[zusia]

Greetings from the Pacific Northwest. My 15yo son, Nick, is going through the diagnostic process at Children's Hospital in Seattle. They actually think he has more than lupus, and since he tests positive ANA for scleroderma as well as lupus, they're looking in that direction. However, while he has many symptoms that could support a scleroderma diagnosis, he doesn't have the typical red, swollen skin areas.

To complicate matters, Nick was on minocycline for a few months recently for acne, but I have reason to believe he displayed symptoms of lupus in previous years. Medical records show that he had unexplained rashes and joint and muscle pain, as well as documented cases of extreme reaction to the combination of sun and chlorine. Nick had no problem with indoor swimming pools, and he generally had no problem with sun-- although he's always been heat sensitive-- but the combination of chlorine and sun caused an agonizing hot, raised red rash over his entire body, fever, and migraine. Once he was in the sun during the day, then in the hotel pool at night-- two separate incidents-- and had this reaction. This occurred four times over a few year period before we caught on.

Nick has had muscle clenching and odd shooting pains for years, and three years ago was diagnosed with exercise-induced asthma, during track season, although he didn't have a recurrence the following two years of track season. Instead, he had a recurrend this past fall on swim team, which was unusual since swimming is usually beneficial to those with exercise-induced asthma.

Nick began experiencing severe fatigue during swim season that continues to this day. There are days he struggles to get out of bed, and he's missed a lot of school or is late.

Nick started 9th grade last fall as the top academic student, in accelerated classes, which he aced easily. He is a positive, engaging child, and has many friends. He plays sports-- tennis, swim, track and field, and more-- and several musical instruments.

Now, Nick struggles. He's gotten so far behind that the school has frozen his grades, and we're trying to get extensions so that he can turn in assignments past the end of the school year.

What I'm trying to figure out is if Nick's symptoms sound like they could all be attributed to lupus, or if it sounds like he may have something else. I know from experience on message boards that members can offer insight that even professionals lack.

Nick's other symptoms are: lack of sweating, although Nick says he thinks he does sweat, it's obviously less than others. I haven't smelled body odor on him for over three years. His clothes always smell freshly laundered. He also gets extremely hot at times, and often, but not always, has an extreme reaction to change of environment. For instance, if he's outside in the cool evening and comes into our warm-ish house, he feels intense heat, and his skin gets all red and feels prickly. Obviously whatever regulates temperature isn't working.

Another concern is that occasionally, and just recently, he can't make fists. His arms go weak and he has no strength. Then it passes. At other times his right arm seems to shudder-- in fact, at times his whole body seems to shudder, and he feels cold. Very rarely his right arm will jerk out involuntarily.

Occasionally Nick will experience loss of color saturation. He'll see in somewhat sepia tones, for brief periods, usually on waking up or going to sleep. Conversely, there are times he sees color very intensely.

I could go on but this is long enough. I'll add more as I get replies and questions. Thanks in advance for your help.

 

[keebler]

Hi Zusia,
Welcome to the lupus site. It is full of information on lupus and very caring members who are willing to help you.

I am sorry to read that your 15 yr old son is facing diagnoses of lupus. You will find that most of us have more than one diagnoses. I have sle, raynard, hypothyroid, heart failure etc.

Here is a web page of symptoms, it is part of this message board.

http://www.uklupus.co.uk/fact3.html

My heart goes out to you and your son. I know how difficult it is see our children go threw something like this.

I know there is members from the Seattle area on the board. If you want to know about doctors etc.

My brother has sle too and I am female.

Sending hugs,:hug::hug:
Lyn

 

[zusia]

This is the full list of his symptoms. The one thing he doesn't really have is a fever, but in going over medical records it seems his "normal" temp is 97.0-97.2, therefore a 98.6 may be high for him. Also he has elevated blood pressure, 150/90, say, when typical is more like 110/60:


butterfly rash
itchy burning skin
mouth ulcers
hair loss
joint pain
shooting pains
pins and needles
muscle clenching
muscle pain
muscle weakness
muscle tenderness
extreme fatigue
cold hands/feet-- very intermittent
shortness of breath after exercise-- more than typical
photosensitivity
rashes on arms, mottling on upper arms
heat intolerance
chills, shuddering-- occasional
restless legs
memory issues
retrieval issues
comprehension issues
dry eyes- sicca syndrome
dry mouth
neck pain, left side
sepia tones and other visual-- heightened awareness of colors
altered sense of taste and smell-- periodic, not constant
voice changes-- cracking

 

[Pink Pearl]

Hi Zusia,
Welcome to the board. I am in the greater Seattle area and a past president of the PNW LFA chapter.
The symptoms your son has sounds like it could have been me you were writing about. I had my first sle symptom when I was 5 - got monstrous migraines. The rash, heat, pool chemicals, etc, are very familiar.

