lost

[Guest guest]

Hello,

All of us parents on this group understand lost - completely.

First what state are you in?

Go to www.netnet.net/mums for a list of HBOT facilities near you.

Call Gordon and get signed up for a MUMS newsletter.

http://www.netnet.net/mums/howtjoin.htm

Is your child on Medicaid? If so, you could start the ball rolling in

your state to get HBOT covered if your state is not one of those

already trying to get these treatments reimbursed. Read Freels

email/posts. At the bottom you will see all the pertinent files, etc.

that can help you get started on your journey.

A few insurance companies are paying for oxygen therapy. Check yours.

Don't take no for an answer. Appeal. Also, many parents have been

very successful with fund raisers, getting help from their church,

etc. Be persistent. Your child's health and well-being are at stake.

Call your local legal aid for help. Call your state legal rights

association for help. Do google searches for everything you are

looking for. Take notes of all your correspondence over the phone and

via mail. Keep copies of everything you send out in the mail. When

calling for assistance, keep a log of:

Who you talk to

What date

What time

Summary of conversation

All relevant contact phone numbers

Our family has already been in 3 different states to get my 3 year old

daughter HBOT. We aren't finished yet.

If you want to email me at my hotmail address, I will see what I can

do to help get you some answers.

moscarello8@...

Lastly, HBOT has worked with my Bella. Little by little she is

getting better in all areas, fine motor, gross motor, eating, strength

in arms, legs, back, and the list keeps going on. She may need HBOT

the rest of her life. I don't know. No one knows. But it doesn't

matter to me. I will continue to get her the therapies/services that

she needs. HBOT has given her improvements that I have not seen with

almost 3 years of PT, OT, and Speech Therapy and EI (Early

Intervention) Services through the State of Ohio.

This is indeed a very challenging journey for you and your child. I

would wish you good luck, but it takes more than " luck " to get your

little one better. Be persistent, don't take no for an answer. You

are your child's advocate and best ally.

Warmly,

Ann Moscarello

>

> my 2yrold has CP and I still feel so lost how do I even go about

> getting him HBOT's

>

[Guest guest]

If ever there was a group of people who know what you're feeling, it's

us. We've all been there. Please don't beat yourself up about it.

Just keep doing what you're doing... seeking information.

Ditto to the previous response. Join MUMS for support. Talk with

other parents in your state who've had hbot. What state are you in?

We are in Kentucky, but go to Florida for Hyperbarics (Orlando area).

Check with your insurance, some insurances pay for hbot.

One of the things I try to do for Ean is to look at his current

challenges (ie. high muscle tone in legs, mild curvature of spine,

visual impairments, etc.) and ask parents around me if there are

treatments they are doing for these specific problem areas that seem

to be working with their kids. That way, I'm always striving to keep

up to date on the latest and most promising treatments. So often,

it's not one therapy alone, but a combination that works best.

HBOT heals the brain. I figured we couldn't go wrong trying that, so

we did it. However, we are doing ABR therapy now for Ean's structure

and are seeing good results with that as well. (There is a group

called Alternatives for Brain Injury on and a group called

BIA4kids on as well. You could sign up for those 2 groups as

well.

These are just options, don't feel like you have to do all of them.

Just do what you can emotionally and physically now and hold the

others off for a time when you're less overwhelmed.

Please let me know if there is any other way I can help.

Rieger, mom to Ean, 6 y.o.

>

> my 2yrold has CP and I still feel so lost how do I even go about

> getting him HBOT's

>

[Guest guest]

i have been aware that i have hep c for 10 years spending most of that time in

deniel. i do not want to go for testing for many of the obvious reasons many may

also have chosen. symptoms?.. definetely tired and depressed of the silence...at

least.recently becoming committed to attending my health. some morning nasua,

which sounds like it could also be a symptom. looking for feedback particalrly

about alternative herbals i.e. OxyDHQ, zeolite, v pac, custom exilir, v pro,

humic acid.... anyone using?

[Guest guest]

Hi Barbara

There is much info on suppliments in the groups links library.

http://health.dir./group/ /links

- see:

section 004 - Hep C Symptoms

section 005A - Self Help

section 006 - Alternative Info

section 007 - Suppliments and Vitamins

love

don in ks

From: romanceresources <romanceresources@...>Subject: [ ] lost Date: Sunday, October 25, 2009, 2:23 PM

i have been aware that i have hep c for 10 years spending most of that time in deniel. i do not want to go for testing for many of the obvious reasons many may also have chosen. symptoms?.. definetely tired and depressed of the silence...at least.recently becoming committed to attending my health. some morning nasua, which sounds like it could also be a symptom. looking for feedback particalrly about alternative herbals i.e. OxyDHQ, zeolite, v pac, custom exilir, v pro, humic acid.... anyone using?------------------------------------

[Guest guest]

Dan,

I am so sorry. I just wonder about these docs who just say, " I don't know, and

go away " , without follow up and without a referral to someone who may can help.

I wish I had an answer, any answer. 40% of kids with JIA have negative blood

work. Some kids don't have swelling, some have big fat red joints. That makes

for a difficult diagnosis. Xray changes are hopefully far away, because it

takes a little while for the joints to get damaged. 3 weeks would be long

enough for xray change.

