and keeps it stocked. > > WHOLESALE > You sell your product outright to a store or shop, usually for 40% - 60% of > the retail price. You can set a minimum amount of the sale (ie minimum > order of $100 or $50 or whatever you feel comfortable with). The advantage > is that it's a straightforward deal - you have no lingering responsibilities > and are paid up front; the downside is that your revenue is generally lower. > > The biggest factor to consider, in the long run, is which retail presence > will actually MOVE the product. It's where product moves that you will get > your reliable and continued income, regardless of which way you go. > > Personally, I've been through all three. So far the most successful for me > has been straight wholesale sales. > > HTH, > > Marie Gale > Chandler's Soaps > www.chandlerssoaps.com > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 does anyone know if someone makes a Tommy Hillfigure(sp) fo or eo for MEN????? TIA~Misty http://community.webtv.net/mpw98/ForeverYoursATouch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 Sharon, What did they give Laruen? Only IV fluid-or other meds as well?? Sometimes they insist on things like Compazine, etc. Could she have been having a reaction to anything? There is also latex allergy to consider in a hospital environment, or the chemicals they use. My eyes react each and every time I am in a hospital or Doctor's office--because of the state of my immune system and the harsh chemicals they must use. Those are just a few possibilities. She could also have a bad association with IV as you mentioned. But I wouldn't automatically assume that--our kids can be so sensitive to so many things. Did they do a peak flow when she was having trouble with breathing? What were her O2 sats? Sandi--Mom to , age 10. Suspected IgA def., Tetrology of Fallot, chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD. Ten surgeries, heart surgery pending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 Sharon, That's what we're here for!! The reason I asked is because I react so badly to Compazine, including a raging headache. They have included it before with Demerol for migraine, but it makes my migraine worse!! So, I guess in my opinion, there are no " innocent " meds. Even the ones just for nausea can be a problem. Don't kick yourself--just ask, ask ask lot of questions when you're there. Also, you can consider calling the ER to find out what it was they gave . That way, you could avoid it in the future. Sandi--Mom to , age 10. Suspected IgA def., Tetrology of Fallot, chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD. Ten surgeries, heart surgery pending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 To all, I have a question. Last night when we were in ER and was receiving her IV fluids, she complained that she was getting that " weird feeling when I take a breath, and a headache " .. I was baffled because I didn't think straight fluids could make you feel this way. Has anyone ever had reactions like this to straight IV fluids. I didn't say this to , because I did not want to diminish what she was feeling, however I thought it may be an emotional reaction to remembering how the IVIG felt. I asked the nurse and she said it wouldn't hurt to slow it down, but didn't know if the IV could cause that or not. 2nd question, Do most of your children get treated with antibiotic even if they confirm the infection is not bacterial? s white blood cell count was 6000, which they told me was very good , even for a healthy adult. Are PID kids White blood Cell counts usually not within normal range? I asked the doctor the significance of the White Blood Cell level, and he explained that if it is viral , you will not see an elevated WBC. They did not treat her with antibiotics as a follow up measure. I was a bit surprised. Just trying to digest this as I learn and sort it all out. Any help would be appreciated. Thanks again Sharon s 11 igg def Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 : Re: question Sharon, What did they give Laruen? Only IV fluid-or other meds as well?? Sometimes they insist on things like Compazine, Sandi, This forum is so helpful, because based on your questions back to me, I am realizing that I did not document what meds were given to her other than a shot for nausea. The IV was just glucose (does that sound correct,) .They added a medication for nausea. I am familiar with compazine and it was not compazine. I had never heard of this drug before. They said it would NOT make her drowsy. Shame on me for not writing it down. I think what I need to begin doing is taking in my medical journal that the IDF foundation gave me and document everything on these types of visits. The ER did not do any kind of peak flow testing , even though I gave them her history of asthma, and told them when she said " it felt funny when she took a breath " She wasn't in true distress, maybe that is why, she just said if felt funny when she took a breath, and she was getting a bad headache. I never thought of other types of allergies, that makes total sense though. Thank you, for your feedback, it so very helpful. I am learning so much, and can take this information and apply it to my next visit. The experience on this board is so helpful, and I truly appreciate the sharing of ideas and information. Sharon s mom 11 igg def ] This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 Sharon: Boy did they give you the short answer! First of all, there are no absolutes with all this stuff, it's not always black and white. That used to really frustrate me, I wanted firm answers with no doubt. But the body has a mind of it's own and anyway, PID pumpkins don't necessarily