Chiari Online Support Group

Post surgery toddler

#1

Hey all,

My 30 month old had the decompression surgery 4 months ago. She was diagnosed with severe global developmental delay and chiari type 1 when she was 18 months.

The positives of the surgery are… Her wound has healed…her head banging has gone down a lot… She has started walking without help… Her tremors while standing or stacking has gone down… She seems to be more vocal… She seems to understand more… Is more friendly with ppl she knows.

My concerns… She is not expressing herself verbally or with signs even when she is hungry or in pain… She doesn’t seem interested in social gatherings, doesn’t care about who is around her… More scared of new ppl, places, pets, crowded House (she seems to like the mall)… Scared of ceiling fans.

Am not sure if I should be concerned of these things but am unable to get her to cooperate for any therapy sessions… Has anyone else gone thru something like this… Can anyone guide??

#2

I would search your area for a "home-based" therapist or worker. ((This is what I do.)) Often times people and children are more comfortable working on their troubled areas while they are in a safe place, like their own home. A therapist in the home can teach YOU how to approach her troubled areas as well as develop rapport with her so they can have a trusting bond. For a child of her age, with so many delays, she seems to have made great strides. Decreased head banging, independent walking, decreased tremors, etc. are GREAT BIG strides to make in 4 months!

For your concerns-were these a problem before the decompression as well or are these new phobias? I would be concerned if she's developing new concerns without an obvious trigger (like having got her hair stuck in a fan or something.) If they occurred before the surgery, I would just suggest small strides and continue using positive enforcement. She may also developmentally be at the stage where children are scared of strangers--(this is not always a BAD thing! If she has developmental delays, being fearful of strangers is much greater than having an over-abundance of trust for them!)


Talk to her doctor and call your local Job & Family Services center (sometimes the welfare office, children services, etc. and ask about "home-based supportive services" or other in-home therapies. You have every right to worry, but you also have every right to be a SUPER PROUD MOMMA!

#3

thanks Abby for the vote of confidence!

Abby said:

We have had some of our young ones, have surgery. All I have heard of are doing very well and thriving. Your daughter sounds like she is doing a lot better. So thankful for that.

Some kids just don't like crowds or much of what you said. My girls were scared of things until they got use to being around them. I'd say she is doing pretty well.

The therapist will know how to handle her and will not push themselves on her, until she trusts them.

Your a great mom and please know your doing everything right. You are allowed to go with them to make sure for yourself and learn how they do therapy so you can also do the therapy at home.

Hugs to you both

#4

Hey... thanks for the idea... I do feel proud when I see her do something new!

I did look for such services in the area... I have found one and I am in the waiting list for the service. Maybe this will make therapy easier.

Come to think of it, my lil one was always a careful baby... she was always scared of something or the other... ceiling fans were one of the first few fears that she had. So hopefully she will get over that in time... There are few things that confuses me like, as a baby she was never scared of loud noises but lately she seems to close her ears when she hears loud noises... it might just be the realization that she hears less if she closes her ears... but these kind of things scare me because the pediatrician initially suspected autism and they say that only closer to 3 yrs autism becomes more and more evident. Not that I can do much if she has any other condition but never the less it scares me!

well... pouring my heart out in here helps!!! :)



BestFriendsGoFishing said:

I would search your area for a "home-based" therapist or worker. ((This is what I do.)) Often times people and children are more comfortable working on their troubled areas while they are in a safe place, like their own home. A therapist in the home can teach YOU how to approach her troubled areas as well as develop rapport with her so they can have a trusting bond. For a child of her age, with so many delays, she seems to have made great strides. Decreased head banging, independent walking, decreased tremors, etc. are GREAT BIG strides to make in 4 months!

For your concerns-were these a problem before the decompression as well or are these new phobias? I would be concerned if she's developing new concerns without an obvious trigger (like having got her hair stuck in a fan or something.) If they occurred before the surgery, I would just suggest small strides and continue using positive enforcement. She may also developmentally be at the stage where children are scared of strangers--(this is not always a BAD thing! If she has developmental delays, being fearful of strangers is much greater than having an over-abundance of trust for them!)


Talk to her doctor and call your local Job & Family Services center (sometimes the welfare office, children services, etc. and ask about "home-based supportive services" or other in-home therapies. You have every right to worry, but you also have every right to be a SUPER PROUD MOMMA!

#5

Hey Vanni i know what you are going through as my 5yr old is too delayed and has an undiagnosed syndrome. At the age of 3 he was diagnosed with chiari and syrinx he doesnt speech so we dont reallyknow what he is going through.we are now waiting for the decompression surgery. did your child have symptoms?

#6

Hi Donna,

My daughter symptoms were mainly the delay… And we started enquiring further. The MRI was done mainly to eliminate cerebral palsy but they found chiari.

Looking back, the head banging was a symptom… Maybe she had headaches and banging gave her relief. As you say because they don’t talk you really don’t know what is going on. She would shake a lot even when standing or sitting still.

She has come a long way after the surgery… Shaking has stopped, head banging has stopped, She is making a lot more efforts to communicate… Not talking yet but vocalizing a lot.

When is your son’s surgery planned for? I believe the decompression surgery really helped her improve.

#7

Dear Vanni
Thanks for your reply. It breaks my heart with seeing our special children unable to communicate so they end up suffering alone as we dont understand them. Coming to think of it my son bangs his head alot so it might be related and another thing we have noticed more lately is dysphagia thats difficulty with swallowing. Since this operation is not done in my country he is being reviewed by a neurosurgeon in the Uk so now we are waiting for the arrangements to be done to have him operated there. Did your daughter take a long time to recover and do you think it helped with the delay? The other problem we have which makes matters worse he has an undiagnosed syndrome which has been investigated since birth so the Dr is not sure where his symptoms fall under

#8

Dear Donna,

Yes, it is heart breaking to see them unable to communicate & when we have to guess hoping one of the guesses is right.

My Dr here, thinks that my daughter might have something else too... but at this stage we are not sure what it is. Looking at the genetic testing & few more assessments. I am just hoping to get an answer so we can start working towards a cure.

Kids recover very fast from the surgery. My daughter took about 2 weeks to start moving around in the house. I feel it definitely helped with the delay.. She started walking about 3 months after the surgery and vocalising a lot more.

The neurosurgeon we met with the MRI revealing chiari he didn't hesitate suggesting surgery... He said they will have to do a surgery at some point & the sooner the better. You are based in UK is it?

#9

We live in Malta and the surgeon from the Uk comes here twice a year to review such cases. At the moment my son has been hospitalized since Wednesday for severe vomiting and i thought it might be related to chiari but today it was confirmed its a virus. We too are going through genetic and because resources are limited in my country its all being done in Italy and Uk. We have been told that my son has a syndrome that has not been discovered. We knew that something was wrong from birth as he looked different. It seems we have many things in common. Thanks for your replies as i have been very discouraged. Where are you from?

#10

Dear Donna,
Yes, it is heart breaking to see them not able to communicate like others & when we have to guess hoping one of the guesses is right.

My Dr here, thinks that my daughter might have something else too... but at this stage we are not sure what it is. Looking at the genetic testing & few more assessments. I am just hoping to get an answer so we can start working towards a cure. My daughter also seems to have some un-diagnosed thing at this stage

We are based in Sydney, Australia