Megan's Gagging Isn't Any Better

[jerseyangel]

Thanks, Vincent--we're so concerned.

[Rachel--24]

Rhonda,

Thanks again for all the info. Between the sulfites and msg I'm finding it extremely difficult to stay feeling good. I react to produce but I thought it was only msg I needed to be concerned about. They spray a growth enhancer called Auxigro on the crops..and its 30% msg. Strawberries, grapes and potatoes are all heavily sprayed....actually the list is long..I think by now nearly all crops have been approved for Auxigro....even organic.

You say your son's reactions last 2 weeks? It can take me that long to start feeling good too...during that time I feel as if all foods bother me or trigger symptoms. Is it like this for your son?

I think this is useful information and from all I've read and experienced these substances can wreak serious havoc on the body and its very hard to diagnose. Also a very hard diet to follow due to inadequate labeling. Many people can react to sulfites under 10 ppm. Also, as is the case with msg...if the sulfites are coming from another ingredient such as corn syrup...it need not be declared at all. Its very tricky.

[VydorScope]

UPDATE!!! UPDATE!!! READ ALL ABOUT IT!!!

Okay I called her, and she is ON HER WAY HOME with Megan. The Surgery is still schedauled for 7/25.

She siad the hospital was excellent with thier dietary needs. They still do not have an answer to why Megan broke out in the coldsweats and all, and pretty much everything is on hold till her normal docs get back in town.

She said she would post as soon as she got home, but I told her not to. I told her get settle in and all first, that we could wait.

Thats all I gots!

[Rachel--24]

Thanks for the update Vincent. So nothing happened while the docs were watching her? She didnt have any episodes or anything? Nothing for them to work with or try to figure out?

Sorry...you probably dont know all the details yet huh.

[VydorScope]

Thanks for the update Vincent. So nothing happened while the docs were watching her? She didnt have any episodes or anything? Nothing for them to work with or try to figure out?

Sorry...you probably dont know all the details yet huh.

No only talked for a min... I am not a big phone talker... heh. But she did say the doc's have an idea, but to me it sound like a extreme long shot, she did not give me the name but siad it was a "$20 word" and she have to look it up when she got home. They plan to test for it durring the heart procedure since it needs a 24 hour urine smaple which requires a cathrader thingy that I cant guess how to spell. You know the tube thing that they insert to collect your urine.

[Rachel--24]

Aaaah...I guess she will explain it when she has time. At least they have some kind of plan....long shot or not.

[AndreaB]

Thanks for the update Vincent. All that she goes through and still such a happy girl...a testament to God's grace working in her. Tanya...get some rest. Somehow I doubt you slept much at the hospital.

[Guest Robbin]

Thank you Vincent -I hope you have a good night Tanya and little Megan sleeps well too.

Rhonda, maybe we should start a thread on the sulfites. I got excited and teary when I read about this-I think my "little one" (he's 13!) may have a problem with it. Gelatin makes him very ill, so this was a big clue. To think he might be able to eat organic apples or berries without worrying would be a blessing. I think he would probably fight with me to even try. I will try to find something to try and keep the epi-pen and benadryl handy! I am a little afraid to try.

Good night all--going to turn in early for a change tonight. I hope everyone has a restful healthy night Judy --nothing but clouds and rain here in Va. I think I will pray on a lightning flash tonight for Megan and Tanya.

[Judyin Philly]

Vincent & Robbin--Vincent you wonderful. Thanks so very much for posting. I hope Tanya will just get some rest and hope Megan can sleep too. Know I will sleep better tonight...if she got some answers that's a blessing and they didn't have to go ahead and do surgery now as i know she wants to wait for her dr to get back. Vincent, know you and you wife were a great support by just being a 'phone call away'

Robbin..yeah, it's cloudy hear too. God out my 'special mustard' seed and using that now..it's good therapy for me to get it out too hold too. There's a a long personal story to my precious mustard seed pin. I'll share it sometime.

love to the board members for 'just being you' and welcome home Tanya

prayers

Judy in philly

[TCA]

Thanks for checking in everyone, especially Vincent and Kristi for the calls. It's such a blessing. I am soooo glad to be home. sorry I didn't write in earlier, but it's been one heck of a day. I'll try to answer everyone's questions, but forgive me if I forget something.

The drs. did witness a few of Megan's spells, though none were as bad as the one on Friday. She was hooked up to all the monitors when each happened and nothing changed except an elevation in her heart rate. After much pondering they think her "Fight or Flight" response is hypersensitive right now. this could be because it's getting time to do the surgery or any other number of reasons, but it's not related to anything dangerous to her heart from all the test results. The EKG showed no flow blockages and good heart function considering her defect. Her Blood oxygen sats were in the 70s-80s, as expected for now. Everything looked normal for her. The only other possibility they could come up with is a very rare cancer of the adrenal glands, but she shows no other symptoms other than sweating. Like vincent said, they plan to test it later when she will have a catheter anyway. They really don't think it's a possibility, but want to rule it out if the spells continue. I'm really not worried about it at all.

