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boyohboyohboy |
Posted: Jan 13 2009, 10:39 AM
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Platinum Member Group: Members Posts: 5,352 Member No.: 3,466 Joined: 22-March 06 |
Karen, you are describing Jakob to a tee!
we need to connect soon, but just let me say, i havent read all that was written..but just from what we have done let me tell you this.. there is a pediatric drink, called bright beginnings soy drink..sold at the grocery store or on line..its the same as pediasure but it doesnt contain any milk..or milk products. this is the only thing jake can take. it has packed some major pounds on him..and I want to send you a recent pic of him. most of the "older" people on here know that this is what Jakob went thru when he almost died from the food allergies and also he has the SID. the allergiest will want to do a RAST and also skin prick testing..both are a better diagnosis then one alone..also there is a further more detailed test that puts a small container of super concentrated foods in a tiny metal bowl that is taped to their back for 48 hours and then read..that gives a really idea of what they are allergic to..her symptoms sure sound just like jake.. and honestly it might not be a food as a seasoning or a dye or anything like that.. we found out more foods he was allergic to this way..and we also have seen three allergist and only the PEDIATRIC allergist knew what to do and what tests to run..the others were not as good. and just delayed getting us to where we are now.. once we got the offensive foods out of his system for one yr to 18 mnths he outgrew a lot of them. he has the same vomitting, the same weight gain issues, the same reflux, just whiney and behavior problems..stomach ache, muscle ache.. i can go on and on.. the skin testing is so worth it, but only to the extend of an idea of what to avoid..like for instance jake is allergic to corn but can eat corn chips but not concentrated corn syrups. the pediatric drink contains corn syrup.. he also takes attarax which coats his mast cells to trick his body into thinking he can drink it..hides the allergies. i highly recommend this drink for her.. and you can order it right on line to be delivered for free to your home at a less charge then the stores do.. if you are interested let me know. with the help of the GI dr and the allergist Jake is almost completely normal and also the SID is almost unnoticable once the allergies were dealt with.. I also needed to say that jake doesnt eat like a normal person. he mainly still lives on the pediatric drink and also that the foods he does eat are not what i would consider healthy. i dont know that he ever will. but he is happy and doesnt cry in pain from the foods anymore.. please contact me and let me see if we can connect. stacy -------------------- Stacy, wife to Peter, mom to Caleb, Jakob, and Andrew
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coasterqueen |
Posted: Jan 13 2009, 11:08 AM
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Diamond Member Group: Members Posts: 27,917 Member No.: 236 Joined: 4-August 03 |
Stacey, hi!
I knew Jake had problems, but I had always gathered that you saw literally a food causing the problem. Was that the case? I know we've talked numerous times about these things, but I always thought his case was a bit different than Megan's because I thought you *SAW* what food was making him sick. We can't seem to tell with Megan, unless it's everything she eats. We did have a scary instance over the Thanksgiving holiday. Megan has always eaten chocolate in small quantities in the past, but over the holiday we were candy making with family and she did happen to eat a lot more chocolate than normal. She developed a major facial/torso rash from that. Well, maybe major is too strong of a word, but it was a very noticeable rash. So we kept her away from chocolate for about a week and then when she had just one bite of chocolate a week later she broke out in the rash. Very weird! Now she's had tiny bits of chocolate since, like at Christmas, but we haven't seen the rash. She also at that time had unexplained vomiting that lasted for one day and then was gone, like I mentioned before. I just made another appointment with her regular doc, and we'll go do that on Monday. At that time he'll hopefully give us the referral for the pediatric gastro doc again. Since it's been over a year since we seen him before (for reflux) we have to have a doc make the appointment. Now did you see the pedi gastro doc first or the allergist? I know of NO trustworthy, reputable pedi allergists around here MY allergist deals with pedi cases all the time, but he concerns me. He's a pill pusher for everything and anything. He's great when it comes to my allergies, but anything else I wonder about