New member:CNS Lupus,SLE,APS syndrome

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mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 10/23/2007 8:51 AM (GMT -7)   
Hi
 
It started in Grade School, my daughter had Raynauds,(hands and feet purple)  She went on to high school was a honour student, then in Grade 10, 2006 she found it more difficult to be active in sports, was so tired she could sleep 14 hours and still not be refreashed.  She had daily headaches and had trouble studying (brain fogg).  I suspected Lupus and booked in with GP then had a positive ANA nothing else convincing.  Saw Rheumatology in the Spring, nothing, saw her again in June and symptoms were magnified, if you look at the list for Lupus symptoms she had all but two.  Rheum thought she had Juvinile Arthritis, no bloodwk, xray nothing, 3 minute appointment the Arthritis society will contact you.
 
Luckily I have a Doctor friend and was referred to Sick Children Hospital as he felt as I did, this is not the diagnosis.  We went to sick kids and a battery of blood tests---None were alarming them to Lupus.  We heard the word Chronic Fatigue, Fibromyalgia---My daughter was so frustrated she thought they didn't believe her.  She was then refered to a Rheum Psycyiatrist( and I am a lousey speller).  I was so shocked that my daughter was telling her the little hallucinations she was having upon her questioning.  She told us that she has seen this before and felt she had Lupus on the Brain?
 
The next month we went to the Rheum and she said your daughter has Lupus a mild form and we will start her on Prednisone 60 mg and Imuan etc.   O.k. we have a diagnosis not that we wanted Lupus but we knew something was really wrong even her school work had suffered.
 
Then only 1 mth later we received a call from a country hospital, our daughter was fine but she had a seizure, her friend and her had been shopping 2 hours away and this happened in a intersection.  Luckily a parametic on the street saw my daughter turning blue and quickly took over.  She had another one shortly after I arrived at hospital the longest drive I ever took.  She stayed in this hospital overnite in ICU, after a spinal tap, CT scan and bldwk.
 
She was transferred to Sick Kids the next day by Ambulance and proceeded to loose speech and balance, the was unresponsive.  Now I as a mother at this point was freeking.  They tried to do a MRI, but her vitals dropped it was at this time they think she had her stroke.  They tried to stablize her then to go for a quicker test CT scan with contrast and saw the massive blood clot to ber sagital sinus in her brain.  This was July of 2007. 
 
Once on the floor it was 1000 mg times3 for Methylprednisone and Heparin Etc.  Rheumatology was so surprise to see her so sick.  We were lucky though they at least knew us.
 We went home after some time, her speech was a bit off, balance and short term memory was affected.  We here closely monitored then it all started again.
 
She started to loose speech and balance, and memory again.  Since she was on a low molecular Heparin injection they knew this was more than the clott so they told us the prednisone wasn't working and started her on a cancer, chemo drug Cyclophosamide. ( plus 3 pulses of 1000mg of methlpred.) This was August 2007.  On leaving she was having another side affect her bowels woundn't move.  We were hospitalized 3 times after that for clean out, one stay was 5 litres of Peg-Lyte (same as for a colonoscopy) through a nasal gastric tube and 16 peg-lyte enemas. 
 
So right now she is finished her 3 chemo treatment (has lost a lot of hair but now all yet-----).  We are going to more tests on her colon as it may be affected by the lupus.  We are seeing a compliciated Gyne as she is having her period all the time.  Neuro,Thrombo,Rheum,Psy,Opth.   She is on many meds, antiseizures,prednisone, G.l meds etc etc.
 
I know this is a long story but like many who will read this it took years for her progress to this stage of Lupus.  She was a pretty normal kid with school and a job right up to July the 17th 2007.   She at present slowly getting better, her speech and balance is much inproved.  Her memory is a bit of a problem.  She is sitting out this semester from school.  She is dealing with alot of fatigue.  She will still have several more treatments of chemo.
 
It has been the most worrysome time of my life.  It is very hard to see your lovely child suffer.  I just count each day with her a blessing.  I hope to gain strengh and knowlege from this website.  Thanks ahead to all who help me.
 
Sharon
 
 
 
 

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/23/2007 11:29 AM (GMT -7)   
Sharon,

I honestly can't imagine what you're going through. I too am a mother and my youngest is a girl the age of your daughter and I'd want to be institutionalized if she were going through what your daughter is experiencing. I can't offer you any advice but you have my sympathy and prayers.

How are you holding up? And how do you do it? You have really been on top of things and she's lucky to have such a dedicated mom.

There are others here who have CNS lupus and they'll have more knowledge to impart. I'm glad you've joined our forum and hope you get what you need here. I can assure you that you'll find that there are some wonderful and compassionate folks on the forum who'll be there for you.

Hang in there Sharon, and let us know how we can help.

