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My Dr and I are not agreeing and I feel lost and crazy *EDIT


 
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inachildsmind
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PostPosted: June 11 2014, 12:31 PM    Post subject:
My Dr and I are not agreeing and I feel lost and crazy *EDIT
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My daughter is 9 months old. She has had difficulties with coordination on her right side, she has an astigmatism in both eyes (dr did check so quick I didnt feel like he spend much time on her at all) she has hearing trouble in her left ear (that is oddly smaller than her right one that looks normal) and she has trouble eating, swallowing and constant congestion in nose and eyes since birth. Her tongue has always been out (and in the way when breastfeeding and now solid food eating) and its as adorable as can be! I have done tons of research to try to see if all of it is connected but my Dr wont take them seriously because she is reaching milestones. I am a bit confused on how her milestones are connected to her health issues. I am a stay at home mom with background in child development so i would HOPE she is reaching her milestones or I am not doing my job as a professional/parent lol. She does get tested every 3 months and is slightly behind every time which can be normal but it MIGHT mean something occationally. My Dr never takes my concerns seriously and after 5 months of research I finally felt brave enough to ask him about the possibility of Down Syndrome. He laughed and said "I have worked in the medical field for many years and I have never missed a "Downs Kid" and SHE is not one." First off I found this very rude, whether my daughter is or not, I do not think he was very appropriate with his wording. I brought up the medical issues and he said she is so young that its not a concern. He said he could order the test but it would be a waste of time. So I left the office feeling stupid and crazy. I did not leave with a test referral.

So as I have read online, you cant always tell just by looks.I have searched many faces of Down Syndrome and I can tell immediately with some and others I have to look really hard, so for him to judge just by glancing at my daughter for a few seconds while he checks her over, just seems crazy too me. Though I might just be the crazy one. I just want answers and too me I feel their is one that can explain it all.

Would you mind if I posted pictures of my daughter so see, IF BY LOOKS ALONE, you would dismiss the idea? I do not have anyone else to talk to about this subject so if my Dr is judging by looks, I thought I would see what other mothers, with children whom are diagnosed would think. I am trying to write this as kindly and non-offending way as possible. Please. Thank you.

an autistic mom of two Smile

**EDIT**
Thank you so much everyone! Please leave any helpful comments on the photos (as in anything that stands out as a trait or similarities if you feel comfortable helping in that way) Otherwise, I am grateful to have a place to go for support.
[img]http://s908.photobucket.com/user/sltomaso/library/?sort=9&page=1[/img]


Last edited by inachildsmind on June 12 2014, 10:21 PM; edited 1 time in total
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mary c
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PostPosted: June 11 2014, 1:15 PM    Post subject:
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Go ahead and post some pictures. You need to load them into photobucket and then post from there.

Frankly, I think I would find another doctor. A doctor should listen and take your concerns seriously, on whatever topic, and it sounds like your guy doesn't. Whether it is chicken pox or DS, you should be able to have a reasonable discussion with your doctor.

As far as your concerns go, it is really hard to tell what is typical baby issues and what is possibly something more. My daughter with DS developed fairly typically at that age and other than low tone and a heart issue, there wasn't much to indicate that she had Ds. In fact, my doctor at first questioned the diagnosis. If you look at our pictures, my little one doesn't have a classic DS face, although if you spend enough time in the DS community you would pick up the signs.

Some things you might want to look for (in addition to a new doctor) is for a single crease in the palm of the hand (many people with DS have one, as did some people without DS) and "sandal toes"--a larger than normal gap between the big toe and the rest of the toes.

Since you have concerns, it is better to find out one way or the other than to worry about something that may not be. And rest assured that if you baby does have DS, you are blessed to have her.

And finally, many babies with DS will not reach all their milestones on "time" due to low tone issues--so even if you were the world's greatest expert in child development and worked around the clock with your child, she still might not reach the milestones on time.

Good luck!

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Rachel3
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PostPosted: June 11 2014, 2:25 PM    Post subject:
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I have enormous respect for Mary, but I would not post photos because no one can tell from photos. Our son didn't 'look' like he had Downs and his doctors (he was in hospital for other reasons) debated the issue for weeks before letting us know their concerns. There was nothing in Jacob's appearance to suggest he had Downs, other than sticking his tongue out - and he was premature - we didn't know what a typical premmie looked like.
We got our diagnosis at 9 weeks after a blood test was recommended.