him. Can't the pedi gastro doc do a lot of testing to see what's going on? She had the RAST test done, but it was negative. She has not had the skin test. I think that other special test you may be referring to is testing the IgG antibodies. It's tested against a ton of foods to see what reactions occur, I know that. I know a lot of her SPD issues have gotten worse since she's gotten sicker. She was doing so well. A couple of months ago we saw the OT (we see her every two weeks) and she looked at me and said "what happened to her". She said it was if she had just saw Megan for the first time ever, like all the work we've done with her disappeared. I will look for that drink for sure. You know I'm not so much as worried about the weight IF she was just supposed to be a small person anyways, kwim? But because of the diarrhea, gas, and stomach pains, I know in my heart that HAS to be why she's not gaining and to me that is NOT normal. I've heard so many times she's just going to be petite, but I can't accept that with all the other issues she's had/having. I know you understand that feeling as well. Ok, I need to get back to work, but will pm you as soon as I can. BTW, this "laboratory" that I found all the IgG info on that will do the testing also supposedly provides EXTENSIVE information on what foods they can and cannot eat down to providing you complete meal recipes, etc. Much different than what the nutritionist gave me when they thought the girls were allergic as babies. They were no help. I'll also see about the pedi allergist because unfortunately Kylie is being treated for allergies OTC because of a consistent cough, runny nose she still has from August. She has also broken out in bad hives twice. So I need to get them both in. -------------------- ~*Karen*~
wife to hubby, Ryan Douglas mommy to Kylie (9) and Megan (6.5) and furbabies Gavin, Buster, Sox, and Hailey |
DVFlyer |
Posted: Jan 13 2009, 01:04 PM
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Just a man Group: Members Posts: 2,733 Member No.: 1,368 Joined: 10-February 05 |
I would be interested in knowing what lab this is. Great Plains Laboratory is where we got our tests done. The results were very thorough (controlling my skeptical side...) but they did not provide meals or recipes. That would be very helpful. -------------------- Convincing the world that the only way to solve the ongoing issues while raising children is PERSISTENCE. You have to keep trying things and not give up........ they eventually go away on their own. ;-)
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amymom |
Posted: Jan 13 2009, 02:27 PM
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The kids!! Group: Members Posts: 5,710 Member No.: 1,308 Joined: 30-January 05 |
Karen, Good to see you. AS you may remember Mary Beth's problems were never as bad as Megan's or Jake's, but I always feel I could identify with both of you. We were very fortunate with our Pediatric GI and were very lucky to get such good results. Our Mary Beth will always be small but at least she isn't in pain any longer. Good Luck with everything, I hope the GI gets you in ASAP.
-------------------- Anne Marie Mom to Billy & Mary Beth Wife to Lee |
msoulz |
Posted: Jan 13 2009, 02:41 PM
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Gold Member Group: Members Posts: 3,102 Member No.: 2,158 Joined: 7-July 05 |
Hi Karen! I am completely useless for advice but it was nice to see you post again. I know you and Stacy will have lots to talk about. I hope to "see" you around here again!!!
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~Roo'sMama~ |
Posted: Jan 13 2009, 05:36 PM
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My two cuties :) Group: Members Posts: 7,394 Member No.: 788 Joined: 29-September 04 |
Hi Karen! It's good to see you on here again. I don't have any experience with this stuff either ~ I'm sorry you're going through it, and I hope you can get some answers soon!!
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MommyToAshley |
Posted: Jan 13 2009, 09:07 PM
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Happy Spring! Group: Administrators Posts: 27,473 Member No.: 2 Joined: 8-February 03 |
Karen, I am sorry you and Meagan are going through all this. I can imagine how worried and frustrated you must be to still not know what is going on. I think you are smart to keep pushing for answers. I don't have any suggestions or experience, but I will continue to keep you all in our prayers. Please do keep us updated, we think of you all often.
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coasterqueen |
Posted: Jan 14 2009, 08:46 AM
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Diamond Member Group: Members Posts: 27,917 Member No.: 236 Joined: 4-August 03 |
Thanks again everyone for your support and prayers.
