Chiari 1 Malformation and Social problems (19 month old girl)

[kskirk]

My daughter is 19 months old and I think she has Chiari (has an older brother with Chiari and has had 2 decompression surgeries)  I was wondering if anyone's babies have been not socialable.  Both my son and daughter really dont want to be held, they would rather be in their cribs ALONE :(  If we bring her around us 80% of the time she will scream untill she gets put back in her crib.  I have a total of 4 children and only my son that has already diagosed with Chiari and my daughter who I think might have it, act this way.  My daughter also like my son did not walk till they were 15-16 months old and have some issues eating and pooping and have sreaming fits that you can not do anything to get them to calm down they also have large heads which are flattend in the back and both had toticolis.  I have talked to her dr and I think I can get an MRI but I have never read anything on babies acting like this, So please help me if you can, I just want to see if this can be another symptom or could it be something else.  Dont want to put her though anything I dont have to.  Thank you!!!!

[kskirk]

Because our Chiari Dr. is almost 3 hours away, Her reg. Dr. ordered the MRI and only the radioligist read it and sent the report to her reg. Dr.  I do have a copy of the scans but not the report yet.  And think I will have some else read them. My son goes to his Chiari Dr. in March and I am going to see if he will look at them.  Thanks so much!!!!!

[selmaS]

  Hi...there r a couple reasons they may be saying the MRI is "normal"...one could  be that the tonsils r not herniated beyond what ever they consider the criteria for  classification for chiari many use 5mm's...while others do not consider it at 7mm a concern....

Next, was this a chiari specialist that reviewed the MRI? And is that what they were looking for?

DO u have copies?If not, request them along with copies of the report....

  If this is the same Dr that dx'd ur other child, I would ask them what could be causing these symptoms/issues if it is not chiari.....

  The best advise is to get a 2nd opinion.

         "selma"

[kskirk]

Well, Sammy had her MRI today and it came back normal. :)  How ever what do you do if you know something is not right.  I know now this is not a Chiari issue, but were do I turn to now!!!!  There are too many delays, she had abnormal EEG, and she gets over stimulated.  And many more little things.  I look at the MRI and there looks to me to be some odd pictures. Could a radioligist overlook something if they are only looking for one thing?  I am sorry, I am happy but yet I feel like something is not right.  I have 4 kids 1 with chiari, the other 2 seem to be fine, and then Sammy seems to be just like my son with Chiari.  And now they say she does not have it, which is a great thing but then to me I want to know what is going on with her.  Well thank you all for your time, advise, and letting me vent. I will keep you all in my prayers and if you would do the same for my family and I.  Thanks again. <3

[kskirk]

The Dr. called and could not get her MRI untill Feb 13th.  So I will let u guys know then.  thanks again to all.  U guys are a blessing to have. :)

[linnielou232]

I'm glad it won't be long until you have the test.  It's the knowing that will help make thing's a little easier.  Your in my Chiarian heart.   :)

[selmaS]

  Good luck on Monday!!

[kskirk]

They are odering an MRI, I will know Monday when it is......  Thanks again for everything guys:)

[kskirk]

Thank you, I have an appointment on Friday at 11:40.   I will keep u updated. Thanks again to all.

[linnielou232]

My heart goes out to you and your family.  I can't inmagine watching my child go through this and being so young.  Selma said it perfectly and it makes since.  I was alway's a social butterfly, but since my surgeries and etc.  I now find myself in a corner where it is more quiet.  Noise, lights are really a bother with Chairi.  I wish you and your family the best.  Let us know what the NS say's.  Your in my Chirian prayer's

[kskirk]

Thank you and your mom for the info, I know every child is different so thank you.

[kskirk]

Thank you so much, we are calling the dr tomorrow and will let you guys know.

[kskirk]

In wanted to thank you for your advice, Both my husand and I thinks that makes sense :)  I am calling her Dr tomorrow to see when we can get an MRI.  I will let you know.  Thanks again to take the time to answer me.

[selmaS]

  Aww thank her for me....that is sweet ...I am glad I was able to verbalize what she and u felt...and could understand...sometimes I am not that sure...

[drewlevas]

I am at my mum reading this post. And she says that she remember me putting my head on the table or trying to bang it on, it screaming when I was a toddler. Now she is wondering if they didn't got my autism diagnostic all wrong, and that it was probaly Chiari acting up already back then! She says Selma that you should write a book :) , it's her way to tell that you said something the way she would like to put it (about the pain).

[cash242]

I am a pediatric occuaptional therapist and my first thought when I read your post was that she probably has some sensory integration issues which would definetly go with all of the other stuff. You may bring this up to your pediatrician. I know as selma stated when I hurt I go in a quiet rom and don't like Noise. By her staying in her room this is a way for her to decrease her sensory stimulation. Let me know if I can offer any other advice good luck..

[selmaS]

  Hi...this is very typical of a child that is having issues with GERD/acid reflux...they tend to have these eating and bowel issues and it is a symptom of chiari.....

The delayed social skills and development is also typical in symptomatic children...they can  not describe to us how they feel...and being an adult, I have a hard time describing the pain or sensations this condition leaves us with...so a child that has not formed verbal skills will use other means to get across how they feel.

I was accused of being anti social...as I would avoid crowded areas when we had gatherings as it was too loud, and the lights..and just so must going on it was too much all the way around so I would find a quiet corner to avoid most of it....ur child knows when they r out of the crib it is too much stimuli for them to deal with and that may cause them more pain.....

I would consider having her tested ...but u may want to talk to a specialist to see what they suggest...I am just a chiari patient...I do have a sister that works getting services for infants and toddlers with developmental delays so I am familiar with them....and I do know having chiari can add to this.


In the meantime so u can spend time with ur DD...only take her to the floor outside her crib and keep the lights off, and do so in a quiet manor...just lay there with her and a toy...not a lot...just one or 2 at the most....and see if u can slowly show her that u can interact with out overdoing it and see if she responds.

  Good luck and do keep us posted

     " selma"