Megan's Gagging Isn't Any Better

[TCA]

I know I haven't been as active on here as usual, but I've been at other forums looking for answers for Megan and her constant gagging and retching. I'm trying to find a solution before 7/5 when they have a scope planned. The cardiologists don't want her to be put to sleep unless absolutely necessary. I'm trying everything under the sun, without any luck so far.

Today has been the most frustrating day I've had in a long time, and I have a lot of frustrating days. Meg went NPO at 2am for the motility test at Vanderbilt this morning. When her stomach is empty, she retches more, so she retched about 25 times between then and the appt. at 8 am. I got up at 4 in order to get all of us ready and in the car by 5:15 to pick up the sitter I had hired to ride with us to watch my son during the 2 hr. test. My son wet his pants before we even got 3 mi. from the house, so had to stop and clean all that up. Hubby put him in car without taking him to the bathroom first (GRRRRR). Finally got to sitter's house and she said she knew a better way to get to the interstate from her house, but she got lost. Thankfully, I'm pretty good with directions and got us back on track only losing about 20 mins. About 5 miles after getting on, there was terrible accident and traffic had stopped. Finally got to the hospital, 5 mins. late. Good thing I left really early and drove like a mad woman!!!!

We get into the nuclear med room for the test. They lay her on a table flat of her back and strap her to it, screaming her head off. I told the tech that she had horrible reflux and was going to throw up if he didn't raise her up and get her calmed down. He gave me that, "this is my job" look and told me it would be fine. He started putting the solution in and she immediately threw up. He said very nonchalantly, "Well, we can't do the test today since she threw up. No way it would be accurate. If we have any openings on Friday she can come back in since the radioactive material will be out of her system by then. Check with your dr."

I burst into tears. I proceeded to explain to him that it wasn't quite that simple and we had driven 2.5 hrs. to get there and that she had retched all morning b/c of being NPO. He said there was nothing he could do. I was so furious. I made it to the lobby before completely falling apart.

I called the dr. office and am waiting to hear back as to what we should do next. I checked and our local pediatric hospital can do this test, so that may be what we do. It's not as good of a hospital, though and I don't want the test to be read wrong. It's a catch 22.

I just feel so defeated. The TED is not working at all. I'm doing everything I know to do and it's just not enough. I've been running her on continuous feeds to see if that will help. I also managed to get ahold of some Neocate Infant to try. I'm scared it will make her sick, but we've got to do something. She's only gained 2 oz. in 2 weeks from mucking with her feeds.

My milk production is dropping like crazy on this diet and I've been pumping more. It's about half of what it was. I've got to come off of it to have enough milk. I'm so torn!!!!

Sorry to come unglued. It's just been a very tough day.

[eKatherine]

Try to eat more calories, especially more fat will help you support your milk production.

[TCA]

Try to eat more calories, especially more fat will help you support your milk production.

Thanks. This diet only allows rice, sweet potatoes, turkey, sea salt, squash and pears. I added canola oil because I had to ahve some fat. Supposedly this diet is low allergenic and will allow you to add in foods after reactions calm down. I think she's worse on it. I think I may just trash the idea. We don't know that it's food causing it, but just trying everything!

[jerseyangel]

My gosh, I wish I had some practical advice for you. When I was reading your post, I felt like crying right along with you. Of course you are at your wits end--I know that you have tried and dug and basicaly done everything humanly possible to help your daughter and figure out what the cause of her retching and gagging is. I also know that you are working against time with her surgery coming up. You are such an amazing mom and person, I will continue to send good thoughts your way--don't forget to take care of yourself, too Anytime you want to talk or anything, I'm here.

[AndreaB]

TCA,

I didn't realize you adopted such a strict diet. Has that just been recently? I knew you had cut out gluten, dairy, egg and I forget whether you had mentioned anything else. Were you the one posting about avocado? Are you still giving her avocado and if so can't you eat that? I second eKatherine with the coconut oil if you can. Spectrum is really good.

Have you heard back from the doctor? What is NPO?

It's ok to come unglued here, you're going through a lot. I'm sorry I don't have any advice for you, but will pray that God can lead the doctors to what is wrong. Is it possible this is something she'll outgrow? I know you mentioned something that could have been contributing to the problem (didn't you?) but the doctors hadn't wanted to do anything because of her heart. Did you say her surgery is in August?

[Girl Ninja]

What is her heart defect? Can this be contributing? Have you talked to other moms of heart babies? If not, I can look into advice from that end. My little cousin has HLHS (third surgery next month) and his mom (also a nurse) is now really well versed in the issues those kids have.

Be sure to drink TONS of water too! It affects milk production soo much! *hugs*

[VydorScope]

TCA,

All I can say is that I personally threw up the stuff justliek your daugher, and they had to reschedaul me too. So did my son, infact Im pretty sure my son did it in the same room she did, so she is in good company at least!

