A grandmother's perspective, part II: Recovery, the way back

[Guest guest]

OK, so I wrote the first story from Tom's conception to age 2.3, when he came to

Florida.

While I was waiting for an appt. with Early Intervention (took from July to

October, a long

time when you know they can only help till age 3), I did what I could to just

get down on

the floor with him and try to relate. They also had to do a sedated hearing

test before

they could evaluate him (it was within normal limits).

He had no formal therapy. I would do things like make up a game, Run! Run! Run!

STOP!

and my two ies and I would run around the house with Tom like he did

constantly and

then all FREEZE at the word STOP! (At first, the dogs were actually better at

this game than

Tom, but he would soon run into the sofa or somewhere that would help him put on

the

brakes.) I would go over to his house, too, and play with him on the floor and

talk about

the play-doh colors, simple words, simple phrases, make him laugh, blow

bubbles...anything I thought might make some contact. So he did have " grandma

therapy. "

And when I tried to leave the house I would try to get him to say, Bye-bye, but

he would

cry and say HI! HI! by which he meant, don't leave, I don't want to say bye, so

I'm saying

HI. No ABA or anything, just get on the floor and play with the kid. I did read

Greenspan's

book on the special child and anything else I could get my hands on.

His mom and dad were trying to start an Internet business, and I told my son

there was NO

WAY he could look for a full-time job because the child was primarily bonded to

him; his

mother can't care for him (and it's not his mom's fault, we are going to some

day get to

the bottom of her problem, she has had therapy and has been on every

antidepressant in

the book. We suspect an undiagnosed medical problem). So Tom went back to

part-time,

20 hours a week group day care, and I helped when I was able, being on medical

disability

myself and unable to keep up for very long with a child who at that time would

run from

one thing to the next every 30 seconds on the average. His day care provider

loved him

and felt we should apply for Social Security Disability for him. We didn't, it

was too

complicated.

We tried to get him in Head Start but that year couldn't because of

technicalities about

income limitations (based on Jeff's previous year's income in California). He

did qualify for

Medicaid, though. In August of 2004 he finally got in, just before his dad got a

job in his

field, but 50 miles away (and with no benefits). So Tom's dad was commuting and

Tom

was in After- and Before-Care at Head Start, unless I was able to pick him up

early.

But the ProEFA was definitely helping and Tom did make progress with Speech

Therapy

and Occupational Therapy twice a week and Grandma therapy. Grandma always took

a

bag of new fun stuff when we went out to a restaurant, which eventually became

possible

as he started to be less frustrated by his speech problems. When I was working

with him

on the floor, though, I definitely noticed almost immediate changes for the

worse

(aggression, etc.) after he had lunch with milk and/or wheat, but his momma

didn't want

him to " avoid a whole food group " like milk, and his dad was overstressed in

having to do

all the housework, cooking, childcare, and support the family, so I was

frustrated in trying

to change anything there. One day I said to him after lunch, how come right now

you are

doing all the things you know you aren't supposed to do...whereupon he tried

gently to

" hit " , " kick " and " bite " me to show me he knew what those things were.

I started to take him to church with me in December 2003, and that's when we

discovered

the extreme sound sensitivity. He screamed at Silent Night! let alone the

louder, faster

music...until one day his Sunday School teacher showed him how to bounce and

dance

with the music so that he could integrate it and no longer experience it as an

outside

assault. Still, it has taken until just recently that he would not cry if I sang

with the

congregation because he apparently felt so excluded that he was the only one who

couldn't sing along. He wants to be like everyone else very badly.

Now I'm telling you too many stories, so let me try to get to the real

biomedical

interventions that helped incredibly.

First was the ProEFA. And since he was often stuffy and runny nosed, he got

Claritin too,

suggested by his pediatrician. He had several more ear infections, I think the

last one was

treated with a Rocephin injection since he had a very high fever.