In the end, only a blood test can tell you whether or not your child has Downs.

I quite agree that you might find a second opinion or a more sympathetic doctor helpful.

Regardless of where your baby is in terms of mile stones, if you are concerned about Downs then only a blood test - with the genetic test which goes with it - will tell you, not the child's appearance.

If your little girl does turn out to have Downs, she will still be your little girl. She will love you and she will bring so many blessings to your life, just like any other child. There will be highs and lows, and it will be OK.

Your signature suggests you have autism? That probably presents you with challenges and if you think you have a child with special needs I would suggest taking all the support you can get from health professionals and social services. They are there to give support.

Wishing you good luck! And a big welcome to the Downsyn forum!

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mary c
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PostPosted: June 11 2014, 2:34 PM    Post subject:
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Rachel, I agree with you--looks alone are not enough for a diagnosis and sometimes, like in our case and in yours, don't show the DS. Some kids do have a classic look about them and those are easier to pick out from a photo.

Also if you do have a test, make sure they test sufficient numbers of cells as the child could have mosaic DS (which occurs when a triplication of the chromosome occurs after the first cell division--not every cell would then have a triple chromosome 21).

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PostPosted: June 11 2014, 3:11 PM    Post subject:
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Absolutely. Mosaic DS is rare and often diagnosed later... it was suggested to us when we first started on this path... (LOL)
But it needs to be picked up. I would suggest a thorough blood test for a definite diagnosis, then go from there... the test should tell you if it is clear, or mosaic or regular Downs. There are different kinds although most are the regular DS. Better off knowing IMO.

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LinMac
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PostPosted: June 11 2014, 3:48 PM    Post subject:
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Welcome to Downsyn and congratulations of the arrival of your baby!

Having read your post I think I'd seek a second opinion with another paed doctor and request a complete blood work up to check for any kind of genetic abnormality, including Down Syndrome, etc!

No way I'd be able or willing to give an option based on a photo!

Good luck with what ever you decide to do!

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inachildsmind
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PostPosted: June 11 2014, 7:40 PM    Post subject:
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[quote="mary c"]Go ahead and post some pictures. You need to load them into photobucket and then post from there.

Frankly, I think I would find another doctor. A doctor should listen and take your concerns seriously, on whatever topic, and it sounds like your guy doesn't. Whether it is chicken pox or DS, you should be able to have a reasonable discussion with your doctor.

As far as your concerns go, it is really hard to tell what is typical baby issues and what is possibly something more. My daughter with DS developed fairly typically at that age and other than low tone and a heart issue, there wasn't much to indicate that she had Ds. In fact, my doctor at first questioned the diagnosis. If you look at our pictures, my little one doesn't have a classic DS face, although if you spend enough time in the DS community you would pick up the signs.

Some things you might want to look for (in addition to a new doctor) is for a single crease in the palm of the hand (many people with DS have one, as did some people without DS) and "sandal toes"--a larger than normal gap between the big toe and the rest of the toes.

Since you have concerns, it is better to find out one way or the other than to worry about something that may not be. And rest assured that if you baby does have DS, you are blessed to have her.

And finally, many babies with DS will not reach all their milestones on "time" due to low tone issues--so even if you were the world's greatest expert in child development and worked around the clock with your child, she still might not reach the milestones on time.

Good luck![/quote]