(((((hugs)))))

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 10/23/2007 11:43 AM (GMT -7)   
Hi Sharon.  I want to welcome you and your lovely daughter to our forum.  What is your daughter's name?  We have some young members on the forum and I'm not one, but I have a 22 year old daughter so I can sympathize with you.  There is a magazine called Lupus Now that is published bi-monthly and it has a section for teens.  I think your daughter will enjoy seeing articles about and written by other teens.  I'm so sorry the two of you have been thru so much pain.  I'm sending your daughter lots of positive healing energy and MANY ((((HUGS))))!  I hope she improves soon yeah   yeah yeah
Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 


mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 10/23/2007 1:35 PM (GMT -7)   
Thanks so much,  her name is Sarah.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/23/2007 2:02 PM (GMT -7)   
((((((((((((Sharon and Sarah)))))))))))))

WOW . . . what a ride!! Oh it is so hard to see your sweet young ones having trouble like this. Welcome (again) to the forum Sharon. I'm so glad you told your daughter's story. You will find a wonderful lady here named Ginny. She is about 30 years old and has suffered a stroke from APS and chronic seizures, SLE and some heart issues and much more. She will identify closely with your daughter as she was younger 20's when this happened out of the blue.

YES! You will find much sharing of information here. The members are so helpful and supportive and its just nice to come somewhere where people understand what you are going thru.

Thanks again for sharing your story and I hope your daughter will also be posting. Have her start her own screen name . . . there are other youngish girls here who would love to have someone to talk to.

Hugs and blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 10/23/2007 2:37 PM (GMT -7)   
Thanks all,
 
Yes you can beleive this consumes me.  I really have to remember to keep my other two teenages, 14 and 16 in my attentions as well as it is a time that they need us parents.
Sarah right now has trouble with concentration,reading,writing and understanding.  Her psyh. has encouraged her to reach out even by phone of another girl she knows who suffered from CNS Lupus but she doesn't seem to be ready yet.  As a teenager she doesn't want to be sick or labeled sick. 
 
I tell her about the support that is available to her if she wants to seek it.  Hopefully she will one day.
 
I know it really helps me to read even other postings so that I can face my family as upbeat as I can.
 
Sharon.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/23/2007 3:26 PM (GMT -7)   
Sharon, my daughter is also a Sarah and I'm sure you know, there's nothing quite as precious as a daughter.
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


Staceymommy
Regular Member


Date Joined Oct 2007
Total Posts : 24
   Posted 10/23/2007 4:33 PM (GMT -7)   
WElcome I know some of what your daughter is going through. I had knee probs for most of life and kept hearing "It's just growing pains" then when I was a sophmore in HS I started to get sicker. That was 12-13 years ago and I think I'm too young to be labeled as sick. I also can understand you aspect too. Not as severe but my kiddo was 3 mos old when he had bowel surgery for a blockage and thank scared me I think that's what turned me overprotective of him. but thankfully he has been healthy since.
dx Aug 2001 SLE and Hughes, 2003 Chrondromalaysia patella, Hashimoto and IBS, 1995 Gerd and Osteo Arthritis, 2004 Migraines, Chronic Bronchitis, Sinus Tachycardia, 2006 Fibromyalgia

Married 9 1/2 years
Mom to 1 miracle boy born 11/10/02 (took 12 pregnancies)
Meds
Darvocet
Toradol
Prevacid
Toprol
Vistaril
Prednisone(during flares)
Albuterol Nebulizer

Supplements
One a day
Ho shou wu(helps with the infamation and break through pain)
peppermint and green teas
Primrose oil
chaste berry


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/23/2007 4:43 PM (GMT -7)   
Hi Sharon:

I just wanted to welcome you and your daughter Sarah. Sounds like she's been through the ringer. I hope and pray that she gets better here in the near future. I took cytoxan like your daughter did. I took it orally and IV, it helped my lupus a lot, but I got a rare blood cancer from the chemotherapy drug. So I truly understand how frustrating it is to see your girl so sick. I just wanted to wish you both well and say hang in there. Keep fighting don't give up. Things will improve for your daughter.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 10/24/2007 8:14 AM (GMT -7)   

Thanks so much for your support

Sharon


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/24/2007 10:25 AM (GMT -7)   
Sharon, I also wanted to welcome you and to let you know that my heart goes out to you and your daughter and I am so sorry for everything you have been through. I haven't been on the forum much this week because we are dealing with trying to help my 10yr old son who has some kind of autoimmune issue, but we keep getting the run around just like you described. It is so scary and so frustrating that so many docs won't take notice of anything even if it's staring them in the face until something really serious turns up.

I'm really hoping that her docs can continue to help Sarah improve.