You talked about him getting really hot, this happens to me when I get dehydrated. I keep a water bottle with me at all times as I never know when it will happen. You may want to try that for him. I need several ounces of water to calm it down, so just a drink at a fountain will not cut it. You may need an over ride to get him able to carry a bottle in his back pack at school.

Where is he going to school? Something I got from the office at (formerly BCC) Bellevue College was they provided me with self duplicating paper so a classmate could take notes for me and herself at the same time. It was very handy. Check to see if the school will provide him with that as well. Either that, or use a micro cassette recorder and have the classmate do the recording for him.

I knew of one other person who had scleroderma and sle. She battled many of the same things you are describing. So, yes, it is possible to have more than one autoimmune problem going on at the same time. When I was first dealing with sle and the other hangers-on, I got a LOT of help from National Jewish Hospital in Denver. They have a toll free line, 1-800-222-lung, with nurses who have experience in dealing with multi diseases, handling the phone lines. They have been one of the leaders in dealing with scleroderma research. I would suggest you call them and see what light they can shed for you.

The memory, comprehension, etc, issues are very common with sle cns. If I am in a more active state for sle, I will often "lose" a word. I can give the letter it starts with, definition, and the # of letters in it, but that word is out of my head. It is just recently being accepted that the brain is involved a lot more than it was ever believed before. We are living longer, healthier than any generation of sle before. As a result, doctors are learning from us every day. We are also not sitting back and accepting what was previously thought about what sle can do.

I have always run a low "normal" temp. Something I did in the early days was to "drop" a fever rather than spike a fever. I would go as low as 95.3 for hours rather than go higher. We just accepted that sle is a disease which can cause just about anything it jolly well pleases.

Daniel Wallace, MD, has written a book on living with lupus. I highly recommend you get it and both of you go through it together. You will both learn a lot at a time when you both need to interpret what is happening.

Also, ask your son to keep a symptom journal, making notes several times a day. Then, take it with you to the doctor visit. Go thru it with the doc so you both know that you are not being brushed off. Rate pain on a scale of 1-10, you decide which is high or low. That is very important for the doctor to know how damaging the sle is causing him.

If I can help you more, post here and I wll do what I can to help.
Sally

 

[Barb G]

Zusia,

Your son's symptoms are almost identical to mine. I haven't been officially diagnosed yet because I meet the criteria for more than one autoimmune disease, including lupus, so the jury is still out. Mixed Connective Tissue Disease (MCTD) is one diagnosis being considered for me. MCTD has overlapping features of SLE, scleroderma, and polymyositis and can include
all of the symptoms of CNS lupus (aka neurophsychiatric lupus)(and all of the symptoms your son is experiencing)

You have been given good advice in the previous posts. The only other recommendation I have is to read Dubois' Lupus Erythematosus, Seventh Ed. c. 2007. It's a medical text intended for physicians but I found most of it understandable (I just skipped over the parts that were over my head) and more informative than anything I have read to date. It includes information about MCTD as well as other autoimmune diseases, including diagnostic criteria. I was able to obtain a copy from my public library via interlibrary loan.

I think your son's physicians are on the right track.

Barb

 

[onetay]

Zusia,
Hi and welcome to the site. I am sorry the your son, you, and your family are facing this. It sounds like he has a couple things going on. I am not sure what kind of medicine he is on but have you checked the side effects to link any of this to the meds? I do hope that you also share this site with your son as there are some other teens on here that could offer him some moral support and give him someone like himself to talk with. I know as parents we want to do it all for our children. There maybe some feelings that he is unwilling to share with you and would be willing to work through with the other teens on here.

It is wonderful that you are reaching out for him and yourself. A support net is so important when facing a chronic illness. It has to be hard on him to of been so active and have that energy level drop through the floor. I am sorry to say that I have not met anyone that has success with limiting or curing that part of an illness (fatigue).

