Beth

[Guest guest]

Beth,first, please do not feel that you are ever "rambling off subject" when you share about yourself or Hannah - I am always interested to hear about both of you!! My hope is Hannah will get a proper diagnosis very, very soon so that proper treatment can be started and she will feel better! With Hannah's recent developments, I don't see how any conscientious dr could say there is nothing wrong with her. I think it is a good thing for the drs to look at Hannah and see a happy girl... is shy and when she became so quiet and sort of shut down with all the pain and frustration, many of the drs only saw a "depressed" kid....not a sick one who was in pain, you know? As far as Hannah's pain dr goes, I hope he is long out of the picture....The only reasoning I can find for the rheumy not checking all of 's joints is she saw what she needed i.e. is still swelling..still doesn't justify..I think

they severely overbook these drs at places like UCLA/Mattel Children's...she is highly respected, involved in research, yada yada.... I will say, at 's first visit, she spent 90 minutes with us. has had a complete allergy panel...twice; she tests neg, yet she has allergic symptoms, including random hives, while taking two presc. antihistamines. Her immuno is questioning this other autoimmune...don't even know the name.. something to do with IgE in terms of "chronic idiopathic uticaria" (random hives) (IgE is key in allergic response) and thyroid autoimmunity. I doubt there is anything to it, but we will see.... As for the skin virus, if he is correct, it is a member of the poxvirus and contagious among children or immune suppressed adults and may last 2-3 months in "healthy" adults (it's been longer)...he gave her retin-A to try...I'll wait for the dermatology consult first.Speaking of skin - I was going to suggest checking images of

psoriasis, but I see someone already suggested that! (, 17, poly)Beth Yohnk <yohnkmom@...> wrote: : Never sorry I asked. It is discouraging to hear rheumy's that don't do full exams. I guess I'm so spoiled by an awesome ped that maybe my expectations are too high. That is my fear as well with getting Hannah back in. I don't want a doctor to

simply look at her see a happy girl who is athletic and say nothing is wrong with her. Her pain doctor actually told us once that if she really had arthritis she could not be so muscular. She needs to be examined from her neck down to her toes. I still feel strongly she has some form of spondy and I really do need to get her in soon. Ok, I rambled and am now off subject, very sorry. I'll be curious what the derm has to say. It could be viral, but 3 months seems like a long time for a virus. Has she ever had allergy testing? Maybe its an allergy to something that was triggered by her JRA? What other immune diseases are they testing her for? I'm not familiar with IgE, but I know it is part of the HISS panel. Hannah's IgE was normal, but that is how we found her IGG deficiency. I'll be very interested to hear what you find out as and

Hannah seem to have lots in common in their health issues. Take care of you and hope you get to feeling better soon. Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) Re: Insurance - *#$ & !*#($ and venting @group s.com> Sorry - I know I am waaaaaay behind in responding to e-mails > this week as my hands have been awful....but my dander is so up > right now, I had to vent or burst...> > my husband has been pushing me to verify out insurance coverage > for as she will be turning 18 late May and we don't want > any surprises. Well, she is covered til 19, then til 25 IF > she is a full-time student. BUT, let her be even 1/2 > credit short, and she will no longer have insurance... .no > exceptions.. ..does not matter what the reason, she would be > instantly dropped, permanently. > > Don't our kids (and us parents) have enough worries? > Watching our kids

suffer, miss out on "normal" stuff, alter life > plans, struggle to keep up, take med after med, and still have > daily pain and fatigue?> > She feels out of place at high school, as all of her > friends are self-focused and she is in such a different > place...one boy kept asking why she is absent so must and she > finally told him..the first and only she has told...kids are > writing a controversial essay for english - most chose abortion > or lowering the drinking age...my child is writing (all > her idea) on insurance companies and their exclusionary pre-> existing clauses..she is 17 and her mind is thinking ahead about > these things. Instead of parties on the weekends, she is looking > to volunteer for a group that provides fun activities for > children with cancer and their families. But, right now, > it is a lonely place to be.>

> Anyway, sorry, off my soapbox there...it just seems such a major > injustice that these kids who are ill and are trying so hard to > accomplish some normalcy with their life (e.g. achieve college > degree), may end up jeopardizing their healthcare, but they have > no choice because the 12 units is they only way to > maintain the healthcare. > > Have any others faced this, where their child just could not > handle the full-time credits? What options are out > there? What did you find you could do? If her > disease was under control, I might not feel so worried....just > this a.m., she showed me her fingers, and they did not even look > like they belonged on her hand, they were so swollen and > misshapen... and her migraines have been worse as well....I think > she is scared, though she doesn't come right out and say so, she > gets

moody and sullen. She is to increase the mtx tonight > but if it hasn't done much so far, is it time to push for a > biologic? She has been on the mtx 6 weeks now.> > Thanks for allowing the vent....I am worried too...and when > she gets to feeling so bad physically, so tends to > communicate less, and that is difficult... .ah, teenagers... .> > Any input on the insurance dilemmas, or even things > we can do to fight these terrible standards, and/or where > to begin, I'm anxious to learn!> > Thanks all, for your patience.> > nancy> worried mom of , 17, poly, cvid, migraines> > > ------------ --------- --------- ---> Catch up on fall's hot new shows on TV. Watch > previews, get listings, and more!

Don't let your dream ride pass you by. Make it a reality with Autos. Don't let your dream ride pass you by. Make it a reality with Autos. ____________ _________ _________ _________ _________ __

[Guest guest]

Veri:

We have been told that she is hypermobile. They tell us that is a contributing factor to her pain. We have also been told by her ped that her knee joints are very loose. I think that is why she suffers frequent sprains of her knee & ankle. I am hypermobile too and can bend my hands back way farther than they are supposed to go (which really grosses my husband out LOL). And yes, Hannah has flat feet too, but I'm not convinced that is a huge contributor to her pain. I'm really hoping our next round of appts will bring something out. I'm going to talk to them about her loose joints and sprains and hope they will test for things they have not thought of before (such as CTD; EDS and spondy).

