Prayers For Kathryn

[2kids4me]

PLease keep Kathryn in your prayers. She has been sick the entire month of July, first they thought strep throat and treated, then mono - but mono test was negative, now on cipro for kidney infection. We see a rheumatologist this Thursday - maybe she has an answer!! The rheumatology appt was booked before all this started because of weird stuff happening since last fall.

This is what I will give to the doctor when we get there - I had to start keeping a diary of sorts so I could remember it all. The referral was done to rule out a systemic vascultis - now that kidneys are involved - well - i hope that it is NOT a vasculitis!

Kathryn's history:

(and anyone with ideas - please reply!)

Low dose aspirin apparently keeps her well - and her urine normal. When not on it or taking advil - within 5 days - bilirubin, protein, occasionally blood can show up. Plus she gets the weird cheek rash, the one eyelid droops more than normal, vague symptoms that come and go.

Hypotonia (since birth)

Aspergers (diagnosed in grade 2)

Hypothyroidism diagnosed 1996

Dermatographia

Kawasaki - June 2003 10 - 12 weeks before "back to normal" had low dose aspirin for 6 months until coronary artery dilation resolved.

Celiac 2004

June 2006 - appendectomy / fecolith. Surgeon reported unusual amount of fluid in abdomen. Brown urine was noted in emerg dept and post op. Urobilinogen on dipstick. Liver function tests were normal.

Oct 2006 - lactose intolerant.

2007 - Extensive testing including ENA profile and full liver workup - including autoimmune. Resulted in diagnosis of Gilberts syndrome.

Problem with boils, and rashes around neck / scalp. scaly red areas, some large raised rings with normal skin in center, other areas are a solid patch. Doesn't seem to itch. Been okay for several months

Episodes of "feeling crappy", include: nausea, intermittent soft stool, flushed face, droopy eyelid, headache, tingly in the wrist, some numbess in legs. Red eyes, almost looks like pinkeye, but goes away in 24 - 48 hours and no discharge. Tender salivary glands. Any combination of symptoms can occur. Giving advil relives most symptoms.

Ketonuria (moderate ketones)showed up after minor injuries in a bike accident along with bilirubin, protein and excess urobilinogen. Plus the usual symptoms mentioned above.

Started on low dose aspirin daily after discussion of symptoms resolving when advil used each time she had these episodes. This helped and it is noted that when we stopped giving aspirin for one week (after bike accident and we used advil to deal with swelling and pain)...her symptoms returned 5 days after stopping aspirin and not giving advil. We resumed low dose therapy the following day (May 4th)

Pediatrician asked we check for protein in first void. *Morning urine was negative for protein. This was while she was taking low dose aspirin

May 3rd - pain behind right eye, can happen in low light but is more severe in bright light (sunlight). Off and on for 2 days then it stopped. * we resumed low dose aspirin the next day (see note from bike accident)

May 30 - competed in track and field, one foot "went to sleep" after a race and about 2 hours later, both ankles had pins and needles type pain. (prickly was the word she used)

June 11th - foot fell asleep after walking the dog

Intermittent fever throughout July, weight loss (9 lbs so far). Treat fever with Advil x 2 during this time. Fever responsive to advil.

June 30 - stop aspirin - initial symptoms of cold / did not want her on aspirin if this was viral (worry about Reye's)

July 1st - cold symptoms (sore throat / runny nose / fatigue)

July 4 - feeling "not great", soft stool. Mild cold. Sore throat and enlarged tender enlarged cervical lymph nodes, bacterial eye infection (red eyes with thick discharge) - Tobramycin eye drops

July 8/9th - feeling worse, come and go fever past few days ( 38 - 38.5)

July 10 - saw Dr., Started on PenicillinV for probable strep throat (10 days of meds)

July 18, sore throat, cough - slight fever (37.5) off and on that gradually improved. Red eyes but no discharge

July 22 - feeling better, energy, appetite improved

July 30 stomach ache at night, appetite way down, nausea.

