View Full Version : Symptoms of Lupus- Pediatric Lupus? *Added Pic, Pg. 3*
04-04-2008, 04:06 PM
I want to apologize in advance because this may be a long, garbled mess of a post. My mind is tired, and I am not organizing my thoughts quite right today.
I am posting because of my little boy. I have posted at several different types of forums looking for help or information, I was hoping some of you might have some answers for me based on your personal experience.
Our 9 year old son has been having some issues. He has been seeing a neurologist. It sounded like her first concerns were to rule out MS, Lupus and arthritis.
He has had several tests, MRIS, EEGS, urinalysis, blood tests. So far everything looks good with the exception of a "low positive" ANA Titer test.
His potassium was a teeny bit low, so we have added a multi-vitamin to correct that, but the doctor did not seem to feel like it could cause the symptoms.
He has had an MRI of the brain and the spine, and everything looked terrific.
Now my son is set up to see a rheumatologist- but he can't get in till the end of May. He is currently taking Gabapentin to keep his pain under control while we wait.
I am hoping that if I list some of his symptoms, some of you can help me understand a little more about Lupus, and how it may differ, if it does, from what he is dealing with.
I DO understand SLE can be different for everyone, so I am not just looking for solid, absolute medical information- just advice or to hear about your own experience.
I have listed his symptoms so many times, but it seems like there are new ones every day, so this will not be a complete list, but hopefully it will give you the general idea.
All of this seemed to possible have a few mild signs on Dec and Jan, then right at the beginning of Feb. it all just HIT HARD and started piling up.
Some of his symptoms are...
Burning, tingling, itching, stabbing, shocking pains that last for several seconds each, anywhere and everywhere on his whole entire body. Sometimes he feels like they are in the bone, sometimes in the muscles, other times, right on the surface of the skin.
Normal OTC pain relievers do not have any effect on the pain at all. So far, only Gabapentin has helped.
Headaches that are quick stabbing or shocking pains lasting 2-20 seconds or so.
Pain that lasts a little longer in jaws, legs, arms, stocmach, side or sides. Sometimes he has a limp for pain in the leg or foot.
A squeezing or tightening pain around the waste/ribs
Uncomfortable Goosebumps without a reason from time to time
He hears whooshing or ringing sounds in his ears
Sensation of something IN his eyes or ears. Like a crawling itching feeling that alternates with a sharp stinging or shocking pain.
Urinary daytime incontinence/leaking. Bedwetting (not too worried about that, he will probably outgrow the bedwetting.)
Also, we did not consider this to be a part of his current issues, but he gets a LOT of mouth ulcers, which we have always believed to be from the Nexium (and past medications) he takes for his reflux. he was born with reflux.
The doctor seemed concerned about the ulcers, so I thought I should mention it here.
There is so much more I want to say here, but like I said, I can't seem to put my thoughts together today.
We have noticed he gets worse when he gets hot.
He has GAINED 13lbs in the past year, without eating a lot more, and with the inclusion of daily martial arts classes (1-2.5 hours a day 5 days a week or so, until recently when he sometimes does not feel up to going)
I have read people tend to have weight LOSS with SLE- has anyone had GAIN- (PRE-medication)?
I do not see any regular rashes on him, he does have kind of a mild raised bumpy places on the tops of his arms, and a few little bumps on his chest, but the doctor said it was just Keratosis Pilaris.
He has always been VERY PINK. All of his life, our son has had very pink cheeks. They are always rosy, but the warmer he gets, the pinker he gets of course. This pinkness does NOT go over the bridge of his nose, just round, red cheeks.
Everything I have read makes it sound like the rash associated with SLE always goes over the bridge of the nose- is this correct?
He has had so many bloodtests, and again, they were all fine except for the low positive ANA test. Nothing else looked abnormal. I have read that about 10% of healthy kids have low positive ANA tests.
Does anyone have anything to share? I am sure I will think of more info. I need to post here, but this is a starting place.
