walking

[deafgal001]

Wirelessly posted

Yeah. I think it is sad that none of the doctors explain this to her. They just left her in the dark .



I'm still not sure if it normal for her child not to be walking on his own at age two when other children are running. Even its normal in her child's situation, I still think he need therapy because he need to be walking and potty trained before preschool.

 

[Bottesini]

Wirelessly posted

Yeah. I think it is sad that none of the doctors explain this to her. They just left her in the dark .



I'm still not sure if it normal for her child not to be walking on his own at age two when other children are running. Even its normal in her child's situation, I still think he need therapy because he need to be walking and potty trained before preschool.

True. And that is not necessarily his problem. I was just pointing out that it is very common with deaf people. Even here, I don't think Bebonang and I are the only ones who have it.

Since I know a few in real life , it would make sense there are a more here.

But there certainly can be other problems with walking ,

 

[Anij]

I have balance issues (mostly when I'm tired, ill, or in the dark - when my eyes can't help me out)

I would recommend, if it hasn't already been done asking for a CT or MRI - as they are the tools typically used to determine EVAS (enlarged vestibular aqueducts syndrome) which is one of the main causes of both hearing loss and balance issues.

I'd also encourage him to walk with various "push and walk toys" (toys with wheels and a grab bar like those shown here, that are meant to help with walking and balance - that way you can know for sure it's a balance issue and not a muscle tone or other issue (make sure the "walking bar" is one of the higher type if he's much taller than an average 12-18month old)

One thing that I find is "transitions" (sitting to standing, Laying to sitting/standing) are the most prone to exaggerate my balance issues (I also have low-ish BP so I feel "uneasy", and a bit dizzy when I get up too fast sometimes). Helping him sit up, then slowly get to a stand (and hold on to him for a min or so while his balance "stabilizes" might allow him to feel more steady on his feet.

Actually - the "positional vertigo/balance issues" made me think of something else to have the doctors test as well .... It might be worth having them check his BP (Blood pressure) while laying down, then sit him up and immediately recheck his BP for changes (a drop in BP),then let him sit for a few moments, and recheck his BP again (see if it's come back up, if it dropped). Then after he's been sitting a min, quickly stand him up - and re-test the BP again (looking for a sudden drop).
While children tend to be less prone to major positional blood pressure changes (because they are smaller and the distance the head travels from laying to standing is 1.5' to 2.5' versus 5' or 6' in a teen/adult) - it DOES happen, and can cause all sorts of issues regarding mobility (because every time they transition from one position such as laying to sitting, sitting to standing etc 'the wrong way' they feel like they're going to fall over, feel light headed, may even get an intense headache for a few mins etc).

If he's generally meeting other milestones (fine motor, gross motor, foods, etc) then I wouldn't worry too much at this point ... every child is unique and provided they aren't universally delayed (holding their head, muscle tone issues espeically) then it's likely just "normal variations in milestones".
A very good personal example that might put you at ease is my own niece who is currently a 11.5monthes old - she has NEVER crawled (she can't even get INOT a crawl position herself or 'hold' the position if someone puts her into a "crawl". She also 'rolled over' MONTHS late, and has been completely unable to get herself to a sitting position without help and only did this for the FIRST time last week (at 11.25 months!!). That might sound " very delayed" except that she has been walking assisted (she'll hold our hands and RUN) for more than 3 months now and is wearing size 2T and 3T clothes (so her body length and weight was inhibiting her crawling and sitting until her arm muscles got strong enough).

Every child is different!


One thing that I would absolutely encourage is making sure that he's surrounded with language - personally (as a person who was born Hoh , and completely deaf on my right) I'm a major supported of Bilingualism (I live in Canada, so knowing and using 2 or 3 or more languages is a very typical thing). For those of us who are Hoh/Deaf, English and Sign Language (either 'pure' American Sign Language, or CASE/PSE which uses ASL signs in a more "English order") is a natural way to not only ensure that we have full access to language, but also all the benefits (mental development, social, cultural, educational, and economic) of bilingualism/multilingualism). It's also very important to do LOTS of reading and interacting with written words, books, flashcards etc.

