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Microcephaly


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  #1  
January 3rd, 2007, 12:58 PM
1shortmomma's Avatar Platinum Supermommy
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Paige will be 1 on Jan 26th. They have been concerned due to her not gaining weight and also her head not growing. She has been diagnosed as FTT...she weighs 12lbs 6oz. Her head is 37cm and has not changed since she was 5 months old. The nuerologist said that Paige has microcephaly. They are saying it developed around 4 months old as that is when her head growth slowed and then stopped growing. They are going to do a head CT. I just have to call and schedule it. That will show them more about what is going on with her brain. They also ordered a bunch more blood tests (she had several done by the pedi a few months ago) and recommended she see a endocrinologist and a geneticist. He is also going to follow up in 1-2 months once all her test results are in. He said that she seems to be caught up developmentally but is concerned that she may have future delays since she did a lot of stuff like sitting and crawling late. In fact...1 month ago at 10 months she wasn't even sitting...now she is pulling up on things. She is in PT and OT. We opted not to do speech since she is so young. They are going to re-evalute her for speech in 2 more weeks. From what I am reading there seems to be speech delays associated with microcephaly so I think we may go ahead with the speech at this time. He did say though that it is great that she has gone through a big spurt of all the sudden doing things within the last month so it is possible she will continue to develop on time.

Is there anyone here that knows more about this? What has your experience been? Was you child delayed? Are they still delayed or did they catch up? Do you have them in PT, OT or speech? Sorry for all the questions but this is all pretty new to me.
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  #2  
January 3rd, 2007, 02:14 PM
*Lindsay*'s Avatar Platinum Supermommy
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HI! I didn't catch your name, but I think you post on the thyroid board too, don't you? I know I have "seen you" somewhere else.

Yes, my daugther has micro. We didn't know something was up until her 4 month appointment when her head growth fell off the chart. She is currently followed by a neuro, geneticist, opthamologist, rehab doctor, and a few other-but those are her big ones. She also gets PT, Vision therapy (she wears glasses), ST once a month, but the doctor yesterday wants her to be in once a week, which we agree about.

Depending on the CT, and maybe not depending on it, you will likely need an MRI-but that is much more involoved. If they are for certain saying she is micro, and by the measurements you said, it sounds like she is , they will probably want an MRI anyway. You may try to find that out and see if you can skip the CT scan. Sydney has had a CT and 2 MRI's. Of course, they have to be sedated for an MRI, which is no easy task!

I am not sure why you will see an endo? Did they say?

Sydney's delays are significant. She still does not have complete head control, but she has as what one doctor has said, a brain malformation. There are many kids who just have small brains, but do just fine. The term microcephaly is extremely broad and entails so much.

I would really encourage you to join the Yahoo micro group as well as being here. I love it and there are about 1000 members. You will learn so much and everyone is so supportive. There are kids who are functioning at the high and lower ends.

Here is the link:
http://groups.yahoo.com/group/microcephaly/

PLEASE feel free to ask me ANYTHING! I would love to be there for you. I KNOW how hard this is, and as I am experiencing, it only seems to get harder, but I know eventually it will get easier. You can lean on me for help.

Also, here is a link for head circumfrences. The first time I went to it and put Sydney's numbers in, I cried. That is NOT why I am posting it. I am posting it so you can be more informed to do what is best for your darling. Do NOT let the numbers scare you!

http://simulconsult.com/resources/ftemp20.html

PM me or post on here!

So glad you found us!
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  #3  
January 3rd, 2007, 03:00 PM
1shortmomma's Avatar Platinum Supermommy
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Thanks for the reply. Yes I do post on the thyroid board as well. My name is Renee. I have hypothyroidism as does Paige. The neurologist is wanting her to see an endo due to this and her low weigh...she is 12lbs 6oz!
I will definitely check into the MRI...he did say he wants her sedated for the CT also. So if we could just skip that and go directly to the MRI that would probably be better.
It seems from what the dr is saying and from what I have read she just has a small brain. I am basing this off of the fact that she has had a vast improvement in her motor skills and is on the low end of the 11 month target but is at least meeting 11 month expectations for motor skills.
I will definitely join that yahoo group. I am sure that more questions will come up as we go through the testing, etc. Her percentile on that site is less than 1%!!
Do you mind me asking what size your dd's head is? Is it growing slowly or not growing at all?
Thanks for the quick reply!!!
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  #4  
January 3rd, 2007, 03:27 PM
trisha4005's Avatar Veteran
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Posts: 116
Quote:
Thanks for the reply. Yes I do post on the thyroid board as well. My name is Renee. I have hypothyroidism as does Paige. The neurologist is wanting her to see an endo due to this and her low weigh...she is 12lbs 6oz!
I will definitely check into the MRI...he did say he wants her sedated for the CT also. So if we could just skip that and go directly to the MRI that would probably be better.
It seems from what the dr is saying and from what I have read she just has a small brain. I am basing this off of the fact that she has had a vast improvement in her motor skills and is on the low end of the 11 month target but is at least meeting 11 month expectations for motor skills.
I will definitely join that yahoo group. I am sure that more questions will come up as we go through the testing, etc. Her percentile on that site is less than 1%!!
Do you mind me asking what size your dd's head is? Is it growing slowly or not growing at all?
Thanks for the quick reply!!![/b]
Hello,
My daughter has a rare condition that has resulted in microcephaly. It took forever and several specialists to find out what it was. She hugged the 3rd% for her head, length and weight right up until 1 year, and then fell off of the charts. By then she was also showing the delays.
As for the CT and MRI, my ped told me that there are certain things that can be seen "better" on a CT, such as calcifications, than on the MRI, but that the MRI is all inclusive and can show the reason for microcephaly. She just wanted me to know that the neuro may order both, so I could be prepared.
I think it's great that she's showing improvements in her development. It sounds like a positive sign!
Best wishes, Patricia
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  #5  
January 4th, 2007, 11:09 AM
trisha4005's Avatar Veteran
Join Date: Oct 2006
Posts: 116
Quote:
HI! I didn't catch your name, but I think you post on the thyroid board too, don't you? I know I have "seen you" somewhere else.