You are in our prayers, and you can call/stop by any time if we can help we will. (well not next week as we will be away... but other then that LOL)

[TCA]

As for the diet, I had added corn to my list and that didn't seem to be helping either. I found the TED on Friday and started it on Sat. Things seemed to have gotten worse after that. I can't figure out what's related to what anymore. The only think I'm 100% sure of is that if I eat gluten, she stops gaining weight, becomes anemic (severely), lethargic, and projectile vomits. We're not going there again. Today I thought I might need to eliminate rice just to get rid of all grains to try that. I added soy back to help with protein and calcium. I have to eat something!!!!

NPO is Non Per Oral - can't eat anything.

As for the water, If I drink any more I will float away!!!!!! I added decaf tea to my diet today since it's something I love and will drink even more of.

Sorry I didn't call today Vincent, but my husband had planned to go fishing with our son this afternoon. He was taking off work early for them to have some time, so I didn't even try to set anything up. I know we'll be back up soon.

I've been on the phone with dr. offices and we now have an appt. for next week here in Huntsville. hopefully we can figure something out then.

As for her heart defect - it's pulmonary atresia with a large VSD (ventricular septal defect). It is common for kids with heart issues to have GI issues, but not to this extreme. Forgive me, but what is HSLS? I've probably heard, but my tired brain is drawing a blank. I hope his surgery goes well.

Thanks for listening everyone. I always know I can coun't on all of you to try to help. It means a lot. I also appreciate all the prayers. They've saved Meg more than once.

[VydorScope]

Sorry I didn't call today Vincent, but my husband had planned to go fishing with our son this afternoon. He was taking off work early for them to have some time, so I didn't even try to set anything up. I know we'll be back up soon.

OH! No need to be sorry, you had enough to deal with!

[flagbabyds]

Im sending thoughts and prayers your way!

My parents went through with what you were going through. I was in the hospital for 3 months before the celiac was diagnosed, being diagnosed with many diseases that were wrong. had a feeding tube in for a long while, and a broviac catheder in for 9 months, and if my mom ever messed up once, she would have given me a heart attack and probably killed me. Luckily I don't remmeber this, and your daughter will not either.

Hope you feel better!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Becky6]

Hugs!! I am sorry that he didn't listen to you! I hope you get it all figured out fast!!

[key]

Have you looked into Chiari Malformation? It is something with the brain and causes gagging. I did read that it tends to go with other problems, so maybe since she has the heart defect? I really don't know. i was going to mention this to you before, but I am sure it is a very long shot as to why she is gagging and retching. You may have already heard of htis. Just research it online some and see what you think.

Hang in there. I would have been beyond angry!!! I am SO very sorry this happened to you. People can be so rude. What test was it?

The diet you are on sounds very strict. I think I would take a break and get your milk supply up. I hope you soon find some relief from the stress you are under. It can really take a toll on Mom!

HUGS,

Monica

[TCA]

Have you looked into Chiari Malformation? It is something with the brain and causes gagging. I did read that it tends to go with other problems, so maybe since she has the heart defect? I really don't know. i was going to mention this to you before, but I am sure it is a very long shot as to why she is gagging and retching. You may have already heard of htis. Just research it online some and see what you think.

Hang in there. I would have been beyond angry!!! I am SO very sorry this happened to you. People can be so rude. What test was it?

The diet you are on sounds very strict. I think I would take a break and get your milk supply up. I hope you soon find some relief from the stress you are under. It can really take a toll on Mom!

HUGS,

Monica

I checked out the CM stuff. The only thing Meg has is gagging of the symptoms. I'll mention it to the drs., though. About the only specialist she doesn't have now is a neurologist, so why not get them involved too?

It was a gastric emptying test to check her motility. Nuclear medicine thing.

My husband convinced me to forget the TED for now. She hasn't improved any after 4 days. I'm still avoiding gluten (obviously) milk, egg, corn, and rice for now. rice is just temporary and it's about the only thing I haven't eliminated at some point, so it's reasonable to try for a couple days. I'm eating peanut butter while typing......mmmmmmmmmmmmmm that gotta make me feel better!

[Guest Robbin]

I am so sorry for you and your family and what you are going through. It is such a nightmare when your child is sick, I know. I nursed my youngest for 2 1/2 years and he gagged and threw up (projectile vomiting) anytime I had eaten foods he was sensitive to. This took a long time to narrow down but with him it was dairy, eggs, nuts, and veggies like spinach and broccoli. I know you are not eating a regular diet, but I hope maybe something can be pinpointed that is an easy solution, since you have had nothing but difficulties. I also drank a lot of water. Drink at least a glassful after you nurse each time. You may be needing extra hydration because of stress-you have more stress than I can imagine and I hope you have a strong support system. We are all here for you Take care.

