Diaper Swappers

wordmama · 11-15-2010, 11:02 AM

I thought for those of you who are following our story, it might be easier to put all of our updates in the main post (from most recent right back to the original post). I've dated all our past entries that are scattered through the thread for easy reading.

Thank you again for each of you who have reached out with hugs, prayers, and support.

March 8 - I wanted to update you mamas after our multiple appointments. The doctors are confounded. The power of prayer is miraculous. Fliss was starting to show signs of improvement so we asked our pastor to put her in his prayers to continue to thrive. Within three weeks, she grew 2" and gained 2.5lbs! That's more than she grew in the full 12months prior!

Her doctor now thinks she may have had a leaky gut. Having her on an allergen-free diet allowed her system to heal and begin to function normally. But even she was dumbfounded with how FAST she started growing. She was unimpressed with my diagnosis of a miracle.

And so, my little angel continues to grow. She now has solid poops, eats a portion that is appropriate for her size and can wear mostly 9-12 month clothes (she's 18 months now). I thank each and every one of you for keeping her in your prayers while we went through our testing. I have no doubt that you helped to heal our little girl.

January 28 - Another great news day: we just heard back from the hospital and her DNA has been cleared for Cystic Fibrosis!!!! Woohoo! Had to share with you wonderful mamas. We're now going to see an Endocrinologist and metabolic clinic to see if they can figure out my tiny princess!

January 26 - We don't have any official CF test results back yet, but I do have some great news: Fliss has started signing and talking again! It's like a little light switch went off and now she's parroting, trying new words, and she's signing all her words and then some! She's also grown in height a bit - she's now grown out of her 6 month clothes (FINALLY!!). She'll be 16 months in a few days, so I'm hoping that perhaps this is the start of a positive trend!

January 5 - GREAT NEWS - Fliss' test came back negative today. It was under 10. How it went from 37 to 10is a mystery. The doctor suspects that one of the tests was faulty. So she has gone ahead with the DNA testing and has also sent a letter to our ped to refer us to an Endocrinologist and the metabolic clinic. Back to square one on the diagnosis journey, but at least we (most likely) crossed a scary condition off the possibility list.

December 31: We finally have our CF appointment. We will head to London on Wed, January 5th for another sweat test and a DNA test. Hopefully we'll have an answer.

December 17 update: Thanks everyone. Apparently they'll be testing Fliss for up to 300 mutations of the CF gene with the DNA test. But it won't be done until after the holidays now (and hopefully closer to home). If that proves positive, they'll also test my son.

December 15 update: So the news today was neither good nor bad. Fliss' Cystic Fibrosis test came back inconclusive. Results between 1 and 35 are negative, over 60 are positive and in between require further testing. Fliss' results came back in the middle. We go to London hospital next week to repeat the sweat chloride test and also to do a DNA test.

December 14 update: Felicity had her CF test last Wednesday and we will learn the results tomorrow afternoon. We will also have all her outstanding fluid test results back by that time. I'll be sure to update you all when I get back from the pediatrician.

December 3 update: No real news this week. She had a touch of the flu which hasn't helped her growth/weight gain, but otherwise, things are holding. We should have some more lab results by about December 15. I'll be sure to update everyone then. We're hoping to get into our homeopath in the next week to try some alternate therapy.

November 29 update: They have done a few UAs, with no abnormal results. As for allergies, she's been dairy, wheat, gluten, and soy-free for about five months now. Our naturopath identified dairy, soy and wheat as sensitivities. We took her to an allergist last week and she has no true allergies. It's suspected the above are just intolerances. Her diet is primarily fruit, vegetables, meat, quinoa, rice, and potatoes. She drinks hemp milk and is still nursing about 3-4 times a day. She does have greasy stool sometimes, which is why we're testing for CF. The results of her last SS are still outstanding.

November 28 update: We have some GREAT news: her second blood screen came back with normal calcium levels! The ultrasound also came back normal. So I'm really hoping that this means cancer is no longer an option.

She did lose a few ounces between appointments (2 weeks between them), which isn't good. We've chalked it up to her teething and not having her enormous appetite lately.

The search continues...

