Megan's Gagging Isn't Any Better

[Judyin Philly]

Thanks Vincent and Tanya

This is the best post todate.

Whole family seems to be doing well.

I'm so happy about the weight gain and gagging issue will come it time.

Who would have guessed the weight gain would be so wonderful 6 months ago.

Sorry, no help from me on 'breast feeding' those days were over about 31 years ago.

May God continue to bless you and your wonderful family

Love and hugs

judy in philly

[AndreaB]

Tanya,

I'd keep on breast feeding as long as she is interested. Seems like a good idea to me to have some in the freezer for the cold/flu season. I've read that milk only keeps 6 months (but I'm sure you know that). Can she drink out of a sippy cup? Do you think she'd take the milk from that?

My pediatrician when we were in a HMO told me to nurse as long as we both were comfortable. I weaned my two oldest at 2 years 10 months and hope to continue that long with my youngest. He already doesn't nurse as frequently so we'll see.

If she doesn't want to keep on, then don't worry yourself about it though.

Great news about her being on the charts again!

[TCA]

Tanya,

I'd keep on breast feeding as long as she is interested. Seems like a good idea to me to have some in the freezer for the cold/flu season. I've read that milk only keeps 6 months (but I'm sure you know that). Can she drink out of a sippy cup? Do you think she'd take the milk from that?

My pediatrician when we were in a HMO told me to nurse as long as we both were comfortable. I weaned my two oldest at 2 years 10 months and hope to continue that long with my youngest. He already doesn't nurse as frequently so we'll see.

If she doesn't want to keep on, then don't worry yourself about it though.

Great news about her being on the charts again!

Thanks. Meg hasn't nursed in over a year and now she won't even take a bottle. It's strictly through the feeding tube. Her activity level is increasing, which is great, but takes MUCH more time, so the time to pump is not as easy to come by (not that it was ever easy). that's why I'm thinking of quitting. My production had already started dropping off, so I'm not able to get much, anyway. It's just hard to make a decision, worrying that I may regret quitting later, but knowing I need more time now.

I've also tried the sippy cups of different styles, straws, regular cups and different bottles. So far, no luck with anything. She won't take apple juice either or water. Still trying, though.

Thanks!

Tanya

[NoGluGirl]

Thanks Vincent! I just remembered this morning that I forgot to post here and was getting on to do it. I'm pumping less, therefore less time on the computer. TMI, I know, but just didn't want all of you thinking that I'd abandoned you!

Jarod didn't have to have surgery, thank goodness. He did get a job offer out of the blue when he wasn't even looking, though. It looks like a great opportunity, but the people at his current company have been such a blessing and he hates to leave. Big decisions!

The roof is now fixed too, thankfully. It rained all around us, but didn't rain here, so we were lucky, even though we really need it. It's been so dry.

We tried upping Megan's rate last night, trying to give her more time off the pump and she wasn't able to handle the increase. Her gagging isn't any better at all. I get so frustrated!!!!

I have a question for all you breast feeding moms. I'm still pumping about 8 oz. a day and freezing it. My thoughts are that a little bit each day during the cold and flu season might help her to stay well. She has no iterest in the bottles, though I offer every day. I have enough in the freezer now for her to get about 3 oz. each day for a couple months. How long do you think I should keep the pumping up? Now that she has a formula that is working well and she's refusing to drink it, it's very tempting to quit. She's 16 mos. now. The drs. have all told me to quit, but it's almost like a mental thing. I've HAD to do it for so long it's hard to get out of that mindset. any advice is appreciated!

Love and hugs,

Tanya

Dear Tanya,

Have you or your daughter been on a lot of antibiotics? She may have an overgrowth of yeast in her system if that is the case. Yeast can be killed by a special diet and anti-fungal meds. They think that is part of my trouble. Food sensitivities tend to go along with that. I hope your little doll gets better.

Sincerely,

NoGluGirl

[TCA]

Dear Tanya,

Have you or your daughter been on a lot of antibiotics? She may have an overgrowth of yeast in her system if that is the case. Yeast can be killed by a special diet and anti-fungal meds. They think that is part of my trouble. Food sensitivities tend to go along with that. I hope your little doll gets better.

Sincerely,

NoGluGirl

That's a good point. She's been on LOTS of very strong antibiotics. What type of probiotics are you on? I have some chewable probiotics for my son. I might should start her on some......

thanks!

[KayJay]

I would quit pumping if it is stressful for you but keep doing it if you still are able to without stress. I know it is a hard decision to make but you have done a great job! So congrats to that!

I am glad to hear that Megan is growing so nicely! That is great for her to be on the charts. What is her length now? Has she grown there too?

