daughter diagnosed with Tourette's after almost 5 years on Miralax -please help!

[Guest guest]

I just found this message board yesterday, and have spent most of

last night and today reading the posts, feeling such an empathy with

all the mothers who suffer the pain of seeing their child with

serious, chronic constipation and other GI problems. (I need to

explain that I used my husband's name, Massoud for the

member's ID; my name is Kathleen Massoud,and our daughter, who just

turned 7 is nna. We all have survived a very tough year, with

nna's daddy fighting Stage 3 brain cancer since July 2005, but

that's another story....)

nna has had GI problems since infancy and has been under a

GI doctor's care since she was 3 weeks old. Her diagnoses have been

(in order): colic (due to milk protein allergy), constipation,

reflux (at 6 mo., put on Zantac), then severe constipation after an

antibiotic RX at 18 months, subsequently diagnosed as Functional

Fecal Rentention. The constipation was first treated with mineral

oil, then Lactulose (?), and finally Miralax (full dose) at age 2 and

a half. At the time, it really did seem like a miracle laxative,

because she would become so distressed with every BM, even though

they were usually soft. It was not uncommon for 4 or 5 days to go by

in between BM's.

Of course, we tried the usual " food remedies " that seemed to

work for everyone else's kid (even putting prune juice in meatloaf

and muffins, etc.), as we tried over and over again to reduce the

dosage. No matter what we tried, it seemed that when we went below a

certain amount, (between 1 1/2 - 2 tsp. of Miralax), she would run

into trouble and we would go through a setback as well as the same

emotional turmoil. (nna is a very sensitive child). Whenever I

asked her GI doc and her pediatrician about long-term use of Miralax,

they assured me it was safe indefinitely because it was not absorbed

by the body. And so it went on this way, trying probiotics and other

things, in hopes of cutting back the dose, but always running into

bad bouts of constipation below a certain dosage of Miralax.

Meanwhile, she dropped off considerably on the weight for

height chart, from the 75th percentile at age 2 to about the 10th

percentile at present. (She is about average for height, but weighs

only about 40 lbs. at age 7). She complains often of " feeling full "

after having just started eating a meal, and has to wait and " try " to

eat more later. About 2 years ago, she had a few incidents of what

appeared to be " reflux attacks " , during which time she became

hysterical. She does complain at times of reflux symptoms. Her GI

suspected " slow motility syndrome " , but I turned down his offer of

giving nna a radio-active sandwich to eat with X-rays. (I found

out there wasn't any good medicine to treat slow motility syndrome

anyway, so why bother?)

Unfortunately, I did not do research on Miralax, so much did I

trust her pediatrician and GI doctor. About 1 and a half years ago,

nna started with her first motor tic, (an abdominal squeezing

motion I could feel when she sat on my lap). Then I noticed the eye

blinking and rolling of her eyes sometimes. At the same time, she was

having some OCD behaviors and other rather severe anxieties. I also

noticed some attention deficit problems when in a class situation.

(nna is home-schooled but takes several group classes.) Then in

July 2005, my husband had a seizure and was diagnosed with brain

cancer.............. It has been a time of great upheaval during this

trial of my husband having brain cancer, but we have had the support

of many loving people.

The vocal tics started in March of this year, and we first

heard the diagnosis of possible Tourette's Syndrome in May. This

summer her tics and OCD behaviors worsened considerably and she was

having real oppositional behaviors as well. Many times she tells

me, " Mommy, I'm all mixed up... " It breaks my heart. In August,

nna started having trouble with her speech - saying certain

consonant sounds in between her words, then repeating sounds, words,

and sometimes phrases. She " hums " a sound in between words when

talking and sometimes makes lots of different, odd sounds. She's

developed a lot of " odd habits " as well, that seem to be

compulsions. (It's hard to believe, but even through this whole

time, she remains a basically happy, very sociable little girl.)

Her speech really got bad about 3 weeks ago (we videotaped her

reading so we could show a speech therapist how bad it really was)

and he said it was a neuro-motor speech dysfluency, most likely

Tourette's. A neurologist from Boston's Children's Hospital also

confirmed that she, too, would diagnose Tourette's.

I have been spending many, many hours online researching

Tourette's and alternative treatments, when, lo and behold, I

stumbled upon dana'sview website on Miralax, which describes

neurological symptoms similar to my daughter, believed to be caused

by Miralax toxicity! I was in shock and utterly beside myself in

tears.. Just previous to this discovery, I had taken nna to an

alternative medicine clinic that treats Autism Spectrum children, and

was advised to put her on the SCD diet, along with Spectrum II

Support minerals/vitamins from Brainchild Nutritionals. Upon

learning about the possible Miralax/Neurological connection, I

decided I couldn't give her any more Miralax, so we stopped " cold

turkey " this past Sunday.

I have seen some decrease in the intensity of her

speech " tics " , and pray to God that she isn't " damaged " for life and

that she won't get some kind of cancer because of this long-term

Miralax. I wouldn't be able to live with myself.

Tomorrow, (Thursday), it will be Day 5 off the Miralax. I have

been giving her 1000 mg. of Vitamin C (dose spread out through the

day) as well as Natural Calm Magnesium Citrate 100 mg., in hopes that

it will help her go. She did have a bowel movement last night, after

lots of tears and even screams that it was hurting her and burning

terribly. I was kneeling right there beside her in the bathroom, and

it breaks my heart. I can't go back to giving her the Miralax, but

now she has a terrible fear of having a bowel movement! What can I

do for the burning sensation she describes? She screams so loud,

the neighbors must wonder what's wrong... Any help any of you moms

out there can give me will be greatly appreciated. I am so weary

from everything that has happened to our family, but I know they are

depending on me, so I have to keep going. But I know I can't do it

without help, so I pray that God will help me through someone on this

message board. God bless all of you that give of your time to help

other mothers and children in need. Sincerely, Kathleen Massoud (ID

name stevenmassoud) p.s. Have any of you heard of Dr. Buie of

Massachusetts General Hospital? I've been told he is sympathetic to

the theory of " leaky gut syndrome " , but I don't know if he actually

treats any differently than other GI doctors. Thanks, Kathy Massoud