Re: Help needed please!

[Guest guest]

Hi Caroline,

It's such a tough time, poor love! Hugs to and you. What you describe is very similar to my 's cyclical *crashes*. He gets a high, rapid onset fever (up to 40) and then diarrhoea and vomiting. I hate giving him paracetamol or neurofen either but we have to sometimes. I don't know that I have any great advice for you, just that I've been there quite a few times. We have been advised by a paediatrician that fevers over 104F start to damage to organ tissues and the body is no longer able to fight infection at such a temperature spike. I figure it's better to keep the temp down and suffer the consequences of the drugs than risk organ damage. I found that if I use paracetamol suppositories they are much more effective - they control temp for 4 hours then dose with neurofen 4 hours later. Then another paracetamol dose after 4 to 5 hours. Rotating like this is horrible and it's high dosing but it is the only thing that I've found to keep fevers down. I find it is critical to not drop a dose to "see" if the fever spikes again, just keep up the protocol for a few days 24 hours a day. You probably know all this already but just in case somthing may help you....

To offer some hope, can get really really sick with these infections (sometimes viral, sometimes bacterial) sick enough to be hospitalised or to the point where he literally cannot stand up. Once the worst of it is over, he recovers reasonably quickly with no residual problems. Hang in there, she will get better, it is so difficult when they are so bad off. I swear no matter how many times we go through it, I still find it incredibly difficult to see him in such a state and especially to feel so helpless that there isn't much that you can do.

I kept up the same supplements as you have during our last crash except for the Zinc as it can cause nausea but I cut everything else out. When the worst of it was over and he could eat more foods. I started him back on the usual dosages within a day or so. I noticed no withdrawal or problems.

Oh - 's poos are frequently meconium like since starting his probios. He has really dark stools a lot of the time. I'd think with the change in supplements, sickness, etc it isn't surprising that her stools are dark. We always have to watch for internal hemmoraging becuause of his reflux but so far nothing like that has happened during any of his crashes even though he is at risk for such a thing. Hope to put your mind at rest ;-)

Sorry to go on so much,

Hope she's feeling better today.

Darla

In a message dated 24/09/2006 09:05:49 GMT Standard Time, CarolineTraa@... writes:

Hi all,

We havent had a very good week here, got a bit poorly at the start of the week, was at school Mon/Tues but not eating much, tired, not her usual self. I kept her off on Wed, not quite sure what was wrong becuase for us, I normally think is it bowel stuff?

Anyway on Thurs her temp was really high (39.9) and I was suspecting throat/ear infection. Sometimes with throat infection she will try to put her hands inside her mouth as if she is trying to touch it, be sick or something. As I was quite worried about the very high temperature (which I wasnt managing to lower I thought better just call GP and ask if he had any advice about anything other than antibiotics I could use should I need to give them to her!). He reckoned I should bring her down (which I did) plus a urine sample too. She was pretty weak by then not having ate or drank much since start of week. The urine sample was positive for UTI but her thraot was quite red too, sigh. I said to the GP well if she is having antibiotics bung in something for the high strep as well, which he did! She has Co-Amoxiclav a broad spectrum for 5 days.

OK so temp still really high at the GP and for the next coupla days actually. My problem is that she has felt quite nauseous so in combination with the high temp have had to give ibuprofen or calpol to try and get temp down. I hate using any of this stuff but didnt feel I had a lot of choice because of her high temp and needing to get this antibiotic into her, I have never seen her so poorly! So managed that Fri without puking but still not eating a lot or drinking. During Fri night (early Sat) she had 2 very black nappies, loads of mucousy pooh, sorry guys. I was really worried about this because I no black often equals digested blood. Mmm in the morning I thought crikey what to do now so foned NHS 24 (like they might be able to help) but just didnt feel we could overlook this. I was actually thinking it might be a bowel haemhorrage and we were ticking all the boxes too! I was also thinking what Jo had said about the Oxypowder producing dark pooh when it gets to a long stuck bit, so hoping maybe just that.

They put me onto GP and agreed they didnt know much about it. Fortunately still had nappy so off we went to our local hospital to see GP. I did actually feel was a little better on the Sat so wasnt unduly worried actually she was a bit cheeky more her little obsessive self than the feeble little lethargic person of the few preceding days! The GP was nice and tested the pooh pH, dipstick things and said not blood, very meconium-like probably bile build up becuase no food off ususal supps etc. So they have sent that off to the lab just to be checked out, I am getting to the actual point here, believe me....