Yeah I did not really know how to write about the milestones. She is always a bit behind, which is why I try to explain to the doctors why it is a concern. Because I do work around the clock with her (i do not think I am the worlds greatest mom though lol) I have fun with her and stuff so I am not just making her do stuff all day. I just saw that my Dr was not concerned so I took matters into my own hands. Because I have ASD I was assigned a family counselor during pregnancy with her and she does the testing every 3 months. It was at 4 months her inability was shown on the test and during the testing that she could not get her right hand to her mouth. It took 2 months of me working with her and my family counselor working with her to get her up to where she should be. Even my family counselor says she would not be as far along if it wasnt for me putting in the time with her. My Dr wont listen to her either and that upsets me. I only met I know what the milestones are so I would hope that I would be working with her to get her there, but because I have, he wont take her being slightly behind as a concern. She catches up to the 4 month test when she is 6 months, and then at 9 months she is caught up to the 6 month test. So its a struggle and even my counselor said to look for a different doctor. She seems to think maybe my ASD might make the Dr look differently at my concerns and if he does that with me, then he is not a good fit for my daughter. So I am currently looking for someone who will take the time with ME so they can learn about my children. Communication is very hard for me and getting told things, I am easily abled to be redirected but this time I just cant let the feeling go, that I am right, not necissarily about the DS but there must be something and the only place to start is by creating a path for them to look into. Now only if they will listen to me... I hope I can find a good DR. Yes, my daughter does not have the single crease, her toe gap is larger but not like the pictures I have seen. Larger than mine and her brothers, but not like a big gap. Sorry I ramble. Thank you for your advice. Your daughter is beautiful.
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inachildsmind
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PostPosted: June 11 2014, 7:54 PM    Post subject:
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[quote="Rachel3"]I have enormous respect for Mary, but I would not post photos because no one can tell from photos. Our son didn't 'look' like he had Downs and his doctors (he was in hospital for other reasons) debated the issue for weeks before letting us know their concerns. There was nothing in Jacob's appearance to suggest he had Downs, other than sticking his tongue out - and he was premature - we didn't know what a typical premmie looked like.
We got our diagnosis at 9 weeks after a blood test was recommended.

In the end, only a blood test can tell you whether or not your child has Downs.

I quite agree that you might find a second opinion or a more sympathetic doctor helpful.

Regardless of where your baby is in terms of mile stones, if you are concerned about Downs then only a blood test - with the genetic test which goes with it - will tell you, not the child's appearance.

If your little girl does turn out to have Downs, she will still be your little girl. She will love you and she will bring so many blessings to your life, just like any other child. There will be highs and lows, and it will be OK.

Your signature suggests you have autism? That probably presents you with challenges and if you think you have a child with special needs I would suggest taking all the support you can get from health professionals and social services. They are there to give support.

Wishing you good luck! And a big welcome to the Downsyn forum![/quote]

I know, I felt weird suggesting the photos, but I guess its because he dismissed it due to her looks. I feel I can see some of the traits but I dont know if its because I am looking or if I really am seeing something that is there. I know you cant tell by looks alone, I wrote that in my message, but I guess I... I dont know, I cant describe in words why I want you all to see her. She is beautiful, I love her with all my heart, her and her brother are my world and I would not love them any less if they had any form of difference. I signed "autistic mother" because I am autistic. I am not one of those that argue over putting my disability first in front of who I am, I think those that do are only BSing themselves. Excuse my language. I am Autistic, Autism is me. Without it I would not be who I am so it does define me as a person and I dont mind. I struggle with life, but I love who I am. I want help for my daughter, I feel something is up. I guess thats why I wanted the pictures to be shown. I feel he over looked her because she was not the classic form in his eyes. I dont know how to say this without sounding rude, so I apologize if I do. One of my best friends has DS and I cant even ask her because I feel like I would be disrespecting her in some way. This is very touchy and with my language and communication issues I have no way of competely explaning my needs. I finally called back and asked them for a referall to get the blood test. They said they would call me back and its been TWO days since I have heard from them. (the DR office). I feel like they think I am crazy because I did my research and I asked for them to do a 100 cell testing and they said they would talk to the DR and call me back. I think the DR is more concerned about his reputation then my daughter. I feel lost and I dont have many friends and I cant talk to my family so I wanted to turn to you. Thank you.
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inachildsmind
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PostPosted: June 11 2014, 7:59 PM    Post subject:
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[quote="mary c"]Rachel, I agree with you--looks alone are not enough for a diagnosis and sometimes, like in our case and in yours, don't show the DS. Some kids do have a classic look about them and those are easier to pick out from a photo.

Also if you do have a test, make sure they test sufficient numbers of cells as the child could have mosaic DS (which occurs when a triplication of the chromosome occurs after the first cell division--not every cell would then have a triple chromosome 21).[/quote]

I did request a 100 cell testing and the lady on the phone said she had no idea what that ment and she would have to talk to the DR. That was 2 days ago. I have not heard from them since. I know looks alone cant tell. Would it still be bad or disrespectful if I posted them anyway? I guess I just dont want to feel crazy? I feel I see something. I have seen many children on this forum, all of them are just like everyone else, they have different smiles, eyes, nose, ears and styles and I dont want to say everyone with DS looks the same. But doing research I have seen certain mannerisms and traits even on the children I never would have guessed (like your daughter) as to have DS. I dont know if I am seeing it, or just making myself see it because I want answers and because I have seen so many pictures, I am starting to notice things. I know this is a silly post, I hope I did not offend you or anyone else.
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inachildsmind
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PostPosted: June 11 2014, 8:04 PM    Post subject:
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[quote="LinMac"]Welcome to Downsyn and congratulations of the arrival of your baby!