I would keep a close relationship with my family doc. He can help control the

pain until you see a new rheumatologist. There are mild narcotics and

non-narcotics that are stronger and non-habit forming. There is a gel called

Voltaren (diclofenac) that is topical and it really helps. You'll need a

prescription.

I would try 2 aleve-440 mg (500 would be " prescription strength " ) twice a day

to keep a constant level of anti-inflammatory in her system. She may do better

with ibuprofen. You can choose. Or beg your doc for somthing stronger. My son

took the naprosyn or aleve with good results at first. It will probably hurt

her tummy, so you may need some prilosec otc. As much as it hurts mild physical

therapy and movement can help. Your fam. phys. may give you a PT consult to

help with pain. Hot tubs really help my kids.

If she hurts too badly and you can't find any help, try urgent care or an ER.

Sometimes you just have to have help.

I'll be keeping you all in my prayers.

Audra

14 poly 07

Peyton 12 poly 08

>

> My family physician thinks my daughter has JRA.

> She has gone from a happy go lucky athletic 13 year old, three

[Guest guest]

was only 2 and he was tentatively diagnosed with SoJRA within 3 weeks.It

took another 3 weeks to start Methotrexate. At first I was scared but after

several months I DARED someone to take him off.It took alot more drugs to put

him in a medicated remission but he has spent most of his JRA life after the

first 18 months in a medicated remission.He is now drug free for about 5 weeks,

not a long time but it is a start after over 4 yrs in a medicated remission.He

is on his 6th yr of playing baseball as a pitcher,catcher,3rd and 1st base. He

even played football yr before last but he wasn't small enough or big

enough.Something is wrong when your 130lb kid is lined up with 250lb+ kids.He

wants to play middle school football and baseball next yr but I know good and

well his ped rheumy Dr. Lovell will NOT fill out the football form.

Don't give up and give it some time.The present is not the future.We travel 6

hrs for care even though there is care 1 hr away.We just don't like them.Do what

you can do and keep looking for the right ped rheumy, it's worth the drive if

need be.

Becki and 12 SoJRA aka The Barefoot Tn Flash

________________________________

From: audra <wynhama@...>

Sent: Thu, March 10, 2011 5:03:15 PM

Subject: Re: Lost

Dan,

I am so sorry. I just wonder about these docs who just say, " I don't know, and

go away " , without follow up and without a referral to someone who may can help.

I wish I had an answer, any answer. 40% of kids with JIA have negative blood

work. Some kids don't have swelling, some have big fat red joints. That makes

for a difficult diagnosis. Xray changes are hopefully far away, because it takes

a little while for the joints to get damaged. 3 weeks would be long enough for

xray change.

I would keep a close relationship with my family doc. He can help control the

pain until you see a new rheumatologist. There are mild narcotics and

non-narcotics that are stronger and non-habit forming. There is a gel called

Voltaren (diclofenac) that is topical and it really helps. You'll need a

prescription.

I would try 2 aleve-440 mg (500 would be " prescription strength " ) twice a day

to keep a constant level of anti-inflammatory in her system. She may do better

with ibuprofen. You can choose. Or beg your doc for somthing stronger. My son

took the naprosyn or aleve with good results at first. It will probably hurt

her tummy, so you may need some prilosecotc. As much as it hurts mild physical

therapy and movement can help. Your fam. phys. may give you a PT consult to

help with pain. Hot tubs really help my kids.

If she hurts too badly and you can't find any help, try urgent care or an ER.

Sometimes you just have to have help.

I'll be keeping you all in my prayers.

Audra

14 poly 07

Peyton 12 poly 08

>

> My family physician thinks my daughter has JRA.

> She has gone from a happy go lucky athletic 13 year old, three

[Guest guest]

Audra,

Thank you so much, we picked up Voltaren last night after reading your email.

I will keep you updated on her progress.

Dan

________________________________

From: audra <wynhama@...>

Sent: Thu, March 10, 2011 6:03:15 PM

Subject: Re: Lost

 

Dan,

I am so sorry. I just wonder about these docs who just say, " I don't know, and

go away " , without follow up and without a referral to someone who may can help.

I wish I had an answer, any answer. 40% of kids with JIA have negative blood

work. Some kids don't have swelling, some have big fat red joints. That makes

for a difficult diagnosis. Xray changes are hopefully far away, because it takes

a little while for the joints to get damaged. 3 weeks would be long enough for

xray change.

I would keep a close relationship with my family doc. He can help control the

pain until you see a new rheumatologist. There are mild narcotics and

non-narcotics that are stronger and non-habit forming. There is a gel called

Voltaren (diclofenac) that is topical and it really helps. You'll need a

prescription.

I would try 2 aleve-440 mg (500 would be " prescription strength " ) twice a day to

keep a constant level of anti-inflammatory in her system. She may do better with

ibuprofen. You can choose. Or beg your doc for somthing stronger. My son took

the naprosyn or aleve with good results at first. It will probably hurt her

tummy, so you may need some prilosec otc. As much as it hurts mild physical

therapy and movement can help. Your fam. phys. may give you a PT consult to help

with pain. Hot tubs really help my kids.

If she hurts too badly and you can't find any help, try urgent care or an ER.

Sometimes you just have to have help.

I'll be keeping you all in my prayers.

Audra

14 poly 07

Peyton 12 poly 08

>

> My family physician thinks my daughter has JRA.

> She has gone from a happy go lucky athletic 13 year old, three