On the Thurs I was so worried about giving her her usual supplements because a) she was just so poorly, weak, loose stools that I cut out senna, oxypowder and as she had absolutely no food she had no enzymes. I gave her her vits and mins at a half to quarter dose. Friday still so poorly I was too scared to give the Vits/Minerals at all in case she was even more nauseous with this. Also thought oh no NCD is that just too much, leave that out. So only really kept on with the Probiotics, Magnesium Malate, melatonin and Zinc which is our bedtime stuff.

I am really concerned about the effect this will have on her and what I should do now. Any help greatly appreciated... How do I re-introduce? In what order? Start slowly again?? I am really not sure where to go, she has eaten a fraction more yesterday but stools still really loose, what dya reckon if anyone been in this situation would love to know their experiences.

Also have been thinking of going more Yasko route and so was wondering whether just to give that a go now anyway, so many questions. If people have started completely Yasko supplements from scartch how did you do this? Did you stop all the DAN type supplements? or just change out gradually?

Thank you so much for reading all this, feels good just writing it down, not had a lotta sleep for 4-5 night so hope it makes sense! Any advice really appreciated.

Lotsa Love Caroline

xx

[Guest guest]

Hi Darla

Thank you so much for your reply, its lovely to get so many cyber-hugs! What is 104 F in C? Guess I should know this kinda stuff, Becky is just so rarely poorly like this, lotsa bowel stuff but she just kinda gets on with that, the ill bit is kinda scarey!

I have never used Suppositories of paracetamol, can you just buy them OTC? Just off to the shop so will have a go.

Thanks a lot. Keep ya posted.

Love Caroline

xx

[Guest guest]

In a message dated 24/09/2006 17:07:23 GMT Standard Time, m.collins9@... writes:

Caroline 104 fahrenheit is about 40 centigrade.I hope she's getting better.

Margaret,

Thanks for that honey, not very good at Farenheit here...

She is better today for sure, had a huge sleep this afternoon then we went to Tesco and was her little obsessive self when we were unloading the trolley which she likes to sit inside!! I could see people thinking crikey, hard work missus .... whilst I thot good goin girl, getting back to normal by the minute!!

You gotta luv em!!

Thank you so much for everyones advice and good wishes, I have been really touched and comforted knowing folks are rooting for us and know what its like, truly thanks.

Lotsa Love n hugs

Caroline

xxx

[Guest guest]

Caroline,

please don't beat yuourself up about having to resort to antibiotics

and calpol,etc. Sometimes needs must, and you needed to get you

dd's temp down and treat the infections!!! Not doing that sounds to

me as if it would have been worse so you have done the RIGHT thing.

So the next step is damage limitation, that means lots an lots of

probiotics.

IMO you need to get your kid back to where she was, before you start

to think about doign something new like the Yasko stuff.

With adding back in the stuff you've stopped giving recently, i

don't think you need to do it as slowly and carefully as the frist

time you introduced these suppliments, because you already know how

she reacted to them in the past, so you can do it much quicker this

time. Maybe over a few days only, perhaps leaving the harsher stuff

like Oxypowder until last, especially as she seems to have had a

good clearout now, poor thing!!!

Thinking of you, Nikki XXX

[Guest guest]

Caroline 104 fahrenheit is about 40 centigrade.

I hope she's getting better.

Personally, I would lay off the supplements until the fever's gone and

she's eating and drinking and then reintroduce them slowly, starting

with probiotics. Supplements on an empty stomach can make you feel

sick, also they're extra work for the liver.

I've dosed H up with both paracetamol and nurofen in the past, of

necessity, and I agree that paracetamol suppositories are quick-

acting - I used to do this when we were worried about seizures, which

I pray never return.

Hugs and best wishes,

Margaret

[Guest guest]

Hi Caroline, yes you can buy paracetamol suppositories (may have to order them).

They are expensive, I paid 20 quid for 10 back in the early days. Could never get calpol down on, he just vomitted it

up. Now get them on prescription but rarely use anymore, but would if temp got out of control.

Hope she feels better soon. Someone said a while ago to soak socks in cool water and put them on their feet if she will

cope with that.

best wishes

Sally

From: Autism Treatment [mailto:Autism Treatment ] On Behalf Of CarolineTraa@...Sent: Sunday, September 24, 2006 1:15 PMAutism Treatment Subject: Re: Help Needed Please!

