Tuesday, December 7, 2010

More about Zoya

Thanks to everyone who offered suggestions and encouragement about Zoya. The lesson to be learned is that sometimes it can be a blessing in disguise to admit your failures and ask for help. I was overwhelmed with comments and even private emails after my last post. I made some phone calls this morning and we have made a little bit of progress today. First of all we now have a prescription for Periactin, an appetite stimulant. Second, I am working with our insurance company to get a consultation with a dietician. (Meanwhile I have taken your suggestions to heart and am trying some new things at mealtimes and snacktimes). Third and most importantly, I am expecting a return phone call tomorrow from a nurse at the Craniofacial Center in Dallas. I had a lengthy conversation with her today about all of Zoya's issues and how every problem seems to be dependent on another. She was pretty confident Dr. Fearon could get her fixed up sooner rather than later. This was music to my ears! The Center works through a team approach, which means we would be able to see all kinds of specialists on the same day....a geneticist, a dietician, a gastroenterologist, an orthodontist, and a speech therapist. We are also suspicious that Zoya may have fetal alcohol syndrome. It would be nice to be able to diagnose this at the same time so that we can get her all the help she needs. The receptionist had said the first available appointment would be in about 2 1/2 months, but they felt they could squeeze us in sooner. Dallas is about 4-5 hours away but it would be well worth the drive if we could get some help soon!

I will never forget the first day we saw Zoya at the orphanage. She was getting her outdoor 'bath' in the kiddy pool, all the kids were naked. I remember how shocked I was to see every one of her ribs and her shoulder blades sticking out like a victim of the holocaust. My mother's heart went out with compassion to her, and I remember thinking how I couldn't wait to get her home and give her a real bath and real meals, and how quickly she would fatten up once I was her mother! Needless to say, I am disappointed. I am not disappointed in her, but I have just felt like a big failure in this area. All of my other kids love my cooking, and frequently want more, more. And this is good for a mother's heart. But constantly seeing Zoya turning nose up and pushing the food away, has been so hard for me. Especially after I have worked so hard to add the butter, the oil, the ranch dressing, the cream, or whatever, to increase calories for her. And then having to throw all my hard work in the trash. Ugh! Not to mention the fact that I JUST DON'T HAVE an hour every single meal to spoon feed her and play airplanes and praise her for every nibble that she takes. One night John very firmly required her to stay at the table long after everyone else had gone to bed, made her eat every bite on her plate. That night she ended up barfing it all up. I am here to say that is hard on the bonding between mother (and father) and child. So I am praying the Periactin will do the trick, OR that she will soon have a feeding tube......not just for Zoya's physical health but for my emotional health as well.

32 comments:

Anonymous said...

This is going to sound rude, but I really don't know how to say this gently... You mean you didn't know Zoya had FAS?! *I* can tell for crying out loud and all I've seen of her is pictures. She has such a "classic" look to her of a child with FAS. Unfortunate. (that her mother drank while pregnant.)

Anyhoo, that is not the issue.

I hope you guys can find a way to help her. Before you go crazy with worry. I can't imagine the frustration with the eating (or not eating) issues. Good luck! Wish I had a suggestion for you, but I don't :(

Take care,
Alison.

Anonymous said...

PS - Underweight or not, Zoya is ADORABLE!!!!
Alison

Leah said...

I know there are a lot of us out here who wish this was easier for you, and for Zoya. That there was something we could suggest that would be the magic trick to getting weight on her. I have heard nothing but fantastic things about the Dallas Craniofacial center from the Apert syndrome community, particularly about Dr. Fearon. I think you'll be in good hands there. I also know that if weight gain and lack of appetite is an issue, they are "pro tube". You cannot get the necessary surgeries done without the weight gain, and the longer she goes without the surgeries the longer it takes for her to make progress in all other areas.

As I mentioned to you in an earlier email, there are a number of children who are just plain born with no desire to eat. Just as there are some born with Prader Willi syndrome. Years ago those who didn't eat just died. There was nothing to do to help them. But now we have gtubes, and the fact the doctors you've seen so far haven't acknowledged that fact angers me.

Who knows why Zoya won't eat. It doesn't matter really what the reason is...stomach shrinkage from years of inadequate intake or just plain no desire...Not eating is not eating, and it's amazing really that she's still alive. But God got her to a mama and papa who will bear the cross for her, and get her the help she needs.

Personally, I can't wait for her to get a tube! Having been there/done that with my own daughter, I know just what a stress reliever that tube can be! Life can take on a whole new dimension when you're not constantly worried about every little calorie taken in an then burned!

For my daughter, when she was being tube fed, we always tubed her during regular meal times (if her stomach tolerated it, some kids tolerate full feeds like that) and required her to sit at the table with the rest of the family. She at least associated that feeling of being satisfied with positive family experiences!

Much love to all of you
~Leah~

ErinL said...

Oh Charissa I'm so glad you are getting help and are able to move forward. I know this has been hard for you. We love you and we are praying for you!

Anonymous said...

