Re: News re Daughter's MRI - Advice Needed

[Guest guest]

Hi Theresa, I am not a doctor but I can tell you that my son started

speech therapy at 25 mos. and it helped him alot. He wasn't

diagnosed with apraxia until later. A good SLP can also help with

getting the diagnosis because thats where my son's diagnoses

originated and has since been verified. I am of the opinion that

it's never too soon to start because really it can't hurt anything.

When weighing the risks against the benefits there really aren't any

risks (other than financial)because even if she's getting PT and OT

its an altogether different thing so its not like she will be

getting too much. Anyway good luck, it really sounds like your Lulu

found a great family with you. Take care, Jill

[Guest guest]

---

Theresa!!! oh my word! you just described my son to a tee. He walked

so stiff and arms in the air for soooo long. He started walking at26

months and now at 33 months his hands are finally down at his side

most of the time. Taft was dx with motor apraxia by the neuro but a

professor who analyzed his video thought Taft has sensory ataxia

(ataxic cp) after reading a little about it I agree. My son had a

normal mri but apparently with mild cp it rarely shows up. He is

actually starting to say lots of words (although they are very very

hard to understand) I just wanted to throw it out there. The second

theory we have is gluten ataxia. we took Taft off gluten six weeks

ago and thats when his hands really came down to his side. He

alternates feet on stairs if we hold his hand and he has just made

remarkable progress all around. His delays did not start until food

was introduced but I just wante to throw that out there as well as

it is a contributing factor in many neurological conditions. Hope

that helps just wanted to say that IT is a long road we were further

behind physically when Taft was 23 months and at 33 months he has

come so so far. hang in there.

Steph

Ps. My son is socially just how you described your daughter. I

believe there wonderful personalities are the most important thing

of all in the long run.

[Guest guest]

My son, now 26yrs. had craniosynotisis at birth, in fact the worse case the

doctor had ever seen. It is quite repairable and it was repaired at three

months. Today, however, my son is diagnosed with PDD/Autism and I believe

he has apraxia. We are headed back to the neurologist this month for me to

discuss this. This is our hurdle, not the craniosynotisis. Take care. Pat

in Pa.

Theresa wrote:

I thought I would take this opportunity to share with you all some good

news

> about our daughter Lulu's MRI and head circumference/craniosynotisis

scare.

> I'd like also to ask 4 questions because we still don't have " diagnosis "

and

> apraxia of speech/global apraxia are the only things that have as yet been

> mentioned as possibilities. Here are my questions up front. A synopsis of

> the neurologist's review follows.

>

> 1. Can anyone tell me if it is regular for a pediatric neurologist to NOT

> diagnose apraxia of speech and global apraxia (not oral apraxia, he ruled

> that out at the first appointment) until above the age of 3? Our doctor

> thinks that this is a possibility, but said he never diagnoses apraxia at

> the age of 23 months.

>

> 2. What other kinds of doctors or specialists would be able to diagnose

> apraxia, particularly at the age of 23 months? Is it just an individual

> preference of this neurologist, or are neurologists more attuned to and

the

> " hard signs " of brain structure and neurological damage, than to the " soft

> signs " of behavior and developmental ability? Would a pediatric

> developmental psychologist or someone like this be better equipped to read

> the subtle signs of my daughter's behavior and speech? Or do we also need

an

> SLP to help in this, someone who really knows speech problems inside-out?

>

> 3. What kind of doctor would be best to " lead " our team? A developmental

> psychologist, a developmental pediatrician, a speech and language

> pathologist, a family therapist, all of the above? I am leaning toward

> having a developmental psychologist lead the team, with an SLP and family

> therapist as seconds. I know that there is a family therapist in Amsterdam

> who studied for several years with Stanley Greenspan and has just

translated

> " The Child with Special Needs " into Dutch. He uses Greenspan's DIR

> evaluation methodology. However, he is a family therapist, not a " doctor. "

> Any good tips on who should lead the team of specialists, doctors and

> therapists we will put together?

>

> 4. Our neurologist says that 23 months of age is too early to start speech

> therapy and that we should wait to see if she develops language naturally,

> particularly given that she was institutionalized in an orphanage and was

> premature/small for dates. I suspect that other specialists may disagree.

> Can anyone help us with this? Lulu is, in the Hanen typology, a very

social

> communicator, but she has no intelligible words, no babbling, no

syllables,

> no consonants other than those she has recently begun blurting out with

the

> supplementation with fish/borage oil. She does have many vowel jargoning

> " words " -- such as: " eee " for both eat and see; " i-ee-oh " for both

tricycle

> and video -- but nothing that is intelligible to a stranger. There is

often

> a sound groping in her attempts at most of these multi-syllabic words, so

it

> doesn't always come out the same. I think that even help with pre-verbal

> elements of speech and baby sign language or PECs would help reduce her

> frustration level. Any ideas or suggestions?

>

> So here's what the pediatric neurologist told us:

>

> This week, our pediatric neurologist, Prof. Shapira, told us that Lulu has

> no brain pathology that he can detect with an MRI -- no brain damage, no

> infection, no abnormal brain development, no abnormal growths, no brain

> atrophy, no craniosynostosis. Her brain structure and development looks

> very good.

>

> Professor Shapira said that while her head circumference is around 2

> standard deviations below the norm (often a cause for concern), this does

> not spell a poor prognosis for her cognitive capacity and development.

> Again, her brain structure and development looked normal. Indeed, he has

> read in the literature of people who have head circumferences 5 standard

> deviations below the norm and whose intelligence was above normal. Head

> circumference can be genetically determined, or can be the result of many

> other factors. These " other factors " appear to him to not be the case

with

> Lulu. Thus, she may simply have a genetically determined small head which

is

> normal for her. We cannot know that because we do not know anything about

> her biological parents (she was adopted).

>

> We do however, need to get therapy for her due to her severe delays -

> physical (she still walks stiffly and with hands up), occupational and

> eventually (he suggests a bit later on) speech/language. In particular,

he

> focused on the fact that her play is very rudimentary (banging things and

> throws -- no block stacking, no shape sorting, no putting things inside

> other things, etc). He said that there needs to be an emphasis on

> occupational therapy to help her learn various kinds of play along with

the

> day-to-day activities of eating, drinking, dressing (she can get the spoon

> in her mouth but can't dip, has a hard time with a sippy cup, doesn't help

> put on her clothes, etc), and to help her with her short attention span

and

> roaming behavior in play (not in other things, like reading a book --

she's

> got a good attention span there, with no hyperactivity that we can see).

She

> needs a great deal of work in this area.

>

> Professor Shapira suggested for the second time that Lulu may have apraxia

> of speech and global apraxia. However, he doesn't make a diagnosis of

> apraxia at the age of 23 months. He waits to see how the development

> progresses, and thus would not give a diagnosis of apraxia until after 3

> years old or older. There is still the possibility that Lulu is a late

> talker, walker, block-stacker, spoon-feeder, etc, and that with the proper

> therapeutic intervention she will progress. Thus, he suggests therapy and

> monitoring.

>

> Professor Shapira also said that Lulu's social skills are her strongest

> point, that she has amazingly strong social skills, and that this is why

> everyone is so drawn to her.

>

> So... very good news about the scarier possibilities we were facing

> concerning craniosyostosis and brain damage, but still a lot of work and

> waiting ahead of us and no diagnosis or real insight into what areas are

> challenging her.