Since we knew he had trouble with receptive language and possibly auditory

processing, I

got myself certified for Fast Forward and used Fast Forward Basics with him on

the

computer when he was 3.5 years old. This was very helpful, and he quickly

became very

good at using the computer. This is a computer program especially designed for

helping

kids with auditory processing problems.

He eventually got into Head Start, where they will not allow any outside food to

be brought

in (no bag lunches) because of kids with peanut allergies. More trouble trying

to limit his

already very limited diet (very picky eater). They required a physician's

prescription to limit

the diet in any way. Still the ProEFA was helpful. And since he seemed to be

having

problems with lactose intolerance, his pediatrician wrote a prescription for

lactose-free

milk only and limit lactose-containing foods. This has continued to be a problem

because

he may have tendencies towards diabetes and hypoglycemia with a strong family

history.

He was fortunate to have a very experienced teacher there, with 30 years of

experience

teaching disabled children, but no certification for same...only an adult

developmentally

disabled child of her own. She was patient and usually intuitive about his

needs. At first

she couldn't see Tom's disability because he was so intelligent. However, he

played by

himself most of the time. And he couldn't sit and listen to the teacher at group

times.

Then last spring he had a setback, with a bad ear infection, for which his

pediatrician

prescribed some macrolide antibiotics, which he kept vomiting, and by Easter

Monday

(three days later) he had a case of atypical pneumonia in the left upper lung

lobe (verified

clinically and by x-ray) and shingles that went right along the left cervical

dermatome of

the nerve, according to the pediatrician. He had, of course, never had

chickenpox, nor

was there any going around...he had just had the varicella vaccine on his first

birthday.

She then prescribed a cephalosporin antibiotic and acyclovir, 5 times a day for

5 days.

Well the most amazing thing happened...his speech articulation suddenly became

age-

appropriate on the acyclovir. His drooling also stopped. I did some literature

research

and realized that varicella (chickenpox virus) can remain latent in the ganglia

and could

affect the cranial nerves and could have been the cause of much of his oral

speech, oral

motor, auditory processing and vestibular problems. And shingles in preschool

children

has been cultured and it is the vaccine strain.

After this incident, and after consulting with his pediatrician and having him

tested by my

own pediatric immunologist, for primary immunodeficiencies and vaccine titers,

we filed a

religious exemption to continued vaccination for . He had four HIB

vaccines and a

negative (0) titre to them, but we did not follow up on this.

I also read in DeFelice's book Enzymes for Autism and other Neurological

Disorders

that enzymes like Houston's Zyme Prime had been used in Germany to treat

shingles and

had a much safer side effect profile than acyclovir. I talked his parents into

starting some

of the Houston Nutraceuticals enzymes at home to break down the peptides in milk

and

wheat, and to help his digestion, lactose and whatever, because he still had,

and has, a

very limited diet. Houston has excellent chewable products for picky kids, and

it seemed

to me a good compromise between going GF/CF and just ignoring the possible

issues with

casein and gluten. And would help any lactose intolerance--and maybe even any

residual

latent varicella viruses. His improved articulation continued.

However, in the spring he had some less experienced teachers, and was just

beginning to

want to interact with the other children...and hit one on the shoulder to get

his attention. I

think he was also still recovering from being so sick at that point. The

(inexperienced, not

to say dumb) teacher told him...if he did that, his GRANDMA would come and get

him. For

the next three days he hit, kicked and tried to bite the staff, the children and

other

teachers to see if it would really work! He did not understand the intonation

or meaning

of the teacher and had taken this promise literally. I went in when called and

refused to

take him home after the teacher told me what she had said. He had never shown

any

aggression to other children before, although if they tried to take away

something he was

playing with there might be a problem.

His excellent pediatrician said, at this point (so that he didn't get kicked out

of Head Start),

she thought a little medication would be beneficial. So he got 2.5 mg/day of

Adderal and

is still on it. There was no more hitting or kicking. His attention span is

improved. She

thought that it would help him remember the beginning of a sentence when he was

listening,instead of only the last phrase. At that point we also noticed that

in playing hide

and seek, he did not seem to know when the other kids could see him when it was

his turn

to hide. And he was confusing " you " and " I " frequently. So there could have

been " theory

of mind " issues as in high-functioning autism.