Wow...how wonderful to have access to the clinic in Dallas. I know getting the 'official' diagnosis of any and everything that is going on with her will help you get services down the road. Plus, having access to all those doctors in one place at one time is just plain awesome.

Hope they can get you in soon!

Jan

Julie said...

Feeding issues Suck... we still have them with Daisy....and I totally feel your pain. I hope you are now on the road to getting something done for sweet Zoya. Much love to you all!

Anonymous said...

We've been on this same journey for the past 2 years. It has been so difficult. Our daughter was 26 lbs at 4.5 years and after 2 years home is 32 lbs at 6.5 years.

She has so many issues I don't think it is possible to say what one thing caused her eating disorder.

She vomited about 3x a day. For example we would spend an hour getting her to eat a 130 calorie piece of lunch meat and then she would vomit it all back up.

It has taken a large toll on our family from the frustration of spending hours trying to get her to eat. And the dismay when she vomits. Last Easter she sat down at the table saw the amount of food waiting to be served and then vomited before she even took one bite.

It sounds like you are on the right track with the clinic. Do not leave out the endocronologist. Make a separte apppointment if you need to. If her blood test comes back as normal hormone level ask for the 5 hour in the hospital test. My daughter had two normal hormone level results from the regular blood test but the 5 hour test showed low growth hormone. Normal is 10+ and she is only 4.2. She will be starting growth hormone shots soon. Like one of the previous comments made growth hormone is not just about height..there are so many other bodily functions that are impacted if a child is failure to thrive.

I have 3 other children and we've thrown out a lot of rules for this child. Normally good parenting at meal time just does not apply. For example she gets to drink her dinner milk in the bathtub. She doesn't need this anymore but in the past she was allowed to eat her snack while watching TV. When the other kids were having a healthy snack of fruit she would get a brownie. She is allowed to spit out a food into her napkin if she decides she absolutely is not going to be able to swallow it (it is better than gagging and vomiting all over the table). She is allowed to say she does not want what I made for dinner and she will get her own personal sized pizza with extra butter on top. This goes against all my husband and my instincts as we are strict sit at your seat and eat what you are given parents..but we tried that route and it did not work with the failure to thrive child.

Kelly said...

Charissa,

I live in Tulsa ( am a friend of Trisha Taylor's) and my daughter was born with severe reflux and we have had eating issues for 15 long months! IT SUCKS! Plain and simple. However we have been greatly helped by many professionals here in TUlsa and other places and I would be glad to fill you in. AMY PULS at Therapy Works is a GREAT dietician. We had to pay out of pocket for her ( our insurance would not cover her) It was 80 dollars an hour..
We took our daughter to the STar Feeding Center in Denver 3 months ago with reknown feeding specialist Dr Kay Toomey and we have made big strides in the last two months. I would be more than happy to teach you what we learned and and show you physically what they taught us. I have a ton of handouts you could read. You are probably going to have to start over with Zoya like she is a baby and creative postive associations with food. LIke start with just playing in food. If you can get her to eat fruit and vegetable baby food purees you can add tons of oils and things like polycose or duocal to them.
I second a GI specialist. There is only one in Tulsa and it takes forever to get in. We went to one in Dallas and he was great! I would be happy to help you. I know how hard this is and my mental health has suffered so bad in the last year because of this. sending you big hugs! PLease feel free to contact me karyanatcoxdotnet

Anonymous said...

Wow, I'm glad you found a Dr that prescribed the Periactin for Zoya. Did they gave you a special protocol to follow?. I'm in a yahoo support group for RSS kids and the only RSS expert in USA recommends to follow a protocol for it, it consists basically on slowly introducing it because it can have unwanted secondary effects if introduced all at once. If you are interested let me know and I will e-mail it to you (beatrixbe@yahoo.com).

Another thing that you have to consider is that it takes time to build up in the system, 2-4 weeks, so it is not going to help overnight.

We live in the DFW area, so hopefully we can meet someday when you are here for Zoya's treatments.

On one of you previous posts you mentioned about Zoya little bladder and I'm going to recommend you a product that can save you hundreds of trips to public restrooms which I hate. We keep one in our car for our daughter, you can use it in your van. Here is the link http://www.onestepahead.com/catalog/product.jsp?productId=361755&parentCategoryId=85193&categoryId=85250

Beatriz

Angelique said...

I have had feeding issues with several of my children.

My oldest son (Vacter Association)had a cleft palate so he had a G-tube for the first 2-3 years of life. No actual feeding issues but he had a trach and was home-bound with a vent & Oxygen (only has 1 lung) and couldn't get enough calories.

We fought for our daughter that passed away (DiGeorge Syndrome)to get a G-tube, she was 9 lbs @ 10 months and was 7 lbs at birth. She passed away @ 14 months old & was only 13 lbs.