Having read your post I think I'd seek a second opinion with another paed doctor and request a complete blood work up to check for any kind of genetic abnormality, including Down Syndrome, etc!

No way I'd be able or willing to give an option based on a photo!

Good luck with what ever you decide to do![/quote]

Thank you. I wish I had the ability to be so demanding. Drs intimidate me. I hope to find someone who will listen. I apologize if I offended you with my want to post. I guess thats why I asked instead of doing it. I dont know anymore.
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PostPosted: June 12 2014, 5:36 AM    Post subject:
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Mosaic DS is a real possibility because many people with mosaic DS don't have the appearance of having DS. When Talitha was little many people told me she didn't look like she had DS. Now it is very obvious but not always as babies.
It is important for your daughter to be diagnosed correctly so I think that finding another doctor who is at least prepared to do the testing necessary to identify DS, including mosaic DS which can be a more complex to identify as the cells tested may not be the ones where chromosome 21 is duplicated so a variety of cells must be tested.

We know our children and if you read through the posts you will see many situations where mother knows much better than doctor. Persevere with finding another doctor, your child is worth the effort.

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Rachel3
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PostPosted: June 12 2014, 11:20 AM    Post subject:
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If posting photos would help you then post some! Most people on this forum love to see each others photos! Its just that we just can't decide from photos about DS.
As you have ASD I am guessing that some concrete information would help. Find a way of getting a blood test done. Keep telling your doctor that you want her to be tested for DS. You need to know for certain whether or not she has DS. Then, if you discover that your daughter has DS you have a definite diagnosis to work with. Lots of DS organisations provide clear and helpful steps for parents to take. It sounds like you are already doing a lot to help her development.
No one here will be offended by your posts and questions. We are glad you found us. We all have questions from time to time and we all try to support each other.
A lot of people on this forum have children with DS and ASD. So you have found people who will understand you.

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LinMac
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PostPosted: June 12 2014, 11:44 AM    Post subject:
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What Rachel says is true! We are very willing to look at the photos but the only definitive test for DS is a blood test. We can't diagnose DS.

Its fairly common to seek a second opinion if you are not satisfied with what your doctor is saying or if you feel you don't trust what he is saying. Or even if you feel he is not listening to you. Your current doctor won't be upset or offended if you ask another doctor for a second option.

Secondly, do you have a sibling, family member, close friend or your mentioned your counsellor who might help you find another doctor. They might be able to go with you to the new doctor and support you while you explain your concerns about your daughter and ask for detailed genetic testing to rule out any genetic problems, including Down Syndrome.

You're a good mother! I believe you can find another doctor and get a second option.
Good Luck!

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PostPosted: June 12 2014, 12:10 PM    Post subject:
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Great advice to take a friend, Linda.
I did this once - I was facing a delicate health issue which I felt uncomfortable talking about.
So I asked a good friend to come with me.
I also wrote down what I wanted to say and gave that piece of paper to the consultant. Putting down on paper everything I wanted to be known but couldn't say, and having a friend there for support and to speak for me if I got upset, was invaluable in that particular situation.
So - would it help to write down whatever you would ideally want to say so that you can hand it to your doctor, and have someone with you for support?
My doctor responded very well to this approach.

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PostPosted: June 12 2014, 8:38 PM    Post subject:
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Hi there

I agree with the girls. Take a friend or relative for support. This doctor should not be dismissing your concerns. My son was only diagnosed at 4 months old. He was hitting all of his milestones but as they get older the gaps get wider between them and typical kids.

The test is called Karyotype. They actually count the chromosomes I think. it takes about 7 to 10 days to get the results.

There are actually up to 50 symptoms that a child with ds can have. Educating yourself on a bunch and then listing them to show a medical professional might help. Maybe your doc's pride is getting in the way because he didn't catch it. Mine actually lied on the letter to my ped that we weren't ready for the test. That was crap. As soon as he brought it up i was all over getting him tested as I had noticed things from the beginning and he had just shrugged them off. He didn't have a lot of experience with ds.

Something you can point out is if they don't get her tested and you find out later then she has lost a lot of time on early intervention as well as several tests she should be having done.