respond the same way other people do. It seems to me that like many aspects of illness, everybody is a little different. So some kids may not mount a white cell response or some child might not make a fever, etc.etc. Some viruses can start off looking bacterial, it's all a little confusing. But the general overall rules of thumb are a very good place to start (viruses having low white count, bacteria having high), they're just not perfect. Our immuno had us panic every time had a high fever. Which is a good loose rule, however, the highest fever she's ever had was from a virus! So again, nothing is set in stone. In our case, we had so many CBCs with every fever that we discovered was textbook in her responses to infections. So much so that I usually feel very confident in whatever we discover with a CBC. In her case, if she's well or not very sick, her white counts are between 7,000 and 9,000. (this is just !!! Not everybody!!) If she's fighting a nasty virus, her white count is usually 5,500 or below. She actually goes below the normal white count sometimes. When she's fighting bacteria, her count always goes higher, between 14,000 & 26,000. In her case, if she's 18,000 or above, she's got something big. NOW. Not everybody responds that nicely!!! So don't go by us necessarily! And sometimes in the first day or early stages of a virus, sometimes your blood count can look sort of bacterial... the troops being dumped into the bloodstream or something. So with , they do the CBC and give the Rocephin or IV Ceftriaxone if it looks bacterial (high white count and low lymphocytes). Back when her PID was worse, they would give the Rocephin regardless of what the counts looked like, if she had a fever of 102 rectal or greater (this was because of her history of having had meningitis). Any time they gave Rocephin, we went back for three days, taking new CBCs and giving more Rocephin. Again, when her PID was worse, they took blood cultures with every CBC. Now they only do that if the CBC looks bacterial. So it depends. We have always had a firm, set protocol. I really appreciated that because we knew exactly what to do in any case and we could spout those instructions to ER staff and it would be just us following the immuno's instructions, not just being bossy parents. I'm not surprised they didn't give antibiotics. If she has a gastro bug, it is most likely viral. Bacterial gastro infections usually come with blood in the stool according to our ped. I made them do stool cultures with the first two gastro infections had, fearing bacteria. But after that I started to recognize the signs and believe them that they were pretty sure it was viral. I think it's one of those things that's a learning process -- learning how your own child's body responds to illness. I feel fortunate 's so predictable. (mom to Kate, born 9/19/02; and , age 4 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 In the beginning, right after diagnosis Macey was usually covered with antibiotics for most everything. If something viral showed up then it was bound to turn into a secondary bacterial infection. Now as the IVIG has regulated her system to a degree we're alot more stingy with the antibiotics. We do blood work and base decisions on values that are her norms instead of lab norms. We know her baseline WBC and differential. We know her symptoms for infection and they're usually backed up by a history of chest xrays or cultures that proved bacterial. She's also on a daily dose of Bactrim to cover pneumococcal bacteria. I would start to trend 's WBC's (both while well and while sick). With the sick WBC counts being done with something else proving it was bacterial. At first they said that she just wasn't ever bacterial, then when we had a culture or something else to show bacterial they started realizing that she had her own lab values to base things on. I'm wondering if the nausea med was Phenergan (Promethazine). It could cause the symptoms you describe. Ursula Holleman mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation's 2003 National Conference http://www.execinc.com/idf/ Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 In the beginning, right after diagnosis Macey was usually covered with antibiotics for most everything. If something viral showed up then it was bound to turn into a secondary bacterial infection. Now as the IVIG has regulated her system to a degree we're alot more stingy with the antibiotics. We do blood work and base decisions on values that are her norms instead of lab norms. We know her baseline WBC and differential. We know her symptoms for infection and they're usually backed up by a history of chest xrays or cultures that proved bacterial. She's also on a daily dose of Bactrim to cover pneumococcal bacteria. I would start to trend 's WBC's (both while well and while sick). With the sick WBC counts being done with something else proving it was bacterial. At first they said that she just wasn't ever bacterial, then when we had a culture or something else to show bacterial they started realizing that she had her own lab values to base things on. I'm wondering if the nausea med was Phenergan (Promethazine). It could cause the symptoms you describe. Ursula Holleman mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation's 2003 National Conference http://www.execinc.com/idf/ Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 Macey receives her 15 gms in 150 cc's. I'd call the pharmacy that reconstitutes the IgG and ask them what's the least amount of fluid they have to use to make the IVIG. Ursula Holleman and Macey's mom (7 yr. old with CVID, Diabetes Insipidus) http://www..com Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.