Hi Darla

Thank you so much for your reply, its lovely to get so many cyber-hugs! What is 104 F in C? Guess I should know this kinda stuff, Becky is just so rarely poorly like this, lotsa bowel stuff but she just kinda gets on with that, the ill bit is kinda scarey!

I have never used Suppositories of paracetamol, can you just buy them OTC? Just off to the shop so will have a go.

Thanks a lot. Keep ya posted.

Love Caroline

xx

[Guest guest]

JRA does cause tons of fatigue. n has suffered with it for the last 11

years. We have never been able to fix it. It is part of the disease. She

requires lots more rest than the normal person and can not do the same things as

her siblings. (n, 21, systemic)

On Jan 4, 2011, at 12:10 PM, ttownyvonne wrote:

> Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

>

> Kaylee has been extremely tired lately and no one seems to know why.

> She saw the rheumy Dec 7th and I talked with her about it and she insists it

is not from her JA. It doesn't seem to be getting any better and she just

started back to school yesterday and was out today. She slept til 1pm. I tried

looking at some causes, but there are so many and I don't know which way to go

or turn. Can someone please help?

> I looked at Celiac Disease, Crohn's Disease, and Chronic Fatige syndrome, but

not sure that she fits any of those. What do I do?

> Kaylee has so many issues currently going on with the ADHD and ODD that it

keeps me in a turmoil; her dad isn't supportive in matters like this at all. I

appreciate any help.

> THanks

> and Kaylee, 8

>

>

[Guest guest]

Is she sick at all? With any kind of cold/flu? Being sick will make them even

more tired when they are ill than someone without a chronic illness. Is it

possible she could have mono? When came down with mono after his diagnosis

he was sleeping all the time - more than the average person with it. That took a

long time to get over.

I agree with - during a flare they do get extremely tired. It is part of

the disease. The meds also can make them very tired. When my dh was on MTX he

would be just exhausted.

If the dr insists it is not from the JA, does she offer any other suggestion?

Perhaps something she could check her blood work for that is not being tested.

I hope someone can offer more ideas.

Let us know how she's doing, Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

ttownyvonne

Sent: Tuesday, January 04, 2011 2:10 PM

Subject: Help Needed Please!

Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

Kaylee has been extremely tired lately and no one seems to know why.

She saw the rheumy Dec 7th and I talked with her about it and she insists it is

not from her JA. It doesn't seem to be getting any better and she just started

back to school yesterday and was out today. She slept til 1pm. I tried looking

at some causes, but there are so many and I don't know which way to go or turn.

Can someone please help?

I looked at Celiac Disease, Crohn's Disease, and Chronic Fatige syndrome, but

not sure that she fits any of those. What do I do?

Kaylee has so many issues currently going on with the ADHD and ODD that it keeps

me in a turmoil; her dad isn't supportive in matters like this at all. I

appreciate any help.

THanks

and Kaylee, 8

[Guest guest]

I am a lurker here, but what about her thyroid? My daughter was tired like that

and we found out she was hypo....

I hope not but it is a possibility... Good Luck.

>

> Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

>

> Kaylee has been extremely tired lately and no one seems to know why.

> She saw the rheumy Dec 7th and I talked with her about it and she insists it

is not from her JA. It doesn't seem to be getting any better and she just

started back to school yesterday and was out today. She slept til 1pm. I tried

looking at some causes, but there are so many and I don't know which way to go

or turn. Can someone please help?

> I looked at Celiac Disease, Crohn's Disease, and Chronic Fatige syndrome, but

not sure that she fits any of those. What do I do?

> Kaylee has so many issues currently going on with the ADHD and ODD that it

keeps me in a turmoil; her dad isn't supportive in matters like this at all. I

appreciate any help.

> THanks

> and Kaylee, 8

>

[Guest guest]

What about a growth spurt? I know my kids require extra sleep when growing. My

non-JIA child is on daily growth hormone injections so I am overly aware of any

signs showing she is growing...and needing extra sleep is a sign.

My , even when not showing any signs of active disease is still much more

easily fatigued than my daughter (who also has ADHD.).

Sent from my iPhone

[Guest guest]

Whoops...sent before I was finished.

Anyway, have you recently done any med changes for the ADHD/ODD. That can be a

factor as well.

Wishing you all the best, my daughter (non-JIA child) has off the chart ADHD and

while not offically ODD...is highly oppositional...it's tough but with the right

meds and behavior modifications (on both our parts...lol) things are looking up.