Our 3 1/2 year old daughter with Downs is only 19 lbs. We have tried EVERYTHING! She would eat for a day or 2 then proceed to throw-up constantly for a week or so (with-out really eating anything during this period), then eat for a day or 2 then throw up for a week, and so on and so on. Nutritionest, GI doctors, Tests, Eat Clinics, all the additives, thickners, you name we've tried it, short of a G-Tube for her. The GI doc. labeled her as Cyclic Vomiting. Finally in May I asked our pediatrician if we could possibly have something to clear up her sinuses, she has heart issues and I noticed she was always "nasally" sounding but didn't think she could have anything because of her heart. She was given Claritan and within a week she had stopped throwing up and was actually eating real food (had refused real food up until then, would only eat some baby food but mostly liqued nutrition). She hasn't had an episode of Cyclic Vomiting since. Still a picky eater, low weight, and has days of not wanting to eat anything (I know how you feel to make something special that you think they will eat only to throw it away--very discouraging) but we have went from 16 lbs. in May to 19 lbs.-not wonderful but at least not constantly going back-wards.

We have the opposite issues with our 1 year-old son with Downs. Bless his heart he wants to eat EVERYTHING, but is allergic to almost EVERYTHING-mainly milk (everything that is made with milk) & soy. If he has anything with either of these in them (even just the "proteins" of them, he screams for hours and hours (not fun). He can not even have just a "taste" of mashed pototoes. Heaven help you if you are eating an don't offer anything to him, so I try to always keep little "puffs" near just in case one of the older kids are snacking and he wants something.

With all that being said (I can get kinds wordy, sorry) I have a whole box of Benecalorie (a little 1 oz tub of additives thats like 350 caleries per little tub). Jade refuses to eat/drink anything that has it in it. You are more than welcome to them. They are fairly expensive but we were blessed that our insurance covered the cost of them (but the medical supply company won't take them back and took forever to stop sending them). If you want them let me know I will send them to you, plus it will make my husband happy to have one less box of medical "stuff" in our pantry, lol. If you want to look it up, goggle Nestle Benecalorie.

GOD BLess, Angelique

Angelique said...

I have had feeding issues with several of my children.

My oldest son (Vacter Association)had a cleft palate so he had a G-tube for the first 2-3 years of life. No actual feeding issues but he had a trach and was home-bound with a vent & Oxygen (only has 1 lung) and couldn't get enough calories.

We fought for our daughter that passed away (DiGeorge Syndrome)to get a G-tube, she was 9 lbs @ 10 months and was 7 lbs at birth. She passed away @ 14 months old & was only 13 lbs.

Our 3 1/2 year old daughter with Downs is only 19 lbs. We have tried EVERYTHING! She would eat for a day or 2 then proceed to throw-up constantly for a week or so (with-out really eating anything during this period), then eat for a day or 2 then throw up for a week, and so on and so on. Nutritionest, GI doctors, Tests, Eat Clinics, all the additives, thickners, you name we've tried it, short of a G-Tube for her. The GI doc. labeled her as Cyclic Vomiting. Finally in May I asked our pediatrician if we could possibly have something to clear up her sinuses, she has heart issues and I noticed she was always "nasally" sounding but didn't think she could have anything because of her heart. She was given Claritan and within a week she had stopped throwing up and was actually eating real food (had refused real food up until then, would only eat some baby food but mostly liqued nutrition). She hasn't had an episode of Cyclic Vomiting since. Still a picky eater, low weight, and has days of not wanting to eat anything (I know how you feel to make something special that you think they will eat only to throw it away--very discouraging) but we have went from 16 lbs. in May to 19 lbs.-not wonderful but at least not constantly going back-wards.

We have the opposite issues with our 1 year-old son with Downs. Bless his heart he wants to eat EVERYTHING, but is allergic to almost EVERYTHING-mainly milk (everything that is made with milk) & soy. If he has anything with either of these in them (even just the "proteins" of them, he screams for hours and hours (not fun). He can not even have just a "taste" of mashed pototoes. Heaven help you if you are eating an don't offer anything to him, so I try to always keep little "puffs" near just in case one of the older kids are snacking and he wants something.

With all that being said (I can get kinds wordy, sorry) I have a whole box of Benecalorie (a little 1 oz tub of additives thats like 350 caleries per little tub). Jade refuses to eat/drink anything that has it in it. You are more than welcome to them. They are fairly expensive but we were blessed that our insurance covered the cost of them (but the medical supply company won't take them back and took forever to stop sending them). If you want them let me know I will send them to you, plus it will make my husband happy to have one less box of medical "stuff" in our pantry, lol. If you want to look it up, goggle Nestle Benecalorie.

GOD BLess, Angelique

Angelique said...

I have had feeding issues with several of my children.

My oldest son (Vacter Association)had a cleft palate so he had a G-tube for the first 2-3 years of life. No actual feeding issues but he had a trach and was home-bound with a vent & Oxygen (only has 1 lung) and couldn't get enough calories.

We fought for our daughter that passed away (DiGeorge Syndrome)to get a G-tube, she was 9 lbs @ 10 months and was 7 lbs at birth. She passed away @ 14 months old & was only 13 lbs.