Does that help at all???

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Beth

Beth, I think I have read you make comments about Hannah being hyper-mobile. What exactly does that mean to her? When we were at the rheumy last month he told us that Jaye is hyper-mobile. He mentioned that her being flat footed was part of that. What problems does this cause? I realize that Jaye can sit in positions that hurt me just to look at her. She can sit in those positions and still move afterward. For me, I would be stuck forever and or broken.Veri & Jaye 13 poly

Email and AIM finally together. You've gotta check out free AOL Mail!

[Guest guest]

Thanks Beth. I just had never heard of the hypermobil before reading it on the posts here and then the rheumy said Jaye is also. I think he just said it would contribute to the pain in her feet. While we were at the rheumy we also discovered that Kristie Jo my 16 year old is also hypermobil. I am double jointed but not hypermobil, my feet are somewhat flat but not nearly as flat footed as both of my girls and my son.

Veri & Jaye 13 poly

Re: Beth

Veri:

We have been told that she is hypermobile. They tell us that is a contributing factor to her pain. We have also been told by her ped that her knee joints are very loose. I think that is why she suffers frequent sprains of her knee & ankle. I am hypermobile too and can bend my hands back way farther than they are supposed to go (which really grosses my husband out LOL). And yes, Hannah has flat feet too, but I'm not convinced that is a huge contributor to her pain. I'm really hoping our next round of appts will bring something out. I'm going to talk to them about her loose joints and sprains and hope they will test for things they have not thought of before (such as CTD; EDS and spondy).

Does that help at all???

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Beth

Beth,

I think I have read you make comments about Hannah being hyper-mobile. What exactly does that mean to her? When we were at the rheumy last month he told us that Jaye is hyper-mobile. He mentioned that her being flat footed was part of that. What problems does this cause? I realize that Jaye can sit in positions that hurt me just to look at her. She can sit in those positions and still move afterward. For me, I would be stuck forever and or broken.

Veri & Jaye 13 poly

Email and AIM finally together. You've gotta check out free AOL Mail!

[Guest guest]

FYI, Veri, 'double jointed' is a lay term for hypermobility. Ü--ehttp://www.medicinenet.com/hypermobility_syndrome/article.htm"What is the joint hypermobility syndrome? The joint hypermobility syndrome is a condition that features joints that easily move beyond the normal range expected for a particular joint. The joint hypermobility syndrome is considered a benign condition. It is estimated that 10%-15% of normal children have hypermobile joints, or joints that can move beyond the normal range of motion. There is a tendency of the condition to run in families (familial). It is felt that certain genes are inherited that predispose to the development of hypermobile joints. Genes that are responsible for the production of collagen, an important protein that helps to glue tissues together, are suspected of playing a role. Joint hypermobility is also a feature of a rare, but more significant medical condition called Ehlers-Danlos syndrome that is characterized by weakness of the connective tissues of the body. This condition is inherited in specific genes passed on by parents to their children. What are the symptoms and signs of joint hypermobility? Because the joints are capable of excessive motion in people with the joint hypermobility syndrome, they are susceptible to injury. Symptoms of the joint hypermobility syndrome include pains in the knees, fingers, hips, and elbows. There is a higher incidence of dislocation and sprains of involved joints. Scoliosis (curvature of the spine) occurs more frequently in people with hypermobile joints. Joint hypermobility tends to decrease with aging as we become naturally less flexible. Signs of the syndrome are the ability

to place the palms of the hands on the floor with the knees fully extended, hyperextension of the knee or elbow beyond 10 degrees, and the ability to touch the thumb to the forearm. How is hypermobility syndrome treated? Often joint hypermobility causes no symptoms and requires no treatment. Many individuals with joint hypermobility syndrome improve in adulthood. Treatments are customized for each individual based on their particular manifestations. Joint pains can be relieved by medications for pain or inflammation. Proper physical fitness exercise can strengthen muscles and stability, but the nature of the exercise should be designed to avoid injury to joints."veristroud@... wrote: Thanks Beth. I just had never heard of the hypermobil before reading it on the posts here and then the rheumy said Jaye is also. I think he just said it would contribute to the pain in her feet. While we were at the rheumy we also discovered that Kristie Jo my 16 year old is also hypermobil. I am double jointed but not hypermobil, my feet are somewhat flat but not nearly as flat footed as both of my girls and my son. Veri & Jaye 13 poly Re: Beth

Veri: We have been told that she is hypermobile. They tell us that is a contributing factor to her pain. We have also been told by her ped that her knee joints are very loose. I think that is why she suffers frequent sprains of her knee & ankle. I am hypermobile too and can bend my hands back way farther than they are supposed to go (which really grosses my husband out LOL). And yes, Hannah has flat feet too, but I'm not convinced that is a huge contributor to her pain. I'm really hoping our next round of appts will bring something out. I'm going to talk to them about her loose joints and sprains and hope they will test for things they have

not thought of before (such as CTD; EDS and spondy). Does that help at all??? Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) Beth Beth, I

think I have read you make comments about Hannah being hyper-mobile. What exactly does that mean to her? When we were at the rheumy last month he told us that Jaye is hyper-mobile. He mentioned that her being flat footed was part of that. What problems does this cause? I realize that Jaye can sit in positions that hurt me just to look at her. She can sit in those positions and still move afterward. For me, I would be stuck forever and or broken. Veri & Jaye 13 poly Email and AIM finally together. You've gotta check out free AOL Mail! __________________________________________________

[Guest guest]

BethDid you get your results yet? I hope that all is well.

is doing good. We had a little scare last night with his heart. The maddening thing is, the cardiologist had said something about switching his blood pressure med, but didn't do anything about that. I was talking to our hospital medical director today, and asked him who his cardiologist was, as I definitely need to get a new one. He said he was inbetween docs, and had been recommended to...gasp...the very one that gave us trouble! Well, I proceeded to tell him about our experience, and he was appalled. Needless to say, this word will spread quickly in the medical community. 's ENT surgeons office called today to check on , and they APOLOGIZED for all the trouble! I told them that they had gone above and beyond in dealing with the cardiology office, and none of the trouble was their fault at all. They were very disgusted with the cardiologist as well, so he is getting a bad name all around.