(She's 9 and in 4th grade...and she has really matured this year...and is taking

ownership of her ADHD)

& , 7, poly, plus a bunch of other stuff... & Arianna, 9, ADHD, ISS, PP

Sent from my iPhone

[Guest guest]

We had this problem with my son this spring. His doctor said the same thing,

and that he may be depressed. I know the difference between depression and

falling asleep on my shoulder while helping him with homework.

I googled and came up with Celiac. It did correlate with his " random " tummy

aches. I took him off gluten and had tremendous results. Within the first

week, he was almost completely back to normal. It was amazing. Now we are

awaiting further testing to fully diagnose Celiac, but the rheumy was impressed

with the results.

All of the other suggestions were great,as well. The only other thing that I can

think of is anemia. When the body doesn't have enough RBC's the energy level is

very low. JIA can cause anemia.

Don't give up and just think you are nuts. You know what is right for your

child. You know when she is not acting normal for her. My kids require tons of

sleep, but they should be able to stay awake for daytime hours.

I have a wonderful husband, but he really thought that I was just being too easy

on . He thought that I was allowing him to be tired. What?! What 13

year old boy doesn't want to romp the neighborhood with his buddies? So,even

good Dads don't always understand.

I would take her to the pediatrician and see if they have any ideas and ask for

tests to be run.

Audra

14 poly 07

Peyton 12 poly 08

>

> Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

>

> Kaylee has been extremely tired lately and no one seems to know why.

> She saw the rheumy Dec 7th and I talked with her about it and she

[Guest guest]

Thanks to all of you with your replies.

Audra,

I did some research and found that celiacs, chrons disease, or either chronic

fatigue syndrome may be a culprit.

I am going to give the Ped a call and see if she can do some tests other than

her normal labs and see if anything

is off or looks suspicious. I appreciate all the help and support with this. I

have been in the group for about 4 years

I think, but I don't get to inneract a lot. I do read the daily posts as often

as possible and when I need help I post.

This is a great group and I appreciate all those that have the time to help

others that have questions. I am pretty

much alone handling all the Kaylee issues and it is tough; so when I can find

some comfort and support, it really

means a lot to me.

Thanks again to all of you and I will update with any news.

, Kaylee 8

Re: Help Needed Please!

We had this problem with my son this spring. His doctor said the same thing, and

that he may be depressed. I know the difference between depression and falling

asleep on my shoulder while helping him with homework.

I googled and came up with Celiac. It did correlate with his " random " tummy

aches. I took him off gluten and had tremendous results. Within the first week,

he was almost completely back to normal. It was amazing. Now we are awaiting

further testing to fully diagnose Celiac, but the rheumy was impressed with the

results.

All of the other suggestions were great,as well. The only other thing that I can

think of is anemia. When the body doesn't have enough RBC's the energy level is

very low. JIA can cause anemia.

Don't give up and just think you are nuts. You know what is right for your

child. You know when she is not acting normal for her. My kids require tons of

sleep, but they should be able to stay awake for daytime hours.

I have a wonderful husband, but he really thought that I was just being too easy

on . He thought that I was allowing him to be tired. What?! What 13 year

old boy doesn't want to romp the neighborhood with his buddies? So,even good

Dads don't always understand.

I would take her to the pediatrician and see if they have any ideas and ask for

tests to be run.

Audra

14 poly 07

Peyton 12 poly 08

>

> Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

>

> Kaylee has been extremely tired lately and no one seems to know why.

> She saw the rheumy Dec 7th and I talked with her about it and she

[Guest guest]

Hi ,

I understand how worrisome and frustrating (because you want to fix it) Kaylee's

fatigue must be; I agree with n that the JIA can cause a lot of fatigue. 

My daughter is almost 21, yet she often takes naps and may sleep the better part

of a weekend if it has been a too busy week - her body demands it.  That being

said, whoever mentioned having her thyroid checked, I agree.  Also, has she been

checked for anemia?  Both were a problem for my daughter (she has autoimmune

thyroid disease) - treatment helps but even so, her fatigue is significant.  She

has accepted it as part of her illness and most of the time adjusts accordingly,

but sometimes  thinks she can do as much as her peers and it catches up with

her.  I don't know what meds Kaylee is taking  but does she take folic acid?  My

rheumy says it is most needed to help prevent anemia from RA/JIA meds.

