Sooo...EI was out here today to do a follow eval for DS (the main focus has been speech). They found that he has a very mild expressive language delay, but his receptive language is great/age appropriate. They don't feel that he needs direct speech therapy right now.
But they did seem a little concerned about his unsteady gait when walking and frequent tripping/falling. He's 18 1/2 mo now, and he just started walking at 16mo, but they said better safe than sorry (since its been 2 months with minimal improvement in his balance/steadiness), and suggested we see the pedi and ask about it. Well, the pedi is not overly concerned, and mentioned it very well could be just an isolated motor delay, as he is still young/newer to walking, and he isn't exhibiting anything abnormal neurologically, but said a Neuro consult wouldn't hurt just rule out any possible neurological causes.
Can anyone tell me what to expect? Of course im freaking out and thinking the worst and im just plain fucking nervous/scared. I just want this appt to be done and over with.
I wouldn't worry about it (easier said than done, I know!). Like they said, it is to rule anything neurological out. Most likely it is nothing, either he will continue to develop and catch up on his own, or maybe need a little physical therapy to push him along and strengthen things. It can't hurt. Sorry you are dealing with this stressful stuff!
@BluepointToasted thanks for the kind words. I'm trying my best not to worry about it, but I cant help but run so many "what if" scenarios through my head. Ugh. I just want my baby to be healthy and happy. EI is setting up a follow up PT consult to get him some PT in the mean time....I just want to get this neuro consult done and hopefully have some relieving news come from it.
I just really hope the pedi's hunch is right abd this just a simple motor delay that he'll end up catching up in time with.
triplea598 yep that's me - a neurologist is just one of our specialists
MrsT0514 - a consultation is nothing to worry about and it may actually put your mind at ease. For us, because of an unusual pattern in the blood vessels in my baby gal's brain, we've been followed by a neurologist since birth and had 2 MRIs done. Thankfully, the MRI didn't show any brain injury and she hasn't exhibited any neurological issues so this is more of a general follow up that we do. She's 11 months.
In terms of what to expect, the neurologist will most likely play with your baby, check muscle tone, check reflexes and ask you a bunch of questions on types of movements he makes. If he sees any areas of concern he'll order an MRI but most likely he'll probably just let you know that everything is fine. Our neurologist said that many kids have gross motor delays (my baby girl hasn't crawled yet) but that doesn't mean there's anything wrong neurologically so most likely your baby is just on his own timeline.
@AlejandraN2 thanks for sharing. Your anecdote is very reassuring and comforting. Glad to hear your DD is doing well and everything checked out ok! I am hoping and praying that we get nothing but reassurance from this appointment! Bc im a nervous wreck right now.
Eta also, like you mentioned about every kod having this own timeline, the reassuring part of our pedi appt was that she aaid "you wouldn't believe how many 18 month olds come in this office walking just like your son is, and by their 2yr appt, they're running down the hall!" She did say this type of thing os super common at his age, so I'm really just hoping this consult is to err on the side of caution and gives us some reassurance.
We have a neuro baby too - the exam will be NBD. I hope you get nothing but good news!
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Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress. Seizures, IVH grade 2, brain injury, kidney and liver damage. Complete blood clot in the artery in his right arm. 27 days in the NICU. Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely. My tough little cookie.
We just had a neuro evaluation the other day. Seems we are in similar situations. My son just turned 20 months and has no words. He also cannot walk, only cruise. The evaluation was super simple. We met for two hours and went over lots of questions. The doctors played with him, looked his body over and did some simple tasks with him.
They have decided for now all his issues stem from low muscle tone, even in his jaw which affects his speech. We do have pt and ot through EI and are just beginning speech as well. PM me if you have any questions.
@DarkTower I hope you dont mind (I am on mobile and PMs are a PITA for me to get to), but I have a few questions. If you feel more comfortable answering in a PM, no worries...just let me know and I'll figure out how to retrieve then on mobile
Did they determine a cause of the low tone? Did they need to do any additional testing/imaging to conclude low tone as the main issue? I'm terrified that they'll end up ordering all these tests/imaging. Whats the . Prognosis? Ive heard so many things about low muscle tone and whether or not there is a significant cause/impact and it can be difficult to navigate to through such a wide range of info. Though I have heard low tone can be more common than we think (a PT i used to go to saidnher DD had low tone and is now a perfectly healthy, active kid which is encouraging!).
I wish you guys the best of luck! EI has been amazing for us, so its great that your son is getting services.
No worries @MrsT0514, I don't mind replying here. We do not have a cause for the low muscle tone. The day of the evaluation they also did a blood draw to check his thyroid and muscle enzymes. Both tests came back normal. They did not do any imaging but I was really nervous we might need it before we went in. (I think that was what I was scared of the most) They suggested we keep up with our physical therapy and occupational therapy and add the speech component. We have a follow up in 6 months to see if he is improving.
I was told as well that low tone can be super common but it is still super stressful to be carrying around my 20 month old! Not sure if you have booked your consult yet but for us we had to wait almost two months for our appointment, might just be the area where we live.
Try not to stress too much, going through the whole evaluation was super easy and my son had fun because he played the entire time
@DarkTower Yeah we're in the process of booking the appt now. The pedi just gave me the number to the Neuro clinic at the children's hospital and told me to call for consult. Well the clinic apparently needs a referral from the pedi so I had to call them and have them fax it. Then I'm supposed to hear back from the clinic with a scheduled appt.