TaylorJade - If you'd like to chat about anything, please feel free to PM me

 

[taylorjade.]

I have balance issues (mostly when I'm tired, ill, or in the dark - when my eyes can't help me out)

I would recommend, if it hasn't already been done asking for a CT or MRI - as they are the tools typically used to determine EVAS (enlarged vestibular aqueducts syndrome) which is one of the main causes of both hearing loss and balance issues.

I'd also encourage him to walk with various "push and walk toys" (toys with wheels and a grab bar like those shown here, that are meant to help with walking and balance - that way you can know for sure it's a balance issue and not a muscle tone or other issue (make sure the "walking bar" is one of the higher type if he's much taller than an average 12-18month old)

One thing that I find is "transitions" (sitting to standing, Laying to sitting/standing) are the most prone to exaggerate my balance issues (I also have low-ish BP so I feel "uneasy", and a bit dizzy when I get up too fast sometimes). Helping him sit up, then slowly get to a stand (and hold on to him for a min or so while his balance "stabilizes" might allow him to feel more steady on his feet.

Actually - the "positional vertigo/balance issues" made me think of something else to have the doctors test as well .... It might be worth having them check his BP (Blood pressure) while laying down, then sit him up and immediately recheck his BP for changes (a drop in BP),then let him sit for a few moments, and recheck his BP again (see if it's come back up, if it dropped). Then after he's been sitting a min, quickly stand him up - and re-test the BP again (looking for a sudden drop).
While children tend to be less prone to major positional blood pressure changes (because they are smaller and the distance the head travels from laying to standing is 1.5' to 2.5' versus 5' or 6' in a teen/adult) - it DOES happen, and can cause all sorts of issues regarding mobility (because every time they transition from one position such as laying to sitting, sitting to standing etc 'the wrong way' they feel like they're going to fall over, feel light headed, may even get an intense headache for a few mins etc).

If he's generally meeting other milestones (fine motor, gross motor, foods, etc) then I wouldn't worry too much at this point ... every child is unique and provided they aren't universally delayed (holding their head, muscle tone issues espeically) then it's likely just "normal variations in milestones".
A very good personal example that might put you at ease is my own niece who is currently a 11.5monthes old - she has NEVER crawled (she can't even get INOT a crawl position herself or 'hold' the position if someone puts her into a "crawl". She also 'rolled over' MONTHS late, and has been completely unable to get herself to a sitting position without help and only did this for the FIRST time last week (at 11.25 months!!). That might sound " very delayed" except that she has been walking assisted (she'll hold our hands and RUN) for more than 3 months now and is wearing size 2T and 3T clothes (so her body length and weight was inhibiting her crawling and sitting until her arm muscles got strong enough).

Every child is different!


One thing that I would absolutely encourage is making sure that he's surrounded with language - personally (as a person who was born Hoh , and completely deaf on my right) I'm a major supported of Bilingualism (I live in Canada, so knowing and using 2 or 3 or more languages is a very typical thing). For those of us who are Hoh/Deaf, English and Sign Language (either 'pure' American Sign Language, or CASE/PSE which uses ASL signs in a more "English order") is a natural way to not only ensure that we have full access to language, but also all the benefits (mental development, social, cultural, educational, and economic) of bilingualism/multilingualism). It's also very important to do LOTS of reading and interacting with written words, books, flashcards etc.