Please keep us informed about your tests. Hope Hannah is doing well.

and Rob 18 JAS ,> @group s.com> > > I have been waiting to read an update on how the orencia went. > I > > hope > > all is ok, and no news means you are just busy.> > > > let us know who you are doing when you get a chance.> > > > hugs Helen and (10,systemic)> > > > > > > > >

[Guest guest]

BETH

How is your dad doing? Just thinking about him this morning...

and Rob 18 JAS

quick prayer for my dad

> Hi Everyone:

> Please say a quick prayer this morning for my dad. He is

> starting radiation and chemo today for the next 6 weeks. I

> think it will be very hard on his body as he is not overall

> healthy and is almost 75.

>

> Thanks.

>

> Beth

>

>

[Guest guest]

Hi :

My dad is doing quite well all things considered. He started chemo and

radiation last week. I actually went with him on Wednesday as my mom had an

appt. It is a very nice facility and gave us some one on one time, which we

rarely have. He is feeling well, no nausea or excessive tiredness, so that's

good news.

How are you feeling? Any noticeable change with new med?

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

quick prayer for my dad

@group s.com

> Hi Everyone:

> Please say a quick prayer this morning for my dad. He is

> starting radiation and chemo today for the next 6 weeks. I

> think it will be very hard on his body as he is not overall

> healthy and is almost 75.

>

> Thanks.

>

> Beth

>

>

[Guest guest]

hi Beth,

goes with the ice for migraines too, but at the base of her neck. The

heat can help the sinuses drain better....I suppose it would be awkward having

heat on her face and ice on her neck - her poor head would not know what was

going on!

It is so curious that you mention her hands - I tell you, she and ....two

peas in a pod...the hands (and elbow, which I had not noticed...duh...) were

probably the most decisive factor for . Since Hannah has the

hypermobility too, have her hold her hands straight and vertical - my bet is her

middle joints are hypermobile, but what do her distal joints do?

I'm glad Hannah has her Christmas shows to look forward to this weekend and that

she is feeling better. Would love to see pics. Please tell her to have a great

time! I read that her new rheumy appt is tomorrow? I will be thinking of you

both and saying lots of extra prayers tonight! You are practically a pro at

this initial rheumy visit now - I know you know all the right things to say but

remember - kids don't get multiple, chronic sprains for no reason, hypermobile

or not (poor paraphrase of Dr Lehman) and I believe her hands are a significant

development. Were you able to get a picture of her knuckles? Either way, our

thoughts are with you. It is past time for Hannah to get a diagnosis and get

properly treated.

My best to you and please let us know how it goes.

Hugs to you both,

(, 17, poly)

Beth Yohnk <yohnkmom@...> wrote: Hi

:

Her migraine started last week Monday and was not headache free until Sunday.

Definitely the longest headache she ever had. She went back to school last

Thursday even though she still did not feel well. We did do some warm

compresses, but when she gets migraines she likes cool compresses so that was a

bit of an issue for her.

Sunday night her hands started flaring and were visibly swollen in all of her

knuckles. This is a really busy week for her. She's been rehearsing for her

Christmas show and opening night is Friday. She has four shows total next

weekend, which always wears her out, but she loves being on stage and the

dancing is so good for her.

thanks for all your suggestions!

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Re: migraine saga & question - sorry it's long

Hi Beth,

I am so thankful the issue with receiving your posts is finally resolved -

yeah!! I would imagine you have received some good answers regarding Hannah, but

considering 's migraine and sinus infection history, thought I would share

our experience with you here.

First, I am sorry she has been suffering so - migraine or sinus

headache...either is awful but together...wow. ..' s migraines, as you

know, are atypical, as she is never headache-free. Mine are more traditional,

and yes, I have migraines that may last several days. When using a significant

amount of meds to treat a stubborn migraine, you can be left with a nasty

residual headache - but - sinus infections & sinus headaches can be severe and

stubborn and could leave Hannah with a significant headache for quite a few

days. Generally the nature of the sinus is throbbing toward the front of the

face. In addition to light massage at the sinus points, we use warm compresses

on the sinuses.

I was glad to see that her level of pain came down significantly to 3-4. How is

Hannah feeling this week? I'm hoping much, much better!

Please give her hugs for us.

and

Beth Yohnk <yohnkmomsbcglobal (DOT) net> wrote: Hi:

I have yet another migraine question. Sorry if this is long. Hannah came home

on Monday with a severe migraine. She took an Imitrex at 4:30 and I had her take

another at 6:30 when I got home from work because she was getting worse. She

also had a 100.1 temp. Not high enough to treat (according the nurse on call) so

I put her to bed around 8:30. She woke up Tuesday and it was no better. Since

her last Imitrex was less than 12 hours before that, I did not want to give her

any more so I gave her Tylenol and kept her home. I called the ped for advice

because she has never had a migraine last into the next day (this was not her

hormonal migraine that was 10 days ago). He was concerned enough to see her. He

found an underlying sinus infection, which he said could be preventing the

migraine from getting better. Put her on Omnicef, twice per day for 10 days.

Said to take her home and give 2 more Imitrex (that was around 2:00 and pain was

around 7).

At 4:00 she called me at home and said her pain was up to 10 and she was dizzy.

I called the ped again to let him know and he thinks the migraine is viral and

to stop the Imitrex for now. She fell asleep for the night at 8:00 and never

woke when we moved her. Yesterday morning she woke up still in significant pain,

but said the headache was more of headache and not so much migraine. Today she

woke still with headache (3 or 4 pain scale) and went to school.

Here's my question: for those of you (or your kids) who suffer from migraines,

do you get migraines from sinus infections? Do you get residual headaches after

your migraine pain subsides? How long can I expect the headache to last? Sorry

for the questions, but she's never had a migraine this severe or one that lasted

so long.