Our 3 1/2 year old daughter with Downs is only 19 lbs. We have tried EVERYTHING! She would eat for a day or 2 then proceed to throw-up constantly for a week or so (with-out really eating anything during this period), then eat for a day or 2 then throw up for a week, and so on and so on. Nutritionest, GI doctors, Tests, Eat Clinics, all the additives, thickners, you name we've tried it, short of a G-Tube for her. The GI doc. labeled her as Cyclic Vomiting. Finally in May I asked our pediatrician if we could possibly have something to clear up her sinuses, she has heart issues and I noticed she was always "nasally" sounding but didn't think she could have anything because of her heart. She was given Claritan and within a week she had stopped throwing up and was actually eating real food (had refused real food up until then, would only eat some baby food but mostly liqued nutrition). She hasn't had an episode of Cyclic Vomiting since. Still a picky eater, low weight, and has days of not wanting to eat anything (I know how you feel to make something special that you think they will eat only to throw it away--very discouraging) but we have went from 16 lbs. in May to 19 lbs.-not wonderful but at least not constantly going back-wards.

We have the opposite issues with our 1 year-old son with Downs. Bless his heart he wants to eat EVERYTHING, but is allergic to almost EVERYTHING-mainly milk (everything that is made with milk) & soy. If he has anything with either of these in them (even just the "proteins" of them, he screams for hours and hours (not fun). He can not even have just a "taste" of mashed pototoes. Heaven help you if you are eating an don't offer anything to him, so I try to always keep little "puffs" near just in case one of the older kids are snacking and he wants something.

With all that being said (I can get kinds wordy, sorry) I have a whole box of Benecalorie (a little 1 oz tub of additives thats like 350 caleries per little tub). Jade refuses to eat/drink anything that has it in it. You are more than welcome to them. They are fairly expensive but we were blessed that our insurance covered the cost of them (but the medical supply company won't take them back and took forever to stop sending them). If you want them let me know I will send them to you, plus it will make my husband happy to have one less box of medical "stuff" in our pantry, lol. If you want to look it up, goggle Nestle Benecalorie.

GOD BLess, Angelique

Angelique said...

I have had feeding issues with several of my children.

My oldest son (Vacter Association)had a cleft palate so he had a G-tube for the first 2-3 years of life. No actual feeding issues but he had a trach and was home-bound with a vent & Oxygen (only has 1 lung) and couldn't get enough calories.

We fought for our daughter that passed away (DiGeorge Syndrome)to get a G-tube, she was 9 lbs @ 10 months and was 7 lbs at birth. She passed away @ 14 months old & was only 13 lbs.

Our 3 1/2 year old daughter with Downs is only 19 lbs. We have tried EVERYTHING! She would eat for a day or 2 then proceed to throw-up constantly for a week or so (with-out really eating anything during this period), then eat for a day or 2 then throw up for a week, and so on and so on. Nutritionest, GI doctors, Tests, Eat Clinics, all the additives, thickners, you name we've tried it, short of a G-Tube for her. The GI doc. labeled her as Cyclic Vomiting. Finally in May I asked our pediatrician if we could possibly have something to clear up her sinuses, she has heart issues and I noticed she was always "nasally" sounding but didn't think she could have anything because of her heart. She was given Claritan and within a week she had stopped throwing up and was actually eating real food (had refused real food up until then, would only eat some baby food but mostly liqued nutrition). She hasn't had an episode of Cyclic Vomiting since. Still a picky eater, low weight, and has days of not wanting to eat anything (I know how you feel to make something special that you think they will eat only to throw it away--very discouraging) but we have went from 16 lbs. in May to 19 lbs.-not wonderful but at least not constantly going back-wards.

We have the opposite issues with our 1 year-old son with Downs. Bless his heart he wants to eat EVERYTHING, but is allergic to almost EVERYTHING-mainly milk (everything that is made with milk) & soy. If he has anything with either of these in them (even just the "proteins" of them, he screams for hours and hours (not fun). He can not even have just a "taste" of mashed pototoes. Heaven help you if you are eating an don't offer anything to him, so I try to always keep little "puffs" near just in case one of the older kids are snacking and he wants something.

With all that being said (I can get kinds wordy, sorry) I have a whole box of Benecal (a little 1 oz tub of additives thats like 350 caleries per little tub). Jade refuses to eat/drink anything that has it in it. You are more than welcome to them. They are fairly expensive but we were blessed that our insurance covered the cost of them (but the medical supply company won't take them back and took forever to stop sending them). If you want them let me know I will send them to you, plus it will make my husband happy to have one less box of medical "stuff" in our pantry, lol. If you want to research it, just google "nestle benecalorie".

GOD BLess, Angelique

Angelique said...

I have had feeding issues with several of my children.

My oldest son (Vacter Association)had a cleft palate so he had a G-tube for the first 2-3 years of life. No actual feeding issues but he had a trach and was home-bound with a vent & Oxygen (only has 1 lung) and couldn't get enough calories.

We fought for our daughter that passed away (DiGeorge Syndrome)to get a G-tube, she was 9 lbs @ 10 months and was 7 lbs at birth. She passed away @ 14 months old & was only 13 lbs.