July 31 - fever, stomach ache / no appetite / nausea / refused water. T 38.5, normal BM

Aug 1 - T 39.6, symptoms as above. Saw nurse practioner Mono test / CBC / ESR mono test neg / elevated wbc (13.8), increased neutrophils, ESR 14

Aug 2 - T 39.9 in morning, feeling crappy, no appetitie, nausea, legs feel "wobbly", Fever responded to advil but went back up after 6 hours to 38.5.

Aug 3 - T 36.6 in a.m. Noon - chills, pale, nausea, headache T 37.6 ...by 12:30 temp was 39.1, went to clinic - saw Dr., Complained of back pain and then said it had been hurting off and on . urinalysis (and culture), ordered blood culture. Urine - trace leukocytes / protein / bilirubin, concentrated. Suspect kidney infection. I was originally was going to wait til urine culture complete but at 8 pm - fever spiked again to 39.5, pale, anorexic, stomach ache, headache. Start Cipro.

Aug 4 - no fever all day..appetite initially low..then at supper asked for "real meal". Felt better, chatting, smiling again.

Aug 5 -no fever. Eating well. Pain in right leg, pain in upper left abdomen and around to back in late evening.

Kathryn tells me her right leg looks like it has a bump in the muscle, that she noticed a while ago..

[jerseyangel]

Oh Sandy, what that poor child has been through...

I will keep Kathryn in my prayers. I hope you find some answers soon

[Lisa]

Sandy,

I too hope you find some answers soon. You both have been through so much. I'll keep you in my thoughts and sending well wishes.

[blueeyedmanda]

I will keep her in my prayers.

[Creative-Soul]

I am so sorry to hear of the difficulties you have been enduring - my heart goes out to you, Kathryn and your family. Please keep us posted...

[2kids4me]

Thank you all for your kind thoughts and prayers.

We have been spoiled in that we have an excellent GI and endocrinologist. The rheumatologist was a waste of time. He spent time reviewing her file, he jotted down all the symptoms she has been having...sigh..

and then he says - maybe she is losing weight because of her celiac and that she has malabsorbtion. He then goes on to say that maybe she is getting gluten and has an ongoing inflammatory response and thus explains the fever and weight loss.

So I say - she just saw the GI in April - he reviewed her symptoms as well and felt she is doing great with regard to celiac. He tested her and the levels were normal (so no ongoing reaction to gluten - cause she doesnt get any!. We dont eat out hardly ever, I bake my own cookies and bread or buy kinnickinnick / TerraCotto (both dedicated gluten-free facilities). I tell them - that if she ever has gotten cc in the past - she gets a migraine - no symptoms even close to what we are seeing.

He says to take the time tested approach - as in "wait and see". Give her daily aspirin and if she gets worse, then maybe we should re-consider biopsy to check the small intestine. Umm NO! I will not subject her to a general anesthesia and biopsy if her GI doc isn't concerned about malabsorbtion. He then replies " Oh well, I guess it would be for academic interest anyway - its just nice to have it documented that her intestine is healed." Let's see, she was diagnosed in 2004, has been doing fabulous until these other weird symptoms show up and instead of looking at another casue - it HAS to be celiac.

I dont get it She has symptoms of fever and weight loss, a history of autoimmune disease ... do I just wait and see, do I relax a bit and if aspirin helps - just keep her on it with no idea why it keeps her healthy??

Needing some time to sort out what I will do..in a few days, I will write the pediatrician a letter and fax it and see what she says.

Sandy

[Rachel--24]

Sandy,

If you can afford it maybe think about taking her to a reputable Integrative Dr......they are MUCH better at figuring out this kind of stuff.

I dont see any mainstream Dr.'s anymore and I'm getting the best care and treatment that I've had since the beginning. I see a few different Dr.'s...a couple MD's and an ND....all WONDERUL!

All of my Dr.'s are primarily working with the kids (mainly the autistic population)....they are successful in treating many of these kids....even getting them off the spectrum completely!