November 24 update: She is now almost 14 months and is 17lbs 1oz (she was 8lbs 6ozs at birth and 16lbs at 4 months). Glad to hear you found the culprit with your kiddos.

In talking with the pediatrician today, Calcium can be a marker for kidney cancer (as well as some other cancers). They are going to do an ultrasound of her kidneys to look for tumours given her history of UTIs. Oh and the CF testing that we were told was tomorrow was actually this afternoon, so we missed it (the doctor's receptionist messed up the date). The new test will be December 8 (though we're now leaning away from CF).

November 23 update: We had our pediatric allergist appointment today and managed to rule out food allergies as the culprit. The doctor was amazing and seemed quite taken with Felicity. He suspects that it could be her kidneys that are causing the problem.

Her blood work was returned with elevated levels of calcium. Her doctor has ordered another blood draw to further evaluate this. We're still waiting on some of the blood results and the stool sample testing. We're going to try to introduce lactose-free milk in an attempt to introduce more fat and calories into her diet.

We have our CF testing on Thursday and I'll update again after we get the results. Thanks again for keeping us in your thoughts and prayers.

November 17 update: She has not been officially tested for celiac disease, but she has been on a gluten free diet for about three months now (she only ate wheat for about a month before we figured out it was not agreeing with her). In order to get an accurate celiac disease confirmation, we'd have to reintroduce gluten to her diet (which we're not prepared to do since we know she can't tolerate it). Her doc is confident that she is gluten intolerant.

She has not had any live vaccines, but has been vaccinated on a delayed schedule (with no flu shots). I've never heard of a vaccine stopping growth though...perhaps something to research.

Today we had to go to the hospital for a catheter draw (no luck with the bags and she seems to be quite lethargic lately so her doc is even more concerned). Because of her energy levels, she also did a full blood screen. They must have drawn seven vials from that tiny little body. Poor little soul. It's so hard to watch, but I know every step brings us closer to a possible answer and solution.

November 16 update: While I'm so glad that I'm not alone in this journey, I'm so sorry to hear so many of you have endured similar situations and know what this is like. We're currently working with a level 2 hospital near us, so not quite Sick Kids yet. My work is being so wonderful and have told me that I can take a leave of absence if I need to so that I can focus 100% of my time on Felicity without losing my benefits/insurance!

Right now we're having a frustrating battle trying to collect a urine sample from her. Those little bags just don't work! We've been through six and haven't caught a drop of pee. Every time we've tried to do a urine sample, she's had to be catheterized, so we're trying to avoid this. Wish us luck - she's wearing the last bag now.

..............................
Original message: I've never posted in this section before, but I'm really needing the support of my DS mamas right now. Something is wrong with my baby girl. Despite eating like a horse, she isn't growing. She's fallen from the 55th percentile for weight and 70th percentile for length to the 10th percentile for height and is off the charts for weight. She has gained only 1.5lbs in nine months.

It seems that whatever was affecting her growth is now affecting her brain. Although Fliss was signing well and had six words when she first began to talk, she's now regressed and does neither. She will babble, but no longer uses any words or signs.

We've ruled out the simple stuff: tested her thyroid, took her off dairy, soy and gluten, tested for chronic UTI, her blood for notable infections, and her stool for parasites or infection.

Her pediatrician and I are now really worried. The latest rounds of tests are for far more scary diagnoses: Cystic Fibrosis, Cancer, chronic heart or kidney conditions.

She is such a perfect little girl. Her name fits her perfectly as it means happiness. She is full of love for everyone around her. Curious, affectionate, funny, adventurous, fearless, joyful - she's the baby that everyone falls in love with instantlyShe thinks her brother hung the moon. And he loves her so much that he tells me that he wants five more little sisters just like her.

I'm just so afraid of losing her. I sat at work today and sobbed. The thought of what lies before us just overwhelms me sometimes.

I'm asking for your support and love and prayers as we try to find a diagnosis. While I know your first reaction may be to tell me of other babies who were small but are fine, please refrain. This probably isn't going to be the case with Fliss (her story is more complicated and involved than what I can outline here) and though I know it's meant to give me hope, it only makes me feel worse. If you know of a similar situation where a strange diagnosis was made, that might help. Like in those Mystery Diagnosis shows, you never know who might have the answer you need.