Please feel free to keep us updated on your son's condition, and how you and your family are doing with all of this (it can be hard on everyone). I hope he feels better soon and that he gets dx very soon for treatment.

 

[zusia]

Hi Zusia,
Welcome to the board. I am in the greater Seattle area and a past president of the PNW LFA chapter.
The symptoms your son has sounds like it could have been me you were writing about. I had my first sle symptom when I was 5 - got monstrous migraines. The rash, heat, pool chemicals, etc, are very familiar.

You talked about him getting really hot, this happens to me when I get dehydrated. I keep a water bottle with me at all times as I never know when it will happen. You may want to try that for him. I need several ounces of water to calm it down, so just a drink at a fountain will not cut it. You may need an over ride to get him able to carry a bottle in his back pack at school.

Where is he going to school? Something I got from the office at (formerly BCC) Bellevue College was they provided me with self duplicating paper so a classmate could take notes for me and herself at the same time. It was very handy. Check to see if the school will provide him with that as well. Either that, or use a micro cassette recorder and have the classmate do the recording for him.

I knew of one other person who had scleroderma and sle. She battled many of the same things you are describing. So, yes, it is possible to have more than one autoimmune problem going on at the same time. When I was first dealing with sle and the other hangers-on, I got a LOT of help from National Jewish Hospital in Denver. They have a toll free line, 1-800-222-lung, with nurses who have experience in dealing with multi diseases, handling the phone lines. They have been one of the leaders in dealing with scleroderma research. I would suggest you call them and see what light they can shed for you.

The memory, comprehension, etc, issues are very common with sle cns. If I am in a more active state for sle, I will often "lose" a word. I can give the letter it starts with, definition, and the # of letters in it, but that word is out of my head. It is just recently being accepted that the brain is involved a lot more than it was ever believed before. We are living longer, healthier than any generation of sle before. As a result, doctors are learning from us every day. We are also not sitting back and accepting what was previously thought about what sle can do.

I have always run a low "normal" temp. Something I did in the early days was to "drop" a fever rather than spike a fever. I would go as low as 95.3 for hours rather than go higher. We just accepted that sle is a disease which can cause just about anything it jolly well pleases.

Daniel Wallace, MD, has written a book on living with lupus. I highly recommend you get it and both of you go through it together. You will both learn a lot at a time when you both need to interpret what is happening.

Also, ask your son to keep a symptom journal, making notes several times a day. Then, take it with you to the doctor visit. Go thru it with the doc so you both know that you are not being brushed off. Rate pain on a scale of 1-10, you decide which is high or low. That is very important for the doctor to know how damaging the sle is causing him.

If I can help you more, post here and I wll do what I can to help.
Sally

Thank you very much for the reply. I can't believe my luck in connecting with someone in my area with the knowledge and experience. We're in the Gig Harbor area, driving in to Children's as needed. I am so grateful to the local immunologist who referred Nick to Children's. He understood the urgency and told us we could either see a local rheumatologist who treated adults, or drive to Children's-- basically whoever could see Nick soonest. Of course I was willing to drive, but only now realize the importance of having the corps of specialist that only Children's can offer. I am exremely pleased with the level of care we're receiving there-- it's so personalized that the concern and support is tangible. I wish it were available to adults.

Thanks for all the tips. We're big water drinkers here, very little soda, and for years my kids always carried water bottles, but Nick has been lax this year. Last month Children's offered him a "prize" after his MRI --they give the little kids toys but Nick chose a Camelback water bottle and I told him that was a very good choice.

Nick is a 9th grader at Peninsula High School in Gig Harbor. He took accelerated math there last year, as an 8th grader, and was at the top of his class, and lobbied for his group of friends to be allowed to take AP science this year, so at least he established that all-important credibility factor before the symptoms accelerated. Still, it's been difficult for teachers and staff to understand how he can appear "normal" yet be unable to complete work. I so badly want someone to say "We understand" and take the helm on this, aggressively, using experiences they may have had with other students, but I work for the school district and know that isn't how that works. I did find a good site for accommodations for students with lupus-- tomorrow we're having a school meeting to discuss these.

Luckily, I'm pretty familar with the process as my younger son has what we refer to as Asperger Soup-- a form of autism coupled with other conditions. I've already gone through the "He looks so normal" routine. I'm a formidable parent advocate which will help Nick, but it's still daunting. I'd take an autism diagnosis over this any day.