Our 3 1/2 year old daughter with Downs is only 19 lbs. We have tried EVERYTHING! She would eat for a day or 2 then proceed to throw-up constantly for a week or so (with-out really eating anything during this period), then eat for a day or 2 then throw up for a week, and so on and so on. Nutritionest, GI doctors, Tests, Eat Clinics, all the additives, thickners, you name we've tried it, short of a G-Tube for her. The GI doc. labeled her as Cyclic Vomiting. Finally in May I asked our pediatrician if we could possibly have something to clear up her sinuses, she has heart issues and I noticed she was always "nasally" sounding but didn't think she could have anything because of her heart. She was given Claritan and within a week she had stopped throwing up and was actually eating real food (had refused real food up until then, would only eat some baby food but mostly liqued nutrition). She hasn't had an episode of Cyclic Vomiting since. Still a picky eater, low weight, and has days of not wanting to eat anything (I know how you feel to make something special that you think they will eat only to throw it away--very discouraging) but we have went from 16 lbs. in May to 19 lbs.-not wonderful but at least not constantly going back-wards.

We have the opposite issues with our 1 year-old son with Downs. Bless his heart he wants to eat EVERYTHING, but is allergic to almost EVERYTHING-mainly milk (everything that is made with milk) & soy. If he has anything with either of these in them (even just the "proteins" of them, he screams for hours and hours (not fun). He can not even have just a "taste" of mashed pototoes. Heaven help you if you are eating an don't offer anything to him, so I try to always keep little "puffs" near just in case one of the older kids are snacking and he wants something.

With all that being said (I can get kinds wordy, sorry) I have a whole box of Benecal (a little 1 oz tub of additives thats like 350 caleries per little tub). Jade refuses to eat/drink anything that has it in it. You are more than welcome to them. They are fairly expensive but we were blessed that our insurance covered the cost of them (but the medical supply company won't take them back and took forever to stop sending them). If you want them let me know I will send them to you, plus it will make my husband happy to have one less box of medical "stuff" in our pantry, lol. If you want to research it, just google "nestle benecalorie".

GOD BLess, Angelique

Angelique said...

I have had feeding issues with several of my children.

My oldest son (Vacter Association)had a cleft palate so he had a G-tube for the first 2-3 years of life. No actual feeding issues but he had a trach and was home-bound with a vent & Oxygen (only has 1 lung) and couldn't get enough calories.

We fought for our daughter that passed away (DiGeorge Syndrome)to get a G-tube, she was 9 lbs @ 10 months and was 7 lbs at birth. She passed away @ 14 months old & was only 13 lbs.

Our 3 1/2 year old daughter with Downs is only 19 lbs. We have tried EVERYTHING! She would eat for a day or 2 then proceed to throw-up constantly for a week or so (with-out really eating anything during this period), then eat for a day or 2 then throw up for a week, and so on and so on. Nutritionest, GI doctors, Tests, Eat Clinics, all the additives, thickners, you name we've tried it, short of a G-Tube for her. The GI doc. labeled her as Cyclic Vomiting. Finally in May I asked our pediatrician if we could possibly have something to clear up her sinuses, she has heart issues and I noticed she was always "nasally" sounding but didn't think she could have anything because of her heart. She was given Claritan and within a week she had stopped throwing up and was actually eating real food (had refused real food up until then, would only eat some baby food but mostly liqued nutrition). She hasn't had an episode of Cyclic Vomiting since. Still a picky eater, low weight, and has days of not wanting to eat anything (I know how you feel to make something special that you think they will eat only to throw it away--very discouraging) but we have went from 16 lbs. in May to 19 lbs.-not wonderful but at least not constantly going back-wards.

We have the opposite issues with our 1 year-old son with Downs. Bless his heart he wants to eat EVERYTHING, but is allergic to almost EVERYTHING-mainly milk (everything that is made with milk) & soy. If he has anything with either of these in them (even just the "proteins" of them, he screams for hours and hours (not fun). He can not even have just a "taste" of mashed pototoes. Heaven help you if you are eating an don't offer anything to him, so I try to always keep little "puffs" near just in case one of the older kids are snacking and he wants something.

With all that being said (I can get kinds wordy, sorry) I have a whole box of Benecal (a little 1 oz tub of additives thats like 350 caleries per little tub). Jade refuses to eat/drink anything that has it in it. You are more than welcome to them. They are fairly expensive but we were blessed that our insurance covered the cost of them (but the medical supply company won't take them back and took forever to stop sending them). If you want them let me know I will send them to you, plus it will make my husband happy to have one less box of medical "stuff" in our pantry, lol. If you want to research it, just google "nestle benecalorie".

GOD BLess, Angelique

Angelique said...

I have had feeding issues with several of my children.

My oldest son (Vacter Association)had a cleft palate so he had a G-tube for the first 2-3 years of life. No actual feeding issues but he had a trach and was home-bound with a vent & Oxygen (only has 1 lung) and couldn't get enough calories.

We fought for our daughter that passed away (DiGeorge Syndrome)to get a G-tube, she was 9 lbs @ 10 months and was 7 lbs at birth. She passed away @ 14 months old & was only 13 lbs.