Ask Kaylee's primary dr if they will do some blood work to check her blood count

and thyroid. 

I hope things improve.

(, 20, poly, PIDD, hashimotos)

> Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

>

> Kaylee has been extremely tired lately and no one seems to know why.

> She saw the rheumy Dec 7th and I talked with her about it and she insists it

is not from her JA. It doesn't seem to be getting any better and she just

started back to school yesterday and was out today. She slept til 1pm. I tried

looking at some causes, but there are so many and I don't know which way to go

or turn. Can someone please help?

> I looked at Celiac Disease, Crohn's Disease, and Chronic Fatige syndrome, but

not sure that she fits any of those. What do I do?

> Kaylee has so many issues currently going on with the ADHD and ODD that it

keeps me in a turmoil; her dad isn't supportive in matters like this at all. I

appreciate any help.

> THanks

> and Kaylee, 8

>

>

[Guest guest]

Thanks ,

Kaylee takes folic acid as she takes MTX and Humira for the JA and then she

takes Concerta, Intuniv,

Remeron, and trazadone; these are for ADHD/ODD. I will be calling her Ped in the

am to talk with her

about extensive blood work to check her thyroid as I have hypothyroidism and so

does my mom.

She has been anemic in the past, but it has been years ago. The labs done in

Nov. were good, but

I know things can change at any time. I have been going crazy trying to figure

it out and it really

makes me mad that the rheumies insist it has nothing to do with her JA. This has

been an on-going

problem off and on for years now; even before she was diagnosed with ADHD/ ODD

and started those

meds. However, the rheumy still insists it has to be coming from some of those

meds. I even sent

her an article from Arthritis Today about the JA related fatigue and she still

stood me down on it.

I appreciate your help.

, Kaylee 8

Re: Help needed please!

Hi ,

I understand how worrisome and frustrating (because you want to fix it) Kaylee's

fatigue must be; I agree with n that the JIA can cause a lot of fatigue.

My daughter is almost 21, yet she often takes naps and may sleep the better part

of a weekend if it has been a too busy week - her body demands it. That being

said, whoever mentioned having her thyroid checked, I agree. Also, has she been

checked for anemia? Both were a problem for my daughter (she has autoimmune

thyroid disease) - treatment helps but even so, her fatigue is significant. She

has accepted it as part of her illness and most of the time adjusts accordingly,

but sometimes thinks she can do as much as her peers and it catches up with

her. I don't know what meds Kaylee is taking but does she take folic acid? My

rheumy says it is most needed to help prevent anemia from RA/JIA meds.

Ask Kaylee's primary dr if they will do some blood work to check her blood count

and thyroid.

I hope things improve.

(, 20, poly, PIDD, hashimotos)

> Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

>

> Kaylee has been extremely tired lately and no one seems to know why.

> She saw the rheumy Dec 7th and I talked with her about it and she insists it

is not from her JA. It doesn't seem to be getting any better and she just

started back to school yesterday and was out today. She slept til 1pm. I tried

looking at some causes, but there are so many and I don't know which way to go

or turn. Can someone please help?

> I looked at Celiac Disease, Crohn's Disease, and Chronic Fatige syndrome, but

not sure that she fits any of those. What do I do?

> Kaylee has so many issues currently going on with the ADHD and ODD that it

keeps me in a turmoil; her dad isn't supportive in matters like this at all. I

appreciate any help.

> THanks

> and Kaylee, 8

>

>

[Guest guest]

, how long has Kaylee been on Intuniv? Just curious because our doc has

recommended it but with it being originally a blood pressure medication, I had

heard that sleepiness was a big side effect that some kids just can’t

overcome. Would love to know if a) this is part of what Kaylee is dealing with

or how she has done with it as I like to have information to help make the

decision here.

Joann

From: [mailto: ] On Behalf Of

Maydo65

Sent: Wednesday, January 05, 2011 8:20 PM

Subject: Re: Help needed please!

Thanks ,

Kaylee takes folic acid as she takes MTX and Humira for the JA and then she

takes Concerta, Intuniv,

Remeron, and trazadone; these are for ADHD/ODD. I will be calling her Ped in the

am to talk with her

about extensive blood work to check her thyroid as I have hypothyroidism and so

does my mom.