The hardest part is the fatigue and the brain fog. Can anyone tell me why the brain fog is more apparent when Nick is trying to study? He can play challenging computer games just fine, but when he picks up his school books, his ability to concentrate and his comprehension both deteriorate. Is it the anxiety of having deadlines? He almost freaks out when he even considers the amount of school work that's piling up.

Nick has always had anxiety, but not the fearful kind. In fact, he's always been a fearless child. Very ADHD-- do you see a lot of ADHD in people with lupus and related conditions? Nick's anxiety is more of an undercurrent, relating to how he processes and sorts information. Hard to explain.

Also, I've always known he doesn't have a shut-off valve. He can't regulate how much he wants to do according to how much his body will let him do. This is typical in ADHD-- that need for more, more, more. He's never used ADHD meds-- he's always been able to manage it with exercise-- sports-- and music and social stimulation.

Interesting about the body temp. That might be what's happening here. I'll take your advice on the book and journaling. I've been taking notes but not actually keeping a daily journal, because I didn't want Nick to get locked into focusing on his symptoms. But if you think it would give him better control, I'll suggest it.

Again, thanks so much. I'm afraid I'll be writing rather lengthy posts, as I get this sorted out. There's so much to tell, and to learn. One interesting note is that I actually had symptoms of lupus myself about 4 years ago. In a 2 week period I was diagnosed with pleurisy, had nose and mouth sores, butterfly rash, hair loss, some joint pain, mainly in fingers, and photosensitivity. I never pursued it because I felt it was all due to anxiety from my husband retiring that same month. I have not really had symptoms since, except the photosensitivity-- I get rashes from the sun, but only sporadically. I do occasionally have joint pain but heck, I'm 54.

 

[zusia]

Zusia,

Your son's symptoms are almost identical to mine. I haven't been officially diagnosed yet because I meet the criteria for more than one autoimmune disease, including lupus, so the jury is still out. Mixed Connective Tissue Disease (MCTD) is one diagnosis being considered for me. MCTD has overlapping features of SLE, scleroderma, and polymyositis and can include
all of the symptoms of CNS lupus (aka neurophsychiatric lupus)(and all of the symptoms your son is experiencing)

You have been given good advice in the previous posts. The only other recommendation I have is to read Dubois' Lupus Erythematosus, Seventh Ed. c. 2007. It's a medical text intended for physicians but I found most of it understandable (I just skipped over the parts that were over my head) and more informative than anything I have read to date. It includes information about MCTD as well as other autoimmune diseases, including diagnostic criteria. I was able to obtain a copy from my public library via interlibrary loan.

I think your son's physicians are on the right track.

Barb

Thanks so much, Barb. Mixed connective tissue disease, eh? It seems I've stumbled over that in my research but will look at it again. This is precisely that kind of information I've needed. And I'll take your advice on the book. Sounds like a must have.

 

[zusia]

Zusia,
Hi and welcome to the site. I am sorry the your son, you, and your family are facing this. It sounds like he has a couple things going on. I am not sure what kind of medicine he is on but have you checked the side effects to link any of this to the meds? I do hope that you also share this site with your son as there are some other teens on here that could offer him some moral support and give him someone like himself to talk with. I know as parents we want to do it all for our children. There maybe some feelings that he is unwilling to share with you and would be willing to work through with the other teens on here.

It is wonderful that you are reaching out for him and yourself. A support net is so important when facing a chronic illness. It has to be hard on him to of been so active and have that energy level drop through the floor. I am sorry to say that I have not met anyone that has success with limiting or curing that part of an illness (fatigue).

Please feel free to keep us updated on your son's condition, and how you and your family are doing with all of this (it can be hard on everyone). I hope he feels better soon and that he gets dx very soon for treatment.

Thanks, Tammy, and good question about the meds. Nick has been off the Minocycline since March 10-- he was only on it for a few months-- and the symptoms have ramped up since. He's also on Restasis for the dry eyes.