Our 3 1/2 year old daughter with Downs is only 19 lbs. We have tried EVERYTHING! She would eat for a day or 2 then proceed to throw-up constantly for a week or so (with-out really eating anything during this period), then eat for a day or 2 then throw up for a week, and so on and so on. Nutritionest, GI doctors, Tests, Eat Clinics, all the additives, thickners, you name we've tried it, short of a G-Tube for her. The GI doc. labeled her as Cyclic Vomiting. Finally in May I asked our pediatrician if we could possibly have something to clear up her sinuses, she has heart issues and I noticed she was always "nasally" sounding but didn't think she could have anything because of her heart. She was given Claritan and within a week she had stopped throwing up and was actually eating real food (had refused real food up until then, would only eat some baby food but mostly liqued nutrition). She hasn't had an episode of Cyclic Vomiting since. Still a picky eater, low weight, and has days of not wanting to eat anything (I know how you feel to make something special that you think they will eat only to throw it away--very discouraging) but we have went from 16 lbs. in May to 19 lbs.-not wonderful but at least not constantly going back-wards.

We have the opposite issues with our 1 year-old son with Downs. Bless his heart he wants to eat EVERYTHING, but is allergic to almost EVERYTHING-mainly milk (everything that is made with milk) & soy. If he has anything with either of these in them (even just the "proteins" of them, he screams for hours and hours (not fun). He can not even have just a "taste" of mashed pototoes. Heaven help you if you are eating an don't offer anything to him, so I try to always keep little "puffs" near just in case one of the older kids are snacking and he wants something.

With all that being said (I can get kinds wordy, sorry) I have a whole box of Benecal (a little 1 oz tub of additives thats like 350 caleries per little tub). Jade refuses to eat/drink anything that has it in it. You are more than welcome to them. They are fairly expensive but we were blessed that our insurance covered the cost of them (but the medical supply company won't take them back and took forever to stop sending them). If you want them let me know I will send them to you, plus it will make my husband happy to have one less box of medical "stuff" in our pantry, lol. If you want to research it, just google "nestle benecalorie".

GOD BLess, Angelique

Angelique said...

I have had feeding issues with several of my children.

My oldest son (Vacter Association)had a cleft palate so he had a G-tube for the first 2-3 years of life. No actual feeding issues but he had a trach and was home-bound with a vent & Oxygen (only has 1 lung) and couldn't get enough calories.

We fought for our daughter that passed away (DiGeorge Syndrome)to get a G-tube, she was 9 lbs @ 10 months and was 7 lbs at birth. She passed away @ 14 months old & was only 13 lbs.

Our 3 1/2 year old daughter with Downs is only 19 lbs. We have tried EVERYTHING! She would eat for a day or 2 then proceed to throw-up constantly for a week or so (with-out really eating anything during this period), then eat for a day or 2 then throw up for a week, and so on and so on. Nutritionest, GI doctors, Tests, Eat Clinics, all the additives, thickners, you name we've tried it, short of a G-Tube for her. The GI doc. labeled her as Cyclic Vomiting. Finally in May I asked our pediatrician if we could possibly have something to clear up her sinuses, she has heart issues and I noticed she was always "nasally" sounding but didn't think she could have anything because of her heart. She was given Claritan and within a week she had stopped throwing up and was actually eating real food (had refused real food up until then, would only eat some baby food but mostly liqued nutrition). She hasn't had an episode of Cyclic Vomiting since. Still a picky eater, low weight, and has days of not wanting to eat anything (I know how you feel to make something special that you think they will eat only to throw it away--very discouraging) but we have went from 16 lbs. in May to 19 lbs.-not wonderful but at least not constantly going back-wards.

We have the opposite issues with our 1 year-old son with Downs. Bless his heart he wants to eat EVERYTHING, but is allergic to almost EVERYTHING-mainly milk (everything that is made with milk) & soy. If he has anything with either of these in them (even just the "proteins" of them, he screams for hours and hours (not fun). He can not even have just a "taste" of mashed pototoes. Heaven help you if you are eating an don't offer anything to him, so I try to always keep little "puffs" near just in case one of the older kids are snacking and he wants something.

With all that being said (I can get kinds wordy, sorry) I have a whole box of Benecal (a little 1 oz tub of additives thats like 350 caleries per little tub). Jade refuses to eat/drink anything that has it in it. You are more than welcome to them. They are fairly expensive but we were blessed that our insurance covered the cost of them (but the medical supply company won't take them back and took forever to stop sending them). If you want them let me know I will send them to you, plus it will make my husband happy to have one less box of medical "stuff" in our pantry, lol. If you want to research it, just google "nestle benecalorie".

GOD BLess, Angelique

Angelique said...

I have had feeding issues with several of my children.

My oldest son (Vacter Association)had a cleft palate so he had a G-tube for the first 2-3 years of life. No actual feeding issues but he had a trach and was home-bound with a vent & Oxygen (only has 1 lung) and couldn't get enough calories.

We fought for our daughter that passed away (DiGeorge Syndrome)to get a G-tube, she was 9 lbs @ 10 months and was 7 lbs at birth. She passed away @ 14 months old & was only 13 lbs.

