Increased tone in baby - Anyone have this and it didn't turn out to be CP?

[mamazack]

Hello there, I'm new here. 

My second baby was born almost 5 months ago and did not breathe.  Eventually he was resuscitated and was treated at a major children's hospital using the "cooling" protocol to prevent brain damage.  Long story short, when he came out of the cooling therapy sedatives, he did very well, began feeding really well and was quite alert.  He was in the hospital to recover for 3 weeks.  Most of this time he was quite sedated.  He had an MRI which was normal, so we were really optimistic. 

Fast forward to now....at almost 5 months old he is doing well in many ways, good head control, rolls from front to back, reaches for toys, smiles and laughs.  However he does have high tone in his body.  He is relaxed most of the time but if he gets excited, his arms will get stiff and he will make fists.  He can reach for a toy and open and close his hand and sit without support for a few seconds.  He is having some trouble reaching for toys up higher, but can aim for toys at his eye level.  He feeds very well.  Kicks legs, but sometimes they are stiff as well.  No scissoring of the legs, he can spread his legs apart.  He used to arch his back when upset and was treated for reflux...stretching has caused him to arch his back a lot less.  He is sleeping relatively well now compared to before.  He also had a lazy eye which is 90% better now.  So I guess I"m not sure, is this CP or is it possible he coudl have "tone" without CP, is there such a thing?  The neurodevelopmental team at the hospital said you can't tell for sure at this age, but that he has increased "tone" which they said could go or could stay.  But when I google all I see everywhere is CP.  I guess I"m wondering, did anyone have a baby with increased tone who didn't turn out to have CP?  We are starting Medek physiotherapy for him next week to have as early of an intervention as possible if it IS CP. 

Thank you, I really appreciate any and all input, this has been so stressful!

Edited by mamazack - 10/8/11 at 1:13pm

[KCMichigan]

*HUGS*

My DDs were born premature. One had high tone and one had low. Both got a CP dx around 16 months and did PT, OT off and on for the next 3 years.

Here is what we saw  in them as infants:

High tone: arched back (she does/did have reflux as well), stiffness in torso, arms, legs. Excitment or upset and she was like a board, mild delayed motor skills, stood before she could sit. We did not have scissoring, crossed eyes, or contractures.

Low tone: floppy baby, trouble focusing eyes, just seemed to 'melt' into your arms, frog leg position, moderate delayed sitting/standing/walking, extended fisted hands, trouble crossing mid-line

Both did Early Intervention and PT/OT as toddlers. Both did Feeding Therapy around age 2.

As they aged :

My High tone DD improved and actually was caught up gross motorwise by age 3.5 but still has a  few medical concerns. She has a dx of mixed muscle tone. She actually is fully mobile, plays on equipment, and seems just a bit clumsy/uncoordinated. She still does seem stiff when anxious or exciteded and continues to have 'high' reflexes upon exam. But looking at/interacting with her you would not see a difference.

My low tone DD also improved but more slowly. She had more PT and we did a lot of kinseo taping. She was on an IEP for PT/OT from age 3-5. Currently fatigues quickly, sits slumpy, and toe walks at at times. She drooled/poor oral motor control until she was about 3. She does not qualify for any services at this time, but it can be seen that she struggles to keep up with peers in stamina and coordination. She is able to run, jump, dance, etc.  She still has a  mild CP dx but you would have to spend time with her for awhile to notice differences.

Both DD had mildly abnormal MRIs- they could not predict what it meant, it was all minor changes.

Academically- both girls are very bright, verbal, friendly, and have done well in preschool/PreK.

They are both still followed by a neurologist and a few other specialists.

They turn 6 in Oct.

I hope , if you need it, you find Early Intervention helpful. Ours was WONDERFUL and I truly think made a big difference. It was scary when they were very small, but for us- it has been a wonderful journey full of great therapists and drs.

[mamazack]

Wow, thank you so much for posting this.  Your story brought tears to my eyes.  Your story sounds so similar in what we are experiencing and it gives me hope to see that your DDs are doing so well.  My DS sounds exactly like how you describe your hypertonic DD.  I am already signed up for early intervention and just waiting on them to call us. And in the meantime we plan to do Medek therapy physio so that we can start asap.  I am so inspired by your story and I'm sure all the work you do with them has helped so very much.  If we do get a CP diagnosis it is reassuring to see how much progress can be made with therapy ....

cheers to all the mamas who work every day with their beautiful children and all the blessings and lessons they bring to our lives.  And to all the babies and kids who go through the days so strong and with a smile on their beautiful little faces.  I can't even say how much I've already learned from this experience, I'm a totally different person now.

[devon]

My kiddo is hypotonic CP  (actually, sounds a lot like the PP kiddo with hypotonia and we've had great luck with kinesio taping as well).  He's been in OT/PT since 6 months (not for the "CP" diagnosis, which came at 18 months with an MRI, but because he has a genetic condition that also has hypotonia).

I know it's not the same, but try NOT to get hung up with the label "CP".  All it really is is a generic label - it doesn't "mean" anything because kids are SO varied in how they express their kind of CP.  For us...nothing changed when he got the CP 'diagnosis' because we had been already treating the symptoms.  I know this is easier said then done - I admit I was really, really sad when he got this label and what people would think about him.

I can't say ENOUGH about early intervention.  My son has made such great progress, it's remarkable.  He's 2.5 now and I'm really sad for the day when he ages out of First Steps (EI). 

Start the physical/occupational therapy with your kiddo and that's the best thing for him.  Let them treat the symptoms and not just the 'label'.