Megan's Gagging Isn't Any Better

[amommy]

First time on the forum, my son Alex has biopsy neg. Nov./05 but started the diet before the results came in and the diet worked very well, Alex also had occipal epilespy, that is the one that is associated with celiac. The epilipsy seems to be gone ten months after starting the diet, we stoped the epilipsy meds Sept. 20/06 he has not had a sezure. So my son does not test for celiac but has it, not all those with neurological manifestations will test, he also gags very often I have used this as a gauge to find other foods that bother him, this took me 10 months to figure out that canola oil bother him, then I found other oils bothered him as well, not as bad as canola, what these oils seem to have in common is that they were not organic, the solvent used to extract the oil is called hexane, since I went to only organic safflower oil he has been doing much better. I have been adding foods to his diet that I had removed in a effort to find what was bothering him eggs were fine, then cereal with organic chocolate, and milk, I've had to take out the cereal and then I have just taken the milk out on Mon.

We went to see his neurologist on Wed. he had been looking for calcifacations and did a MRI on Nov. 1st. he did not find calcifacations but he found a Chiari malformation which causes gagging among other things, the doctor was very surprised he does not have more symptoms. I think this has to do with the celiac because the gagging seems to come and go with foods. University of Maryland has done some studdies on intestinal permability caused by celiac, that allows cemicals and toxins to enter the blood stream. I Don't know if this is happening to your Megan, but I don't use anything that is not organic now, even bacon and ham seem to bother him. I have stopped trying to add foods back to his diet because where celiac affects the brain is the cerebellum, this is also where this Chiari malformation is, could this be caused by inflamation from celiac????? So try going to barebones diet with no cemicals only fruits and veg, chicken patotoes, salt, pepper, safflower oil, heinze ketchup. and work up from there, have the drs. check for Chiari malformation. Good luck amommy

[Fiddle-Faddle]

Tanya, how did things go on the 29th? Is everything okay?

[VydorScope]

From Megan's site...

TUESDAY, NOVEMBER 28, 2006 11:43 AM, CST

Tanya just called and asked if I would update the site for her, as she has multiple appointments with the kids this afternoon. The heart cath is off for tomorrow (Wednesday, November 29th) due to Megan having diarrhea. They are now waiting on them to reschedule.

Cotrena

[GFBetsy]

From Megan's site...

Thanks, Victor.

[NoGluGirl]

From Megan's site...

Dear VydorScope,

Thank you for the update. Poor little Meg! We will keep pulling for her. A prayer chain might help. I will try to get a hold of a bunch of people!

Sincerely,

NoGluGirl

[TCA]

So sorry to have dropped off the face of the earth, but life has been NUTS around here. As soon as we got the D cleared up by getting her off the antibiotics and pumping her full of probiotics, I got a kidney stone that brought me to my knees (literally). It's been a whirlwind, but I finally started to feel pretty good by yesterday. I hope all of you are well. Thanks so much for the prayers. They're still carrying us!

Here's what I just posted to caringbridge:

I just wanted to let everyone know that Megan's heart cath has been rescheduled for Jan 8. I'm sorry I haven't updated sooner, but things have been crazy. I was actually in the emergency room Sat. morning with a kidney stone that finally passed on Mon. I think we're all doing pretty well right now. We're getting ready for Cole's 4th Birthday on Sunday. He's very excited.

Megan is starting to eat a little more. Her favorite is Jello. She had a checkup with the GI on Tues. and he took her off of the tube another 2 hours a day. She is now off a total of 11 hours per day. We're hoping this will increase her appetite. He gave us the ok to try dairy, but after trying some pudding yesterday she cried all night. I don't know for sure if it was connected but will wait a while before trying it again.

Thanks for the continued prayers. We hope all of you are having a wonderful holiday season and remembering the real reason for the season.

Love you all!

[VydorScope]

Any updates?

[TCA]

Hello everyone! I've really missed being around, but life hasn't slowed down any in the last month. I'm really hoping we will have some sense of normalcy in Jan and I can be active on here again. I miss all of you and think of you so often. Cole's birthday was 12/10, so I was swamped getting ready for that, then my dad had a stroke on 12/11. I was helping some with him and once he got out of the hospital, Christmas hit full force. Amongst all of that Megan had bronchitis, Jarod had a virus, and I've had a chronic sinus infection. Believe it or not, though, we see just how blessed we have been through all of this.

