[mallory4]

We are trying to make sure our 19 month old foster/adopt son is getting the right help. Our pediatrician referred us to the local children's hospital to see a neurologist, but the person who schedules neurology, after doing the intake, said he should be seen in the cp department because he has high tone, not low tone. On the other hand, his physical therapist has suggested that the high tone in some areas may in fact be oversompensating for low tone in others, so now we are really confused!

He was born full term and has been receiving early intervention services since 6 months of age, for what his pediatrician at age 4 months described as "increased tone in limbs".

He arrived in our home at one year of age and we have noticed several things about him that seem unusual. A friend whose son has cp suggested they might be signs of mild cp.

If any of you with experience would care to weigh in, I would appreciate it. We are waiting for the appointment with a developmental pediatrician and/or neurologist, but have been told we may have to wait as long as 12 months. I think we will relax if we think it is mild cp, since we know that isn't progressive, and that will make it easier to wait so long.

Here are the things we see:

His head is much much narrower in the front than in the back. Viewed from overhead, it looks like a pear. Viewed from the front, there is a noticable ridge running vertically down the middle of his forehead--kind of like he is half Klingon.

In all of his baby pictures, he is sitting with his legs rigidly straight out in front of him and his arms up in a kind of W shape with his hands held at about the level of his shoulders. His thumbs are often across his palms. His feet are often balled up. Currently, he has extremely upright posture and a slightly stiff-legged, awkward gait especially when running. Arms are still often in that w position.

His torso and abdomen are almost always rigid and taut, even when he is just relaxing in my arms at lullaby time. He has very high tone in all of his torso muscles, especially the muscles that run down the front of his tummy.

He walks on his toes for a few minutes several times during the average day, especially when he is excited. He also "locks" into positions with his legs that you can't easily get him out of--like he will lock them in a sitting position and therefore you can't get him to stand up. Or, when you are holding him on your hip, his legs feel like he has you in a wrestling hold--almost everyone who has ever picked him up comments on how tight his leg grip is.

He does odd things with his hands when he is excited. Either he twists his first two fingers together and his hands tremble, or he bends his arms like chicken wings and his two pointer fingers point at each other while his arms tremble rigidly. This happens, for example, when he sees me get his favorite foods out of the fridge. He also flaps his hands at times like these.

He tends to breathe very heavily and drool when he is concentrating on a task like building with blocks or doing a puzzle.

He is delayed in speech, and does not make a full range of consonant sounds, although his comprehension seems fine. His eye contact and social skills are fine, his attention span is fine, his fine motor skills are fine.

He is a very happy guy, and we want to provide him with the best care. Any opinions about whether we should turn to a developmental pediatrician or the neurologist or the cp department?

[Withay]

Mallory4

I just stumbled upon your post (it's 4:00 AM and I've been up since 1:15 with the babies and now can't sleep).

In reading through your sons symptoms everything seems to point to cp, until you said "his fine motor skills are fine". I've never known a cp patient to have good fine motor skills.

Have you been able to have him seen by a pediatric neurologist or a specialist in cp yet? That would be my recommendation.

Blessings,
Lynda

[mallory4]

Double L, thanks for the reply. R has changed a lot in the months since I posted. We still haven't seen the pediatric neurologist since the wait time here is 18 months plus, and most of his "symptoms" have disappeared--he has seen a neurosurgeon about his head shape, though, who said it is a bit odd but not a health concern, just a cosmetic thing.
I am finding it hard to believe that the kind of rigidity he had could have been from stress (my guess) or being in a carseat too much at his prior foster home (one OT's opinion) or prenatal drug exposure (the other OT's opinion!) but I have to admit that he is like a different person, physically. He is now on target or ahead of all the developmental goals (especially fine motor--one of his favorite activities is putting those tiny Battleship pegs in the holes on the game board!) and he only breathes heavily (no drooling) when he is really trying something hard. So we are watching and waiting.
Thanks for your informed reply--looks like you are right!