[evie]

TCA.. I know you are a very strong person to have gone thru all that you have already!! Am sending up my prayers for all of your family to get thru this stressful situation. God gives mothers of sick children an extra bit of energy & whatever else they need when our children are sick. We had 3 of them, that was a long time ago..am a gr. grandmother but I remember a lot of it. Take care of yourself, and I hope the answer to Megan's problems come soon!! evie

[Tony'sMom]

I'm sorry to hear that Megan is having such a rough time. I will keep your family in my thoughts.

[Girl Ninja]

HLHS is Hypoplastic Left Heart Syndrome. Basically the left side of the heart stopped growing while he was developing.

I can still ask her if she has any tips/ suggestions. I know she had to only feed her son a special formula. He couldn't keep anything else down, not even her milk, and his intake of fluids was VERY strictly regulated b/c of the meds he was on. She didn't get any time to try to figure out her diet, and she was never allowed to actually nurse him. She had to pump so they could measure how much he ate and then weigh every diaper.

[TCA]

Girl Ninja -I'm pumping too. Couldn't nurse for a long time for the same reasons and when they said I could, she wouldn't any longer. We have tried EVERY formula out there. We even tried Neocate1+, but not the infant. It's the last thing to try. Probably will try that tonight or tomorrow, according to what kind of day she has. Any advice or help is appreciated.

Robbin - thanks for the encouragement with food elimination. I really don't mind the diet being so strict. At this point it's eat to live, not live to eat. I just can't seem to keep my milk production up since I'm pumping 100%. If she would nurse I think my body would adjust, but I just can't keep up. I'm drinking 20+ cups of water and decaf tea a day. Don't think I can drink much more than that.

Thanks everyone else for the prayers and well wishes. God is giving me strength, because I don't have any left anymore. Sorry you had to go through this too, evie. Glad things are better now and you can enjoy your great grandchildren.

[jenvan]

TCA-

Wow...so much to handle. I will be praying for you. I'm sure it is so hard to watch your daughter suffer like this...

[mart]

TCA, I have nothing to offer. But I just sent a fervent prayer from my heart up on your behalf. Keep us posted on her condition as you get the chance.

[Fiddle-Faddle]

Almighty, Master of the Universe,

my God and the God of my forefathers:

May it be Your Will that You speedily send

a complete recovery from Heaven,

a healing of the body and a

healing of the spirit to:

Megan

the daughter of

Tiffany

amongst all of the sick of

the Children of Israel.

(In my book, if you believe that Jesus was the Messiah, that still makes you a child of Israel, as He was a rabbi!)

T, I just started crying when I read your post. I hope things have already improved. Any possiblity she might "latch on" if you take off your shirt and just hold her for a few hours? If she takes a pacifier, can you sort of gently dislodge it and poke the nipple in instead?

Can you go back to eating whatever you were eating when things were working well?

Keep us posted, we're all praying for you....

[chrissy]

what reflux meds is she on? is her dose adequate for her weight? could she possibly have enlarged tonsils?

i think it usually takes a week to 10 days on an elimination diet to see any results---but i think it would be a really hard thing to do, especially not knowing if foods are really a problem. infant reflux can be a really difficult thing to figure out and deal with.

[TCA]

Thanks so much for the prayers. That's really touching. I am truly blessed!

She is on Prevacid, Reglan, and Carafate. She is on the max doses of all for her weight. When her gagging got worse I was on the same diet as usual, that's when I started eliminating foods. I would love to be able to stay on the TED for 10 days, but my milk was just falling off faster than I could keep up. To give you an idea, She needs about 20oz. a day and I only got about 10 yesterday. I had enough in the freezer to get us through til in the morning. I've added some foods back and it's helping. Hopefully the Neocate Infant will work. I'd still like to supplement so she can have the antibody benefits going into this next surgery, but if Neocate can stop the gagging, that might be the better option. We'll try it and see. I"ll be sure andlet you all know how it's going.

Thanks again...... You made my day brighter!

[Fiddle-Faddle]

For yourself: remember to BREATHE. Like when you were in labor, take some deep breaths and blow away the stress with each exhale. It's almost impossible to get a good let-down when you're stressed. There's probably more milk than you think, it just can't come out. Heck, I can't even pee when I'm upset.

For little Megan: Help her to breathe and relax--does she like to be massaged? Or gently stroked? To her ears, there is no sweeter voice than yours, so don't be afraid to sing to her, even if you feel upset. All my kids gag and/or barf when they're upset. Is she up to watching a silly video or does she just need to rest right now?

Questions: could the new gagging be some kind of seasonal allergy? Can the heart surgery be delayed a bit more?

[mart]

When is this surgery? Let's get these prayer warriors revved up. Heck, I'll get my whole church praying for little Meg.