Its mostly alternative stuff I'm doing now and its been an awesome experience for me.

Since Kathyrn has autoimmune problems I would guess that she's also got some hidden infections, maybe problems that were a result of previous vaccinations or exposure to environmental toxins....or more commonly...a combination of many things.

These Dr.'s are really good at identifying and treating those things that the mainstream Dr.'s never look for. Those Dr.'s never found anything to explain my illness in the 4 years I spent looking for answers.

Anyways....just something to think about if you continue to not be able to get any answers as to whats happening with Kathryn.

I'm sorry you had that experience with the rhuematologist ...very frusterating!

[2kids4me]

exposure to environmental toxins

I am certain beyond a doubt that mold started this. We even built a new house and have no carpet (hardwood and lino) - just to reduce environmental triggers. We flooded twice in the other house and had moldy drywall that we ripped out...but the worst mold was in a room just under Kathryn and the heating duct that went to her room - went right through the worst of it.

It affected Matt too.

Within 2 years of the second flood - Kathryn had Kawasaki, Matt was diagnosed with diabetes, then both with celiac.

That's why we moved and are mortgaged to the hilt. But we had to do it - that way we could make sure from the ground up, we had dry safe house.

Thank you for the suggestions, right now I am going to retire to my coccoon for a few days and not talk to any doctor.

Sandy

[home-based-mom]

PLease keep Kathryn in your prayers. She has been sick the entire month of July, first they thought strep throat and treated, then mono - but mono test was negative, now on cipro for kidney infection. We see a rheumatologist this Thursday - maybe she has an answer!! The rheumatology appt was booked before all this started because of weird stuff happening since last fall.

This is what I will give to the doctor when we get there - I had to start keeping a diary of sorts so I could remember it all. The referral was done to rule out a systemic vascultis - now that kidneys are involved - well - i hope that it is NOT a vasculitis!

Kathryn's history:

Problem with boils, and rashes around neck / scalp. scaly red areas, some large raised rings with normal skin in center , other areas are a solid patch. Doesn't seem to itch. Been okay for several months

Are these rings red? Has she been tested for Lyme disease?

[2kids4me]

No, they tested for everything else, when mentioned previously - they dismissed it.

Perhaps now that they treated with cipro and we have had a good response ( and cipro is one of the antibiotics used in Lyme) - they may reconsider the possibility. Her urine culture came back as no growth. That is why they started the antibiotics - they were certain it was a kidney infection........

Sandy

[Rachel--24]

No, they tested for everything else, when mentioned previously - they dismissed it.

Perhaps now that they treated with cipro and we have had a good response ( and cipro is one of the antibiotics used in Lyme) - they may reconsider the possibility. Her urine culture came back as no growth. That is why they started the antibiotics - they were certain it was a kidney infection........

Sandy

I would certainly look into Lyme....rings or no rings.

I know of many many people who became ill when exposed to toxic molds, heavy metals, chemicals or other environmental triggers...and later diagnosed with Lyme Disease (among other things).

The bacteria seems to be commonly found in ALOT of people....and not only sick people.....perfectly healthy people have this bacteria as well. Sometimes the immune system never gets stressed enough that the infection becomes a problem.

Exposure to toxic mold is an almost sure way to bring out the bacteria as it puts a heavy burden on the immune system. As a result your system becomes increasingly vulnerable to bacteria, fungi, parasites, virus, mercury, other toxins, etc. These things can then trigger autoimmune problems.

[2kids4me]

Thank you for the info - I will talk again with the pediatrician nd see if she is open to testing. The local doc responded (and was irritated ) that " Lyme disease has never been documented in Alberta, we dont have the tick responsible in this province"

She seems better on the cipro - for which I am thankful! No fever for 7 days! Longest "no fever" or "feeling crappy" spell in a loooong time.

Sandy

[kevieb]

sandy, i am so sorry!!! i'm glad that kathryn has had a week fever free!