Thanks in advance mamas.

.

Jallia · 11-15-2010, 11:21 AM

*hugs* to you mama. I will keep you in my thoughts and prayers. I can just imagine how hard this must be for you.

Sweet_Fantasy_Fox · 11-15-2010, 11:26 AM

Sending prayers, I hope the dr's are able to figure out what's going on and get her all better.

lovebeingamommy123 · 11-15-2010, 11:27 AM

so unbelievably sorry. i will be praying for her and for your family.

L&A'smommy · 11-15-2010, 11:27 AM

Big hugs. If you want to hear about my MD type big girl PM me I would love to share my experiences of learning to be the best advocate for my Sick DD.

We' ll be praying for your LO tonight.

dublinup · 11-15-2010, 11:30 AM

Oh mama I am thinking about you. There are no words to take away the worry when you know something is wrong with your child. I pray you find out very quickly what is wrong so you can begin to get her well again.

Joyful Tie Dyes · 11-15-2010, 11:32 AM

(((HUGS))) I hope you have some answers soon.

hminor11 · 11-15-2010, 11:40 AM

I will be sure to keep your family in my prayers as well as the doctors that are trying to figure out what is going on with your precious little girl.

wordmama · 11-15-2010, 11:49 AM

Oh gosh, I knew I shouldn't have checked this at work. Y'all have me in tears at my desk with your kindness. Thank you, thank you, thank you to each of you who have reached out. I count my blessings with all the wonderful women (and men) here on DS who support each other daily. I will keep you updated as we get results from her testing back.

