Lots of symptoms but not very many answers

Michelle - posted on 03/20/2009

Quoting Melissa:

I see you have been thru a lot mate im sorry that must be so hard. to be honest I dont remember what test that they did on Brianna that was testing for a muscle weakness I just know she had one. I think maybe it was blood tests? So she aspirates but she is still allowed to have a bottle oraly? if they do put an NG tube in try not to stress to much about that it really is so easy and simple. I wish I could help you out and I hope everything gets better for you very soon. must be very hard on you going to that many people.

Well the prodedure today went well and Kaylee was a trooper. Now the hard part is getting her to not pull the tube out until 8 am tomorrow.

Michelle - posted on 03/20/2009

Quoting Melissa:

I see you have been thru a lot mate im sorry that must be so hard. to be honest I dont remember what test that they did on Brianna that was testing for a muscle weakness I just know she had one. I think maybe it was blood tests? So she aspirates but she is still allowed to have a bottle oraly? if they do put an NG tube in try not to stress to much about that it really is so easy and simple. I wish I could help you out and I hope everything gets better for you very soon. must be very hard on you going to that many people.

Well the prodedure today went well and Kaylee was a trooper. Now the hard part is getting her to not pull the tube out until 8 am tomorrow.

Mel - posted on 03/18/2009

I see you have been thru a lot mate im sorry that must be so hard. to be honest I dont remember what test that they did on Brianna that was testing for a muscle weakness I just know she had one. I think maybe it was blood tests? So she aspirates but she is still allowed to have a bottle oraly? if they do put an NG tube in try not to stress to much about that it really is so easy and simple. I wish I could help you out and I hope everything gets better for you very soon. must be very hard on you going to that many people.

Michelle - posted on 03/18/2009

Quoting Melissa:

HI Michelle sorry to hear what you have been going through. if it makes you feel any better at all my daughter aspirates, has trouble swallowing and developement problems also as shes not crawling or sitting up or walking and is just about 1. shes been at 7 kilos for about 2 months now. can i ask does she or has she had a nasal gastric tube? I would assume so if she aspirates. its hard when they cant give you any answer are daughter is only 11 and a half months and we are already frustrated and have had enough. they are now thinking soething medical wrong with her swallowing for my daughter. I woul assume she's had a co-ordination swallow done? have they done bloods and urine tests and test for a muscle weakness? they said my daughter had no reflux yet she threw up every feed til about 9-10 months. Does she see an occupational therapist or physiotherapist? and what other people is she seeing if you dont mind me asking and did she ever drink from a bottle

No she doesn't have a gastric tube but they are thinking about it. The want to see what the test on Friday show. We just had a modified swallow done, blood and urine tests. How do they test for muscle weakness? Kaylee has been diagnosed with croinic acid reflux since she was 3 months old. She see's a occupational therapist, physical therapist, speech therapist, developmental therapist, music therapist, goes to a feeding clinic weekly, deratologist, neurologist, genetic specialist, GI specialist, ENT specialist and allergy specialist. Kaylee was breast feed for the first month and then they made me put her on a special formula (by bottle). She is still on the formula (bottle) and puree foods.

Michelle - posted on 03/18/2009

Quoting Melissa:

HI Michelle sorry to hear what you have been going through. if it makes you feel any better at all my daughter aspirates, has trouble swallowing and developement problems also as shes not crawling or sitting up or walking and is just about 1. shes been at 7 kilos for about 2 months now. can i ask does she or has she had a nasal gastric tube? I would assume so if she aspirates. its hard when they cant give you any answer are daughter is only 11 and a half months and we are already frustrated and have had enough. they are now thinking soething medical wrong with her swallowing for my daughter. I woul assume she's had a co-ordination swallow done? have they done bloods and urine tests and test for a muscle weakness? they said my daughter had no reflux yet she threw up every feed til about 9-10 months. Does she see an occupational therapist or physiotherapist? and what other people is she seeing if you dont mind me asking and did she ever drink from a bottle

No she doesn't have a gastric tube but they are thinking about it. The want to see what the test on Friday show. We just had a modified swallow done, blood and urine tests. How do they test for muscle weakness? Kaylee has been diagnosed with croinic acid reflux since she was 3 months old. She see's a occupational therapist, physical therapist, speech therapist, developmental therapist, music therapist, goes to a feeding clinic weekly, deratologist, neurologist, genetic specialist, GI specialist, ENT specialist and allergy specialist. Kaylee was breast feed for the first month and then they made me put her on a special formula (by bottle). She is still on the formula (bottle) and puree foods.