Our 3 1/2 year old daughter with Downs is only 19 lbs. We have tried EVERYTHING! She would eat for a day or 2 then proceed to throw-up constantly for a week or so (with-out really eating anything during this period), then eat for a day or 2 then throw up for a week, and so on and so on. Nutritionest, GI doctors, Tests, Eat Clinics, all the additives, thickners, you name we've tried it, short of a G-Tube for her. The GI doc. labeled her as Cyclic Vomiting. Finally in May I asked our pediatrician if we could possibly have something to clear up her sinuses, she has heart issues and I noticed she was always "nasally" sounding but didn't think she could have anything because of her heart. She was given Claritan and within a week she had stopped throwing up and was actually eating real food (had refused real food up until then, would only eat some baby food but mostly liqued nutrition). She hasn't had an episode of Cyclic Vomiting since. Still a picky eater, low weight, and has days of not wanting to eat anything (I know how you feel to make something special that you think they will eat only to throw it away--very discouraging) but we have went from 16 lbs. in May to 19 lbs.-not wonderful but at least not constantly going back-wards.

We have the opposite issues with our 1 year-old son with Downs. Bless his heart he wants to eat EVERYTHING, but is allergic to almost EVERYTHING-mainly milk (everything that is made with milk) & soy. If he has anything with either of these in them (even just the "proteins" of them, he screams for hours and hours (not fun). He can not even have just a "taste" of mashed pototoes. Heaven help you if you are eating an don't offer anything to him, so I try to always keep little "puffs" near just in case one of the older kids are snacking and he wants something.

With all that being said (I can get kinds wordy, sorry) I have a whole box of Benecal (a little 1 oz tub of additives thats like 350 caleries per little tub). Jade refuses to eat/drink anything that has it in it. You are more than welcome to them. They are fairly expensive but we were blessed that our insurance covered the cost of them (but the medical supply company won't take them back and took forever to stop sending them). If you want them let me know I will send them to you, plus it will make my husband happy to have one less box of medical "stuff" in our pantry, lol. If you want to research it, just google "nestle benecalorie".

GOD BLess, Angelique

Angelique said...

I have had feeding issues with several of my children.

My oldest son (Vacter Association)had a cleft palate so he had a G-tube for the first 2-3 years of life. No actual feeding issues but he had a trach and was home-bound with a vent & Oxygen (only has 1 lung) and couldn't get enough calories.

We fought for our daughter that passed away (DiGeorge Syndrome)to get a G-tube, she was 9 lbs @ 10 months and was 7 lbs at birth. She passed away @ 14 months old & was only 13 lbs.

Our 3 1/2 year old daughter with Downs is only 19 lbs. We have tried EVERYTHING! She would eat for a day or 2 then proceed to throw-up constantly for a week or so (with-out really eating anything during this period), then eat for a day or 2 then throw up for a week, and so on and so on. Nutritionest, GI doctors, Tests, Eat Clinics, all the additives, thickners, you name we've tried it, short of a G-Tube for her. The GI doc. labeled her as Cyclic Vomiting. Finally in May I asked our pediatrician if we could possibly have something to clear up her sinuses, she has heart issues and I noticed she was always "nasally" sounding but didn't think she could have anything because of her heart. She was given Claritan and within a week she had stopped throwing up and was actually eating real food (had refused real food up until then, would only eat some baby food but mostly liqued nutrition). She hasn't had an episode of Cyclic Vomiting since. Still a picky eater, low weight, and has days of not wanting to eat anything (I know how you feel to make something special that you think they will eat only to throw it away--very discouraging) but we have went from 16 lbs. in May to 19 lbs.-not wonderful but at least not constantly going back-wards.

We have the opposite issues with our 1 year-old son with Downs. Bless his heart he wants to eat EVERYTHING, but is allergic to almost EVERYTHING-mainly milk (everything that is made with milk) & soy. If he has anything with either of these in them (even just the "proteins" of them, he screams for hours and hours (not fun). He can not even have just a "taste" of mashed pototoes. Heaven help you if you are eating an don't offer anything to him, so I try to always keep little "puffs" near just in case one of the older kids are snacking and he wants something.

With all that being said (I can get kinds wordy, sorry) I have a whole box of Benecal (a little 1 oz tub of additives thats like 350 caleries per little tub). Jade refuses to eat/drink anything that has it in it. You are more than welcome to them. They are fairly expensive but we were blessed that our insurance covered the cost of them (but the medical supply company won't take them back and took forever to stop sending them). If you want them let me know I will send them to you, plus it will make my husband happy to have one less box of medical "stuff" in our pantry, lol. If you want to research it, just google "nestle benecalorie".

GOD BLess, Angelique

MoonDog said...

yep she and andre are two peas in a pod. I made andre take ONE BITE which was less than a teaspoon full, more like a tiny taste, of squash and he promptly threw up. come ON! ONE BITE!???? I know how it hurts when they refuse the food you put out for them. Andre refuses my food most the time. he is very loving and sweet and adores his Mama and I dont fear for his attachment at all, he chastises the other kids if they are not good to HIS mama. but he just wont eat. he doesnt like anything. now he has a virus and is telling me he is throwing upbecause he ate salad. so I suppose that will be one more thing he wont eat after this. sigh. I feel your pain. hugs.