Last fall after reading a copy of DeFelice's book Enzymes for Autism and

other

Neurological Conditions, our pediatrician, who is board certified in both

pediatrics and

internal medicine, agreed to write a prescription for these so that Tom could

also have

them at school (although they are OTC and GRAS, Head Start has very strict rules

about

such things). He had needed them all along because they really only work when

taken with

EVERY meal containing the offending foods.

Tommy started to really do better socially and in speech and every other way,

although he

still had sensory issues, and we couldn't get him to sit on the potty to

defecate at all. We

did finally at 4.3 get him to be able to urinate in the toilet regularly. Last

year he didn't

seem to be able to release the sphincter muscle to urinate even though he

understood

everything and would stand in front of the toilet and look at me and say, " It's

stuck! " I

once tried to help by turning the faucet on, which only caused pain and fear.

That was the

last time I did that. Somehow the neurological condition of his body...that

area seemed to

be hyposensitive and he didn't have proper motor control over it, it just would

not allow

him to do this.

So he was progressing academically and socially on the enzymes. At Christmas

this past

year, he was in the church Children's Christmas Pageant as a shepherd. It was

hard for

him, but he was SO PROUD of having participated and doing well. He said, " We

did it! " (I

think this is the first time I ever heard him refer to himself as part of a

group!) Some time

after that his teacher at school saw him take the magnatiles he had been playing

with

alone all year, say to some other children, " Would you like to play with these? "

and go over

and start dramatic chef-play in the kitchen. (I think as SpongeBob making

Crabby Patties,

if I know him.)

Finally I was tested for celiac because of my chronic diarrhea, possible

dermatitis

herpetiformis, and the results of my most recent colonoscopy and my CVID/IgA

deficiency.

I tested as gluten-sensitive, and we paid to have fecal IgA anti-gliadin and IgA

anti-casein

and anti-tissue transglutaminase antibodies, as well as HLA typing related to

celiac done

for through enterolab. No prescription required. As you may have read on

another post to the group, his anti-gliadin antibodies were very high and the

other two

were positive, and the HLA showed gluten sensitivity but not classical celiac

type HLA. At

that point his pediatrician wrote a prescription for an absolute strict

gluten-free diet.

I found some of the medical research on gluten ataxia, which was extremely

interesting to

me. A child who will only run because it is harder to keep your balance when

you walk,

who can't balance on a toilet seat, who refuses to go on boat rides and

carousels, and gets

very upset in traffic and motion-sickness on the back of a horse at a

Therapeutic Riding

program. (we used C-bands)..may just have something similar to gluten ataxia.

These are

all vestibular sensory issues, which his former OT said were severe. I stopped

his OT last

summer because he would be put in time-out for refusing to go on the swing, the

therapist thought he was being oppositional, and I thought he was feeling sick

because

the school had just filled him up with cheese crackers. I am sure now he

wouldn't mind it

at all. He always says, " I want to be a good boy. I'm not trouble. "

Anyway, although we had gone through months of gradually less gluten, with the

enzymes, with the parent's removing it at home, etc., when the school finally

had a

prescription and did so too...the improvement in sensory functioning was

dramatic. The

child was toilet trained for defecation in two days after never previously

having a single

success, and he will be 5 years old later this month. He wants to go on all the

rides at

Silver Springs and the boat rides, and says, " Whee! And I didn't get sick! "

instead of

screaming when I pull up on the interstate ramp.

He is academically advanced, starting to read, my brother who has taught

elementary

school for 34 years thinks he is entirely ready to go to a normal kindergarten

next fall.

So here we are, he is a joy to be with...Wednesday I had him for 10 hours

straight. He

says, " I like you. I like you a lot. " And can actually give me a kiss on the

cheek. We have

lots of adventures together, but the biggest adventure for me has been putting

together

this puzzle to help my grandchild.