She has been anemic in the past, but it has been years ago. The labs done in

Nov. were good, but

I know things can change at any time. I have been going crazy trying to figure

it out and it really

makes me mad that the rheumies insist it has nothing to do with her JA. This has

been an on-going

problem off and on for years now; even before she was diagnosed with ADHD/ ODD

and started those

meds. However, the rheumy still insists it has to be coming from some of those

meds. I even sent

her an article from Arthritis Today about the JA related fatigue and she still

stood me down on it.

I appreciate your help.

, Kaylee 8

Re: Help needed please!

Hi ,

I understand how worrisome and frustrating (because you want to fix it) Kaylee's

fatigue must be; I agree with n that the JIA can cause a lot of fatigue. My

daughter is almost 21, yet she often takes naps and may sleep the better part of

a weekend if it has been a too busy week - her body demands it. That being said,

whoever mentioned having her thyroid checked, I agree. Also, has she been

checked for anemia? Both were a problem for my daughter (she has autoimmune

thyroid disease) - treatment helps but even so, her fatigue is significant. She

has accepted it as part of her illness and most of the time adjusts accordingly,

but sometimes thinks she can do as much as her peers and it catches up with her.

I don't know what meds Kaylee is taking but does she take folic acid? My rheumy

says it is most needed to help prevent anemia from RA/JIA meds.

Ask Kaylee's primary dr if they will do some blood work to check her blood count

and thyroid.

I hope things improve.

(, 20, poly, PIDD, hashimotos)

> Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

>

> Kaylee has been extremely tired lately and no one seems to know why.

> She saw the rheumy Dec 7th and I talked with her about it and she insists it

is not from her JA. It doesn't seem to be getting any better and she just

started back to school yesterday and was out today. She slept til 1pm. I tried

looking at some causes, but there are so many and I don't know which way to go

or turn. Can someone please help?

> I looked at Celiac Disease, Crohn's Disease, and Chronic Fatige syndrome, but

not sure that she fits any of those. What do I do?

> Kaylee has so many issues currently going on with the ADHD and ODD that it

keeps me in a turmoil; her dad isn't supportive in matters like this at all. I

appreciate any help.

> THanks

> and Kaylee, 8

>

>

[Guest guest]

Hi, my name is Christie and I guess I also qualify as a " lurker " (lol!). My

daughter Abby (6) also has a hypoactive thyroid (autoimmune) and low iron

(anemic) related to her JRA; next time Kaylee has blood work drawn, have them

check both. Both are simple to check, and easy to control with meds (not like

JRA)!

> >

> > Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

> >

> > Kaylee has been extremely tired lately and no one seems to know why.

> > She saw the rheumy Dec 7th and I talked with her about it and she insists it

is not from her JA. It doesn't seem to be getting any better and she just

started back to school yesterday and was out today. She slept til 1pm. I tried

looking at some causes, but there are so many and I don't know which way to go

or turn. Can someone please help?

> > I looked at Celiac Disease, Crohn's Disease, and Chronic Fatige syndrome,

but not sure that she fits any of those. What do I do?

> > Kaylee has so many issues currently going on with the ADHD and ODD that it

keeps me in a turmoil; her dad isn't supportive in matters like this at all. I

appreciate any help.

> > THanks

> > and Kaylee, 8

> >

>

[Guest guest]

,

Just an out in left field thought here...is Kaylee's pain truly under control?

The reason I ask is because since was a toddler he displayed ADHD-like

behaviors...as diagnosed by his pedi, psychologist, special needs teachers, and

the school evaluation team. Once he was diagnosed with the JIA (age 5.5) and we

truly controlled his pain...most of the ADHD-like behaviors disappeared. He also

had/has sensory processing disorder...it was considered severe...now minor...and

that too manifested in ADHD-like behaviors. Just a thought.

One last suggestion...my kids are adopted and one resource many adoptive parents

use is this website www.a4everfamily.org. It has a section on 'biomedical' which

you may find beneficial. It talks about diet, DAN medical approach, etc. We have

tried some of this but not all due to 's other issues. Also, have you tried

the Gluten Free Casein Free Diet (GFCF Diet)...again something we tried but

could not follow thru on based on his lack of weight gain and feeding issues. It

is highly restrictive but is said to work wonders. Finally, was thought to

possibly autistic at age 3.5...then I added DHA supplements to his diet...with

utterly amazing results. His psychologist was shocked in the difference in him

in just three months.

Just thought I'd share my experience...

