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Any ideas UPDATE

post #1 of 15
Thread Starter 
Hello,
My DS is 7.5 months old. He is currently in PT and OT for gross motor delays. Anyhow, at the PT eval, the therapist says she sees a few things
1) Newborn reflexes are still intact
2) Protective reflexes are absent
3) Hypertonic legs and toe standing
4) Either has all flextion or all extention of all extremities, cannot 'break them up'
5) Left sided weakness
6) Neuro consult pending

Any ideas or experience with any of this? I asked my peds for an impression after the eval and a few sessions and she will give it to me Monday. Until then...... any ideas?

Update:
Had the neuro consult. At this time, the neurologist had diagnoses Central Hypotonia. This means his low muscle tone is driven from CNS depression. His muscle tone is low, so this makes sense. His hyperextended legs are compensatory for the low tone. When she breaks up the hyperflexion, he cannot stand. He bends right in half and his legs do not hold him.
She says he will need to continue physical therapy, need to receive OT and probably speech therapy in the future. She says he needs lots of work to initiate any gross and fine movements, and for me not to look at developmental milestones, because he will not meet them.
We also have an MRI of his brain pending because his head growth had accelerated to off the charts in the last couple of months. I don't really think this is the issue at this time.
Yesterday he had a strange episode where he straightened out his arms and legs and shook, not grossly, but really finely, like tremors. Then he stopped. My husband and I both saw this and were like "What the heck was that?". I am recording this now.
I am calling Birth to three today. Thanks for the suggestions
post #2 of 15
Is his only issue a gross motor delay?
Was he born full term?
Were there any issues during his pregnancy, birth, or newborn period?
Is there a family history of anything?
post #3 of 15
Thread Starter 
He was born at 35 weeks, (unsure why...my other 2 were 40+ weeks,) no issues, never had to leave my room older sister has ASD, been in ST since age 2, does awesome! So far only gross motor thus far, maybe some fine motor now you mention it, as the PT had an OT consult because she was concerned about his grasp. Not sure about speech yet, he grunts to communicate, but does some "dadada" sounds
post #4 of 15
I imagine the neuro will consider cerebral palsy, may do a cat scan or MRI to look for any causes for the mixed tone and abnormal reflexes, and may refer you to a geneticist to consider something chromosomal if they feel there are other indicators.

What was the first sign of the gross motor delay? Are you in touch with Early Intervention Services in your area?
post #5 of 15
Thread Starter 
Cerebral Palsey was my gut instinct
My first inclination was the leg hypertonia, not rolling or attempting any type of locomation. The grunting thing is unusual too.
Thanks for your ideas
Haven't had the early childhood intervention out yet, as he is in therapy twice per week
post #6 of 15
Quote:
Originally Posted by by-the-lake View Post
Cerebral Palsey was my gut instinct
My first inclination was the leg hypertonia, not rolling or attempting any type of locomation. The grunting thing is unusual too.
Thanks for your ideas
Haven't had the early childhood intervention out yet, as he is in therapy twice per week
Our local AEA comes out for my daughter for numerous reasons. You may want to contact your local one as you may not have to pay for PT and OT. They send them out to our house and it does not cost us anything. Something to think about!
post #7 of 15
Thread Starter 
Thanks for the idea!
post #8 of 15
No problem! I love ours. they always come to our house so we don't have to travel, it doesn't cost anything, and they are all GREAT with my daughter. Plus they have a TON of services available so if anything else ever comes up they could help out with other things as well
post #9 of 15
Thread Starter 
We had birth to three with my DD, and the school district came along after age 3. Is a referal required?
post #10 of 15
Where I am you can self-refer, no dr referral needed. They did need a dr referral (or permission?) to start therapy, but not for the evals.
post #11 of 15

I know CP has to be hard to see someone else write. At least when my concerns were "spoken" by someone else it was hard.


I agree that the abnormal reflexes, mixed tone, one sided weakness, etc. is looking brain related.

I just want to mention metabolics too since you've got a sibling child on the spectrum. But with metabolics you'd see more than "just" brain related gross motor issues. I didn't see anything in your original description that made me think metabolics. I'm mostly throwing it out there because of your other daughter. http://www.mothering.com/discussions...d.php?t=734501
post #12 of 15
Thread Starter 
post #13 of 15
Thread Starter 
Update again
DS did his weird shaking thing at PT today several times. She said he is stimming I knew in the back of my head. DD (6), has an Aspergers dx and has sensory integration issues, but very mild. Anyhow, my PT said OT are the specialists in sensory integration. He has an eval today. He had an 'unofficial' one when we started PT because the PT though there was a need.
I asked the PT how much of his issues are sensory and she thought quite a bit. So I see hypotonia and sensory integration can go hand in hand? And is SPD the same as ASD? Or are they related, or can someone have a mix?
Ugg...thanks for any insight. I think I will start brushing him too.
post #14 of 15
I just wanted to give you a glimpse of a *possible* scenario 4 yrs out.

My DD was diax w/ gross motor delays at 6-7 months (she was preemie too) and then w/ mild CP Hypotonia at age 14 months. She had PT for 6 months. She had tortilcullis and a VERY large head (MRI'd and ok)

Then we also saw stimming/ASD ish behaviors (ear covering, low eye contact, high pain threshold, some hand flapping, overstimulated easily) and SPD. She had OT off and on from age 2 to 4. AT age 2 seh got a PDD_NOS dx as well. She toe walked exclusively for a year and now only does it now and then. She used to grunt to stim and only does it when tired---the 'everything in the mouth' phase is ALMOST over finally after 4 years....I never thought I would be able to stop saying 'dont put that in your mouth' 50x day! (now it is 1-3 max)

She hit gross motor milestones late, but always got them (walked at 18 mon, jumped at 3, learned to do a trike at 4, etc). We have been involved with her Neuro since her NICU discharge 4.5 yrs ago, he is great.

We did sensory diets, brushing, taping (for hypotonia), weighted blanket....etc.

Now she gets OT/PT through the schools at age 4 (IEP) for the mild CP & sensory issues. WE did EI from age 6 moth to 3 then went through the schools and private insurance.

I know that sounds like a lot BUT she is doing 100% better than 2 yrs ago....I NEVER thought we would get to where she is now. She is fully verbal, fully mobile ( fatigues easily and still hypotonic), friendly, sweet, sensitive, child.

She was fully included in a general ed PreK this year and is off to K next year with pull out PT and consult for OT.

Looking back , at age, 2 I never thought she would come so far. She could not handle the mall, crowds, bright places, got car sick, changes in routine and she stimmed a lot (although she has always been very affectionate and verbal).


Get involved in Early Intervention and if you can- private insurance (ours covered X amount of sessions a year). Our area even had a free summer program that we did for a week (ages 3 & 4). Hopefully your schools will be helpful too!

Our schools have been great. We anticipate that in a year or two she will be bumped down to a 504 plan (to met her sensory and low stamina needs) instead of an IEP.




I know in the early years I always wanted to think of what the future would bring....so thought I would offer our story. I know it is different for everyone.
post #15 of 15
Thread Starter 
Thank you! Your daughter sounds exactly like my son, even to the large head needing an MRI! I loved how well your LO is doing. Early intervention did come out and we will star the official evals next week. Just the intake RN came out today. We are still bringing him into PT twice per week. I really just want him to be the best he can be.
Can you please explain the weighted blanket and taping? I did brushing with my DD, so I do know that.
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