A. Gillispie said...

Wow Charissa! It's so clear that little Zoya has touched a lot of hearts! I'm so glad you feel like you have more tools in the tool chest now. Trying to figure out what was going on with my now 9 year old son when he couldn't eat was one of the biggest challenges of my life. Eventually we were led to Dr. Phillip Putnam at Cincinnati Children's Hospital with a diagnosis of Autoimmune Enteropathy. When you're fighting for the life of your baby a 12 hour drive is nothing! ;-)

There are literally hundreds of things that could be going on with Zoya. With our son, the g-tube wasn't the fix we wanted it to be because he still vomited up anything more than a tiny amount of food. His little intestines were so diseased that his stomach didn't empty properly, and the villi in the intestines couldn't do their job of absorbing fat and nutrients into the rest of his body. When we were able to get his intestings in better shape, the delayed gastric emptying become less of a problem.

I mentioned before that my daughter Kendi's issues with eating also revolve around delayed gastric emptying. Poor kiddo! I wouldn't like anybody to tell me to eat more when I'm about to throw up because my stomach is still full from a few days ago!

Continued prayers for your mommy heart, and for an answer to Zoya's feeding issues.

Anita

Anonymous said...

Hey, Dear Charissa
Don't ever feel like you aren't doing enough or bonding with Zoya. Remember Ava when you brought her home? There were so many issues and she was so tiny for her age and couldn't even hold her head up. Look at her now. God gave you and John the teams to help Ava and you'll get the same help for Zoya.
Love you all,
Aunt Sharon

Anonymous said...

One more thing, if they OK the g-tube it would be a good idea to check her for reflux and DGE. If needed she can have a Nissen and/or piroloplasty all in the same surgery.

Beatriz

allentablefor5 said...

Charissa I'm praying for your sweet family and especially Zoya. You are an inspiration as a mother.

csmith said...

I wanted to comment on Alison's FAS comment, and don't get offended Alison I know you didn't mean anything negative by it. You can't always tell if a child has FAS by appearance, many conditions that cause clefts also cause signs similiar to FAS and FAS can also cause clefts, there's really no way to tell by appearance. I actually have a pretty funny story of when I took my daughter to a new ENT. She has Pierre-Robin and a cleft palate. He kept looking over her chart and asking me leading questions about if MY pregnancy was normal and if MY delivery was normal. It took me the entire visit to realize that he thought she had FAS and was trying to figure out if she was adopted or if I was a drunk. For the record I don't drink AT ALL, not even socially.

loridave said...

Our son had eating issues at a young age, too. He is FASD. We used Periactin, which helped for a short while, and we saw lots of specialists. His eating seemed to improve from year to year, rather than from month to month. It was sooooo hard for a few years...I feel your pain, and realize that you have even more issues with the cleft palate. Now our son is almost 9, and eating "normally".

You've gotten lots of good advice, and are being proactive. You are an awesome, inspiring mom!

With prayers,
Lori

kdliberty said...

I really think a trip to a geneticist would do her some good. Her body shape is common in several genetic disorders including Marfan's Syndrome. My understanding is some people with Marfan's just can't seem to gain weight. Is Zoya real flexible? It is hallmark of Marfan's Syndrome...

Justine said...

Oh, sweetie! I'm so sorry you are going through this, but happy you have some good advice. My heart hurts for you and little Zoya. You will get this figured out!

Anonymous said...

Zoya looks fine to me. I don't see fetal alcohol or any other syndromes. All I see is a cute girl that has a cleft lip and obvious feeding issues. As a young child, I was very skinny and a very picky eater. I remember being told by doctors that I had to eat more. If I would have had a cleft lip and palate- I would have been just like Zoya. If she does have other issues I hope they are discovered sooner rather than later so she san start gaining weight.

Friends and Family said...

I came across a online group called P.O.P.S.I.C.L.E.
It is a group for children with every type of eating issues you can find! Here is the link:

http://www.bigtent.com/group/forum?md=MzkwMDg5MTc=

Praying, Praying for Wisdom with this new group in Dallas! I just love Zoya! Since the first time I saw her picture, I just feel such a strong connection with her.

Lots of Love to ALL of the Urbans! Jo

Charissa said...

Thanks everyone for all the advice and great suggestions!! My computer time is so limited these days, so I haven't been able to respond individually, but I am taking notes and making phone calls, and I feel we are slowly but surely coming up with a good plan. Thanks!

The Ritzmanns said...

Hi Charissa,

I am finally catching up on your blog. We have also been concerned about Lleyton having FAS since the moment we met him in Russia. Those concerns were recently confirmed after a visit to a geneticist at the local Childrens Hospital. We also have a battle on our hands when it comes to meal times with him.

As difficult it was to hear that he had it, at least now we know what we are dealing with and will do everything we can to get him the help that we can.

From afar, I think you are doing a fantastic job with all of your kids. Keep up the good work.

Matt