By all means post your pics. We love to see each other's kids!

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PostPosted: June 12 2014, 11:35 PM    Post subject:
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[quote="LinMac"]What Rachel says is true! We are very willing to look at the photos but the only definitive test for DS is a blood test. We can't diagnose DS.

Its fairly common to seek a second opinion if you are not satisfied with what your doctor is saying or if you feel you don't trust what he is saying. Or even if you feel he is not listening to you. Your current doctor won't be upset or offended if you ask another doctor for a second option.

Secondly, do you have a sibling, family member, close friend or your mentioned your counsellor who might help you find another doctor. They might be able to go with you to the new doctor and support you while you explain your concerns about your daughter and ask for detailed genetic testing to rule out any genetic problems, including Down Syndrome.

You're a good mother! I believe you can find another doctor and get a second option.
Good Luck![/quote]

Thank you. I will see if my counselor can come with me. That is a great idea and she has all over my daughters struggles and achievements on file.
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PostPosted: June 13 2014, 2:46 PM    Post subject:
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I can't tell anything from the photos except that she is a real cutie! She does seem to have her tongue out a fair amount, but I don't think that's anything to make a diagnosis off of. I agree with most of the advice you've already been given about getting a second opinion (or a new doctor!).

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PostPosted: June 13 2014, 8:15 PM    Post subject:
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[quote="AliMama"]I can't tell anything from the photos except that she is a real cutie! She does seem to have her tongue out a fair amount, but I don't think that's anything to make a diagnosis off of. I agree with most of the advice you've already been given about getting a second opinion (or a new doctor!).[/quote]

Thank you for your input. The doctor office finally called back today. They told me she needed to be evaluated for development in order for the Doctor to find the need to give me the blood test. Then they said if I really wanted to get it done then I would have to go to a specialized Doctor and they wouldnt be available till July of next year. I told them that was BULL! I said all they needed to do was sign off for her to have the darn test. She said, well frankly she does not meet the criteria. She has no symptoms or traits. I said like what? She ONLY mentioned the heart condition. I told her she has the digestive issues, the tongue out and the feeding problems, she has been tested in her ears and her left ear cant hear low to average pitches, she has an astigmatism in both her eyes and may need glasses in a YEAR. She has trouble with her hands and coordination, and fluid in her sinuses that wont seem to go away and she is constantly congested. So to say she has none, of the 50 symptoms is crazy.She is very large for her age, which is more common in Mosaic (grow fast and then slow down after). Then she said Well, she has none of the traits. ARE YOU KIDDING ME!? THE TONGUE! If anything her eyes slightly tilt up but the tongue. That tongue wakes her up at night, keeps her hungry during the day, she breathes in drool and coughs and is congested. OH boy, I am just so upset with this Dr. I finally told them, I should not have to beg or convince you to give me a simple test. I should not have to wait a year to see a specialist. She MAY NOT have DS but I need to know. I will find another Dr. If I am wrong and I stay with you I will be embarassed by all the effort and pushing to get the test, if I stay here and she DOES have DS I will be upset and disappointed that I had to FIGHT for it. Either way I cant stay with the Dr. The lady apologized and said she understood. I had a panice attack after the phone call. I have NEVER stood up to anyone like that before. I was proud and sad. Now I have to figure out what Dr would be suitable. I just made more work for myself. I also feel like stalling. What if I am wrong? BUT What if I am right? Neither will feel good in the moment.
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PostPosted: June 14 2014, 12:49 AM    Post subject:
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I don't know what country/state you are in, but some of his hesitation to order the tests might be because of the cost of the tests, which can be very expensive, I believe. Not that I'm trying to excuse his behavior in any way.

Good for you for speaking up to the doctor's office. I'm not very good at those kinds of confrontations either, so I know how hard it can be. Best of luck in finding a new pediatrician who will listen to your concerns.

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PostPosted: June 14 2014, 4:00 AM    Post subject:
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She is absolutely gorgeous!!! I don't really see any specific markers for DS but if she has mosaic DS then she may not have obvious markers. I think that you have enough concerns to justify testing given that the test is a fairly simple process for the child. It is better to know and your mother instinct is telling you that all is not as it should be. Don't ignore that, us mothers are most often right. We might not get the specifics correct but we always know when something is going on.