Yes, my daugther has micro. We didn't know something was up until her 4 month appointment when her head growth fell off the chart. She is currently followed by a neuro, geneticist, opthamologist, rehab doctor, and a few other-but those are her big ones. She also gets PT, Vision therapy (she wears glasses), ST once a month, but the doctor yesterday wants her to be in once a week, which we agree about.

Depending on the CT, and maybe not depending on it, you will likely need an MRI-but that is much more involoved. If they are for certain saying she is micro, and by the measurements you said, it sounds like she is , they will probably want an MRI anyway. You may try to find that out and see if you can skip the CT scan. Sydney has had a CT and 2 MRI's. Of course, they have to be sedated for an MRI, which is no easy task!

I am not sure why you will see an endo? Did they say?

Sydney's delays are significant. She still does not have complete head control, but she has as what one doctor has said, a brain malformation. There are many kids who just have small brains, but do just fine. The term microcephaly is extremely broad and entails so much.

I would really encourage you to join the Yahoo micro group as well as being here. I love it and there are about 1000 members. You will learn so much and everyone is so supportive. There are kids who are functioning at the high and lower ends.

Here is the link:
http://groups.yahoo.com/group/microcephaly/

PLEASE feel free to ask me ANYTHING! I would love to be there for you. I KNOW how hard this is, and as I am experiencing, it only seems to get harder, but I know eventually it will get easier. You can lean on me for help.

Also, here is a link for head circumfrences. The first time I went to it and put Sydney's numbers in, I cried. That is NOT why I am posting it. I am posting it so you can be more informed to do what is best for your darling. Do NOT let the numbers scare you!

http://simulconsult.com/resources/ftemp20.html

PM me or post on here!

So glad you found us! [/b]
Thanks for the link to the yahoo group, I joined last night. You're right, there is a lot of great information. I haven't introduced myself and am just lurking and getting to know the board, but I will.
Thanks again!
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  #6  
January 9th, 2007, 06:44 PM
*Lindsay*'s Avatar Platinum Supermommy
Join Date: Apr 2006
Location: Virginia
Posts: 12,516
Quote:
Thanks for the reply. Yes I do post on the thyroid board as well. My name is Renee. I have hypothyroidism as does Paige. The neurologist is wanting her to see an endo due to this and her low weigh...she is 12lbs 6oz!
I will definitely check into the MRI...he did say he wants her sedated for the CT also. So if we could just skip that and go directly to the MRI that would probably be better.
It seems from what the dr is saying and from what I have read she just has a small brain. I am basing this off of the fact that she has had a vast improvement in her motor skills and is on the low end of the 11 month target but is at least meeting 11 month expectations for motor skills.
I will definitely join that yahoo group. I am sure that more questions will come up as we go through the testing, etc. Her percentile on that site is less than 1%!!
Do you mind me asking what size your dd's head is? Is it growing slowly or not growing at all?
Thanks for the quick reply!!![/b]

Hi Renee! I am so glad we have met now on 2 different boards! Even though both circumstances stink, it is great to know you are out there.

Ask your daughter's doctor and let me know what he/she says about the MRI/CT scan.

Just so you know, Sydney is small also. She isn't on the charts for her weight. Many if not most kids with micro have difficulty gaining weight. If and when you join the micro group you can do a search of past threads on weight and you will find probably thousands of e-mails about it. That is why there is so much discussion about g-tubes. But, as I have mentioned, I think......... blonde moment, lmao, some of the info on the micro group can be scary and/or overwhelming, so only read what you think you can handle or is applicable to you right now. It can take you over quite strongly and make you feel down. But, at the same time, it is great to educate yourself. I have found that the things I read on there doctors then bring it up and discuss it with me at appointments and I am glad that I have heard of it and/or are familiar with it.

As for Sydney's head growth, when she was born, it was 12 3/4 inches. Now, it is 14. 7 inches. So, the growth is there, but it is minimal.

HTH!
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  #7  
January 13th, 2007, 02:09 PM
1shortmomma's Avatar Platinum Supermommy
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Thanks for the info. I did sign up for the yahoo group...just haven't introduced myself yet. I've been lurking and reading. There is definitely a lot of information on there...I've been searching and reading some of the past posts.
I'm actually compiling a list of questions to bring to the next dr appointment.
As hard as this is to go through and as much as I hate that other's have to go through it as well it is nice to know that there are other's out there that understand.
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