Megan is doing WONDERFUL!!!! She is down to one prevacid a day and has only had 1 dose of reglan in 4 days. She's only had 2 gagging spells that weren't associated with trying to eat in those 4 days!!!!!!!!!!!!!!! God is sooooo good. It's truly amazing at the progress she's making. She's now scooting all over the place on her bottom and will occasionally get on her belly like she wants to crawl. She gets really mad if I try to help her, though. She can also take a couple steps holding on to my finger, but doesn't want to much. She is drinking really well and trying some foods. Her latest love is Hormel pepperoni, of all things. I was a little worried about it having so many ingredients, but her brother gave her one without me realizing it and she hasn't had any problems. She still mainly sucking/chewing on things and spitting them out, but she's doing a lot more of that and occasionally swallows some.

Her heart cath is 1/8. They still plan to do the stents then, so please continue to pray. I hope the vessels have just opened on their own. I trust God to make things go the way they should, though.

I hope all of you had a very Merry Christmas and Happy Holiday Season. Enjoy your New Year. Love to all!

Tanya

[nikki-uk]

Hi Tanya - wow you have been busy!!

I am sorry to hear about your Dad - hope he's recovering ok - my Mum had a stroke a couple of years ago.

Megan sounds like she's comimg on in leaps and bounds!!

Will be thinking of you for the stent op.

Happy New Year to you all and keep us updated

[Judyin Philly]

tANYA

HAVE YOU ON MY CALENDAR FOR THE 8TH.

gOOD LUCK WITH DAD AND I'LL KEEP YOU IN PRAYER.

LOVE

JUDY

[VydorScope]

Timothy loves that pepperoni too.

Be sure to get in touch with us before your trip to Vandy and let us know how we can help!

[key]

Tanya,

SOunds like Megan is doing so awesome! I am sure it gives you some relieve. Your faith is amazing and inspiring. May God continue to work in Megan's life and your little family!

Hope your dad is doing better.

Sincerely,

Monica

[dlp252]

Your faith is amazing and inspiring. May God continue to work in Megan's life and your little family!

Yeah, ditto! I'm glad to hear that Megan is doing so much better! Will keep her in my prayers.

[AndreaB]

Tanya,

Thanks for taking the time to update us. Megan sounds like she's moving right along.

Hope you Dad is doing better and will (or has) made a strong recovery.

[jerseyangel]

Hi Tanya

I have thought about you, Megan and your family so many times. Thank you for the update.

Wow, you've really had your hands full! I am sorry to hear about your dad--I hope he recovers steadily.

Megan sounds like she's making great strides. I will be thinking of her on the 8th.

A belated Happy Birthday to Cole! Bless his heart

Take care, and Happy New Year!

[TCA]

just posted this to caring bridge. Thanks for all the well wishes.

**********************

Megan's heart cath is still on for Monday, 1/8/07. We are supposed to arrive at Vanderbilt at 9 am and the cath should be sometime around 11 am. The stents are still planned, but I hope they will not be needed (I think).

Megan is doing incredibly wonderful. She has really turned into a typical toddler the past few weeks. She is scooting on her bottom all over the place and pulling up. She is also walking holding on to our fingers. She is now officially mobile! She is also really eating now! This morning she actually asked for bacon! We're slowly increasing her food choices, but she's now swallowing food and drinking from a sippy cup. The quantities are still very small, but she's making so much progress!!!!

We spent New Year's with Jarod's parents and Megan decided to take out her G-J feeding tube. They live in the middle of nowhere, so of course we couldn't find anyone to put it back in (has to be done under x-ray by a radiologist). We finally got our hands on a G-tube and I put that in (due to a frightingly incompetent doctor). Her reflux has improved dramatically and we had planned to do this anyway after the heart cath, she just changed the schedule. Things are always in her time! We thought if it didn't work, we could get the GJ replaced the next day. The good news is that SHE DIDN'T GAG ONCE!!!!!! Now all of her feedings go to her stomach with no problems. This is a bigger praise than you can imagine!!!!! God is soooooo good.

We hope all of you had a wonderful Christmas and holiday season. We did, even though things have been a little crazy. My Dad had a stroke on 12/11 and is recuperating well from that. He is very blessed to be recovering from such a severe stroke. Megan had bronchitis the week before Christmas, so we're keeping her in until after the heart cath to make sure she doesn't catch anything else. Jarod had a virus that he is finally over. It was crazy, but it was so nice to be able to take Megan to our families and church for the Christmas parties.

We are continually blessed by your prayers and support and ask that you continue them. We truly hope that each of you are doing well and think of you also in our daily prayers. We each are blessed beyond measure in the simple fact that we are loved by such an awesome God that He would send His only Son for us. I cannot imagine the pain this must have caused Him as I have watched our baby suffer from her comparitively minor infirmities. I love Him for His sacrifice and thank Him for giving us the daily strength to deal with the struggles and rejoice in the miracles He has provided.

Love to each of you. We will keep you updated on Monday.

[Lisa]

Tanya:

I am so pleased that every thing is going so well. I'll continue to keep your family in my thoughts.