He was on albuterol as needed for exercise-induced asthma, and they added Flovent in late March, two puffs morning and night, mainly for a cough he had developed. He felt it was interfering with his sleep, so reduced to two puffs in the morning only, in late April, after the coughing had stopped. The rheumatologist at Children's just took him off that, and now he's on just the Restasis, some meloxicam for inflammation, and Prevacid for possible (but totally unlikely) GERD. They already did an esophagram which pretty much ruled out GERD, although he does have a mild motility problem, but they want to be 100% sure.

 

[zusia]

p.s. Sally-- what can you tell me about this connection with pool chemicals. You're the first person I've met who has a similar experience. Like I said, with Nick, he could swim all day in an indoor pool, it's the combination of chlorine and sun that seems to affect him. He played on tennis team last fall with no problem-- it was when swim team started in November that symptoms started popping out. In fact, at first I thought it was just the chlorine-sun connection. Nick spent so much time in the pool his skin reeked of chlorine, and then he'd walk home from school in the sun. I thought that was the main issue, until his condition worsened after swim season ended.

 

[lazylegs]

Hi Zusia,

When your son is playing computer games he is just reacting to what is on the screen at the moment. Reading a text book he has to comprehend what is written which can be difficult and then remember what he is reading. Trying to do this through both the pain and the brain fog can be a challenge. I takes me forever now to read a book. I constantly have to go back and reread sections to keep things straight. The more in control the disease is the less of a problem it is.

I hope they get Nick's diagnosis sorted out soon. It has to be terrible for someone his age to be suffering like this.

Take care,
Lazylegs

 

[zusia]

Hi Zusia,

When your son is playing computer games he is just reacting to what is on the screen at the moment. Reading a text book he has to comprehend what is written which can be difficult and then remember what he is reading. Trying to do this through both the pain and the brain fog can be a challenge. I takes me forever now to read a book. I constantly have to go back and reread sections to keep things straight. The more in control the disease is the less of a problem it is.

I hope they get Nick's diagnosis sorted out soon. It has to be terrible for someone his age to be suffering like this.

Take care,
Lazylegs

Ah, that makes sense. Slow processing also reduces the brains ability to store info in memory, which is what he has as well.

The problem this week is that he has an AP science exam and he's barely functioning. At first we attempted to get accommodations but now I think he needs to take the makeup test in two weeks, but we don't know if College Board will okay it. Furthermore, we have no idea if he'll be in better or worse shape by then.

It's terrible for anyone of any age.

 

[Pink Pearl]

You are not alone in this journey. Hopefully you will find that though our life experiences have been different, we are more alike than different.

re: swim pool
I also will have chlorine stick to my skin, despite shower after shower. I can smell it for days. I had more asthma problems, possibly from chlorine, when I was swimming several times a week. I found that while my physical level was improving, I was losing in lung function and cognition area. Not worth the trade-off. Again, I wondered if it was due to the chemicals used in the water. I finally gave up as the bad was outweighing the good.

Since you are at Children's, you might ask his rheumatologist if he could try the pool there. I'm not sure if there is a critieria to be able to use it, but no hurt in asking.

Interesting that you connect with ADHD. I've never been diagnosed with it, but pre lupus I was working full time, training my horses, going to school in the evenings, during winter, teaching skiing on Saturday & Sunday, going for my ski instructor certification (got it), and in off season, working on "free" nights and weekends for a child care agency. I had a roommate leave me with his portion of the bills. I am NOT alone in this. I call this a AAA type personality... as in type A.

In my case, lupus is hereditary. I had one younger cousin who lost her battle with sle and juvenile diabetes several years ago. Our grandfather's oldest sister died in her early 20's of a "heart problem." My cousin died of her 10th heart attack at 36.
If you were having sle type symptoms, I would mention this to the rheumatologist. It may be you need to be tested and watch for any further symptoms. Approx 20% of sle cases flare once and never flare again.

The DuBois lupus book is superb. It is expensive, over $100 from the one I have. I find it covers so much of what we go thru. If you can find it cheaper, grab it! I prefer it to the Dr Wallace book, but that is just me. I think that Dr Wallace has put out a very good explanation and day to day living guide. I just want the more detailed info that the DuBois book has.
If you can get access to the medical library at Children's, check it out there.

As far as the test this week, see if you can get him to settle down and listen to meditation tapes/cds. I find that they help my brain to settle down and focus on what I need to do. Rest, rest, eating healthy, stay hydrated, rest. Keep his medication schedule scheduled. As calm as he can stay inside will go a long way to helping him focus on the test. If he can work out, do so so he can calm his brain without the jitters of his body nerves. If he can't work out well, meditation is good too. Has he tried yoga? Some people have had great success with it.