They said the wait time is based on the needs of each case. I'm hoping we dont have a huge wait time, bc my anxiety will be ridiculous until we get it done and over with!
DD was born at 35 weeks and had some delays. She was delayed in speech and didn't walk until 15 months (almost 16). She probably was still tripping a lot at your son's age. We were referred to the Dev Pedi at 15 months, for speech, she had maybe 2 words. He had no concerns about her speech, she didn't qualify for EI based on receptive, and wasn't concerned about her not walking. He did say she was hypotonic, mainly in her core, but that it was very common and he didn't recommend PT. He would have reevaluated her if she wasn't walking or saying any additional words by 18 months, but shortly after our appointment she made big leaps and caught up.
Around this same time we also went to a neurologist for an EEG, because she was having absent seizures. The neuro did an 'eval' after her EEG. Mainly he watched her walk, stand, and sit. Poked and prodded a bit, checked her pupils, and declared her fine.
Obviously it is good to get it checked out but my DD will be 4 in November and is completely fine. I have noticed that she is tends to be on the later end of milestones, but whenever I start to worry about something she usually does it soon after. She also doesn't tend to do learning stages, she just doesn't and then does (she wouldn't climb at all and then climbed a 8 foot ladder at the playground by herself). Your DS sounds similar to my DD, hopefully it will be similar, lots of worry about nothing.
My case is a little different, but I have taken my DD to a neurologist when she was about 7 months. Her pedi was worried about her fontanelles closing early. Pedi ordered a head x-ray and we took that to the neurologist.
I was super worried but the actual consult was great. Like PPs said the doc played with her and talked to her, examined her physically and asked a million questions about her development. He did some tests to see if she could sit up, support her head, reflexes etc.
He answered all of our questions very patiently and determined there was nothing wrong with her. Her head has been growing normally ever since.
Hugs to you, I know these things can be nerve-wracking.
@dashofreality wow. Almost everything you mentioned (minus the seizures), sounds like my DS.
He's been on te later side with a lot of his milestones, but once he finally does something, he does it like its nbd. The pedi also mentioned once that his tone was a little low, but definitely not enough to cause concern.
Glad to hear all checked out fine with your DD! I'm hoping to god we have the same type of outcome! But man, this process of evaluation/waiting for dr appts, etc is nerve wracking!
Our experience has been different as my daughter is older, 6, and was quickly diagnosed with an issue in the ER. I just wanted to say though that so far the neuros we've interacted with have been great. They're specialized and seem to have a bit more time, etc. And eval will hopefully just rule out anything neuro related. And if you're seeing one at a Children's Hospital that should be good.
Re: Anyone's kid had a neurology consult?
I just really hope the pedi's hunch is right abd this just a simple motor delay that he'll end up catching up in time with.
Eta also, like you mentioned about every kod having this own timeline, the reassuring part of our pedi appt was that she aaid "you wouldn't believe how many 18 month olds come in this office walking just like your son is, and by their 2yr appt, they're running down the hall!" She did say this type of thing os super common at his age, so I'm really just hoping this consult is to err on the side of caution and gives us some reassurance.
Did they determine a cause of the low tone? Did they need to do any additional testing/imaging to conclude low tone as the main issue? I'm terrified that they'll end up ordering all these tests/imaging. Whats the . Prognosis? Ive heard so many things about low muscle tone and whether or not there is a significant cause/impact and it can be difficult to navigate to through such a wide range of info. Though I have heard low tone can be more common than we think (a PT i used to go to saidnher DD had low tone and is now a perfectly healthy, active kid which is encouraging!).
I wish you guys the best of luck! EI has been amazing for us, so its great that your son is getting services.
They said the wait time is based on the needs of each case. I'm hoping we dont have a huge wait time, bc my anxiety will be ridiculous until we get it done and over with!
DD was born at 35 weeks and had some delays. She was delayed in speech and didn't walk until 15 months (almost 16). She probably was still tripping a lot at your son's age. We were referred to the Dev Pedi at 15 months, for speech, she had maybe 2 words. He had no concerns about her speech, she didn't qualify for EI based on receptive, and wasn't concerned about her not walking. He did say she was hypotonic, mainly in her core, but that it was very common and he didn't recommend PT. He would have reevaluated her if she wasn't walking or saying any additional words by 18 months, but shortly after our appointment she made big leaps and caught up.
Around this same time we also went to a neurologist for an EEG, because she was having absent seizures. The neuro did an 'eval' after her EEG. Mainly he watched her walk, stand, and sit. Poked and prodded a bit, checked her pupils, and declared her fine.
Obviously it is good to get it checked out but my DD will be 4 in November and is completely fine. I have noticed that she is tends to be on the later end of milestones, but whenever I start to worry about something she usually does it soon after. She also doesn't tend to do learning stages, she just doesn't and then does (she wouldn't climb at all and then climbed a 8 foot ladder at the playground by herself). Your DS sounds similar to my DD, hopefully it will be similar, lots of worry about nothing.
He's been on te later side with a lot of his milestones, but once he finally does something, he does it like its nbd. The pedi also mentioned once that his tone was a little low, but definitely not enough to cause concern.
Glad to hear all checked out fine with your DD! I'm hoping to god we have the same type of outcome! But man, this process of evaluation/waiting for dr appts, etc is nerve wracking!
Good luck!