Lisa

[AndreaB]

Tanya,

I'm so excited for you that she has made such strides!

Glad to hear things have calmed down as far as illnesses. Hoping the stents won't be needed too.

[2Boys4Me]

Thanks for the update. It sounds like Megan is doing great.

Soon you won't be able to keep up with her!

[VydorScope]

Great news on the eating!!! YAY!!!

But you lost me on the types of tubes?

[Judyin Philly]

thanks for the update.

i'll keep you guys in my prayers.

love

judy

[NoGluGirl]

just posted this to caring bridge. Thanks for all the well wishes.

**********************

Megan's heart cath is still on for Monday, 1/8/07. We are supposed to arrive at Vanderbilt at 9 am and the cath should be sometime around 11 am. The stents are still planned, but I hope they will not be needed (I think).

Megan is doing incredibly wonderful. She has really turned into a typical toddler the past few weeks. She is scooting on her bottom all over the place and pulling up. She is also walking holding on to our fingers. She is now officially mobile! She is also really eating now! This morning she actually asked for bacon! We're slowly increasing her food choices, but she's now swallowing food and drinking from a sippy cup. The quantities are still very small, but she's making so much progress!!!!

We spent New Year's with Jarod's parents and Megan decided to take out her G-J feeding tube. They live in the middle of nowhere, so of course we couldn't find anyone to put it back in (has to be done under x-ray by a radiologist). We finally got our hands on a G-tube and I put that in (due to a frightingly incompetent doctor). Her reflux has improved dramatically and we had planned to do this anyway after the heart cath, she just changed the schedule. Things are always in her time! We thought if it didn't work, we could get the GJ replaced the next day. The good news is that SHE DIDN'T GAG ONCE!!!!!! Now all of her feedings go to her stomach with no problems. This is a bigger praise than you can imagine!!!!! God is soooooo good.

We hope all of you had a wonderful Christmas and holiday season. We did, even though things have been a little crazy. My Dad had a stroke on 12/11 and is recuperating well from that. He is very blessed to be recovering from such a severe stroke. Megan had bronchitis the week before Christmas, so we're keeping her in until after the heart cath to make sure she doesn't catch anything else. Jarod had a virus that he is finally over. It was crazy, but it was so nice to be able to take Megan to our families and church for the Christmas parties.

We are continually blessed by your prayers and support and ask that you continue them. We truly hope that each of you are doing well and think of you also in our daily prayers. We each are blessed beyond measure in the simple fact that we are loved by such an awesome God that He would send His only Son for us. I cannot imagine the pain this must have caused Him as I have watched our baby suffer from her comparitively minor infirmities. I love Him for His sacrifice and thank Him for giving us the daily strength to deal with the struggles and rejoice in the miracles He has provided.

Love to each of you. We will keep you updated on Monday.

Dear TCA,

This is so exciting! It sounds like your holiday season has been quite active. I am happy to say ours was a very calm holiday. We will continue to pray for your family. I am so sorry to hear your father had a stroke. Thank God he is recovering! Keep us updated! We will all be anxious until we know if Meg's cath went well.

Sincerely,

NoGluGirl

[VydorScope]

UPDATES:

(posted by her friend on Open Original Shared Link )

MONDAY, JANUARY 08, 2007 12:41 PM, CST

Talked to Tanya at abut 12:30 and they had just called them. The had done the ultrasound/ecocardiogram and was just getting started with the heart cath. She said it would be about 45 minutes until they were finished.

MONDAY, JANUARY 08, 2007 02:01 PM, CST

Talked to Tanya and Mrs. Debbie (Jarod's mom) a few minutes ago. They had to put a stint in on the right side (right pulmonary to lung). They are hoping that they could just balloon the left, but were going to have a stint ready just in case. They said that she was doing really good.

MONDAY, JANUARY 08, 2007 06:50 PM, CST

The heart cath was over a little before 4. They had to put the stint in on the right side, but were able to balloon the left. The pressure on the right side was at 80% and it should have been around 30%. (There was too much blood pressure on the lungs.) The latest update was that it had come all the way down. The overall diagnosis was not bad but it wasn't as good as the doctor's would have liked. She will be in the hospital overnight.

Tanya had asked me to update the sight. I am not fluent in medical "talk". This is why I opted to be brief. Tanya will most likely do an update in the next day or so to give all of the details since she actually understands all of this, unlike me. -- Cotrena

Sorry not updated sooner, swamped at work.....

[Fiddle-Faddle]

Thanks for the update--I hope they get to go home tomorrow!

[VydorScope]

Another update from megan's site...

TUESDAY, JANUARY 09, 2007 07:41 AM, CST

Megan had a great night and slept well. She has to get anher echo this mornbefore we can go home> tHIS KEYBOARD IS brokn, so i'll type more later.