Luck would have it that both her cardiologist and surgeon are out of town this week , but will be back Monday. They will confer at that time on a definite surgery date, but the cardiologist who's treating her thinks they will go for 7/25. There doesn't seem to be an urgent need to do it before then.

She was so funny and just charmed all the nurses. She had an IV in one hand, so it was bandaged up. Her room was across from the nurse's station and her favorite past time quickly became waving her clubbed hand to anyone who walked by and giving them her adorable smile. She really would have had a ball if it hadn't been for all the poking and proding. It amazes me at how social she is having been isolated most of her life. What a joyful little blessing she is!

The GI came by her room and said the pathologist that reads the biopsies is also on vacation, so that's why we haven't heart yet. He did give everything a cursory view and said he sees no evidence of EE/EG!!!!!!!! He said the villi look slightly blunted (big surprise ), but he can't tell real well because of the way the slide was cut. He needs a pathologist to look at it. He did see evidence of irritation due to reflux still, so he doubled her prevacid to 30 mg. a day. He said there is nothing beyond that to be done medicine wise. After the heart surgery we'll see where we stand and possibly redo the fundo if needed. He's in high hopes that fixing the heart will have a major positive impact on the gut. I pray he's right.

Rhonda, when I did get to talk with the GI today and mentioned your story to him. He was very open to the idea, but when I started mentioning all the things sulfites are in he was a bit worried. We HAVE to get her to gain weight before surgery, but breastmilk alone isn't enough calories to do that. The Neocate 1+ is 30 cal/oz, so mixing it 1/2 with EBM brings it to 25 cal/oz. She's only holding her own in weight right now as it is, as we've seen no gain since last week. We can't afford to eliminate the formula and lose weight this close to surgery. I looked at the info you posted in great detail last night after finding a printer and taking it back to the room and think it's a good possibility, but I already have eliminated a lot of those foods because of other constraints. I still have a lot of research to do to understand it all better, but you gave me a great start. The GI said it would be a sensitivity, rather than an allergy because of the size of the molecules. He does believe it's a possibility, just not sure how to approach it yet with her with the impending surgery. It's a catch 22 no matter how I look at it. I haven't give up, though, and the GI was very encouraging. I even asked the cardiologist if these spells could be food intolerance related. He said it wasn't typical, but anything is possible with her.

I have to really brag again on the dietary staff and their desire to meet the needs of gluten-free patients. I have a notebook of gluten-free info I keep with me most of the time with things like food lists and the Delphi list. They wanted copies of everything and a list of good foods I know of. They have a nutritionist on staff who is a celiac and she' going to do some gluten-free menus for them, but she's not familiar with kid foods, so I was trying to help there. I'm not saying the meals were gourmet, this is hospital food we're talking about, but I didn't get glutened and that is a HUGE praise!!!! they made a couple of mistakes, but I showed them and they were so receptive and wanted to learn more. After I called about this last month, they did a training session for all the staff on celiac. This was such a relief. Hopefully it won't be necessary, but if our son ever has to be hospitalized, I want to take him up there for this reason.

Judy - gotta hear your story.

Love and hugs to all. I'm soooo tired, so going to try to get into bed soon. Only had about 3 hrs. sleep last night with all the staff coming and going. glad Meg's a heavier sleeper than I am!!! Again, thanks for the prayers and support. all of you are the greatest!

[Fiddle-Faddle]

Tanya, we are honored and blessed to know you! I hope you and Megan have a really, really good night!

[AndreaB]

Thanks for the update Tanya. Hope you and Megan have a good nights rest.

[Judyin Philly]

TANYA--Can't believe you had the energy tot type all that but so happy to get the details.

I'll type the story and share in a pm

anyone else who wants it, pm me.

will get to it one of these days.

only up this late cause took 4 naps today.

hugs dear one AND PRAYERS FOR A RESTORATIVE SLEEP FOR YOU AND MEGAN.

judy

[mouse]

Thank you Tanya for taking the last of your energy to post. We all check in several times a day to see how Megan is. Hope you and Megan got a decent nights sleep. Hugs and prayers coming your way.

[jerseyangel]

Hi Tanya--Can't believe you were able to post all of that on so little sleep! I'm beginning to think you're Superwoman Glad you're all back home--give Megan a kiss for us

[Cheri A]

'Morning Tanya and everyone else I am so happy to read that you are back home! And to hear how well you are able to work with the staff! Continuing prayers here that you both had a good nights sleep and that today is a good day for you.