[Luvs to Scrap]

Tanya,

I am sure you have already tried this brand but thought I would recommend the Avent sippy cup in case you hadn't. My kids would NOT every take bottles and DS didn't like sippy cups either. This was the only one he would take. The one with the white sippy thing is the softest and she could chew on it too if she needed to explore. The sippy inserts work in Avent bottles too.

Congrats on giving Megan breastmilk this long. You have given her a great gift and you should be proud of yourself. If your production is going down and she isn't using as much I think it would be ok to quit. Like you said you have some in the freezer. I finally had to throw all mine out. It was so hard. If and when she is ready for cereal I used my pumped milk to make it and both kids seemed to like it that way.

So glad to hear she is on the growth chart for weight. Great news. We keep praying for all to go well. Kendra

[NoGluGirl]

That's a good point. She's been on LOTS of very strong antibiotics. What type of probiotics are you on? I have some chewable probiotics for my son. I might should start her on some......

thanks!

Dear TCA,

I know your daughter's misery. I think the probiotics are a good idea. You can get some in powder form, which would probably be best. Antifungal meds such as Nystatin come in a powder. Your little sweetheart is probably loaded with this fungal infection! I have been on numerous courses of antibiotics over the years, and at 23, am barely able to function. At least now, we are getting to the bottom of it. Food sensitivities are almost impossible to avoid when you have Candida. Dairy makes it grow, because it feeds off of the lactose. Any form of carbohydrate will. You may want to seek a holistic physician for Megan. The yeast may even be in her throat! It can cause problems swallowing. Diaper rash can be caused by it also. The probiotics I take are Rexall pill form, but would not be suitable for a baby. Yogurt (plain without fruit or sugar) may be helpful. Her little body is probably like mine, it has just been through too much! Get a copy of the Yeast Connection by Dr. William G. Crook on amazon .com. He has the complete treatment program in the book. It is extremely strict, but I think your little girl may recover if the protocol is followed. Be sure to find a naturopathic or holistic physician who can help. I know what it is like to be exhausted, nauseated, with reflux to where you have to sleep sitting up, and would like to alleviate anyone's misery I can! Please keep me updated!

Sincerely,

NoGluGirl

[TCA]

Thanks for the advice. I'll pursue this next week. We have a great pediatrician who is open to alternative meds. He has Meg on Flax oil now. I'm going to start with him. I have had candida in the past and went through a regimen of nystatin. I wasn't to the extreme you are, but was so miserable. I didn't realize how badly it could impact digestion. I hope you feel better soon!

Dear TCA,

I know your daughter's misery. I think the probiotics are a good idea. You can get some in powder form, which would probably be best. Antifungal meds such as Nystatin come in a powder. Your little sweetheart is probably loaded with this fungal infection! I have been on numerous courses of antibiotics over the years, and at 23, am barely able to function. At least now, we are getting to the bottom of it. Food sensitivities are almost impossible to avoid when you have Candida. Dairy makes it grow, because it feeds off of the lactose. Any form of carbohydrate will. You may want to seek a holistic physician for Megan. The yeast may even be in her throat! It can cause problems swallowing. Diaper rash can be caused by it also. The probiotics I take are Rexall pill form, but would not be suitable for a baby. Yogurt (plain without fruit or sugar) may be helpful. Her little body is probably like mine, it has just been through too much! Get a copy of the Yeast Connection by Dr. William G. Crook on amazon .com. He has the complete treatment program in the book. It is extremely strict, but I think your little girl may recover if the protocol is followed. Be sure to find a naturopathic or holistic physician who can help. I know what it is like to be exhausted, nauseated, with reflux to where you have to sleep sitting up, and would like to alleviate anyone's misery I can! Please keep me updated!

Sincerely,

NoGluGirl

[Fiddle-Faddle]

Hi, Tanya, glad to hear all the good news! Hopefully, soon, you can change the title of this threa to "Megan's gagging IS better!"

If you can keep your sanity and still pump, then that's what I would do, at least through this next flu season.. I don't know if freezing destroys the antibodies, though--fresh might be the best, especially as you will produce antibodies to viruses as you are exposed to them. Either way, though, there is absolutely no substitute for breast milk--and the nutrients in breastmilk go FIRST towards building brain and bone growth, THEN towards muscle and fat. As long as it doesn't drive you crazy, I don't think it's the sort of thing you'd regret. I can't see you when you're 85, thinking to yourself, "Dang! I wish I'd stopped pumping for my baby a little earlier!"

I nursed my oldest and youngest for 2 1/2 years each, and my middle child for nearly 2 years (I had to go on a 3-week tour without him, and, although I pumped twice a day the whole 3 weeks, by the time I came home, he'd forgotten all about nursing, and I wasn't about to remind him!).

Gotta go--kids are arguing--can't wait for school to start!