Do not ever think any question is insignificant. We (collectively here on the board) have lived with this companion for a long time, in my case about 50 years. I am 56, so since I started with my first symptoms were about 5, it has been a long journey.

Prior to my sle diagnosis, if I was out in the sun all day, I would pay for it with a monster migraine. I would be nauseated, headache like you can't believe, and a sunburn was even worse. Naturally, I am blond, fair, and blue eyes, so sunburns were always worse than most other people. Fortunately, our nw days are not always hitting those hot rays. Love the gray overcast!

Positive thoughts for Nick for this week. He can do it, just needs to believe in himself that he can do it.
Sally

 

[zusia]

Thanks, Sally. I truly appreciate the support.

Nick has always wanted to play water polo so the possible connection to chlorine is disappointing. In the future, our school swimming pools will both be going to saline, but I don't know the timeline on that.

Before I understood ADHD, I always referred to my go-getter husband as a type "A" personality. But with two sons diagnosed-- Nick and his older half-brother--and similar personalities in dh's family, the genetic component is obvious. I'm the opposite-- I refer to myself as type "Ehhh..."

So much is hereditary-- autism runs in both our familes, ADHD in dh's, and different health conditions from asthma to GERD in both. I wouldn't be surprised if there was a lupie in the gene pool. My sister's daughter was evaluated for lupus and other auto-immune disorders when she was 19. She had several rough years but is 32, married with two children, and no signs now that I'm aware of. I'll be seeing her in a couple of weeks-- they all live in Spokane-- so we'll talk.

What a great idea about the library at Children's-- thanks much. I'll be cuddling up with books there, I'm sure.

Funny thing about yoga-- my husband mentioned this recently, too. The high school actually has a yoga class substitute for PE. Perhaps we can stick him in it until the end of the school year, if it doesn't disrupt his schedule.

I had to laugh at the thought of Nick "meditating" -- but I agree it would be a good skill to learn. I just got off the phone with College Board and they say he can take the makeup AP test next week. If he's not well enough by then, the school can request a further extension.

Nick is normally not anxious about tests-- in fact, he enjoys them. It's the darn brain fog, and fatigue. He's just not functioning right now. I know you understand.

Nick has extremely thick, wavy/curly auburn hair, and his Scottish side white skin, and blue eyes. Luckily his hair is so thick that you can't really tell that he's losing it. We just find it everywhere-- sink, keyboard, dinner table.

Wish me luck at the school meeting today. And again, thanks so much for the support.

 

[Pink Pearl]

By now you have had the meeting, and I hope it went well. I agree that yoga is not the "norm" for a teenage boy, but there is a lot more work in yoga than most people even imagine. Plus, it gives him flexibility that he can use in the pool if he is able to continue swimming. Because it goes slowly, it can be used on days when joints/muscles are sore and not risk damage.

Many years back, then Seahawk qb Jim Zorn, and a few other Seahawks were going one on one in the pool with Tracy Ruiz and Candie Costie (sp) after the two girls had won gold medals in synch swimming at the Olympics. The men were good sports. They were trying to duplicate the moves of the girls and that included holding their breath, swimming upside down, and treading water for what seemed like ages. The men failed miserably but were great sports about it. They thought they were in pretty good shape but those girls had it totally over them. They held on for a few minutes, but could not hold their breath for the times the girls did. :swim:

With the budget cuts the schools are having to make now I would not think the pool systems would change any time soon. Did you catch the news of the screw-up of the Seattle School District with the teachers? When the supr was hired, I wondered how she would handle the sensitive teachers union. The board has made some major errors in selecting supr's lately.

I'm glad my suggestion about the hospital library sounded good. As many hours as people spend there, no reason to not make use of it. I don't know if they check out books, but you can copy the pages you want to read and read them later. Too many people do not know that hospitals have libraries and that there is a TON of info held there.

I am going to head for bed. I had an appt in Seattle this morning and then drove up to Mt Vernon to pick up my new greenhouse. With our weird spring, I have been late at getting my seeds started. With the 3 pups, 2 yrs, 15 mos, 9 mos, I seem to have my concentration distracted easily. They are fun, I just had not planned on raising a puppy again. They came as fosters, and just haven't had luck finding the right homes. I got 2 of the 4 placed, but the little male is a special needs and the younger female is ultra "sensitive" with her feelings.