Rhonda ~ I'm so interested in reading your posts on the sulfites. I don't see that we have any problems with them, but just the fact that they are legally allowed to mess with our food makes me mad. I was at the grocery store yesterday and couldn't find ANY grape jelly/jam that didn't have HFCS in it. I added it to my co-op list for next week and DS will just have to live without it until then. I'm really sad to read about strawberries cuz we luv them so much! My IRL friends already think I'm crazy.

[Judyin Philly]

Good Morning Tanya--how was yours and Megan's nite???

Rhonda-did anyone start the sulfite thread? Havent' been on forum yer, answering forum emails..BUT Rhonda WHAT DID I MISS ON STRAWBERRIES...??? i'VE BEEN EATING THEM LIKE CRAZY LATELY? WILL HAVE TO GO BACK AND READ.

i'LL START THE THREAD BUT WOULD RATHER IT BE RHOND'S NAME AS SHE'S GETTING THE REP AS THE 'SULFITE' PERSON. I'M SURE NOT..DON'T KNOW DIDDLY ABOUT IT.

HUGS TO ALL

JUDY IN PHILLY

[TCA]

good morning! Just wanted to check in. I actually got to sleep until almost 9 this morning!!!!! (I guess Superwoman crashed, Ha!) I still feel like I could sleep for days, but that's amazing for me!!! My hubby got up with Meg last night and let me sleep, God bless him! I barely even heard the alarm when it went off at 3 for her meds. She had a few spells last night, but nothing too dramatic. She's is a good mood this morning and chilling in her swing right now.

I'm with everyone else on starting a post on sulfites. This info is too important to get lost in this long thread. It might even be good to copy some of the info Rhonda's typed here into it to have it all in one place for everyone.

I also wanted to add in a big praise for my friends here. Angie, a dear friend of ours came to our house to keep Cole the first night we were at the hospital. She cleaned the house and did all my laundry too. My friend, Liz, is going grocery shopping for me today. My other friend, Amanda, had offered to do anything at any time. We are blessed on every front! So many of you have been concerned about this, so I wanted to let you all know that we're being well cared for!

[Rhonda]

I just posted about sulfites under “related disorders and research”.

Rachel & Robbin - I am writing back to you under the new sulfite post.

Judy – You did not miss anything about strawberries. Dax can not eat conventional strawberries because of sulfites in the sprays, but he can have the organic ones.

Tanya – I am glad you are home, and hope Megan can gain some weight. I am so happy that you are getting the help you need there. Hugs and prayers from Colorado.

Rhonda

[TCA]

Just wanted you all to know that Megan had a really good day yesterday and pretty good today. her gagging is worse. I don't know why, though. Still trying to figure out the sulfite thing to give it a try. Looking forward to hearing from drs. next week.

[VydorScope]

Just wanted you all to know that Megan had a really good day yesterday and pretty good today. her gagging is worse. I don't know why, though. Still trying to figure out the sulfite thing to give it a try. Looking forward to hearing from drs. next week.

So then as far as you know everything still set for 7/25?

[TCA]

So then as far as you know everything still set for 7/25?

Yes, as far as I know, but that's not very far these days!

[jerseyangel]

Gosh, that's right around the corner now. I remember when you first told us, it seemed so far off.

[TCA]

Meg had another not so good night. So she's sleeping all morning. Her gagging is just so bad and nothing seems to help. I'm aggressively looking into the sulfite possibility, but her meds and formula are causing a lot of problems. Still trying to figure it all out. I'll be so glad to get a date planned for the surgery. I hope and pray it makes a difference!!!!! I can't believe how close 7/25 is. I'm in a hurry to get it over with and scared to death at the same time. I need to step back and remember God's in control and pray he will guide us in everything we need to do.

[AndreaB]

Meg had another not so good night. So she's sleeping all morning. Her gagging is just so bad and nothing seems to help. I'm aggressively looking into the sulfite possibility, but her meds and formula are causing a lot of problems. Still trying to figure it all out. I'll be so glad to get a date planned for the surgery. I hope and pray it makes a difference!!!!! I can't believe how close 7/25 is. I'm in a hurry to get it over with and scared to death at the same time. I need to step back and remember God's in control and pray he will guide us in everything we need to do.

I'm sorry Tanya. It's hard to put our head knowledge of God being in control to practice as heart knowledge isn't it. The 25th is coming up fast and I am relieved they moved her date up. Our thoughts and prayers are with you and little Megan. If it's any consolation...if you can't pull her off of sulfite foods now, you'll be able to soon. I'll be curious to see if there is an imporvement with more diet changes.

HUGS!