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

[Guest guest]

I'll be keeping you guys in thought and prayer tomorrow...

and Rob 18 JAS

Re: A case of a girl with Spondy last night on

> " Mystery Diagnosis "

>

> I am so glad someone else saw that episode! But it was also just

> SO FRUSTRATING that the Uveitis didn't clue someone in from the

> onset. That could have saved her years of pain and

> damage....ugh. And, Isasadora, I couldn't agree more that

> sometimes seeing the same Rheumatologist for years is a big

> mistake. If it weren't for Isabelle's " 2nd opinion " , we may

> still be in PT undoing the damage that the first Rheumy has

> caused by not properly treating her. Now I even think it's

> important to get a second opinion if things seem to be going

> well!

>

> Issadora <FlyfreeIzzie@ gmail.com> wrote: I watched that las

> t night too... I was going to email about it but than

> didnt. It was a good story.... I thought she had Psoriatic

> Arthritis until

> she got to the Rheumatologist and as soon as she couldnt touch

> her toes,

> than it was like oh she has seronegative spondylo....

>

> It's interesting that she had the sores, they went away, than

> the Uveitis

> which had only been discovered early because of getting the eye

> surgery.Than Her elbow that locked, the knee, her finger...

>

> It's great that she had that wonderful boyfriend that just took

> over and

> found the best Rheumatologist to take a closer look at her case.

> GOes to

> show you that repeatedly seeing the same Rheumatologist isn't

> always the

> best choice esp when you aren't getting better. I was suprised

> it took her

> so long to be reffered to a Rheumatologist esp with the Uveitis.

> I remember

> talking to a opthamologist once who said that he and others in

> his clinic

> had actually diagnoised a lot of rheumatic diseases,

> particularly types of

> JRA because of the presnece of Iritis or Uveitis that they

> commonly find

> before other symptoms come out. I guess it was the seronegative

> part that

> kept making things seem off. It bothers me that Just beause her

> labs were

> 'normal; that is what really kept her from getting a proper

> diagnosis. She

> litteraly had frozen joint and latter more joints but because of

> normallabs.. the inital rheumatologist just sorta tried her on

> different meds but

> didn't really have a clue. It seems like it's hard for

> Rheumatologist to

> think OUTSIDE the box and that is really something. The

> Rheumatologist she

> saw in the end really took his time and thats good but man, she

> had to loose

> tons of weight, loose motion in several joints, etc...

>

> At least she finally was diagnoised and symptoms did get

> 'better'. Glad she

> got married in the end to and her boyfriend stuck with her

> despite her being

> sick.. something she herself worried about... that i can so

> RELATE to!

>

> Okay so just had to add tons of commentary to that one..

>

> Issadora

>

> On Dec 4, 2007 5:58 AM, hadley_messner <hmessnerverizon (DOT)

> net> wrote:

>

> > I think someone else in this group may have already mentioned this

> > episode of Mystery Diagnosis. I saw it last night and was just

> so glad

> > to see that they mentioned she first had Uveitis, then

> Psoriais, then

> > joint pain, and then finally, years later discovered some of

> her spine

> > was fused ---- ultimately she was diagnosed with Spondy. I

> felt badly

> > for her that it was literally 10 years to diagnose her!

> However, glad

> > they have this TV show to shed some light about the disease

> for the

> > general public.

> >

> > -Hadley (Isabelle, 3.5 yrs. JIA)

> >

> >

> >

>

> --

> " I am not sick. I am broken. But I am happy as long as I can paint. "

>

> --Frida Kahlo

>

>

[Guest guest]

Veri:

Once we get through this weekend of shows for Hannah I am going restart all my

research. Going back to square one. Shriners is a thought, I can't remember

which one is the closest to us with a rheumy department (Minnesota maybe?).

Mayo is another option. I think before I decide I am going make lots of phone

calls and explain the type of doctor I'm looking for. Calls are free, then

decide from there.

We'll also take all the prayers you can spare

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Beth

Beth,

Do not forget to consider going to a Shriners Hospital. I do not know if you

have a connection there or not. When we were going through the diagnosis

phase I had a Shriner contact me to let me know that they would pay for the

transportation, the motel while there and all the expenses that insurance would

not

cover. Fortunatly we did not have to travel that road, but it may be something

you want to look into. My understanding is that you can get into a program

that they take you there and admit the child to the hospital and all the

different doctors work together until they get a diagnosis they can agree on. We

were

told to plan on up to a full week if we chose to go. We are still praying

for you all, and extra prayers for you to know what steps to take next.

Veri

************ ********* ********* ********

Check out AOL's list of 2007's

hottest products.

(http://money. aol.com/special/ hot-products- 2007?NCID= aoltop0003000000 0001)

[Guest guest]

Beth

Don't discount Cincinnati Children's ...they have about 10 ped rheumies on staff

and are considered one of the best centers in the world....

1800-344-2462, then ask for rheumatology

and Rob 18 JAS

Beth

>

> Beth,

>

> Do not forget to consider going to a Shriners Hospital. I do not

> know if you

> have a connection there or not. When we were going through the

> diagnosis

> phase I had a Shriner contact me to let me know that they would

> pay for the

> transportation, the motel while there and all the expenses that

> insurance would not

> cover. Fortunatly we did not have to travel that road, but it

> may be something

> you want to look into. My understanding is that you can get into

> a program

> that they take you there and admit the child to the hospital and

> all the

> different doctors work together until they get a diagnosis they

> can agree on. We were

> told to plan on up to a full week if we chose to go. We are

> still praying

> for you all, and extra prayers for you to know what steps to

> take next.

>

> Veri

>

> ************ ********* ********* ********

> Check out AOL's list of 2007's

> hottest products.

>

> (http://money. aol.com/special/ hot-products- 2007?NCID=

> aoltop0003000000 0001)

>

>

[Guest guest]

Believe me they are on my list! I also want to check into UW Madison here in

Wisconsin. We have several adult patients in our practice that rave about the

knowledge of the staff there. I'll have check on their ped department though.