Mel - posted on 03/18/2009

HI Michelle sorry to hear what you have been going through. if it makes you feel any better at all my daughter aspirates, has trouble swallowing and developement problems also as shes not crawling or sitting up or walking and is just about 1. shes been at 7 kilos for about 2 months now. can i ask does she or has she had a nasal gastric tube? I would assume so if she aspirates. its hard when they cant give you any answer are daughter is only 11 and a half months and we are already frustrated and have had enough. they are now thinking soething medical wrong with her swallowing for my daughter. I woul assume she's had a co-ordination swallow done? have they done bloods and urine tests and test for a muscle weakness? they said my daughter had no reflux yet she threw up every feed til about 9-10 months. Does she see an occupational therapist or physiotherapist? and what other people is she seeing if you dont mind me asking and did she ever drink from a bottle

Kristy - posted on 03/18/2009

I think you should definitely see another doctor, just to have some more input.

Michelle - posted on 03/18/2009

Quoting Rhonda:

Hi Michelle, I was wondering if any of the tests with specialists have included any type of brain scans. I will get some info from a friend, the acid reflux you mentioned rings a bell from someone else I know, although I hope it's not for the same reason. A little girl was misdisgnosed with acid reflux and had tests done that revealed something horrible, DIPG Brain Cancer. And the waling or talking issue, sounds familiar from another case I've come across that took awhile to diagnose, but was from an inutero stroke. I hate throwing these words out there, and would pray they are all far misses, and already concluded to mot be the case, but thought you were looking for other cases with similiar sysmptoms. My own daughter had a stroke at age 7, and I know whats its like to do tons of your own research. Every doc we saw told us something different for years. you sound like an amzing mother, keep up all your hard work.

Kaylee has had an MRI done that didn't show anything. She has seen a genetic specialist that tested her for many things and she passed those tests. Thank you for the feed back it really helps. On Friday she is having a precedure done where they will put a scope down her esophogus and to look at it and her upper intestine and take a biopsy of both and then they will put a Ph probe in that will stay there for 24 hrs to monitor her acid reflux. They are looking to see if there is smothing wrong with the structure or wether there is a lot of damage done to her esophogus from the ascid refux.

Michelle - posted on 03/18/2009

Quoting Rhonda:

Hi Michelle, I was wondering if any of the tests with specialists have included any type of brain scans. I will get some info from a friend, the acid reflux you mentioned rings a bell from someone else I know, although I hope it's not for the same reason. A little girl was misdisgnosed with acid reflux and had tests done that revealed something horrible, DIPG Brain Cancer. And the waling or talking issue, sounds familiar from another case I've come across that took awhile to diagnose, but was from an inutero stroke. I hate throwing these words out there, and would pray they are all far misses, and already concluded to mot be the case, but thought you were looking for other cases with similiar sysmptoms. My own daughter had a stroke at age 7, and I know whats its like to do tons of your own research. Every doc we saw told us something different for years. you sound like an amzing mother, keep up all your hard work.

Kaylee has had an MRI done that didn't show anything. She has seen a genetic specialist that tested her for many things and she passed those tests. Thank you for the feed back it really helps. On Friday she is having a precedure done where they will put a scope down her esophogus and to look at it and her upper intestine and take a biopsy of both and then they will put a Ph probe in that will stay there for 24 hrs to monitor her acid reflux. They are looking to see if there is smothing wrong with the structure or wether there is a lot of damage done to her esophogus from the ascid refux.

Sarah - posted on 03/18/2009

I don't have any ideas or suggestions, but I want to say props to you for being so involved and attentive. I know it can't be easy. Hang in there! You and your family are in my thoughts and prayers.

Rhonda - posted on 03/18/2009

Hi Michelle, I was wondering if any of the tests with specialists have included any type of brain scans. I will get some info from a friend, the acid reflux you mentioned rings a bell from someone else I know, although I hope it's not for the same reason. A little girl was misdisgnosed with acid reflux and had tests done that revealed something horrible, DIPG Brain Cancer. And the waling or talking issue, sounds familiar from another case I've come across that took awhile to diagnose, but was from an inutero stroke. I hate throwing these words out there, and would pray they are all far misses, and already concluded to mot be the case, but thought you were looking for other cases with similiar sysmptoms. My own daughter had a stroke at age 7, and I know whats its like to do tons of your own research. Every doc we saw told us something different for years. you sound like an amzing mother, keep up all your hard work.

Nicole - posted on 03/18/2009

I would not stop until you have your answer as to what is going on. I would try going to a children's hospital if you haven't already. Also you can find Specialists online that aren't in your area. I've heard that most mothers are the ones that end up diagnosing strange symptoms from doing their own research. Most general doctors never see strange cases and so they don't know what to look for. Try searching her symptoms on the web and see what you can come up with. I'm so sorry you and your daughter are faced with this. Good Luck!

Kelly - posted on 03/18/2009

Shel, I wish I had more to offer, but I will tell you that you are doing everything right. You are agressivley seeking answers from her Dr's and advocating for her daily. I hope that someone will be able to offer some input who has been in a similar situation.