TaylorJade - If you'd like to chat about anything, please feel free to PM me

-- he had a CT and MRI before he had his surgery for his CIs , so i would hope that they would have mentioned anything abnormal but at this point i can't be certain that they havn't left anything out, they havn't been very reliable in that respect.

he has a few of the toys you mentioned and he loves to use them, his balance is fine when using them because i think he feels more supported compared to holding my hand which makes him feel safe

everything else, other than speech and walking, he has done very well with

thank you for all your advise, i will definately ask that someone tests him for what you have mentioned, he has also been scheduled for another full team assessment which will include a physiotherapist and such.

thanks to everyone else as well for taking the time to help me out

 

[deafdyke]

everything else, other than speech and walking, he has done very well with

Does he have hypotonia? Hypotonia is low muscle tone, which can inhibit walking, and can be seen in some syndromes. I didn't walk until I was two.
I wonder if having one copy of Pendred may have given him a "mosaic" form of Pendred. Or maybe the blood test indicated that the blood was mosaic for Pendred, but the ear tissue could have the full form of Pendred, and that's why he's deaf.
I know off the top of my head that speech delay and walking issues may signal mild LD. Then again, it COULD just be phsycial. He seems pretty smart right? I thought Sick Kids was supposed to be a really good hospital but seems to be kind of not exactly good.....didn't we have another poster who had a negative experiance with Sick Kids?
If I were you I'd contact your province's Dhh children's services. We have some Candian regulars.....maybe they can help you?

 

[jillio]

we just learned two days ago that he has one copy of a gene that causes pendred syndrome, they didn't give anymore information than that really so i've had to do much of the researching on my own,

i just discovered that this syndrome does cause balance issues, so i suppose that has contributed to him walking late,

i'm not sure then why all his doctors said it was just because he was deaf..
we just learned of this syndrome a couple days ago.

Doctors tend to blame a lot of things on deafness that aren't so.

 

[blank canvas]

he goes to daycare, but there are no deaf/hoh children there, and as far as i know at the moment there isn't much in the way of resources in my area for playgroups/support groups and that sort of thing for deaf/hoh children

Where do you live? If there is a Childrens hospital near you almost all of them have play groups for Deaf/HOH kids, if not maybe I can do some searching for ya

 

[taylorjade.]

no one has indicated to me that he has hypotonia, as far as i know from what his team of professionals have said he has nothing wrong with his muscles, or bones or joints or anything, they have all said that his balance is off simply because he is deaf, and have said that it will just take him longer to walk than hearing children.

he is very intelligent, he's extremely observant and learns everything very quickly, so i do think whatever is delaying his walking is just physical

Sickkids is supposed to be the best childrens hospital, and to be completely honest i don't think they are very equipped for dealing with children, at least not in the cochlear implant program. anytime we are there they seem ill prepared to distract him and keep him happy while he's there, he's basically expected (although they don't say this) to sit still and do what he's told, their toys are not helpful and they can never seem to understand that at some point he's going to get tired and fussy and not cooperate so just let us leave so he can sleep!

sorry i'm ranting a little again,

i have also heard of others complaining about sickkids.

--i live in Whitby, ON
Sickkids is all the way down in toronto and i don't drive but there is a Grandview Childrens Centre that he's involved with that is a bit closer

 

[Frisky Feline]

I agree with others that checking with other dr to make sure that your kid is all good. i was born profound deaf and walk at the around 11 month old. I was 2 yrs old and ran like crazy.

I wasn't sure if your kid just got a CI recently> My hubby got a CI a few years ago in his early 30s. All of a sudden that He got off balance since now. =/

 

[jillio]

I agree with others that checking with other dr to make sure that your kid is all good. i was born profound deaf and walk at the around 11 month old. I was 2 yrs old and ran like crazy.

I wasn't sure if your kid just got a CI recently> My hubby got a CI a few years ago in his early 30s. All of a sudden that He got off balance since now. =/

Same with my son. He took his first steps without help at 11 months. By the time he was 2, I was threatening to put him on a leash so I could keep up with him.

 

[Frisky Feline]

Same with my son. He took his first steps without help at 11 months. By the time he was 2, I was threatening to put him on a leash so I could keep up with him.