Good luck on your infusion today...and happy birthday (Hope I did not miss it

already).

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Beth

>

> Beth,

>

> Do not forget to consider going to a Shriners Hospital. I do not

> know if you

> have a connection there or not. When we were going through the

> diagnosis

> phase I had a Shriner contact me to let me know that they would

> pay for the

> transportation, the motel while there and all the expenses that

> insurance would not

> cover. Fortunatly we did not have to travel that road, but it

> may be something

> you want to look into. My understanding is that you can get into

> a program

> that they take you there and admit the child to the hospital and

> all the

> different doctors work together until they get a diagnosis they

> can agree on. We were

> told to plan on up to a full week if we chose to go. We are

> still praying

> for you all, and extra prayers for you to know what steps to

> take next.

>

> Veri

>

> ************ ********* ********* ********

> Check out AOL's list of 2007's

> hottest products.

>

> (http://money. aol.com/special/ hot-products- 2007?NCID=

> aoltop0003000000 0001)

>

>

[Guest guest]

They are correcting the problem. You must have missed my last email I

posted regarding them calling me. As far as questioning it before

finalizing my order.....It didn't show the weight or s/h charges until

after entered all of my credit card info so it was too late. So I made

myself a note that when I rec'd the order to check the weight of the box

and check into it if there was a discrepancy.

Re: question time

Some of the shopping carts will estimate the shipping by the number of

items, rather than actual weight. I would call them and complain and see

what

happens, although the time to do that is before you finalize your order,

really.

Hopefully, they will refund you something.

Beth

_www.soapandgarden.com_ (http://www.soapandg

<http://www.soapandgarden.com/> arden.com/)

www.saponifier.com

Recent Activity

*

1

New

</members;_ylc=X3oDMTJmaGg5Nj

E0BF9TAzk3MzU5NzE0BGdycElkAzIyMjY2NDEEZ3Jwc3BJZAMxNzA1MTYyNDA0BHNlYwN2dG

wEc2xrA3ZtYnJzBHN0aW1lAzExOTk5MTgxNTc-> Members

*

3

New

</spnew;_ylc=X3oDMTJmZDZkbDQ1

BF9TAzk3MzU5NzE0BGdycElkAzIyMjY2NDEEZ3Jwc3BJZAMxNzA1MTYyNDA0BHNlYwN2dGwE

c2xrA3ZwaG90BHN0aW1lAzExOTk5MTgxNTc-> Photos

*

1

New

</files;_ylc=X3oDMTJnYWFqdGxp

BF9TAzk3MzU5NzE0BGdycElkAzIyMjY2NDEEZ3Jwc3BJZAMxNzA1MTYyNDA0BHNlYwN2dGwE

c2xrA3ZmaWxlcwRzdGltZQMxMTk5OTE4MTU3> Files

Visit

<;_ylc=X3oDMTJlaTcwb2Z0BF9TAz

k3MzU5NzE0BGdycElkAzIyMjY2NDEEZ3Jwc3BJZAMxNzA1MTYyNDA0BHNlYwN2dGwEc2xrA3

ZnaHAEc3RpbWUDMTE5OTkxODE1Nw--> Your Group

Healthy Eating

Find

<http://us.ard./SIG=12m81oq9n/M=493064.12016231.12445647.970657

1/D=grphealth/S=1705162404:NC/Y=/EXP=1199925357/A=4718983/R=0/SIG=1

1kunoe70/*http://advision.webevents./healthyeating/>

Groups

that are focused

on healthy eating.

Health

Looking

<http://us.ard./SIG=12m4ndrks/M=493064.12016303.12445695.970657

1/D=grphealth/S=1705162404:NC/Y=/EXP=1199925357/A=5008808/R=0/SIG=1

0q26t77l/*http://health./> for Love?

Find relationship

advice and answers.

Ads on

Learn

<http://us.ard./SIG=12m29pv2u/M=493064.12016308.12445700.867457

8/D=grphealth/S=1705162404:NC/Y=/EXP=1199925357/A=3848643/R=0/SIG=1

31q47hek/*http://searchmarketing./arp/srchv2.php?o=US2005 & cmp=Y

ahoo & ctv=Groups4 & s=Y & s2= & s3= & b=50> more now.

Reach customers

searching for you.

..

<http://geo./serv?s=97359714/grpId=2226641/grpspId=1705162404/m

sgId=33407/stime=1199918157/nc1=4718983/nc2=5008808/nc3=3848643>

[Guest guest]

I did see it later, , and I'm very glad it's being taken care of to your

satisfaction. :-) I always like to see a supplier come through.

I wish, though, that all sites would allow you to see the shipping charges

before you've committed to the order. I'm getting to the point where I ask

first before placing the order to avoid nasty surprises. I know from my own

shopping cart that without actually hand-calculating each order's shipping

charges, someone is going to pay more than actual shipping. It's a matter of

choosing which one is best most of the time.

Beth

_www.soapandgarden.com_ (http://www.soapandgarden.com/)

www.saponifier.com

In a message dated 1/9/2008 6:11:04 P.M. Eastern Standard Time,

jmurray2@... writes:

They are correcting the problem. You must have missed my last email I

posted regarding them calling me. As far as questioning it before

finalizing my order.....It didn't show the weight or s/h charges until

after entered all of my credit card info so it was too late.

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Thanks for the great info regarding the titanium oxide. I'll give it a

try exactly like your instructions go. I have a question on your last

sentence....is that 1/2 teaspoon per pound? I just want to be sure.

Thanks

Re: Shaye & other M & Per's

, your t.d. is fine, and will work for making your soap white. Look

at

the packaging to see if it's water-soluble or oil-soluble. If you can't

find

that info., just put some t.d. in a jar w/ water and shake it well. If

it

incorporates, it's water-soluble. If not, it's oil-soluble.

Now, a trick I have found to get the t.d. to color better, is I add my

t.d.

to say, a cup of soap and stir it in. I stir as I cool and then mold it

and

let it harden. Later, I add that t.d. to whatever I'm coloring and it

mixes

in much better and goes further. It takes about .5t./lb. of soap base,

btw.