Megan saw the regular doc this morning. He classified her as "potential failure to thrive" so at least we have that "potential" in front of that phrase. She had to have blood drawn to check her thyroid, a urine test, and an x-ray of her bowels. He then set us up with who I hope is a very good pedi allergist. We go see her Monday afternoon. Then if nothing happens with the pedi allergist we'll see the pedi GI. SO I hope we get some answers soon. She's getting taller so at least she's growing up. I will keep you all posted and I dearly appreciate your support, especially since I haven't been here in a long time. -------------------- ~*Karen*~
wife to hubby, Ryan Douglas mommy to Kylie (9) and Megan (6.5) and furbabies Gavin, Buster, Sox, and Hailey |
moped |
Posted: Jan 14 2009, 11:41 AM
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Ruby Member Group: Members Posts: 13,078 Member No.: 1,035 Joined: 5-December 04 |
Ya know, I thought about this last night and wondered about thyroid, only because I have a hyperthyroid and when it was in "storm" I had loose stools, very thin, etc etc........ Does she have any of these symptoms for children? Symptoms of Hyperthyroidism emotional lability, with your child being more likely to cry easily, be irritable and excitable, etc. short attention span finger tremor increased appetite weight loss, failure to thrive enlarged thyroid gland (goiter) exophthalmos (protruding eyes) upper eyelid lag infrequent blinking flushed skin excessive sweating muscle weakness tachycardia and palpitation high blood pressure thyroid storm Please keep us posed Karen, and don't be a stranger This post has been edited by moped on Jan 14 2009, 11:57 AM -------------------- |
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CantWait |
Posted: Jan 14 2009, 01:41 PM
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Diamond Member Group: Members Posts: 20,387 Member No.: 28 Joined: 1-March 03 |
It's so nice to see you again Karen. I'm sorry you're having problems with Meagan, and hope the new doctors will be able to find some answers for you soon.
Just wanted to let you know, if you go for regular Pediasure, this can also cause diahrrea as it did this for Anthony when he was younger. Don't be a stranger. -------------------- |
DVFlyer |
Posted: Jan 20 2009, 02:26 PM
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Just a man Group: Members Posts: 2,733 Member No.: 1,368 Joined: 10-February 05 |
Wanted to bump this back up because I checked the tests we got for Keian.
He had an IgG test and and OAT (Organic Acid Test). -------------------- Convincing the world that the only way to solve the ongoing issues while raising children is PERSISTENCE. You have to keep trying things and not give up........ they eventually go away on their own. ;-)
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coasterqueen |
Posted: Jan 21 2009, 06:42 AM
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Diamond Member Group: Members Posts: 27,917 Member No.: 236 Joined: 4-August 03 |
Well my allergist thinks the IgG testing is hocus pocus, as she called it. The more I found last night on yellow dye allergies (which isn't a lot ) parents suggested the IgG testing to dig further into the allergy. The problem is our insurance won't cover it because our allergist won't approve it. We can do it on our own but the cheapest test is $910.00. This is through Immuno Laboratories. We may decide to do it after the 4 week elimination depending on the results we see or not. -------------------- ~*Karen*~
wife to hubby, Ryan Douglas mommy to Kylie (9) and Megan (6.5) and furbabies Gavin, Buster, Sox, and Hailey |
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DVFlyer |
Posted: Jan 21 2009, 08:08 AM
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Just a man Group: Members Posts: 2,733 Member No.: 1,368 Joined: 10-February 05 |
I'm skeptical of it, but eliminating wheat and other things (in my son's case) isn't going to hurt him so we figure why not try. $900!!!!!??? If you are interested, I can give you the information for the lab we used- "Great Plains Lab"- in Kansas (I think). We paid $250. I don't think the Dr. charged us for taking the blood... ? Maybe. I'll have to ask my wife. I have no idea if the lab we used is trustworthy, but the results are very in-depth. I'll scan his results and post them so you can see, if you want... very interesting. -------------------- Convincing the world that the only way to solve the ongoing issues while raising children is PERSISTENCE. You have to keep trying things and not give up........ they eventually go away on their own. ;-)
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gr33n3y3z |
Posted: Jan 21 2009, 08:37 AM
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Doin Good :~ Group: Moderators Posts: 15,274 Member No.: 822 Joined: 13-October 04 |
Hi Karen its so nice to see you here missed you
I hope Megan feels better soon Keep us up to date -------------------- Wife to Ed (Redchief)
Mom to Rick,John,Erin and Kaitlin "Believe 100% in what you see believe 50% of what read and none of what you hear" |
DVFlyer |
Posted: Jan 21 2009, 11:22 AM
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Just a man Group: Members Posts: 2,733 Member No.: 1,368 Joined: 10-February 05 |
I'm . We just got an email response from our Naturopathic doctor (Dr. Nicola McFadzean) after sending her a note about our trip to our regular doctor. We took Chloe into her pediatrician because her cough wasn't going away. Michelle convinced them to do an allergy blood test, but they ordered the IgE test and this is what Dr. Nicola said "Yes we definitely need to do IgG testing for her. The IgE tends not to be too useful. I'm convinced no one knows anything. This post has been edited by DVFlyer on Jan 21 2009, 11:33 AM -------------------- Convincing the world that the only way to solve the ongoing issues while raising children is PERSISTENCE. You have to keep trying things and not give up........ they eventually go away on their own. ;-)
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