Re: News re Daughter's MRI - to STEPH

[Guest guest]

Dear Steph,

My goodness! Thanks very much for this. So.. can you direct me to any

resources on this?

What was it? Sensory ataxia? Gluten ataxia? What is ataxic cp? Cerebral

Palsy? I don't like the sound of that, but this is an exercise in all kinds

of learning and understanding and coming to terms, so we will face whatever

comes.

Josie has suggested I try the GFCF diet. Lulu does have some milk

intolerance, although we feel she's largely conquered it, perhaps it is

affecting her in ways we can't see. Did you do the GFCF or just gluten free?

Who suggested that you do this? Your doctor? What kind of doctor was it? A

DAN doctor, or someone else?

Did you try ProEFA or some other kind of omega-3/omega-6, or any other kind

of supplementation? Do you feel that it was helping him? When did your son

begin to try to speak?

One other question. Does your son sort of " flap " his arms (hands go up and

wave about) a little bit and flex legs and feet muscles when he is excited

about something or anticipates that something is coming (as when you stack

blocks or play a repetitive game he knows like pat-a-cake)? We don't know

if this is normal, but it seems to be particular to Lulu and not to other

kids who are developing along the " normal " routes, at least as far as we can

see.

Well, let's keep talking and I will meanwhile look up the ataxia, gluten

ataxia and ataxic cp issues on the web.

Thanks so much for this.

Best,

Theresa

>

> ---

> 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]

---

There is very little info out there about sensory ataxia or even

ataxic cp. It was explained to me that his sensory systems are not

intergrating properly and the more stimulation we give to those

senses the faster they will connect and learn to work together. I

hated the term cp but everyone said don't get an offical dx because

its not going to be something that is noticable in a few years. I

found the gluten connection when I was researching. Taft has

lactose intolerance as well although we just gave him milk

regardless. There are test that can be done. It is very rare for

gluten ataxia to occur in children their age but I have found four

documented instances of it. Alls I can say is that now when I hold

his hand he is alternating feet on stairs, he is starting to cut

with sissors, last night he opened a ziplock back(the proper way) He

is just coming leaps and bouds on those fine and gross motor

skills. He still can't run or jump but were getting closer. We did

try proefa and had a few intial results but nothing major. I am

learning though with gluten problems there are malabsorption

problems so I intend to try again and see what happens. Taft also

does the exact same things with his arms. Its like he can't process

how to 'get that emotion' out and thats how he 'releases' his

excitement. Its not a major thing or constant thing but that drives

me absolutely crazy.

Steph

[Guest guest]

Dear Steph,

Wow. That's exactly how we experience Lulu's flexing of hand/arm/leg/feet

muscles -- the releasing of excitement and not really knowing how to join in

on the activity. She knows that something is coming, but is not able to do

it herself. She's not able to process it with her motor system, but she

knows intellectually what is happening and is very excited about it. This

is how it manifests in her. I wonder if this is ataxia or apraxia? I guess

even the experts will disagree. But as long as we can find some therapy

that works... Thank goodness we all have one another.

Yes, I guess that many children with various kinds of developmental delays

have been helped with GFCF and GF diets. We were going to have Lulu

evaluated for the various allergies/sensitivities once we got settled in the

Netherlands, but perhaps we'll try to do it quicker than that. I guess that

this could be a clue.

I'm going to start researching the diet so that I can start her on it. I

know that the diet will be a big challenge, and that it will take time for

me to organize doing it. I am already familiar with what look to be some

good online websites on GF and GFCF, thanks to Josie, mostly. I've also

heard that many parents have started their child on the diet for quite some

time, then switched to enzymes and gone off the diet, and another surge

happened. I guess if it really works, I'll have to join another list just

for the diet! Have you ever read that article by the mother of an apraxic

child who calls herself a PhD (MOM) -

http://www.speech-express.com/diagnosis-destinations/apraxia/dx-article-chas

e.html? I feel like each of us should go back to school just to get all this

expert learning we're doing recognized!

With ProEFA (well, not ProEFA because I can't get it here in Jerusalem --

but virtually the same mgs and ratios), Lulu has had quite a number of gross

and fine motor skills leaps, along with first consonants and better word

approximation. But they've all been small leaps, not the huge stuff others

have reported. This is her 4th week on the EFAs. I guess that the next thing

I'll try is the diet. I also understand that malabsorption is a problem with

gluten and casein allergies/sensitivities and celiac, and have heard that

the diet can help with fat absorption -- even EFA absorption.

How is your son doing with speech? How have your strategies worked? Is he

in speech therapy?

Absolute best to you all!

Theresa

>

> ---

>

> There is very little info out there about sensory ataxia or even

> ataxic cp. It was explained to me that his sensory systems are not

> intergrating properly and the more stimulation we give to those

> senses the faster they will connect and learn to work together. I

> hated the term cp but everyone said don't get an offical dx because

> its not going to be something that is noticable in a few years. I

> found the gluten connection when I was researching. Taft has

> lactose intolerance as well although we just gave him milk

> regardless. There are test that can be done. It is very rare for

> gluten ataxia to occur in children their age but I have found four

> documented instances of it. Alls I can say is that now when I hold

> his hand he is alternating feet on stairs, he is starting to cut

> with sissors, last night he opened a ziplock back(the proper way) He

> is just coming leaps and bouds on those fine and gross motor

> skills. He still can't run or jump but were getting closer. We did

> try proefa and had a few intial results but nothing major. I am

> learning though with gluten problems there are malabsorption

> problems so I intend to try again and see what happens. Taft also

> does the exact same things with his arms. Its like he can't process

> how to 'get that emotion' out and thats how he 'releases' his

> excitement. Its not a major thing or constant thing but that drives

> me absolutely crazy.

>

> Steph

[Guest guest]

Tafts speech is coming along. At 2 years he had absolutely no words

(except occasional spontatneous imitation) at 28 months we did

listening therapy and he had maybe 3 word apporx now at 33 months he

has tons of words and even puts them together but...... they are

very very very hard to understand and usually only my husband and I

get it some of the time. Taft is fairly bright (i think he is

bright but im trying to be modest and objective and he realizes

speaking is hard for him. He doens't try to speak alot he trying

more and more to communicate with words but he just doesn't seem

willing to commit to the work to talk quite yet. We have a family

history of late talkers and he shares certain personality traits

taht fit with that pattern.

Steph