HTH,

Beth

_

Visit

<;_ylc=X3oDMTJlZzd2NGwzBF9TAz

k3MzU5NzE0BGdycElkAzIyMjY2NDEEZ3Jwc3BJZAMxNzA1MTYyNDA0BHNlYwN2dGwEc2xrA3

ZnaHAEc3RpbWUDMTIwMjE4ODA1MQ--> Your Group

Health

Early

<http://us.ard./SIG=13rj846sm/M=493064.12016303.12582636.970657

1/D=grphealth/S=1705162404:NC/Y=/EXP=1202195251/L=/B=u.2pBtFJq24-/J

=1202188051621108/A=5191946/R=0/SIG=12u9heqpd/*http://health./b

reastcancer-symptoms/breast-cancer-symptoms/healthwise--tv3621.html>

Detection

Know the symptoms

of breast cancer.

Meditation and

Lovingkindness

<http://us.ard./SIG=13r9cgn68/M=493064.12016231.12582634.970657

1/D=grphealth/S=1705162404:NC/Y=/EXP=1202195251/L=/B=vO2pBtFJq24-/J

=1202188051621108/A=5191951/R=0/SIG=11iiaadso/*http://new.groups..c

om/giftoflovingkindness>

A Group

to share and learn.

Sell Online

Start

<http://us.ard./SIG=13rl1ma1s/M=493064.12016255.12445662.867457

8/D=grphealth/S=1705162404:NC/Y=/EXP=1202195251/L=/B=ve2pBtFJq24-/J

=1202188051621108/A=4025291/R=0/SIG=12bsapn24/*http://us.rd./ev

t=44092/*http://smallbusiness./merchant> selling with

our award-winning

e-commerce tools.

..

<http://geo./serv?s=97359714/grpId=2226641/grpspId=1705162404/m

sgId=33559/stime=1202188051/nc1=5191946/nc2=5191951/nc3=4025291>

[Guest guest]

Yes, that seems to work out well for me, and will actually whiten quite a

bit of soap.

Beth

_www.soapandgarden.com_ (http://www.soapandgarden.com/)

www.saponifier.com

In a message dated 2/5/2008 5:11:57 P.M. Eastern Standard Time,

jmurray2@... writes:

I have a question on your last

sentence....is that 1/2 teaspoon per pound? I just want to be sure.

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

[Guest guest]

Thanks so much for your help.

Re: Beth

Yes, that seems to work out well for me, and will actually whiten quite

a

bit of soap.

Beth

_www.soapandgarden.com_ (http://www.soapandg

<http://www.soapandgarden.com/> arden.com/)

www.saponifier.com

In a message dated 2/5/2008 5:11:57 P.M. Eastern Standard Time,

jmurray2twcny (DOT) <mailto:jmurray2%40twcny.rr.com> rr.com writes:

I have a question on your last

sentence....is that 1/2 teaspoon per pound? I just want to be sure.

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.

<http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp003

000000025>

aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp003000000025

48)

[Guest guest]

Gee, Beth. Where would I get goatsmilk. I would assume it would have to

be in powder form because it seems like I would have to add too much in

liquid form and the M & P wouldn't set up very well. I make an awesome

oatmeal, goatsmilk & honey soap that I get a lot of call for. That's

really the only time I use it.

Re: Shaye (again)

You could always add goatsmilk yourself. :-) I just buy clear base and

then add whatever I want to it, t.d., milk, shea butter, whatever.

Beth

_www.soapandgarden.com_ (http://www.soapandg

<http://www.soapandgarden.com/> arden.com/)

www.saponifier.com

In a message dated 2/6/2008 8:29:23 P.M. Eastern Standard Time,

jmurray2twcny (DOT) <mailto:jmurray2%40twcny.rr.com> rr.com writes:

OK, thanks anyways. I'll have to find some on the web.

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.

<http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp003

000000025>

aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp003000000025

48)

[Guest guest]

I use powder and add enough water to it to make it a thick liquid before I

add it to the base. Do you use fresh or canned gm for your OMH soap? If so,

you could freeze it in an ice cube tray so you'd have some to add to m & p.

You could add 1 tablespoon or so per lb. of base.

I don't recall ever seeing powdered gm locally.

Beth

_www.soapandgarden.com_ (http://www.soapandgarden.com/)

www.saponifier.com

In a message dated 2/6/2008 11:15:14 P.M. Eastern Standard Time,

jmurray2@... writes:

Gee, Beth. Where would I get goatsmilk. I would assume it would have to

be in powder form because it seems like I would have to add too much in

liquid form and the M & P wouldn't set up very well.

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

[Guest guest]

I always bought the Goatsmilk M & P so I never had to buy goatsmilk as an

additive. You said you use powder and add water to it to make a thick

liquid. Where do you buy the powdered goatsmilk?

Re: Beth

I use powder and add enough water to it to make it a thick liquid before

I

add it to the base. Do you use fresh or canned gm for your OMH soap? If

so,

you could freeze it in an ice cube tray so you'd have some to add to

m & p.

You could add 1 tablespoon or so per lb. of base.

I don't recall ever seeing powdered gm locally.

Beth

_www.soapandgarden.com_ (http://www.soapandg

<http://www.soapandgarden.com/> arden.com/)

www.saponifier.com

In a message dated 2/6/2008 11:15:14 P.M. Eastern Standard Time,

jmurray2twcny (DOT) <mailto:jmurray2%40twcny.rr.com> rr.com writes:

Gee, Beth. Where would I get goatsmilk. I would assume it would have to

be in powder form because it seems like I would have to add too much in

liquid form and the M & P wouldn't set up very well.

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.

<http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp003

000000025>

aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp003000000025

48)

[Guest guest]

I buy it online. Among the suppliers that carry it is _www.lotionmaker.com_

(http://www.lotionmaker.com) .

