lupron, our experience so far

[Guest guest]

Hey all, I've hesitated posting that we decided to go the lupron route

last summer for several reasons. The reasons were Allie was about to

have a period, she was ovulating and her Tanner stages were all over

the place. Aspects of her estrogen, testosterone, and other hormones

were extremely high or simply high, while her glutathione was

extremely low. Her testosterone level was that of a newborn. This was

multiple testings and coupled with her ultrasound, we feared that we

would be locking her into an extremely short height.

I asked Dr. Geier why wouldn't it be safest to simply let nature take

its course than the danger of ceasing nature. His answer, and I am

paraphrasing and not speaking for him, is that if all other things

were typical, specifically height, cognition, mitochondrial stuff,

then he would be tempted to agree with me but in considering the

entire picture she would be an extremely short (likely not more than

4'), disabled, female. Each of these puts her at a higher risk of

abuse during her life, as we all here know. Also, he felt we could

help some of her sickness by getting her glutathione levels up and if

we could address the mito she would likely grow more.

That night was probably one of the worst of my life, I agonized over

what to do. I called a trusted friend who works in healthcare, who

knows Allie's case, and has a child with autism. He explained to me,

as Dr. Geier did, that on this end of menses, where she had not gone

into a full-blown cycle, the side-effects are almost nothing, that

side-effects happen once a female has had regular periods because it's

insta-menopause and that this would likely not be the case with Allie

Cakes. I finally asked, " If Allie were your son, would you consider

it? " and the response was, " If Allie were mine, I would do it in a

heart beat. "

So we started in mid-July. I have to say that I believe the results

have been near-miraculous. She still has autism and I don't anticipate

it " recovering " her. But what I have seen is a child more happy, she

has emerging emotional expression such as " I'm jealous of " or

" Mommy, the Christmas tree looks beautiful. " Her scholastic abilities

have exploded at school as she's now " essentially " on grade level. One

of the staff who has worked with Allie since kindergarten is

commenting on how it's difficult to get a handle on just how fast

Allie is progressing. Friends and family are amazed at her increase in

attention, affection, and verbalization.

Now, instead of screaming and hitting her sisters at home when she

gets angry she is verbally expressing it, " Dinah, get away...you are

annoying me...leave me alone. " I found her picking out her clothes

from her closet yesterday, that was HUGE. She is caring about her

clothes being backward, wrong side out, etc and is now asking " I need

help " when trying to get them on right. It's like she's completely

aware and interacting in her environment whereas before she may have

secretly been aware but didn't have a clue how to show it or catch on

to anything. Allie still has outbursts and frustrations, but we feel

overall more workable issues.

Do I think lupron is a magic autism " cure " ? No. But I do think that in

Allie's case it has enabled her body for the first time in her life to

have normal glutathione. We have given her glutathione infusions for

years, along with chelation, and she still has had abnormal

porphyrins, lead, aluminum, and other metals out the wazzoo, and no

matter how much we chelated she still excreted it way too high. Her

porphyrins are going down some, but chelation is probably still

needed. She got less sick with the IVs but was still quite sick quite

often. ~30 days/yr of missed school due to illness, many other days

she went sick. The chronic fevers are gone. Since May we had two

back-to-back illnesses & that is it. She got them & got over them like

a typical kid instead of lingering for weeks to months.

I think the ability for her to be healthy is paramount in her

improvements. I used to say if we could just get Allie healthy I think

we'd be amazed at her progress. And now we all are.

So here is the story. I held off for so long because I just didn't

want to hear the " how dare you do that " because I felt like for Allie

it was needed. In posting this I'm in no way telling anyone to rush

out & get their kid on lupron, but I did want to share it in case

someone feels a light bulb moment as something that could help their

child. I do wonder under what parameters this protocol is helping

children, I have read that some kids return to the prior state once

off the lupron. Obviously lupron cannot be a life-long treatment. It

is our hope we can get Allie taller & get her mito stuff worked out so

that when she goes off it her gains will stay.

If you research Dr. Geier's name you will find lots of lies out there

about him. I do not believe them as I have known the man for about 5

years now. We're not good friends or anything, but I had dinner with

him and lobbied our state Capitol with him and his son. He was just

starting his lupron study & suggested we consider if Allie would fit.

At that time we did the wrong labs, just a general testosterone test

instead of the metabolites of testosterone, which were normal. He told

me based on that test the ped performed Allie would not be a candidate

& thanked me for my time. He has disagreed with me on some things in a

very respectful way. The key being he is respectful, listens, offers

his opinion, and leaves it to the parent for the final call. I'm very

thankful we have him and this protocol for Allie.

Debi