I hope Nick is doing better with the pressure off for this week. The brain fog is one of the hardest things to work thru. When I was going for my SSD, the "expert" physician there told the judge that sle could not cross the blood/brain barrier. Fortunately I had been dx a couple days before with cns migraines. Too many doctors still are skeptical at the damage cns can do.

Even if you don't find sle in your sister's family, look for other autoimmune diseases. More families have multi autoimmune diseases than specifically sle. It just so happens that in my dad's family sle is hereditary.

I remember when I was losing a lot of hair. The higher my pred dose, the darker my hair got. Then I started to lose it. I remember making my bed one morning and wondering what my black & white long hair cat had been doing on my pillow. Then I looked, and the hair was mine, not cat. During that time I was hospitalized and I remember that my nurses changed my pillowcase multi times in the day because it would get covered with my shedding hair. Most of it did come back if it is any consolation for Nick.

Positive thoughts for Nick's week, and yours too.
Sally

 

[zusia]

The meeting went okay-- a couple of teachers that we really needed to see didn't show up-- but the incredible part is that one staff member disclosed that she had lupus, and understood. I was very grateful for that moment. Nick said he was grinning ear to ear.

I hope you had a good, restorative nap. Nick stayed home again today, feeling very dizzy and nauseated this morning, with lots of pains and muscle weakness. At one point he wanted me to squeeze his hands to make them feel better, and that reminded me of kids with autism who like the feel of heavy weight on them. I looked up weighted blankets which are very expensive, and there was a company giving one a away in May, to the winner of a short essay about why the blanket was desired. Well heck, I thought, I've got a pretty good story so will write one this week.

In the meantime, my dentist's office is going to find me a lead blanket for Nick to use. I stopped in on my way to work and they were eager to help.

Tomorrow we'll be at Children's for a ct-scan with contrast, so I'll have time to visit their library. Thanks again for the suggestion. I ordered the other Wallace book from our library and it should be here in a couple of days.

I really enjoy your stories-- the Seahawks one made me smile. You're right-- I'm sure the saline pools will have to wait. I've been pretty oblivious to the news so missed the Seattle School District flub. I'll have to check that out.

Coincidentally I did dog rescue and foster work for years here, mainly before I had the boys. Once I had toddlers it became unsafe to leave them strapped in their car seats while I tracked down wanderers, not to mention throwing strange dogs in with the boys. I captured two on a dangerous highway recently, and managed to track down the anxious owner within hours-- it felt so good to be able to return them.

We're dog-people here, and have three of our own. Are you doing breed-specific rescue or just general?

 

[Pink Pearl]

Good luck at Children's. I'd offer to meet with you but have a full day for myself tomorrow. Good luck with the library. I'm sure you will be interested in what you find.

I have mini dachsies. I got my 2 yo a year ago from a rescue in Idaho. Then, last fall got 4 mini's, got 2 of them placed and these last two are most likely going to stay here. The little male has the "double dapple" mutation with vision damage. The other little girl, 15 mos, is his half sister. Same mom-diff dads. My female that I got was from a back yard breeder and had been abused by the husband of the breeder. She is VERY male shy and especially shy of men with large hands. The younger two were born into a totally different, warm and loving environment. So, they don't have the "isms" that Molly does. They are all very bonded to each other and to my 6 1/2 yo cat. He was my "Mr Mom" when I fostered kittens and has taken over the pups. A very unique cat. The pups adore him and if he comes outside with us, he will get mobbed by the 3 pups when he shows up. I've seen them run so hard at him and not really slow down when they get to him that they just bowl him over. He is not small - 18#, so is not too easy to bowl over. Never a dull moment here.

How wonderful that you have an empathetic ear at the school! That will make things for Nick so much easier. I am sure that Nick was smiling finding it out. One of the horrid parts of sle is that we suffer in isolation as it is just too hard to get up and out in the public. Then there are "bugs" running around and we need to avoid them. One more way of isolation.