Beth

_www.soapandgarden.com_ (http://www.soapandgarden.com/)

www.saponifier.com

In a message dated 2/7/2008 2:49:46 P.M. Eastern Standard Time,

jmurray2@... writes:

I always bought the Goatsmilk M & P so I never had to buy goatsmilk as an

additive. You said you use powder and add water to it to make a thick

liquid. Where do you buy the powdered goatsmilk?

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

[Guest guest]

hi Beth,

I am feeling much better, except for my arthritis, thanks. I want to thank you

for the prayers, happy thoughts, and cards that you sent. You are such a

wonderful support! It was great to receive cards from you (with one for me too!

) and , and a phone call from Robbin - it really helped. Will try to post

later.

So thrilled to hear of your Dad's results and progress!!!! That is fantastic

news! I pray he continues in the same fashion and they never find any cancer in

him again. Sorry Hannah has been having such a rough go of the viruses this

winter! Your weather is brutal up there! Michigan was tough, but Wisconsin's

weather was extreme in comparison. The snow was beautiful, but then I did not

have to drive in it or shovel it....just trudge from the Inn to hospital, and

they kept the path clear most of the time. Is Hannah doing any better? I did

hear the flu shots were too weak of a strain this season. I agree with

about pushing for a trial of IVIG (with Hannah's migraines, sub-Q would likely

be the best bet)...I know very little compared to , but between how often

Hannah is sick, her asthma, and possibly even her GERD, even if she is

borderline with her IgG levels, it would be interesting to see what IVIG might

do for her.

How have you been feeling?

Anyway, thank you again for all your support.

(, 17, poly, cvid, migraines)

Beth Yohnk <yohnkmom@...> wrote: Hi

:

Glad you are back home safely. I'm sure you;re glad to be back to warmer

California. Sorry to hear you and have been so ill. Hope was

able to get some answers in Michigan. Hope you will update when you are feeling

better.

Beth & Hannah, 11, unspecified arthritis; asthma; gerd;migraines

Sending prayers & happy thoughts,

Beth :-)

[Guest guest]

Beth

Thank you so much, as always, for your sweet words...

and Rob 18 JAS

Re: Arthritis stinks!

> @group s.com

>

> > -

> >

> > This is nothing I can say... I am crying for you and for

> > Rob and for all the kids, young adults, old adults....

> everyone

> > with this stinking disease! I wish I had something to

> > offer - but have nothing but my shoulder

> > I know there are worse things, and Lord knows we have all

> > heard it - all been told to be grateful that it's not more

> > things, worse things. Sometimes, it is little comfot

> > against the frustration of being helpless to soothe your

> child's

> > (or young man's) pain. I will just be praying for you

> > all... and especially for Rob to be able to have his meds back soon.

> >

> > What you said about people not being able to see what Rob

> > is going through. It reminds me of the spoon theory.

> > Have you ever read it? I think I saw it posted here a

> > couple of times. Essentially, a young adult with JRA came

> > up with the spoon theory to explain to others what living with

> > RA is like. She handed her friend a bunch of spoons to

> > " spend " to get through the day. It took a spoon to get

> > dressed... to shower... to make coffee. And very quickly

> > it became apparent that there are not enough spoons! By

> > mid-afternoon there are choices to be made... shall the last

> > spoon go towards picking up the dry cleaning, but then I don;t

> > have energy to get dinner? Get dinner, but then I can't

> > walk the dog? I thought it was very clever... and I wish

> > people would have to go through the same exercise so they

> might

> > be able to uunderstand. .. just a little.

> >

> > Anway - my thoughts and prayers are coming your way-

> > Colleen

> >

> > snooksmama@insightb b.com wrote:

> > Ok, get

> > ready for a vent...READ AT YOUR OWN RISK

> > So, Rob is off all his meds (which are only methotrexate and

> > Enbrel...NO NSAIDS) because of the mono. Got his EBNA titre

> and

> > its negative, which means he hasn't made antibodies yet to the

> > mono, so no meds for at least 2 more weeks. He says he is

> > feeling bad, won't elaborate (away at school) and is blaming

> it

> > on the weather....felt bad when I brought up the no meds, and

> > then it dawned on him...poor baby.

> > I'm feeling horrible, meds haven't kicked in yet, and off my

> > prednisone.. .yes, I know it would give me relief, but I've

> > already been on it almost continuously the past year and

> already

> > have osteopenia, so I'm stubbornly not taking it. One by one

> the

> > joints have started flaring. The worst are my neck and my left

> > elbow. I'm going to OT and PT in the mornings before work,

> > alternating days, and feel like crap. Having to get up extra

> > early to go to therapy stinks, sleep is not restful at all

> > (unless I take the flexeril for my neck before bed, and then

> I'm

> > still so groggy when I wake up its terrible). Today, I had a

> > substitue OT for my arm, who meant well, but I just wasn't in

> > the mood to be told that eating berries and fruits and taking

> > omega 3's would make me 'all better'. Believe me, I've tried

> all

> > that and my crappy immune system just keeps on thinking my

> > joints are the enemy...and here's an OT who I did think a lot

> of

> > and thought was pretty current on things, and even she

> > doesn't GET IT about arthritis!!

> > I feel like CRAP! And so does Rob!!

> > I know there are much worse things but I am just so tired of

> > being told Oh, Rob looks so great and he doesn't look sick at

> > all, and they never know what he goes through on a daily

> basis.

> > He can't even take an advil, motril or naproxen, celebrex or

> > mobic EVER HIS WHOLE LIFE that might even remotely help with

> > this off-meds flare because of his kidney disease!!! I was

> > heartbroken when I got in his car a few months ago and saw a

> > bottle of Tylenol Arthritis lying on his seat...its like, that

> > is terrible he is taking this med! It all hit home again.

> > And here I am, a 47 year old adult dealing with this crap, and

> > thinking all the while that this is the hell my son has gone

> > through since age 12. I KNOW there are much worse things, Lord

> > knows I see it every day at work and feel very blessed, but

> I'm

> > just feeling tired and having a pity party, and you are the

> only

> > people who truly, truly understand.. .

