Maxi-man Update, Long!

[Guest guest]

Hi Everyone,

Maxi is healthy again, and does seem to finally be getting his

appetite again. He also is calming down, quite alot.

The update on NIH is kind of depressing. They decided he really

wasn't worth their time or further testing. The official diagnosis

is idiopathic short stature. Despite the precocious puberty issues,

the fact that my husband and I are short is what makes him short.

They haven't addressed his tremor or mid-line anomolies, but would

like to track his growth, so I guess we'll do that.

I am so disgusted with Doctors, we are going to take some time off

from them. I 'll go for weight and height checks, but I am tired of

hearing how perfectly normal my son is. While I am grateful he

doesn't have some issues, none of his are being addressed, medically

speaking. So, I have this list of stuff, all weird, all unrelated,

all looked at by the best in the area. Dr. H and Dr. Bercu thought

something was up, but NO doctor I talked to here even wants to do

the kind of testing they talked about, won't even consider it. So I

will do my own thing. And tell you all about it. But before I do,

don't do what I am doing, if you are under a doctors care, talk it

out with them first. I am telling you for informational purposes

only.

I started Maxi on melatonin in August. Melatonin is a hormone that

regulates the time clock in the body and some other things at the

cellular level. It is produced in the pituitary, like growth hormone

is, but is also found in nature, which growth hormone isn't. As one

of the things that was suspected about Maxi was SOD (another short

stature syndome), these kids also are hyperactive, and over

stimulated, some are even classified as autistic. They have multiple

mid-line anomolies like Maxi. The melatonin, in time released form(3

mgs.) is thought to help their internal clock and help regulate some

of their hormonal function. Anyway, melatonin has helped some of

them. Maxi was on a prescription sedative at night, so I thought why

not? A day or two won't hurt. Let's see how this goes. Needless to

say, he is off the prescription sedative and sleeping so much better

and the result during the day has been well, really amazing. Would,

those of you who know him think of calm and Maxi in the same

sentence? He can still get really rambunctious, but he is calmer,

much calmer and not so quick to flare(temper). He has changed alot.

Dr. H would probably hate this, but as I can't have her or any one

else who will do anything, I have to do what I have to do. I did my

research, and do feel this is an adequate replacement for the

sedative for Maxi, and we may be able to avoid that ADD drugs as

well. It has only been three months though, and I am watching. His

pediatrician and the docs at NIH know, and didn't have a problem

with it(though they wouldn't have a problem with ANYTHING) but his

doc does know.

The next thing is the high calorie shakes, with digestive enzymes.

Maxi didn't do well on zantac, not that he ever had the reflux test,

but throwing up half of what you eat for the first two years of your

life qualifies. Now that he isn't throwing up so much anymore, the

doc doesn't see it as neccesary. Anyway, he started gaining weight

after I put him on enzymes, he went from stick thin to filling out

nicely. He stopped throwing up. Dr. H hated this, thought I was

being a bit caveleir, and thought if he was gaining weight on

enzymes then maybe there was another problem. (She may be right but

this worked and no one else will do anything). The docs here didn't

like it, but as they aren't offering up any of their own solutions

and I posed to them that they do so, they just got quiet. I cut back

from enzymes at every meal, and just put them in his shake at night.

His shake is 1100 calories 26 grams of protein. He still eats about

another 2000 calories during the day. He is a bit of a grazer.

Always munching. School is very good about letting him get stuff to

eat. This year anyway, I have a feeling that next year, in full day

kindergarten that may change.

The next thing I am doing, is a supplement called DMAE. It is touted

for hyperactive kids, Maxi takes half the reccomended dose and only

at night with the melatonin. There is research about this

combination going on at NIH right now, so they weren't surprised I

was trying it. Nor did they think it dangerous, but that doesn't

mean it is for everyone, or not dangerous, but the studies already

completed made me think it was worth a try for Maxi. I am willing to

try anything, to make him more comfortable.

He also does take claritin for allergies. So with his shake at

night, he takes three pills. Yes, he swallows pills. And, when he

gets up to eat at night now, I have food out for him, he wakes up,

eats and goes back to bed. He has calmed down enough that he can be

up by himself. If he is really hungry, like for something specific,

he will wake me up. But he has a choice of stuff, and even puts his

dishes in the sink, lol. Anyone who saw him at the convention, can

you imagine letting Maxi wander your house at night without

supervision? lol. These things have helped, and may be answers,

maybe not.

I still have that ticking time bomb feeling, and I do remember what

Dr. Bercu and Dr. H said at the convention about adequate diagnosis.

His blood sugar and acidosis incosistencies really bother me and we

try our best to keep everything normal but with him,sometimes you

just can't. It is just that no one Dr. here in this area really

wants to address it, and when they see how many Dr.s have checked

him out, they think and I are over doing it. They think Dr.

Bercu and Dr. H were scaremongers and that our child will just be

short. I am 5 foot three and a half and is about 5 foot six. We

are both the " short ones " in our family. My sister is 5 eight and

both my brothers are over six foot. All of 's sisters are in the

five seven range and his brohter is six foot. But our child is on

schedule to be about 4 foot eight. That is somehow supposed to be

normal, because we are relatively short.

Maxi's tremor is more noticeable now that he isn't moving around

like a little hot potato, the OT hasn't had any luck with it, no

improvement. Actually, in her estimation, it is worse. I think it

only seems worse because he has calmed down so much. Maxi still

doesn't cross over left to right or right to left. Does not cross

the mid-line of his body. Still uses both hands pretty equally but

we say he is left handed. He colors two fisted! But doesn't have the

control to really do anything. Can make a cross or a wobbly x but

that is about it. Interestingly enough though, he can spell his name

on the keyboard. Just walked up to the computer one day and pounded

out MAX. And when you ask him the alphabet the starts Q-W-E-R-T-Y.

Then the next row down on the left side. We have a split keyboard so

it works for him. I do not believe he is cognitively challenged, his

hearing is at about eighty percent, and his eyes, while he has the

foveal hypo-plasia, his eye sight appears to be o.k. for now. He

wears a slight corrective lens with a plus diopter like reading

glasses, this keeps door jambs and table corners from sneaking up on

him. His next EIP is for January.

I am telling you about him, so that as all goes well, or not so

well, you can see and know about it. We are doing some things

differently, and it may be worth seeing how it turns out. He may not

be RSS, but so many of his issues were the same, some still are, and

we really have no idea what is going on. Just taking it one day at a

time, and so happy to have him. Hope everyone is well.

Here at home, is still unemployed. Cobra is 916.00 a month -

cough, cough! We paid for December but don't know about the January

payment yet. Thank God for home equity! I am doing fine physically,

and now have a literal mop of hair on my head. My blood work is

fine, yippee! My oldest (the rising star), may go on the national

tour with the broadway show RENT, and my 14 year old has plans for a

video postcard for the troops in Iraq. Her school has an eighth

grade IB program and this is her eighth grade project. So, we are

bracing for an interesting Holiday. Anyone know where I can find a

dinosaur that roars?

Hugs,

AmyMarie mom to Maxi with WKW(who-knows-what), almost 5, 30-ish

pounds 37 inches,Breanna -14, and Will -20 who incidentally is

pushing 6 feet!

[Guest guest]

AmyMarie,

I am so glad you wrote and I happened to check in! I am glad you have

found some peace with Max, even though the idiot doctors aren't

helping you! I will continue to pray for you all, I was so glad you

wrote.

Carmen, Mom to Storm and Paisley and 4 foster boys!