[NoGluGirl]

Thanks for the advice. I'll pursue this next week. We have a great pediatrician who is open to alternative meds. He has Meg on Flax oil now. I'm going to start with him. I have had candida in the past and went through a regimen of nystatin. I wasn't to the extreme you are, but was so miserable. I didn't realize how badly it could impact digestion. I hope you feel better soon!

Dear TCA,

Thank you so much for your kind words! I hope I get well soon, too. Watch out with Candida! It can actually cause over 100 different physical symptoms. I have been on antibiotics practically all of my life.

I had bouts of broncchitis from infancy up to the time I was seventeen twice a year, often repeating courses of antibiotics. Asthma made me go on steroids as a teenager. Then, I was put on birth control for ovarian cysts. I am probably a big walking fungus. I just began to cry when I read other women's stories, because it was such a relief to know someone else had been this miserable and got well. There is hope! Good luck with Megan, and be sure to keep us all up to date!

Sincerely,

NoGluGirl

[inquirer]

If you can keep pumping for a little while longer I'd keep on pumping. (Easy for me to say!). You can always rethink in a few weeks or months after you see how things are working out. As you already know, once you stop it's really hard to start up again.

I also second the opinion that you need to get Megan checked for candida. It was a thought I had a while back but you were in emergency mode and had a heart operation to survive. As many are aware here and I've been learning, health really does start in the gut. If you have too many antibiotics or steroids, it destroys the natural flora leading the way to all sorts of problems (allergies, chemical sensitivities, vitamin deficiencies, etc.). My husband is currently getting IV vitamins. What a difference on those days! He's so full of energy! I think his gut is in such bad condition with the candida that all of the vitamins he was taking before were just passing right through. I'm happy that your pediatrician is open to alternative medicine. If your pediatrician doesn't know enough though you might look into an integrative medicine doctor or functional medicine doctor. That way you get the MD with the benefit of someone who practices alternative medicine. After all the doctors you've seen so far, I'm sure finding a new one is high on your list!

One last thought. Colostrum is supposed to be good for restoring the intestines. However, I see that Megan is allergic to dairy. Is that just to the casein? Kirkman has a colostrum that is supposed to be casein free. Supposedly it is the very, very first milking or something like that. They say that they have an independent lab verify that their colostrum is casein free. Just a thought as colostrum can be very beneficial.

[TCA]

Thanks for your input. I think I'm going to keep on just 1-2 times a day. That way it's not so much stress to get all that I need to done, but she's still getting some. I have a stockpile in the freezer now so if they put her back on ebm full time, we'll have enough until I can get my production up again.

I'm checking into the candida thing with her. I've suffered for years. Here is an interesting site I found showing the similarities of Candida and celiac disease. Very interesting. Think I will post it elsewhere for others to see.

Open Original Shared Link

[NoGluGirl]

Thanks for your input. I think I'm going to keep on just 1-2 times a day. That way it's not so much stress to get all that I need to done, but she's still getting some. I have a stockpile in the freezer now so if they put her back on ebm full time, we'll have enough until I can get my production up again.

I'm checking into the candida thing with her. I've suffered for years. Here is an interesting site I found showing the similarities of Candida and celiac disease. Very interesting. Think I will post it elsewhere for others to see.

Open Original Shared Link

Dear TCA,

Interesting how these things are so connected, isn't it? I have read book after book on Candida albicans. It is unbelievable all the misery it can cause. Food allergies and sensitivities are very common with the yeast infestation. You having it may give your daugher a genetic predisposition to it, along with the strong antibiotics. Yeast has even been noted to cause Schizophrenia, Autism, ADD, ADHD, Bipolar Disorder, Depression, and Panic Disorder along with its practically endless physical maladies. I might have been to this site already, but I am going to take a gander. Thanks for posting it for all of us. I wrote a term paper on it not long ago, and if you give me your e-mail address, I would be happy to send a copy to you. The pathology is absolutely fascinating! Another suggestion is to test Megan's blood sugar. Low blood sugar is very common with yeast overgrowth. Good luck with little Megan, and keep posting!

Sincerely,

NoGluGirl

P.S. My e-mail address is rainbow_geisha@hotmail.com

[TCA]

I just posted this to her caring bridge site. I also talked to the ped. today about probiotics and he thought it was a great idea. I'm staring with acidophilus chewable tablets that I think I can melt pretty easily and get through her feeding tube. Any other suggestions on what I should give her?

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

Megan went in for another weight check today and she's still gaining like crazy. She was 19-11!!! They expect her to gain about 3 oz. a week and that was 8 for this past week! She really is taking after me more every day.

Her gagging is about the same, as is the feeding. She is putting some things to her mouth now, but not really eating. We start with the intensive feeding therapy on 9/11 and it will be weekly after that. I pray that things will improve with that. I'm not sure how much she will be able to keep down with the gagging, but that's something we'll have to address at her GI appt. next week.