> > Ok, so would you all keep Rob in your prayers that he develops

> > antibodies SOON so he can go back on meds, and that the Enbrel

> > doesn't lose effectiveness when he is back on? I dread the

> > thought of him going back to where he was...it took so long to

> > get him feeling decent and here he is...

> > I'm rambling too much as usual and know so many on this list

> > just wish they had a dx and game plan for their child, so I'm

> > sorry for this rant...

> > and Rob 18 JAS

> >

> >

[Guest guest]

Beth

Like Michele said, kids with spondy can touch their toes. They do a test (called

the modified Shober) where they bend over and they measure how much distance

from a mark on the spine in the standing position to another marked position on

the spine when they are attempting to touch their toes. It tells them how much

expansion they get of their spine.

Rob was very hard to diagnose because of the underlying hypermobility. His range

of motion was limited when he first 'came down' with arthritis, but to someone

who didn't know him, he was in the normal range. Once he got under control (and

his rheumy remarked on this just last month), it was obvious he was hypermobile

and that when he was uncontrolled, the arthritis had caused the hypermobility to

disappear. The rheumy said " as Rob 'recovers' from his arthritis, he becomes

more and more hypermobile " . He agreed that this was what caused him to be so

hard to diagnose.

and Rob 18 JAS

---- Original Message -----

From: Beth Yohnk <yohnkmom@...>

Date: Monday, February 25, 2008 10:25

Subject: Re: EDS, connective tissue, and Rob with a collagen disease

> Interesting. I've often thought Hannah might have spondy

> due to chronic back/neck pain. However, I've heard kids

> with spondy usually can't touch their toes. However, if

> you're hypermobile you are not going to lose range of motion

> like other kids. Again, I think this is the reason they

> aren't diagnosis her. Just my 2 cents and my frustration.

>

> Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

>

> Sending prayers & happy thoughts,

> Beth :-)

>

>

>

> Re: Photos of Nicks facial

> > > scarring

> > >

> > >

> > >

> > >

> > > have you looked into ehlers-danlos at all? Jinny (11,

> > pauci)On

> > > Sun, 24 Feb 2008 22:27:03 -0000 " hburger64 "

> > > <hburger64hotmail (DOT) com>writes:> I just uploaded a couple

> of

> > pictures

> > > of Nicks facial scarring, they > should be there once

> Georgina

> > > approves them. They are in " Nick's > Album " > > he has a ton

> > of this

> > > kind of scarring else where too, like his > legs,arms and

> > hands. If

> > > he gets a paper cut it ends up being a huge > > round open

> > sore that

> > > takes months to heal.> > Just wanted to share and get any

> > ideas on

> > > what to do to treat them. > I > stick band aids on them with

> > > neosporin, but he hates bandaids on all > > the time and is

> > always

> > > pulling them off. hes also scratching at the > > sores

> because

> > they

> > > itch.> > hugs Helen and (10,systemic) > > > > > > >

> >

> > > Groups Links> > > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ _________ _________

> _________ _

> > > Shed those extra pounds with MSN and The Biggest Loser!

> > > http://biggestloser .msn.com/

> > >

> > >

[Guest guest]

I appear to have normal range of motion now, ten years ago I was hypermobile.

It's not that everything got better, but instead I lost range of motion so I am

no longer hypermobile, my joint damage just made me look like I have normal

range of motion, but now that range of motion is getting worse too.. it's kind

of sad actually. Joint damage is lame.

(JAS, 23)

snooksmama@... wrote:

Beth

Like Michele said, kids with spondy can touch their toes. They do a test (called

the modified Shober) where they bend over and they measure how much distance

from a mark on the spine in the standing position to another marked position on

the spine when they are attempting to touch their toes. It tells them how much

expansion they get of their spine.

Rob was very hard to diagnose because of the underlying hypermobility. His range

of motion was limited when he first 'came down' with arthritis, but to someone

who didn't know him, he was in the normal range. Once he got under control (and

his rheumy remarked on this just last month), it was obvious he was hypermobile

and that when he was uncontrolled, the arthritis had caused the hypermobility to

disappear. The rheumy said " as Rob 'recovers' from his arthritis, he becomes

more and more hypermobile " . He agreed that this was what caused him to be so

hard to diagnose.

and Rob 18 JAS

---- Original Message -----

From: Beth Yohnk <yohnkmom@...>

Date: Monday, February 25, 2008 10:25

Subject: Re: EDS, connective tissue, and Rob with a collagen disease

> Interesting. I've often thought Hannah might have spondy

> due to chronic back/neck pain. However, I've heard kids

> with spondy usually can't touch their toes. However, if

> you're hypermobile you are not going to lose range of motion

> like other kids. Again, I think this is the reason they

> aren't diagnosis her. Just my 2 cents and my frustration.

>

> Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

>

> Sending prayers & happy thoughts,

> Beth :-)

>

>

>

> Re: Photos of Nicks facial

> > > scarring

> > >

> > >

> > >

> > >

> > > have you looked into ehlers-danlos at all? Jinny (11,

> > pauci)On

> > > Sun, 24 Feb 2008 22:27:03 -0000 " hburger64 "

> > > <hburger64hotmail (DOT) com>writes:> I just uploaded a couple

> of

> > pictures

> > > of Nicks facial scarring, they > should be there once

> Georgina

> > > approves them. They are in " Nick's > Album " > > he has a ton

> > of this

> > > kind of scarring else where too, like his > legs,arms and

> > hands. If

> > > he gets a paper cut it ends up being a huge > > round open

> > sore that

> > > takes months to heal.> > Just wanted to share and get any

> > ideas on

> > > what to do to treat them. > I > stick band aids on them with

> > > neosporin, but he hates bandaids on all > > the time and is

> > always

> > > pulling them off. hes also scratching at the > > sores

> because

> > they

> > > itch.> > hugs Helen and (10,systemic) > > > > > > >

> >

> > > Groups Links> > > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ _________ _________

> _________ _

> > > Shed those extra pounds with MSN and The Biggest Loser!

> > > http://biggestloser .msn.com/

> > >

> > >