LOL my mom made my oldest sister to watch after me so mom can focus on other small siblings of mine. eh.. but i have a great oldest sister as the best babysitter though!

 

[jillio]

It's called vestibular balance problem and it is from a damaged auditory nerve, otherwise known as cochlear-vestibular nerve.

I have terrible balance problems because of this and know more than one other who do also. I also know more that one deaf person who have terrible problems orienting and walking in the dark because of it.

It is not at all uncommon.

Interesting. I have problems walking in the dark because I don't see well in the dark at all. Like, going down the back step in the dark...I can't see where it is exactly, and I feel off balance as a result. They told me it was a result of the MS.

 

[jillio]

LOL my mom made my oldest sister to watch after me so mom can focus on other small siblings of mine. eh.. but i have a great oldest sister as the best babysitter though!

That's wonderful. I bet you and your older sister are closer because of that.

 

[Frisky Feline]

Interesting. I have problems walking in the dark because I don't see well in the dark at all. Like, going down the back step in the dark...I can't see where it is exactly, and I feel off balance as a result. They told me it was a result of the MS.

Oh, I am not aware that you have a MS. When did you learn about it? My sis has a MS. She has been seeing tons of doctors for 10 yrs later until the final one the doctor said she has a MS. Now she is taking the proper medicine that helps at most of time, but not always. She is so relieved to know what was wrong with her and its over. now she is taking care of it. She is doing good so far. Thanks to the last doctor and medicine that is very helpful, not curable but helpful!.

 

[Frisky Feline]

That's wonderful. I bet you and your older sister are closer because of that.

Certainly.

 

[jillio]

Oh, I am not aware that you have a MS. When did you learn about it? My sis has a MS. She has been seeing tons of doctors for 10 yrs later until the final one the doctor said she has a MS. Now she is taking the proper medicine that helps at most of time, but not always. She is so relieved to know what was wrong with her and its over. now she is taking care of it. She is doing good so far. Thanks to the last doctor and medicine that is very helpful, not curable but helpful!.

That is about my story, too. I was diagnosed about 10 years ago with Fibromyalgia. A year ago, the doc I have now began to question that, so he sent me for an MRI that confirmed that it is not Fibromyalgia, but MS instead.
It is a relief to know finally what is wrong and what to expect. The good news is that I have the kind that will go into remission, so sometimes I don't have symptoms, and sometimes I do. You just learn to deal with the little things like balance being off and vision changes. It sure could be something worse!

 

[taylorjade.]

I agree with others that checking with other dr to make sure that your kid is all good. i was born profound deaf and walk at the around 11 month old. I was 2 yrs old and ran like crazy.

I wasn't sure if your kid just got a CI recently> My hubby got a CI a few years ago in his early 30s. All of a sudden that He got off balance since now. =/

his surgery was in august so idk if thats considered recently or not

 

[Frisky Feline]

his surgery was in august so idk if thats considered recently or not

Right after his surgery for a CI, and his balance has gotten so much worse. He still has bad balance to the today. Actually, He has a long history of vertigo since he was baby. His CI does not help to stop his tinnius or vertigo or headache at all.

 

[faire_jour]

his surgery was in august so idk if thats considered recently or not

I think it would be safe to say that there are situations in which the reason a person is deaf can also cause balance issues. But, they are certainly not always connected. If a child has a non-syndromic cause of deafness, generally they don't have balance issues. I would look into Usher's (late walking is a red flag for Usher's) and LVAS or EVS (those are the same thing).

 

[rosebee]

his surgery was in august so idk if thats considered recently or not

Here (Pendred Syndrome [NIDCD]) is the National Institutes of Health page on Pendred Syndrome.

It says that up to 40% of individuals with this syndrome will have "some vestibular weakness when their balance system is tested. ... Some babies with Pendred syndrome may start walking later than other babies."

I wouldn't worry at all. To me, it sounds like the same Syndrome that caused your son's hearing loss is also affecting his balance.