She will see the Cardiologist, GI, and surgeon next Tuesday. I expect them to release her so that we can start getting out more, but we'll see. It would be nice to visit with family and friends more. Megan is so social despite our reclusive habits and LOVES to see people. She'll be excited when she can get out more.

I also want to mention that Jarod was just offered a great position with Gray Research that he couldn't turn down. He wasn't looking for a job, but a friend of his recommended him for this position and heaccepted. It was a very hard decision for him to leave TBE, but after much prayer he decided this is the direction God is pointing him in. We have been so blessed by our friends at TBE for their constant support during Megan's illness and we thank God for each of them. It will be hard for him to leave such wonderful people, so please pray for us during this transition.

This is a link to a little story about Hope that a dear friend sent me. It made me think of why Megan Hope is our baby girl's name. Just thought I would share it.

Open Original Shared Link

[VydorScope]

Thanks for the update.

What si "intensive feeding therapy" ?

[mouse]

Thank you Tanya for always updating. I think of Megan every day and also say a prayer at the same time. Many Hugs to all of you. Armetta

[TCA]

Thanks for the update.

What si "intensive feeding therapy" ?

Feeding therapy is just that - like physical therapy or speech therapy, just trying to get her to eat. She's been getting it once every now and then, but it's getting stepped up to once a week. Hope that's a good explanation!

[VydorScope]

Feeding therapy is just that - like physical therapy or speech therapy, just trying to get her to eat. She's been getting it once every now and then, but it's getting stepped up to once a week. Hope that's a good explanation!

What do they do to her?

[Nic]

Hi Tanya, I have mentioned before that my son has hypotonia and therefore has a gagging problem due to poor muscle tone in the tongue and cheek muscles. At 3 years he entered the handicapped pre K program in our public school where he receives physical, occupational, speech, and feeding therapy. He is somewhat older so it is probably done differently and he was not as bad as Megan. But he turned 4 in April and I would say now his gagging isn't nearly as bad. He has been receiving feeding therapy 2 X a week since the April he turned 3. Now he only gags when he coughs too hard or cries hard.

Nicole

[TCA]

What do they do to her?

So far they've done things like teaching me ways to get her to accept food that I can do at home. Hasn't been too successful so far. They stretch her cheeks and massage her gums to help her gag reflex. They also help me come up with what formulas she can handle.

Nic - thanks for the encouragement. Meg is part of Early Intervention and they come to the house for biweekly physical and speech therapy. She's seen by a speech and occupational therapist and a nurse and nutritionist at the feeding clinic. I hope it will all help soon.

[Nic]

Nic - thanks for the encouragement. Meg is part of Early Intervention and they come to the house for biweekly physical and speech therapy. She's seen by a speech and occupational therapist and a nurse and nutritionist at the feeding clinic. I hope it will all help soon.

Hi, Lucas was part of Early Intervention too. Thank God those services can be provided. Lucas' gagging was not as severe as Megans so I am sure it is going to take some time. I hope it works as well for her as it has for him.

Nicole

[NoGluGirl]

Feeding therapy is just that - like physical therapy or speech therapy, just trying to get her to eat. She's been getting it once every now and then, but it's getting stepped up to once a week. Hope that's a good explanation!

Dear TCA,

The candida could have moved up into Megan's throat and esophagus. That can happen. All the research I have done on it is pretty scary. I really do not see why the doctor would want her to eat if she will not keep it down. That does not seem to serve much of a purpose. We'll keep our fingers crossed and hopefully they can do a stool test to find it. I know Doctor's Data does a parasitology 2 test, and it is $219. I cannot afford to do it. I have no insurance.

Sincerely,

NoGluGirl

[Judyin Philly]

Hi Tanya

haven't been on posting but watching for your posts.

So happy with the 8 oz in a week gain. I remember when we were praying a couple of months ago for a few oz's..

I had love this thread you sent but now in terms of Megans middle name, gives more meaning..doens't it?

Congrast on Jarod's new job. Agree, must be Gods' plan and know the other company employees and friends there will only want the very best for you and your family.

will be praying for some answers at the Gi apt next week.

love judy

This is a link to a little story about Hope that a dear friend sent me. It made me think of why Megan Hope is our baby girl's name. Just thought I would share it.

Open Original Shared Link

[TCA]

NoGluGirl, we started probiotics yesterday, so hopefully that will cover that base. She's only eating elemental formula and breastmilk at this point, despite my best efforts, so I don't think the diet is an issue. We're trying to get her to where everything doesn't come back up, so we're still trying foods. I'll mention this test to her GI next week.

Judy,

I'm not posting as much either now that I'm not pumping as much. Thanks for your kind words. How are You? I think of and pray for you often. So good to see a picture of you. I've got to get one of me out there. We are so blessed that she is gaining so well now. Thanks for caring so much! Hugs!