Beetroot · 11-15-2010, 01:43 PM

I'll pray for your little baby girl and hugs to you mama

Let it be some easily rectified problem

11-15-2010, 11:02 AM	#1
wordmama Registered Users Join Date: Dec 2008 Location: Ontario, Canada Posts: 6,763 Ratings: 28 Feedback: 100% My Mood:	Baby girl needs your prayers and healing to start growing (Last updated Dec 23) I thought for those of you who are following our story, it might be easier to put all of our updates in the main post (from most recent right back to the original post). I've dated all our past entries that are scattered through the thread for easy reading. Thank you again for each of you who have reached out with hugs, prayers, and support. March 8 - I wanted to update you mamas after our multiple appointments. The doctors are confounded. The power of prayer is miraculous. Fliss was starting to show signs of improvement so we asked our pastor to put her in his prayers to continue to thrive. Within three weeks, she grew 2" and gained 2.5lbs! That's more than she grew in the full 12months prior! Her doctor now thinks she may have had a leaky gut. Having her on an allergen-free diet allowed her system to heal and begin to function normally. But even she was dumbfounded with how FAST she started growing. She was unimpressed with my diagnosis of a miracle. And so, my little angel continues to grow. She now has solid poops, eats a portion that is appropriate for her size and can wear mostly 9-12 month clothes (she's 18 months now). I thank each and every one of you for keeping her in your prayers while we went through our testing. I have no doubt that you helped to heal our little girl. January 28 - Another great news day: we just heard back from the hospital and her DNA has been cleared for Cystic Fibrosis!!!! Woohoo! Had to share with you wonderful mamas. We're now going to see an Endocrinologist and metabolic clinic to see if they can figure out my tiny princess! January 26 - We don't have any official CF test results back yet, but I do have some great news: Fliss has started signing and talking again! It's like a little light switch went off and now she's parroting, trying new words, and she's signing all her words and then some! She's also grown in height a bit - she's now grown out of her 6 month clothes (FINALLY!!). She'll be 16 months in a few days, so I'm hoping that perhaps this is the start of a positive trend! January 5 - GREAT NEWS - Fliss' test came back negative today. It was under 10. How it went from 37 to 10is a mystery. The doctor suspects that one of the tests was faulty. So she has gone ahead with the DNA testing and has also sent a letter to our ped to refer us to an Endocrinologist and the metabolic clinic. Back to square one on the diagnosis journey, but at least we (most likely) crossed a scary condition off the possibility list. December 31: We finally have our CF appointment. We will head to London on Wed, January 5th for another sweat test and a DNA test. Hopefully we'll have an answer. December 17 update: Thanks everyone. Apparently they'll be testing Fliss for up to 300 mutations of the CF gene with the DNA test. But it won't be done until after the holidays now (and hopefully closer to home). If that proves positive, they'll also test my son. December 15 update: So the news today was neither good nor bad. Fliss' Cystic Fibrosis test came back inconclusive. Results between 1 and 35 are negative, over 60 are positive and in between require further testing. Fliss' results came back in the middle. We go to London hospital next week to repeat the sweat chloride test and also to do a DNA test. December 14 update: Felicity had her CF test last Wednesday and we will learn the results tomorrow afternoon. We will also have all her outstanding fluid test results back by that time. I'll be sure to update you all when I get back from the pediatrician. December 3 update: No real news this week. She had a touch of the flu which hasn't helped her growth/weight gain, but otherwise, things are holding. We should have some more lab results by about December 15. I'll be sure to update everyone then. We're hoping to get into our homeopath in the next week to try some alternate therapy. November 29 update: They have done a few UAs, with no abnormal results. As for allergies, she's been dairy, wheat, gluten, and soy-free for about five months now. Our naturopath identified dairy, soy and wheat as sensitivities. We took her to an allergist last week and she has no true allergies. It's suspected the above are just intolerances. Her diet is primarily fruit, vegetables, meat, quinoa, rice, and potatoes. She drinks hemp milk and is still nursing about 3-4 times a day. She does have greasy stool sometimes, which is why we're testing for CF. The results of her last SS are still outstanding. November 28 update: We have some GREAT news: her second blood screen came back with normal calcium levels! The ultrasound also came back normal. So I'm really hoping that this means cancer is no longer an option. She did lose a few ounces between appointments (2 weeks between them), which isn't good. We've chalked it up to her teething and not having her enormous appetite lately. The search continues... November 24 update: She is now almost 14 months and is 17lbs 1oz (she was 8lbs 6ozs at birth and 16lbs at 4 months). Glad to hear you found the culprit with your kiddos. In talking with the pediatrician today, Calcium can be a marker for kidney cancer (as well as some other cancers). They are going to do an ultrasound of her kidneys to look for tumours given her history of UTIs. Oh and the CF testing that we were told was tomorrow was actually this afternoon, so we missed it (the doctor's receptionist messed up the date). The new test will be December 8 (though we're now leaning away from CF). November 23 update: We had our pediatric allergist appointment today and managed to rule out food allergies as the culprit. The doctor was amazing and seemed quite taken with Felicity. He suspects that it could be her kidneys that are causing the problem. Her blood work was returned with elevated levels of calcium. Her doctor has ordered another blood draw to further evaluate this. We're still waiting on some of the blood results and the stool sample testing. We're going to try to introduce lactose-free milk in an attempt to introduce more fat and calories into her diet. We have our CF testing on Thursday and I'll update again after we get the results. Thanks again for keeping us in your thoughts and prayers. November 17 update: She has not been officially tested for celiac disease, but she has been on a gluten free diet for about three months now (she only ate wheat for about a month before we figured out it was not agreeing with her). In order to get an accurate celiac disease confirmation, we'd have to reintroduce gluten to her diet (which we're not prepared to do since we know she can't tolerate it). Her doc is confident that she is gluten intolerant. She has not had any live vaccines, but has been vaccinated on a delayed schedule (with no flu shots). I've never heard of a vaccine stopping growth though...perhaps something to research. Today we had to go to the hospital for a catheter draw (no luck with the bags and she seems to be quite lethargic lately so her doc is even more concerned). Because of her energy levels, she also did a full blood screen. They must have drawn seven vials from that tiny little body. Poor little soul. It's so hard to watch, but I know every step brings us closer to a possible answer and solution. November 16 update: While I'm so glad that I'm not alone in this journey, I'm so sorry to hear so many of you have endured similar situations and know what this is like. We're currently working with a level 2 hospital near us, so not quite Sick Kids yet. My work is being so wonderful and have told me that I can take a leave of absence if I need to so that I can focus 100% of my time on Felicity without losing my benefits/insurance! Right now we're having a frustrating battle trying to collect a urine sample from her. Those little bags just don't work! We've been through six and haven't caught a drop of pee. Every time we've tried to do a urine sample, she's had to be catheterized, so we're trying to avoid this. Wish us luck - she's wearing the last bag now. .............................. Original message: I've never posted in this section before, but I'm really needing the support of my DS mamas right now. Something is wrong with my baby girl. Despite eating like a horse, she isn't growing. She's fallen from the 55th percentile for weight and 70th percentile for length to the 10th percentile for height and is off the charts for weight. She has gained only 1.5lbs in nine months. It seems that whatever was affecting her growth is now affecting her brain. Although Fliss was signing well and had six words when she first began to talk, she's now regressed and does neither. She will babble, but no longer uses any words or signs. We've ruled out the simple stuff: tested her thyroid, took her off dairy, soy and gluten, tested for chronic UTI, her blood for notable infections, and her stool for parasites or infection. Her pediatrician and I are now really worried. The latest rounds of tests are for far more scary diagnoses: Cystic Fibrosis, Cancer, chronic heart or kidney conditions. She is such a perfect little girl. Her name fits her perfectly as it means happiness. She is full of love for everyone around her. Curious, affectionate, funny, adventurous, fearless, joyful - she's the baby that everyone falls in love with instantlyShe thinks her brother hung the moon. And he loves her so much that he tells me that he wants five more little sisters just like her. I'm just so afraid of losing her. I sat at work today and sobbed. The thought of what lies before us just overwhelms me sometimes. I'm asking for your support and love and prayers as we try to find a diagnosis. While I know your first reaction may be to tell me of other babies who were small but are fine, please refrain. This probably isn't going to be the case with Fliss (her story is more complicated and involved than what I can outline here) and though I know it's meant to give me hope, it only makes me feel worse. If you know of a similar situation where a strange diagnosis was made, that might help. Like in those Mystery Diagnosis shows, you never know who might have the answer you need. Thanks in advance mamas. . __________________ *~Lucy~* Loving wife and a devoted mama to 13: three in my arms (Hayden, Felicity and Teagan), and ten in heaven. Check out my blog, focusing on the wisdom of wee ones. Last edited by wordmama; 04-28-2011 at 07:28 PM.