[Rachel--24]

The local doc responded (and was irritated ) that " Lyme disease has never been documented in Alberta, we dont have the tick responsible in this province"

Hmmm...maybe you should print these out and send them to him.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Lyme is pretty much *everywhere* (not too sure about Alaska though )...the ticks dont recognize boundaries....they travel on people, on pets, on birds, on rodents etc. If there is no Lyme in Alberta....its only because Dr.'s (like that one) arent looking for it.

Anyways, its great that she's having some relief while on the Cipro!

It seems to be working against *something*....cant say whether its Lyme or not...but I would bet money she has some underlying infections....and not just bacterial...possibly fungal as well...because of the toxic mold situation.

[nikki-uk]

The'' large raised rings with normal skin in centre '' could also be ringworm (fungal infection on the skin)

[BettyL.]

PLease keep Kathryn in your prayers. She has been sick the entire month of July, first they thought strep throat and treated, then mono - but mono test was negative, now on cipro for kidney infection. We see a rheumatologist this Thursday - maybe she has an answer!! The rheumatology appt was booked before all this started because of weird stuff happening since last fall.

This is what I will give to the doctor when we get there - I had to start keeping a diary of sorts so I could remember it all. The referral was done to rule out a systemic vascultis - now that kidneys are involved - well - i hope that it is NOT a vasculitis!

Kathryn's history:

(and anyone with ideas - please reply!)

Low dose aspirin apparently keeps her well - and her urine normal. When not on it or taking advil - within 5 days - bilirubin, protein, occasionally blood can show up. Plus she gets the weird cheek rash, the one eyelid droops more than normal, vague symptoms that come and go.

Hypotonia (since birth)

Aspergers (diagnosed in grade 2)

Hypothyroidism diagnosed 1996

Dermatographia

Kawasaki - June 2003 10 - 12 weeks before "back to normal" had low dose aspirin for 6 months until coronary artery dilation resolved.

Celiac 2004

June 2006 - appendectomy / fecolith. Surgeon reported unusual amount of fluid in abdomen. Brown urine was noted in emerg dept and post op. Urobilinogen on dipstick. Liver function tests were normal.

Oct 2006 - lactose intolerant.

2007 - Extensive testing including ENA profile and full liver workup - including autoimmune. Resulted in diagnosis of Gilberts syndrome.

Problem with boils, and rashes around neck / scalp. scaly red areas, some large raised rings with normal skin in center, other areas are a solid patch. Doesn't seem to itch. Been okay for several months

Episodes of "feeling crappy", include: nausea, intermittent soft stool, flushed face, droopy eyelid, headache, tingly in the wrist, some numbess in legs. Red eyes, almost looks like pinkeye, but goes away in 24 - 48 hours and no discharge. Tender salivary glands. Any combination of symptoms can occur. Giving advil relives most symptoms.

Ketonuria (moderate ketones)showed up after minor injuries in a bike accident along with bilirubin, protein and excess urobilinogen. Plus the usual symptoms mentioned above.

Started on low dose aspirin daily after discussion of symptoms resolving when advil used each time she had these episodes. This helped and it is noted that when we stopped giving aspirin for one week (after bike accident and we used advil to deal with swelling and pain)...her symptoms returned 5 days after stopping aspirin and not giving advil. We resumed low dose therapy the following day (May 4th)

Pediatrician asked we check for protein in first void. *Morning urine was negative for protein. This was while she was taking low dose aspirin

May 3rd - pain behind right eye, can happen in low light but is more severe in bright light (sunlight). Off and on for 2 days then it stopped. * we resumed low dose aspirin the next day (see note from bike accident)

May 30 - competed in track and field, one foot "went to sleep" after a race and about 2 hours later, both ankles had pins and needles type pain. (prickly was the word she used)

June 11th - foot fell asleep after walking the dog

Intermittent fever throughout July, weight loss (9 lbs so far). Treat fever with Advil x 2 during this time. Fever responsive to advil.

