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New head tilt? and general help about my mystery daughter..
Im pretty upset about this bc my PT said she had never seen a headtilt appear in a toddler. My DD's head now tilts to the left about 8-10 degrees (according to her PT). SHe is drooling headvily out of the left side of her mouth too and has been for months (she's 17.5 months old and yes, she does have a mouth full of teeth) The head tilt is new an pretty unmistakeable. I see it every time I look at her now.
She is somewhat low tone all over, especially her ankles. She can walk and she can talk, but her speech is slurred and, even though she has been walking for almost 6 months, she has never run. We thought Autism (havent offically ruled it out bc of her age but hope to soon), then Cerebral Palsy, and this new head tilt has thrown us off. She has sensory issues and constipation(until we changed her diet after we also found out she has a mild milk allergy and a moderate egg allergy. Also took out gluten.) which were some ASD symptoms but I have now found they are CP symptoms also. She has a large head, zones out a lot,possibly some small muscle spasms, she learns new words weekly and has about 25-30( plus a few animal sonuds and signs) she uses regularly correctly on her own and she can repeat about 100 back, and babbles constantly, she has great joint attention, social, points, waves, claps, typical receptive language(according to her therapists).... What could it be?
What do I do now?? Her pedi office said over the phone to go to a geneticist and we have set up that appt but cant get in for a few weeks. In the meantime, im terrified this is something degenerative. Any insight?
Thanks so much for listening to a scared mommy ramble...
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Re: New head tilt? and general help about my mystery daughter..
First off, your dd is a doll, love her picture. Love her name too, my dd's name is Abigail! I don't have much experience in the area, but my first instinct would be to get her in to see a developmental pediatrician and a nuerologist.
I am sorry you are having to go through this. It is so hard when you don't have answers.
I should have mentioned that we went to a dev. pedi about a month ago, but she did not have this head tilt there. He said she's not autistic. We have also been to a neuro (pre- head tilt) and had an MRI which showed nothing. We see the dev pedi again in about a month for the follow up and I will definately mention it to him.
I dont know abot her infant reflexes being integrated...the neuro did not like her reflexes, that is why he did the MRI. The reg. pedi was ok with them, and the dev. pedi said they were mildly odd. I dont think her neck is tight, she is just holding her head off center.
thanks!
Did her slurring start when the drooling and head tilt began? I know that is hard to answer since her speech was probably emerging around that time. Is her muscle tone slack throughout the left side of her face, or just her mouth?
I think you are doing the right things-- keep following up with the doctors on your team.
I really dont know Flora...Like you said, that's when her speech was just emerging...
And about the face, I've been watching this like a hawk for the past 24 hours. I dont know if if my imagination of what but I think yes, ALITTLE BIT. Its alittle more lax on that side of the face...are you thinking stroke?
Let me preface this by saying I have no medical training-- at all. I have read that loss of muscle tone on one side of the body, drooling and slurred speech are possible stroke signs. However, I don't know anything else and I sure don't want you to start worrying about something that might not even be a possibility.
I know there are some moms on here whose babies have had strokes, so maybe they can speak more to what symptoms they have noticed. But again, I am completely not an expert at anything medical and have no experience with strokes.
Sorry if this is overkill. I just would hate to death to have you worrying all night about that possibility because I put it in your head.
Tara- thank you for the link
I went hard core at early invention and she loves it so we keep going. We are in PT,OT, EI, ST, and even music therapy although we are thinking of dropping music bc it's getting to be alittle too much. She was non verbal and didnt clap, point, or wave at 13 months.
Flora- I appreciate your honestly. I can tell you know what it feels like to not sleep at night bc of worrying. I am going to look into the stroke possibility. Im taking ALITTLE comfort in knowing that if she did have a stroke, it did not seem to effect her cognitively. I just want to prevent future strokes. I had preeclampsia, and I always wondered if she had a stroke in utero...but I cant imagine it would just show the physical signs on her head and drooling now? Could the zoming out be related to that?
I was afraid of needing another MRI. Man the last one was a NIGHTMARE too. Argh.. I hope it doesnt come to that but I will do it if we need to.
There was no seizure activity on the MRI(not really surprising) but Im thinking about doing the 3 day EEG like my neuro suggested (he does not know if she's having seizures, he just said that we can do the eeg if I wanted to, to see if she is having them) Poor kiddo has been through so much but I know that's probably what needs to happen.
There was no seizure activity on the MRI(not really surprising) but Im thinking about doing the 3 day EEG like my neuro suggested (he does not know if she's having seizures, he just said that we can do the eeg if I wanted to, to see if she is having them) Poor kiddo has been through so much but I know that's probably what needs to happen.
oh opps-also about her midline- she seems to do ok with this- although I havent thought a ton about it, I would have noticed right? Will look into that.
And thank you all for being so helpful. Please keep any insight coming and thanks for the compliments. She is a huge joy to us.
You know my thoughts. I'd goto the geneticist with a list of everything she's doing & not doing that you see personally. I'd also write down your concerns, what you've looked up, etc.
I go slow. Take it one step at a time and try not to get to ahead of yourself & your worries. I know that's easier said than done, but try. It's worth it to keep some of your sanity.
You can email me anytime. You know that. Hugs chicky.
Have you ruled out eye issues? If not, I would also go see a pediatric ophthamologist.
Head tilt can be caused by focusing issues. If she is having problems with balance, that could be why she isn't running. The eyes supply the brain with a lot of info about where you are in space. If one part of your vestibular system is out of whack it would affect you developmentally as well.
The MRI would not show seizure activity. You would have to to an EEG. Keep in mind though that the EEG may not catch anything and it may catch stuff that would run you around in circles for no good reason. ie: odd spikes or slow down in brain activity that are not seizures...Good Luck.
Heart you.
We have been to a pediatric optomitrist and pediatric opthamologist. The optomotrist didnt say much and the opthamologist saw what I was talking about (eyes at times moving in different directions) but said it was common at this age and very mild and they do line up when focused. He asked to see her back at 2 years old....
yeah im VERY hesitant to do the EEG. It's extremely difficult on her, it's not always accurate and in general just a pain in the butt. What I have been trying to do is catch one of her spells on video even though that's not always accurate either... I dont really know what else to do..
I thought about seizures as well, reading your post. The "zoning out" could be absence seizures. As a possible intermediate step to doing the EEG, could you try to video tape her when she's zoning out and when she's tensing her muscles (basically anything that seems unusual) then show the videos to your neuro? He might be able to rule the possibility out that way without having to do the EEG.
Good luck - I'm sorry you're stuck worrying without any answers!
Can I ask why you are hesitant to do an EEG? It's absolutely painless, although it is a PITA to get the child to relax and not pull the leads off, but the techs are really good at what they do. Jayden has had 3 done and honestly, they are not bad. Maybe you are confusing the EEG with the MRI? Jayden has absence seizures, but I couldn't rely on a video camera unless I was recording him 24/7 b/c there was never a warning and by the time I got the camera out to record, it would be over. I really think you should consider an EEG just to rule out seizures. Good luck!
And Elias Parker, Born 3.5 weeks early 12/20/2011
FINALLY!!! After 7 years of infertility!