His biggest remaining challenge is in the area of eating. But I can now easily

see that with

his enzyme system probably messed up, and bad tummy aches after eating and

drinking

common foods, his gag reflex probably disturbed by the torticollis, we will just

have to be

patient with him. He ate a new food this week...Almond Munchies (salted

almonds). No,

he won't eat pasta or pizza, although he will pretend to like the latter for

social reasons.

Yesterday when I went to pick him up, one of the other children said to me: " Ben

ate a big

bite of strawberry! He almost threw up but he swallowed it! "

Fortunately I worked for 6.5 years in the at a University nutrition school as a

Research

Associate so I can watch and make sure he does get supplements he needs. Head

Start

also has a consultant Registered Dietician. Last spring we also started him with

a

multivitamin that had an oil-soluble form of vitamin A (Sea Buddies), and he

also gets

Juice Plus chewables because he won't eat " slimy " veggies and fruits (or even

the Juice Plus

gummies). We saw an immediate increase in affectionate, calm and compliant

behavior

when these two nutrient supplements were added. (Previously he had had

supermarket

gummies vitamins.)

My suggestions for research: I'd really like to see some done on the ProEFA. I

think it

remains a key part of Tom's recovery. But for some kids at least the GF and CF

diets, and/

or the enzymes, are very important. The enzymes not only break down the " opioid

peptides, " if you believe in that theory, but also, if there is gluten

intolerance, or if the

mercury excreted from the environment and vaccines is excreted in the bile and

damages

the intestinal brush border, they may replace normal digestive enzymes. Or it

might be

acting, as in the case of the Zyme Prime-type enzyme and shingles, as an

anti-viral. They

(enzymes) are insufficient for celiac, DH or gluten ataxia, however.

And I hate to say it, but mercury toxicity (whether from vaccines or the

environment or

amalgams or the diet), immune dysfunction or deficiency and live viruses are all

big

issues. When it comes to nutrition and biochemistry the whole system has to

function

properly for the child to develop to his or her full potential. They were doing

a lot of

talking this weekend about methyl B12 injections to normalize the biochemistry.

To do

ethical research, you may have to give parents information about all the various

possible

things that might help and let them and their physicians the right to choose

which

interventions would be helpful, and then possibly use each child (and/or perhaps

siblings)

as his or her own control....Tom will still regress if he doesn't get his ProEFA

on a

particular day. Even though some of these therapies are unproven, to withhold

them might

turn out to be damaging. What is often not recognized is the extremely high risk

in a

situation like this of doing NOTHING.

Our next step is to get him tested for urinary organic acids to see if he may

have a B12

deficiency, or some other correctable biochemical situation…such as caseomorphin

peptides in his urine. He still seems to have some oral tactile insensitivity

and taste

hypersensitivity.

Just one more comment regarding research. I did a lot of epidemiological

research at

Cornell, biostatistics was one of my specialties. People in this field like to

do studies with

identical twins but they forget one thing: even identical twins do not have the

same

prenatal experience. One study in Pediatrics has shown in older children with

plagiocephaly that a history of uterine constraint is a big risk factor for

school learning

problems and IEPs, speech problems, etc. in elementary school. This would

include Tom's

situation, but it would also include a situation where one twin or triplet is

" squashed " in

the womb by being under the other in some way--just a thought. I would be glad

to

discuss the design of research studies you might be considering with you, if you

would

like some feedback. It's not going to be easy with with all these factors. I

haven't even

mentioned things like yeast toxins, etc.!

Last week I took him briefly to see a school near us, where we hope he might go

to

kindergarten, and when we had to leave he grabbed the guidance counselor around

her

skirts, started to cry and said, " PLEASE let me go to this school! " LOL!

Heart-breaking!

How can you resist a kid like that? He wants so much to be with the other

children now.

Peace,

Kathy E.