June 30 - stop aspirin - initial symptoms of cold / did not want her on aspirin if this was viral (worry about Reye's)

July 1st - cold symptoms (sore throat / runny nose / fatigue)

July 4 - feeling "not great", soft stool. Mild cold. Sore throat and enlarged tender enlarged cervical lymph nodes, bacterial eye infection (red eyes with thick discharge) - Tobramycin eye drops

July 8/9th - feeling worse, come and go fever past few days ( 38 - 38.5)

July 10 - saw Dr., Started on PenicillinV for probable strep throat (10 days of meds)

July 18, sore throat, cough - slight fever (37.5) off and on that gradually improved. Red eyes but no discharge

July 22 - feeling better, energy, appetite improved

July 30 stomach ache at night, appetite way down, nausea.

July 31 - fever, stomach ache / no appetite / nausea / refused water. T 38.5, normal BM

Aug 1 - T 39.6, symptoms as above. Saw nurse practioner Mono test / CBC / ESR mono test neg / elevated wbc (13.8), increased neutrophils, ESR 14

Aug 2 - T 39.9 in morning, feeling crappy, no appetitie, nausea, legs feel "wobbly", Fever responded to advil but went back up after 6 hours to 38.5.

Aug 3 - T 36.6 in a.m. Noon - chills, pale, nausea, headache T 37.6 ...by 12:30 temp was 39.1, went to clinic - saw Dr., Complained of back pain and then said it had been hurting off and on . urinalysis (and culture), ordered blood culture. Urine - trace leukocytes / protein / bilirubin, concentrated. Suspect kidney infection. I was originally was going to wait til urine culture complete but at 8 pm - fever spiked again to 39.5, pale, anorexic, stomach ache, headache. Start Cipro.

Aug 4 - no fever all day..appetite initially low..then at supper asked for "real meal". Felt better, chatting, smiling again.

Aug 5 -no fever. Eating well. Pain in right leg, pain in upper left abdomen and around to back in late evening.

Kathryn tells me her right leg looks like it has a bump in the muscle, that she noticed a while ago..

Sorry to hear about your problems with Kathryn. I have taken cipro and learn the hard way that it has many negative effect. My bons start to twist just before I stop it. I won't take it again even if it is on of the few antibiotic that I am not allgeric to

[Fiddle-Faddle]

just checking in to add my prayers--keep us posted!

[gfpaperdoll]

I am currently taking Cipro for a bad bladder infection. (ate out & got glutened a few weeks ago...)

You have to be dairy free when you take Cipro & stay out of the sun...

Boils ccould also be HS, (no way can I remember how to spell this, but you can google HS disease...) which is an auto immune disease of the sweat glands, causes fever & all sorts of stuff. I have a personal friend that has it & Celiac & know of two other people on the internet that has Celiac & HS.

I second the suggestion also of ringworm...

The only other odd disease that I am familiar with that is a little like celiac, in that it is hard to pinpoint, is Hemochromatosis.

I also second the comment about seeing a doctor that will test for mineral levels, vitamins, that sort of thing in addition to a full allergy workup.

Yes, mold is very serious & maybe she has a mold type disease that is hanging around somewhere, be sure to have her lungs checked, maybe an MRI or whatever they are doing these days. I would also look into a roung of a longterm broad range antibiotic,

I would also make sure that she was grain free & dairy free. Keep looking for the answer...

[2kids4me]

HS is Hidradenitis and in Kathryn her boils etc do not involve sweat glands.

It was not ringworm - being in the vet profession - I have seen ringworm before and it was not that.

She is on day 8 of the cipro and no fever has returned, we are going to head out for a few days and maybe have a holiday. We'll see what happens after she is off cipro for a while.

She forgot sunscreen and a hat today when she took her dog for a walk, and yes her face is red. Her dad was here but didnt think of it ...

Sandy

[Cheri A]

Hi Sandy ~ I'm so sorry to read of Kathryn's struggle for health. I really have no helpful information, but will pray for you all! I definitely know what it's like to watch your kid suffer and have drs that won't really help you. We, also, are going the non-conventional way to treat Carleigh's allergies and are having great results.