Re: can anyone explain?

[Guest guest]

HELLO THERE,

I am so sorry but I never heard anything like that before.

I really think that you have to take her to see a doctor asap.

It is very important to be check out to make sure everything is fine

with her. She also had a headache that is also another reason for you

to take her a see a doctor.Maybe, he/she will do a brain scan.

I don't know... I am sorry to say, that is my personal opinion, but I

think it is always better to play it safe always!

I realy hope she is much better now.

Take care

Joana

[Guest guest]

Headaches or an itching head is not a common symptom of CMT. However,

perhaps the headaches are due to optic neuropathy - or maybe be a

symptom of a certain type of CMT I am not aware of. My own migraines

are in no way connected to my CMT.

Perhaps the best thing would be to take your daughter to a pediatric

neurologist who can better diagnose what is going on. Is your daughter

starting to read? Could she have eye-strain and need glasses? Just some

thoughts.

~ Gretchen

[Guest guest]

Hi Gretchen and Joana,

Thank you both for responding. I am going to take her to a doctor tomorrow

mourning,something just isn't right with her.I posted this message right after

see feel asleep for her afternoon nap. She woke-up and said her head was still

hurting really bad (tylenol was given 3hrs prior)and was extremely tired and

weak. I thought it was due to her CMT because she stated the weakness was in her

legs and arms only. What concerns me is that her legs were so weak she couldn't

even stand-up for a second. I had to even lift her out of the tub and drape her

over my knee to pull her pj's up. She laid on the couch all evening and when she

attempted to crawl she would moan and state she couldnt even crawl.In the past,

I've had to carry her at times due to her leg weakness and fatigue, however

usually after a rest period she is up and playing again.I have never,never seen

her this physically weak.

s for the headache,I read an article from the CMT association network that

listed symptoms of CMT and headache was one of them,so I always thought this was

why she got headaches.I will definitely mention this to her doctor. She just

recently had an eye exam in August and everything was fine. She just entered

kindergarten this Sept and they are not learning to read yet,j ust coloring and

being read to. Her headache was finally relieved a few hours later,after a dose

of Motrin. The extreme weakness in her arms and legs still persisted. Only

complained of " the itch inside her head " that one time.

Another question I have is that she was complaining she was freezing the whole

time ,I checked her temp(before tylenol was given) and it was normal. When we

were laying on the couch together she stated she was soooo cold. She was wearing

feety pajammas and under a blanket. I asked her what part of her body was cold

and she stated all over even my face is freezing.Again I checked her

temp,heartrate and breathing and everything seems to be okay at the moment.I put

her to bed for the night and will monitor her,Of course I will be sleeping with

her tonight.

Could the Flu or a virus make her feel this fatigued and weak?When a person has

CMT does an illness take longer to recover from or hit more severely? These are

just some of the question I have in my head.I will call her pediatrician first

thing in the morning and I will let you know more when I find outmore. Thanks

for your input !

louise mother of 3 beautiful girls

(Sorry I forgot to sign my posted message before)

[Guest guest]

I have a itchy head and headaches and mine is a side effect of Neurontin. Just a

thought.

Cathleen in Arkansas

[Guest guest]

DEAR MARY LOUISE,

I AM SO SORRY TO HEAR THIS. PLEASE, THAT IS NOT OK AT ALL!!! I AM SO GLAD YOU

ARE GOING TO TAKE HER TO SEE THE DOCTOR FIRST THING

IN THE MORNING.

WE ARE NOT DOCTORS AND WE REALLY NEED TO FIND OUT FAST WHEN SOMETHING

IS NOT WELL WITH US , I THINK. I REALLY HOPE IS JUST A BAD FLU VIRUS, AND WILL

PASS SOON. I WILL BE HERE PRAYING FOR EVERYTHING BE FINE TOMORROW! TAKE CARE AND

PLEASE FEEL FREE TO EMAIL ME ANYTIME. PLEASE LET ME KNOW TOMORROW WILL YOU?

HUGS

JOANA

[Guest guest]

Hi Joana,

Thank you so much for your concern and prayers. Katelyn saw the peditrician

yesterday and she ruled out any immediate medical emergency. Our next step is to

see the neurologist to see what is causing her to have these symptoms.T hey gave

us an appt.early friday morning. She is still complaning of a headaches on and

off throughout the day.She stated she gets a sharp shooting pain on the top

front part of her head that shoots back,then shoots forward again and is

gone, " sometimes it goes quick and sometimes it stays. " She states it hurts really

bad. .Her fatigue and weakness has improved, she is playing a little with rest

periods in-between. Hopefully this is just a virus.I will hopefully find out

more tomorrow and I will keep you posted. Thanks for your support.

louise mother of three beautiful girls

[Guest guest]

Dear Louise,

Thank you for your email! I am really pleased that she is going to see a

neurologist tomorrow. I really hope all will be well for Katelyn!!! It could be

just a bad virus, shall we keep our hope and prayers going stonger now.

All my sincere best wishes to Katelyn. Keep positive!

Hugs

Joana

[Guest guest]

louise,

What type of tests did the pediatrician do to rule out anything. Have they done

a CAT scan? Did the doctor say a virus that causes headaches is going around?

Jackie

[Guest guest]

Hi Jackie,

Sorry for not getting back to you sooner.It has been alittle crazy around here

lately. The peditrician basically did a neuro check,(pupil reaction,equal hand

grasps,etc..)She was basically ruling out a bleed or signs of intracranial

pressure.Then we were sent to see her neurologist and he ordered an MRI and a

MRA of the brain. Nobody mentioned anything about a virus going around that

causes headaches, nor have I heard it from any friends. I also have 2 other

children and they weren't complaining of headaches or not feeling well. Katelyn

doesn't even have a stuffy nose.Have you heard of a virus going around that

causes headaches?

louise mother of 3 beautiful girls

[Guest guest]

louise,

No not specifically, but it was a thought. I realize you are going today and I

hope all goes well and can fix the headaches. Hopefully, you will not have to

wait more than a day for results. Please keep us posted.

Jackie

[Guest guest]

,

You wrote:

>

> Whats the difference between Free T4 and just T4 and Free T3 and just

> T3....

About 99.97% of your T4 and T3 in the blood are attached to enzymes

thyroglobulin, transthyretin, and albumin. In this bound state they have

no active effect on your metabolism. Consequently, the bound version is

often called a " storage " state.

However, the bound and free states are constantly interchanging. The

free T3 or T4 runs into an enzyme and becomes bound. A bound molecule

breaks loose and becomes free. What is measured in a blood test is a

snapshot of the equilibrium condition.

The FT3 and FT4 tests measure the free or active fraction. T4 (total)

and T3 (total) measures the combination of free and bound. Since only

the free version is active, it is usually more informative to measure

FT3. However, if a binding problem is suspected, your doctor might want

to measure several of these, FT3, FT4, T3, and T4, in the same test.

Chuck