Re: Update on the kids

[Guest guest]

Sharon, How hard for you all and I will keep you all too in my prayers. The

high IQ thing is one of the problems we are having with and the

suicidal thing. It sounds wierd but being VERY bright can be very difficult

for the person, esp. coupled with ADHD. The frustration is almost

incomprehensible. This was the scenario with my father too.

I have to comment on the Adderal. I have tried Dexidrine and long acting

Ritalin and Adderal (which is a mix of ritalin and dexidrine) and could not

take any of them due to side effects from the petroleum products in them. I

always ended up with sinus and eye infections. So if Jake has any

sensitivity to petroleum products you may want to try another stimulant med.

such as the regular Ritalin.

I am very excited to perhaps have the oppurtunity to do this SPECT brain

imaging with as one of the major things it will show us is exactly

what type of ADHD he has and what medicine will work for that. Dr. Amen has

broken AD(H)D into 4 subtypes. I'm taking a questionarrie thing now looking

at myself. He has written several bks which I am going to chk into getting.

Going to cut this post shorter than planned as I'm onto something exciting

about GABA which may help us with the ADHD and other things as well. Writing

to Switzerland hoping and praying this man will see the correlations.

Love,

Update on the kids

>From: SDidinsky@...

>

>Hello all:

>

>Sorry for any cross posting but here is the latest on Clayton and Jake.

>Before I start Cole is doing great - healthy, growing, putting lots of

words

>together.

>

>As for Clayton he has now been at Kennedy Kreiger (KKI) for more than 2 and

a

>half weeks. He is finally starting to take some bites - not lots bt it is

>better than before he came. With respect to the recently diagnosed

>mitochondrial disorder - CLayton is currently on - Carnitore (this is

amazing

>- due to the sole fact that my child who has been constipated for 2 years

is

>actually pooping - SCARY). He is also on Thyimine, Coenzyme Q, Vitamin E

>and Vitamin C and we still have to add lipoc acid. We have not started to

>add the choloesterol yet - but probably will over the next couple of weeks.

>HE seems to be feeling a little better and not in as much pain from eating

>and seems to not be as tired. Actually napping less and actually more

hyper.

>He is finally tadapting a little bit to his surroundings - BUT it still

takes

>2 nurses to bathe him. He is still struggling to gain weight and is still

>more than a pound less than when he entered KKI. We will probably be here

>for 4-6 more weeks. The good news is that the medicine seem to be helping

>his lactic acid levels. His 6 hour fasting levels have gone down - still

>above normal - BUT lower than before he started the meds. Dr. Kelley was

>happy.

>

>NOW FOR JAKE. We got the report from the child study team and the filled

out

>IEP form (being in Baltimore - I beleived the meeting was Wednesday and it

>was Monday and when noone showed up they did not call my hsband who lives 5

>minutes away but PROCEEDED with the meeting). I got the report and met

with

>the case manger - his teacher and principal on Wednesday. They all beleive

he

>is ADHD on one hand and brilliant - IQ over 140 - on the other hand. They

>believe that is trouble concentrating and sitting still and staying with

one

>task is hurting hsi ability to learn. ALso they say that his pre-reading

>skills are poor - although the kid can read - JUST wont. also the teacher

>says his handwriting and fine motor skills are horrible - BUT the OT says

>that they are not bad enough to qualify for services. He is in

Kindergarten

>and will go to 1st grade in the fall. Since he is in private school he

will

>get a tutor once a week in the house for an hour to help with school work.

I

>still have to sign off on the IEP and have some things to add - like I want

>weekly progress reports. Well on THursday Jake had his 6 year check up

(43

>1/2 inches and 43 pounds) and healthy in general - although he is getting

his

>fifth set of ear tubes next Firday - yes I live to drive from hospital to

>hosptial in 2 different states (Clayton in in Baltimore, and we live in NJ

>and Jake is having out-patient surgery at CHOP in philly) Anyway the ped

>reviewed the reports and watched him and CLEARLY AGREED that he is ADHD and

>suggested a trial of adderal for the next 4 weeks to see if it helps with

>school. Barry and I agreed to this. BUT that was not it - JAKE apparently

>is having problems reading and writing since he cannot see - HE NEEDS

GLASSES

>ASAP. SO not only is my child hyper he cant see - THINK THIS WOUOLD HURT

HIS

>ABILITY TO SUCCEED IN SCHOOL.

>

>Well that has been my week this week.

>

>THanks to all for the kind notes and wishes and cards - CLAYTON LOVES THE

>CARDS.

>

>SOrry for being so long.

>

>Love,

>Sharon

>mommy to Jake (6)(ADHD - awaiting glasses) and fraternal twins (3/30/97) -

>Cole -(nda and cute as a button) and Clayton (mitochondrial disorder,

>eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat),

>g-tube, Nissen, latex allergy, DD, sensory integration disorder, tremors,

>etc.........)

>

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