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 10/24/2007 1:14 PM (GMT -7)   

Sharon - Welcome to the forum.  I am so sorry to hear about the struggles you and your daughter have been going through.  It pains me a great deal to see others suffer through similar ordeals.  I also have CNS Lupus.  It took over 10 years to get a diagnosis.  It has been very difficult and scarry to deal with.  You may want to try Sara on Aricept.  It is for Alzheimer's but I have been taking it for the memory loss.  It is working, so is cognitive therapy.  I have APS also.  She will need a constant supply of Heparin or aspirin.  The bouts of TIAs (mini-strokes) come on so quick that she won't know what is going on until it is too late.  You may also want to watch for loss of muscle control and rigidness as well as for loss of vision.  It is normal to seizure around these bouts and the seizures may last for months afterwards.  She will need to take steps to prevent seizures and to get help during these periods (carry a cell phone, have any medical supplies needed, wear a bracelet, etc.).  She may also want to carry her medical history and doctors telephone numbers with her in case of an emergency.  It sounds weird but it could help.  I always do this, just in case. 

A neuropsychologist can test Sara to see how much damage has been done.  Personally, I had lost 80% of my memory with difficulty doing math, speaking and understanding others.  It helped to determine my disability so I could receive the necessary assistance I needed. 

Please let me know if my experience with this could help you in any way.  I am still trying to find medication that the doctors will let me take as they say I cannot take Prednisone because of the CNS lupus will worsen.  Hopefully, we can learn from each other.  I guess that is what it is all about.  Glad you are talking about it as it will help you process all that is going on.  There are so many adjustments and readjustments to be made.  I would go nuts if I didn't vent a lot.  Speaking of nuts, I had what I called simple hallucinations.  Nothing too off the wall, not schitzophrenic, but more like things would appear way larger than they should look like or I would hear the same sound in my head over and over again for days.  Think I see things that aren't there, that type of thing.  So many things to talk about... but I will keep this short.  This is a great support group, I hope you will find it a valuable as I have.  Take care - Kristin 

   


 
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/24/2007 1:57 PM (GMT -7)   
There can also be brain/cognitive involvement in Lupus that does not show up in an MRI, so is not labeled CNS Lupus.

I've had serious and severe cognitive dysfunction like you are describing -- (concentration, reading, writing, understanding, focus, memory loss, losing words & thoughts, etc, enough so that I was housebound and couldn't drive or work) -- but was not diagnosed as CNS Lupus.

Fortunately for me, my rheumy tried Cellcept, which has NO record of helping the cognitive function, and it's become my miracle cure!!! My brain is back and functioning at about 80% of normal.

However, I have had none of the other problems you mentioned, so my case is extremely different than hers. I would look first at her medications & med interactions, some of the mental difficulties you mention can come from our meds.

Try not to worry too much, it just consumes energy we need to conserve for more important *actions*!!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 10/25/2007 7:10 AM (GMT -7)   
Thanks again to all who replied, It was great to know Kristin and Lynwood that you can relate to what we are going through about the memory problems.  Sarah psyc. I would not call her a neuopsyc. but she sees the Rheum. pts that are dealing with lupus and have psyc issues with the lupus ex. hallucinations or distortions etc.
 
I hope to gain insight from all.  Next wk we have a appointment with a complicated adolecent gyne clinic, since on the low molecular heparin she is having her period way to frequent.
Nov 6 is a CT scan to the brain to check if the clott from July is gone.
Nov 7th we are seeing the Hem. Thombo clinic for evaluation
Nov 14th is Cyclophosamide by IV again (Sarah tends to be very sick afterwards going to ask for better meds. for nausea) and a Rheum appointment.(with lots of bldwk each time)  We will see psyc at these appointments as well.
 
Its great to be at sick kids as they do take her very seriously.  She will turn 18 in Feb. so I am sure adult care will be very different.  I kind of dread that.
 
I hope to keep everyone posted as to what I learn or what I can learn from others.
 
Thanks again
Sharon

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/25/2007 10:47 AM (GMT -7)   
It also occurred to me later that the symptoms you mentioned can all be caused by fatigue or poor sleep -- either of which sounds quite possible due to all the other things going on.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/25/2007 10:50 AM (GMT -7)   
Sharon . . . if the IV Cyclophosamide makes your daughter ill, ask the tech if slowing the drip might help. I have had friends taking infusions/chemo where slowing the drip stopped most of the nausea.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 10/25/2007 12:21 PM (GMT -7)   

Thanks Rosie,

She finds she well controlled in hospital, it was the 3 days post cyclo that she felt so sick.  Thanks in advance for that suggestion though incase she is really nauseated in hospital.  They give her ondransdone, rotten speller I am.

 

Sharon


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 10/27/2007 10:44 AM (GMT -7)   
My goodness... this is terrible... I am so sorry and hope your daughter gets better soon....
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