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inachildsmind
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PostPosted: June 14 2014, 7:28 AM    Post subject:
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oops


Last edited by inachildsmind on June 14 2014, 7:33 AM; edited 1 time in total
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inachildsmind
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PostPosted: June 14 2014, 7:30 AM    Post subject:
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[quote="Tigger"]She is absolutely gorgeous!!! I don't really see any specific markers for DS but if she has mosaic DS then she may not have obvious markers. I think that you have enough concerns to justify testing given that the test is a fairly simple process for the child. It is better to know and your mother instinct is telling you that all is not as it should be. Don't ignore that, us mothers are most often right. We might not get the specifics correct but we always know when something is going on.[/quote]

Well If I can get a DR who will see her as a whole and not just little by little of what I say month to month visits, maybe they can work with me on figuring out another possibility along with the DS. I just feel like if THEY wont look into them, then I must give them something to look into to start the process of how serious i am. I also know, as moms, we can drive ourselves crazy trying to make sense of things and me with autism its even worse. I get obsessed with trying to make sense of things and its hard to let go. I wont let go of that gut feeling, I know their is something going on. My family even knows, she just seems... different my sister told me last night. I have not told anyone about my DS suspission so to hear her say that without provoking or giving her anything to go on, made me feel like I am going in the right direction (fighting to find if their is more too her troubles). Thank you for taking your time to speak with me and look at the pictures. I love her so much :)
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Rachel3
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PostPosted: June 14 2014, 12:47 PM    Post subject:
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What a beautiful little girl!
She is sticking her tongue out a some photos but not others, and in some of the pictures her eyes look almond shaped (a possible indicator) but in others they don't.
She is sitting and standing very well - a lot of children with DS can't do this at her age due to developmental delays.
Our little boy didn't look like he had DS when he was tiny, but he does now.
Only a blood test will tell you.
Let us know how it goes. Whatever the outcome, be proud of your baby - she is beautiful!

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Mum to Thomas 05, Luke 07, Jacob DS 09. Married to Stephen.

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LinMac
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PostPosted: June 14 2014, 1:52 PM    Post subject:
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What a beautiful child! Delighted to met her....what's her name?

Tell your sister of your worries and your plan to get a second option and genetic testing. She is right person to support you. Sounds like she loves your daughter and you!

One small point.....my son has a toe like your daughters....Not a big gap but a bigger second toe!

You will have no peace of mind till you do the genetic testing......

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inachildsmind
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PostPosted: June 14 2014, 7:22 PM    Post subject:
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[quote="Rachel3"]What a beautiful little girl!
She is sticking her tongue out a some photos but not others, and in some of the pictures her eyes look almond shaped (a possible indicator) but in others they don't.
She is sitting and standing very well - a lot of children with DS can't do this at her age due to developmental delays.
Our little boy didn't look like he had DS when he was tiny, but he does now.
Only a blood test will tell you.
Let us know how it goes. Whatever the outcome, be proud of your baby - she is beautiful![/quote]

Thank you! It is very rare for me to get a photo without her tongue out lol. She pretty much has it out all day, and when she sleeps only the tip is out and she looks like she has chipmunk cheeks its soo cute! Her eyes confuse the crap out of me. At some angles they look almond shape and then sometimes I think I am not seeing the almond shape like you did. She moves alot but I think thats part of her motor issues, she cant lay on her back and the Doctors say its hypertonicity or something. They never went further beyond mentioning it to me. She is constantly on her tip toes but she still doesnt have the reflex to catch herself and she falls backwards alot. She is very strong though and determined little twerp. She couldnt move her right arm and leg or coordinate her hand to her mouth even till she was 6 months and she had therapy twice a week and me working with her twice a day one on one. She still loses control of her right hand and foot, but again, because she met her milestone in motor, the doctor I had wont look further into it. Today she was eating puffs and I had to hold her left arm down (its to make her right one stronger) and she kept missing her mouth. I finally got it on tape and I am going to show the new Doctor once I find one. Her left works perfectly. So yes she can sit and stand but she falls randomly all the time with nothing around to really cause it. Just boom, down on the floor but she is so cute cause she will just look up and lay their for a while, smile and she will lay on the floor for a minute or so after each fall. I dont know if that is something to record or mention either. I would think most babies would get up and crawl away. But I dont wanna look for more to worry about lol. I thank you for your time and your input. Monday I have a Doctor visit with my sisters pediatritian.
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inachildsmind
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PostPosted: June 14 2014, 7:33 PM    Post subject:
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[quote="LinMac"]What a beautiful child! Delighted to met her....what's her name?