The LFA chapter has tried several times to get a support group at Children's, and have been repeatedly told no. Their excuse is that there are not "professionals" who would be the facilitator. We do put the facilitators through a training program, but not enough for the people at Children's. We've thought that it would help the kids to have someone who has been thru what they are experiencing and can give them suggestions on how to survive and still have a good life. Learning to pace the energy output is hard enough with an adult, let alone a busy child/teenager. Group activities are so important for teens that it has to be hard for one to have to learn to limit them. By giving survival hints that have worked for us, the kids don't have to rewrite this book. All they have to do is to move forward. It is a different world we live in, but it can be good even as it is different.

"who like the feel of heavy weight on them" This reminds me of myself. I have always wanted heavy blankets on me in winter. I have always slept cold and needed the blankets to keep warm during the night. Electric blankets were a godsend. When I would have one of my "dropped fever" episodes, I would crank my blanket up to the highest setting and crawl in. It would slowly get me warm again. The peripheral neuropathy I have didn't help as I can't feel until the footbones get painful with cold. The new fleece sheets are so wonderful! I absolutely love them!

Good luck today. Drive safe.
Sally

 

[zusia]

The library at Children's is limited to a few bookshelves devoted to the entire spectrum of conditions children mgiht get, and I'm sure books are out on loan as well. I took the two they had on lupus-- Lupus Q&A by Lahita/Phillips and Living w/Lupus by Blau & Schultz. Both are light reading and we read most of them in the hour we had to wait, but took them home anyway.

I have a question on the presentation of symptoms. Nick seems to be able to forget some symptoms when he gets a phone call from a friend or something is interesting on tv. I've been able to distract him with conversations about his interests. This doesn't remove the limp or take away severe pain but it does mute it to the point where he can walk and chat happily for a period of time.

If I leave him by his lonesome, he'll eventually develop more and more pains, and then I'll distract him again and he's better.

Do other people experience this phenomenon as well?

I'm wondering if it's a seratonin issue-- Nick is always a cheerful kid, ever the optimist, no mood issues, so I'm not sure what to make of it. It just seems that if he does something he enjoys which I'm guessing raises his seratonin levels, he can somewhat mediate the pain. Does this make sense?

I'm sorry you weren't able to get a support group going at Children's. I know what you mean about them wanting a professional to lead it. We ran into the same problem with an autism group I started-- we wanted to provide education for the schools but they wanted it to only be done by *real* professionals. So we just operate it outside the school district which works fine but puts us in a difficult situation because we would rather work with the schools.

I love mini-dachs. Every one I've ever known is personality-plus. We've got a 7yo PWD, a 4yo mix, and a 5yo Cairn that was recently given to us by local breeders who decided not to breed her and knew she's live in dog heaven here at our place.

 

[lazylegs]

Nick may be doing what many of us do. He might be putting on a brave face when he is with his friends. The distraction has to help him keep his mind off his pain also. That is why it is so important for chronically ill people to stay connected with others.

Take care,
Lazylegs

 

[Clare.T]

Hello

You are doing a great job becoming a wonderful advocate for your son in the lupus arena now. It is so important for us all to retain a sense of ourselves usual activities as far as possible and pleasures, friends, contacts as much normalcy as possible to help cope with the difficulties. Even more important for the youngsters. In fact it can be a problem to get them to avoid what is not good for them. We do that ourselves on occasion too when we judge that it is well worth taking the risk of suffering the next few days. It is all part of learning to live with and despite the disease finding that fine line between adapting and not letting it rule one's life. It strikes me that it is not easy with the youngsters who are a stage when they becoming more independent and I know that they often rebel quietly when lupus becomes the focus a bone of contention and refuse to take their meds and so on. He sounds a wonderful young man

I have been meaning to ask about blood test results It would be interesting to know what has come up so far. They can be as important as symptoms sometimes even more.

If you want a taste of Dubois google a topic with Dubois in the search term. Large chunks of it can be found on amazon. I have a different take from other people. Starting to learn about lupus by reading Dubois strikes me like learning to swim by flinging yourself off the 10 metre board. I think the same about The Lupus Book. Since all aspects of lupus are covered there is a great deal that will never concern any individual case

An alternative approach is to focus on the case in question in this case your son's, learning from test results and reading up about the conditions that are mentioned by the doctors. The emedicine articles are invaluable for thorough concise descriptions, symptoms, diagnostics, treatments.
You have to register ( free ) before you can access them

Being able to dialogue with the doctors is so important

All the best
Clare