11-15-2010, 11:21 AM	#2
Jallia Registered Users Join Date: Aug 2009 Location: Greater Toronto Area Posts: 465 Ratings: 84 Feedback: 100% My Mood:	Re: Baby girl needs your prayers and healing to start growing hugs to you mama. I will keep you in my thoughts and prayers. I can just imagine how hard this must be for you. __________________ Kris, wife to my American computer geek and love of my life, Ken since 8/9/08. Vaxing, non-circing, babywearing, 'ing, not really crunchy, mama to Daniel (12/29/09)

11-15-2010, 11:26 AM	#3
Sweet_Fantasy_Fox *Administrator* ~Proud mommy of 4~ Join Date: Apr 2006 Location: ~West Coast~ USA Posts: 59,435 Ratings: 610 Feedback: 100% My Mood:	Re: Baby girl needs your prayers and healing to start growing Sending prayers, I hope the dr's are able to figure out what's going on and get her all better. __________________ Sally, wife to D, mama to D, D, N, & A Join Swagbucks~I've earned $410!! ~My sweet Danae is a Cancer Survivor, 6 years!!~

11-15-2010, 11:27 AM	#4
lovebeingamommy123 Registered Users Join Date: Oct 2010 Posts: 883 Ratings: 11 Feedback: 100%	Re: Baby girl needs your prayers and healing to start growing so unbelievably sorry. i will be praying for her and for your family.

11-15-2010, 11:27 AM	#5
L&A'smommy Registered Users Formerly: laylaeomommy Join Date: Sep 2008 Location: PA Posts: 4,167 Ratings: 40 Feedback: 100%	Re: Baby girl needs your prayers and healing to start growing Big hugs. If you want to hear about my MD type big girl PM me I would love to share my experiences of learning to be the best advocate for my Sick DD. We' ll be praying for your LO tonight. __________________ Mom raising three wonderful children.