& , 7, poly plus a bunch of other stuff

Sent from my iPhone

[Guest guest]

Hi,

Strange the issue of fatigue came up. Rose is having the same symptoms, but her

joints don't seem to swell at the same time and she is walking fine, I did

notice once that she was stiff when she got up, however (maybe a flare is going

to start). Is this true for your kids as well (no obvious flare, but they have

fatigue)? I am waiting for the test results. In her case, she seems to get a

butterfly rash from time to time, so I suspect Lupus. The doctor said it could

be just that she has photosensitve dermatitis. (He likes to be optimistic, but

I'll go with it for now. ) She also gained a lot of weight and I know the

holiday treats are partially to blame, but the weight gain seems excessive. I

noticed the doctor ordered some thyroid tests so, I'll see what the results are

there. I'll keep everyone posted if I find out what's going on. Perhaps she

should be retested for Celiac, since my mom has it.

Any additional feedback is appreciated. Thanks

Jo

Jo

>

> Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

>

> Kaylee has been extremely tired lately and no one seems to know why.

> She saw the rheumy Dec 7th and I talked with her about it and she insists it

is not from her JA. It doesn't seem to be getting any better and she just

started back to school yesterday and was out today. She slept til 1pm. I tried

looking at some causes, but there are so many and I don't know which way to go

or turn. Can someone please help?

> I looked at Celiac Disease, Crohn's Disease, and Chronic Fatige syndrome, but

not sure that she fits any of those. What do I do?

> Kaylee has so many issues currently going on with the ADHD and ODD that it

keeps me in a turmoil; her dad isn't supportive in matters like this at all. I

appreciate any help.

> THanks

> and Kaylee, 8

>

[Guest guest]

Kaylee's joints show no sign of swelling and there has been little stiffness. I

am having her Ped do a

series of tests to see if we can get to the bottom of the issue. I also wonder

too about Celiac.

Maybe we will figure out soon.

, Kaylee 8

Re: Help Needed Please!

Hi,

Strange the issue of fatigue came up. Rose is having the same symptoms, but her

joints don't seem to swell at the same time and she is walking fine, I did

notice once that she was stiff when she got up, however (maybe a flare is going

to start). Is this true for your kids as well (no obvious flare, but they have

fatigue)? I am waiting for the test results. In her case, she seems to get a

butterfly rash from time to time, so I suspect Lupus. The doctor said it could

be just that she has photosensitve dermatitis. (He likes to be optimistic, but

I'll go with it for now. ) She also gained a lot of weight and I know the

holiday treats are partially to blame, but the weight gain seems excessive. I

noticed the doctor ordered some thyroid tests so, I'll see what the results are

there. I'll keep everyone posted if I find out what's going on. Perhaps she

should be retested for Celiac, since my mom has it.

Any additional feedback is appreciated. Thanks

Jo

Jo

>

> Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

>

> Kaylee has been extremely tired lately and no one seems to know why.

> She saw the rheumy Dec 7th and I talked with her about it and she insists it

is not from her JA. It doesn't seem to be getting any better and she just

started back to school yesterday and was out today. She slept til 1pm. I tried

looking at some causes, but there are so many and I don't know which way to go

or turn. Can someone please help?

> I looked at Celiac Disease, Crohn's Disease, and Chronic Fatige syndrome, but

not sure that she fits any of those. What do I do?

> Kaylee has so many issues currently going on with the ADHD and ODD that it

keeps me in a turmoil; her dad isn't supportive in matters like this at all. I

appreciate any help.

> THanks

> and Kaylee, 8

>

[Guest guest]

I have hyptothyroidism and I am having Kaylee's Ped schedule a series of tests

to rule out

different things. Hopefully, we will get an answer eventually.

, Kaylee, 8

Re: Help Needed Please!

Hi, my name is Christie and I guess I also qualify as a " lurker " (lol!). My

daughter Abby (6) also has a hypoactive thyroid (autoimmune) and low iron

(anemic) related to her JRA; next time Kaylee has blood work drawn, have them

check both. Both are simple to check, and easy to control with meds (not like

JRA)!

> >

> > Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

> >

> > Kaylee has been extremely tired lately and no one seems to know why.

> > She saw the rheumy Dec 7th and I talked with her about it and she insists it

is not from her JA. It doesn't seem to be getting any better and she just

started back to school yesterday and was out today. She slept til 1pm. I tried

looking at some causes, but there are so many and I don't know which way to go

or turn. Can someone please help?

> > I looked at Celiac Disease, Crohn's Disease, and Chronic Fatige syndrome,

but not sure that she fits any of those. What do I do?