Tell your sister of your worries and your plan to get a second option and genetic testing. She is right person to support you. Sounds like she loves your daughter and you!

One small point.....my son has a toe like your daughters....Not a big gap but a bigger second toe!

You will have no peace of mind till you do the genetic testing......[/quote]

OH my daughters name is Lilah <3

Its hard to talk to my family about things. The fact my sister mentioned her feeling about her was a relief to me, but I dont want to spark something, not know how to explain my reasons. I will wait for results. If they are positive I will tell my family. Other than that, its just best I keep this to myself.

I am interested in the toe. Your son has it as well? Yes her feet are constantly scrunched, but during bath time and first thing in the morning she seems to be more relaxed and you can see her big toe seperates into a V shape, both feet have the bigger toe but only her right one has the gap. Very interesting. Thank you for your support.
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inachildsmind
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PostPosted: June 14 2014, 9:15 PM    Post subject:
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[quote="LinMac"]What a beautiful child! Delighted to met her....what's her name?

Tell your sister of your worries and your plan to get a second option and genetic testing. She is right person to support you. Sounds like she loves your daughter and you!

One small point.....my son has a toe like your daughters....Not a big gap but a bigger second toe!

You will have no peace of mind till you do the genetic testing......[/quote]

May I ask if your son has something going on with his hands?
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LinMac
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PostPosted: June 15 2014, 1:29 AM    Post subject:
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No.....His hands are ok, nothing unusual there!

The gap is normal with my son's toe, no V gap!
But his second toe is proportionally bigger than his other toes. Kind of looks like its swelled, inflated in comparison to his other toes......You'd notice it once its pointed out.

Its lovely to met you Lilah!

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inachildsmind
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PostPosted: June 15 2014, 8:44 AM    Post subject:
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[quote="LinMac"]No.....His hands are ok, nothing unusual there!

The gap is normal with my son's toe, no V gap!
But his second toe is proportionally bigger than his other toes. Kind of looks like its swelled, inflated in comparison to his other toes......You'd notice it once its pointed out.

Its lovely to met you Lilah![/quote]

Oh I asked cause my daughters right hand contorts sometimes like the picture of him holding the straw. Its only her right hand and she wont touch anything with it when its like that. I apologize if I said something to bother you.

Yes her two feet have the same swelled toe lol. Thank you.
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LinMac
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PostPosted: June 15 2014, 11:11 AM    Post subject:
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You haven't bothered me in any way, No apologies needed here! We all understand where you are coming from and the concerns and worried you have for Lilah! It's good to be able to help!

Wish I was closer and could offer you some support. But I'm thousands of miles away in Ireland......Sorry!

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inachildsmind
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PostPosted: June 15 2014, 7:53 PM    Post subject:
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[quote="LinMac"]You haven't bothered me in any way, No apologies needed here! We all understand where you are coming from and the concerns and worried you have for Lilah! It's good to be able to help!

Wish I was closer and could offer you some support. But I'm thousands of miles away in Ireland......Sorry![/quote]

I have always wanted to travel to Ireland! I will update my stuff once I speak to a Doctor. You all have been very nice. My son has red hair, but he was not blessed with the adorable freckles. He looks so sweet :)
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micah's mom
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PostPosted: June 16 2014, 2:41 PM    Post subject:
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I couldn't add more before, so I was just reading along. First of all, you have a beautiful daughter, regardless if she has a special need or not!

When you write of her having trouble with coordination, her hands not always doing things right, standing on her toes, feet/toes being tight...those are all symptoms of CP.

I think you should find a new doctor, like the others said, because your concern of something not being right should never be pushed aside. Along with checking for Ds to put your mind to rest or get your daughter on track for check-ups/therapies if she does have Ds, you should also have her checked for CP. I believe there are therapies for that as well, and the sooner it is found and worked with the better off in the end.

I hope you find a doctor who will hear you and address your concern that something is not right. Best wishes.

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Rachel3
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PostPosted: June 16 2014, 2:59 PM    Post subject:
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Totally agree. If you feel something 'isn't quite right' then trust your intuition and get a doctor to follow it up.
It may turn out to be nothing.
But if it is something - not necessarily DS - then the sooner your know, the better.
Good luck with it all!

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Rachel
Mum to Thomas 05, Luke 07, Jacob DS 09. Married to Stephen.

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