> > Kaylee has so many issues currently going on with the ADHD and ODD that it

keeps me in a turmoil; her dad isn't supportive in matters like this at all. I

appreciate any help.

> > THanks

> > and Kaylee, 8

> >

>

[Guest guest]

I believe Kaylee's pain is under control. I haven't tried the GFCF diet. I will

have to do some research on that

and see about it. THanks for the help.

Re: Help needed please!

,

Just an out in left field thought here...is Kaylee's pain truly under control?

The reason I ask is because since was a toddler he displayed ADHD-like

behaviors...as diagnosed by his pedi, psychologist, special needs teachers, and

the school evaluation team. Once he was diagnosed with the JIA (age 5.5) and we

truly controlled his pain...most of the ADHD-like behaviors disappeared. He also

had/has sensory processing disorder...it was considered severe...now minor...and

that too manifested in ADHD-like behaviors. Just a thought.

One last suggestion...my kids are adopted and one resource many adoptive parents

use is this website www.a4everfamily.org. It has a section on 'biomedical' which

you may find beneficial. It talks about diet, DAN medical approach, etc. We have

tried some of this but not all due to 's other issues. Also, have you tried

the Gluten Free Casein Free Diet (GFCF Diet)...again something we tried but

could not follow thru on based on his lack of weight gain and feeding issues. It

is highly restrictive but is said to work wonders. Finally, was thought to

possibly autistic at age 3.5...then I added DHA supplements to his diet...with

utterly amazing results. His psychologist was shocked in the difference in him

in just three months.

Just thought I'd share my experience...

& , 7, poly plus a bunch of other stuff

Sent from my iPhone

[Guest guest]

Hi. My name is Teri and my daughter has JRA which has remained in remission for

the past 10 years. My son has crohn's disease which is also an auto immune

disorder and is being treated with Remicaid every 8 weeks. has occasional

joint pain (one time it was pretty severe). Apprently th arthralgia(joint pain)

goes along with crohn's. Have the doctor check her for crohn's disease along

with ruling out or confirming celiac's.

>

>

>

[Guest guest]

I know I am very late coming to this conversation, but wanted to offer

another possibility that may have already been ruled out.

In late 2008, before Madison developed JIA, her energy levels took a real

nose dive. Our first thought was that it was related to her mitochondrial

disease, however, have a ped whose job we have made it to think of her as a

³typical² kid before assuming something is mito related. With the issues we

were seeing, she did some labs looking at normal things that can cause

fatigue and generally not feeling well.

A few days later she called and said, ³I am happy to say I know what¹s

causing the problem, and sorry to say I know what¹s causing the problem.²

Madison had both Mononucliosis AND a Mycoplasma infection (walking

pneumonia) at the same time.

Recently, I saw another dip in energy, and we followed the same protocol as

before, and sure enough, she had the mycoplasma infection again!!

What we have learned is that sometimes it¹s not the disease they are dealing

with causing changes....sometimes it¹s the ³normal² stuff kids get. Okay,

³normal² is relative.....in all her years of practice, the ped had never

seen someone with both infections at the same time before, so even normal

stuff does weird things in my kids....LOL. Knowing we have a ped though

that looks at my kids first as kids, then as mito kids, has proven to make a

real difference for us.

Not sure if this helps at all, but did want to throw it out there just in

case!!

BIG hugs,

, proud mom to Chance(17-Mito), Madison)14-Mito/JIA, and

Abigail(12-Mito)

http://www.ourexceptionallife.blogspot.com

On 1/4/11 2:10 PM, " ttownyvonne " <maydo65@...> wrote:

> Kaylee, 8 : Ext. Oligo, Uveitis, ADHD and ODD

>

> Kaylee has been extremely tired lately and no one seems to know why.

> She saw the rheumy Dec 7th and I talked with her about it and she insists it

> is not from her JA. It doesn't seem to be getting any better and she just

> started back to school yesterday and was out today. She slept til 1pm. I tried

> looking at some causes, but there are so many and I don't know which way to go

> or turn. Can someone please help?

> I looked at Celiac Disease, Crohn's Disease, and Chronic Fatige syndrome, but

> not sure that she fits any of those. What do I do?

> Kaylee has so many issues currently going on with the ADHD and ODD that it

> keeps me in a turmoil; her dad isn't supportive in matters like this at all. I

> appreciate any help.

> THanks

> and Kaylee, 8