Does it sound like a Rheumotologist is the right kind of doctor for him? I know they see many types of problems. I just want to make sure we are moving in the right direction.
Thank you for any help.
04-04-2008, 04:29 PM
There is a condition, I cant remember the name of it, I was reading an article about a study being done. The people with the condition complained of feeling like there was something moving under their skin.
Sometimes if felt like things were poking through their skin. Even though tests showed there was nothing there. The belief is that it had to do with the nervous system sending off false messages. They were looking for people with these symptoms to be part of a study group. I wish I could remember the name of the disorder. But it escapes me.
Lupus is such a strange beast. It shows it's self in part here and there. So it's very hard to get a full picture of what's going on. I'm sorry to hear your son is in such pain.
Are you familier with the term flare? Its what we refer to bad episodes of pain and swelling and rashes and all the other fun stuff.
I'll let others speak to you about the symptoms. But the mouth sores. Those are very common to lupus. You may want to keep him out of direct sun light for a while...I know it's hard for young children but if it is lupus then sunlight can bring on a flare.
Hang tight I'm sure others will be along soon :) and welcome
04-04-2008, 05:27 PM
Hi Worried Mommy..
Oh, the worry you must feel...hugs.
That is a myraid of symptoms. All which could fall in the Lupus category and too Fibromylagia (FMS) from my latest reads. My last appointment suggested I may have FMS. From what our Angel moderator Saysusie said..the new meds I have been prescribed is used to treat FMS. I have already been diagnosed with SLE, GERD, Sjogrens Syndrome and Restless Leg Syndrome.
I have burning skin which I think now has to do with FMS. I found this link that leads me to believe it maybe true I do have FMS. http://www.fibromyalgia-symptoms.org/fibromyalgia_treatment.html
I think that is because nerves are in over drive, hypersensitive. I hadn't discussed this symptom with the doctor. It was on my list I gave to her the other day.
Jaw pain, possible FMS...I get that coupled with teeth pain..or maybe I grind my teeth in my sleep from pain..
To receive a formal fibromyalgia diagnosis, your doctor must find at least 11 of these 18 tender points of pressure. The 18 trigger point sites used for fibromyalgia diagnosis are (see diagram below):
_ On the fat pad over the knee.
_ On the outside of the hip.
_ At the top of the hip.
_ Over the shoulder blade.
_ On the outer edge of the forearm, directly below the elbow.
_ On the breastbone.
_ On the top of the shoulder toward the back.
_ At the base of the neck in the back.
_ At the base of the skull.
I have GERD, treated with Protonix and after 18 months no cure, just relief, then was treated for Pylori which diminished the GERD.
I gained weight, maybe from the steroids. Stopped, weight remained...Pylori, stomach bug took over and I lost all weight and more. Gained most of it back. My assumption...SLE can slow the metabolic rate down. Does your son have a low rising temperature. Most of us do and all day low. 96.0- 97.9. Hypothyrodism?
I used to get nose ulcers, never mouth. Since being on Plaquenil I've never had them again. I used to get them oh, maybe 4 -6 times a year. I think maybe I had the making of one last year, or it could have been just drying out from Sjogren's. Never amounted to anything terrible like before.
With his mouth sores have him rinse with warm lightly salt water. Avoid acids, sodas and the like..
I have joint pain. It feels like my limbs are being twisted out of the joint like a turkey leg. Especially my finger joints and wrist..and the joints in my feet. Actually they all hurt to some degree...depends on what I did that day or the day before.. or just because Lupus decide it will happen. My muscles at the joints throb with pain and they feel weak, not tired but very weak.
Extreeme fatigue, feels like I walking in mud all day. Yawn, yawnie...
Insomnia or too much sleep...
OTC does not touch my pain joint of muscle..Ultracet skimmed it..for the last three days I am on new medication...Loratab, Flexeril, Mobic and Elavil.
Headaches, I get...usually in my eye sockets or on my crown, the top of my head. Not dull, stabbing...
Are his goosebumps actually from the chills...does he get the chills. My new Rheumatologist asked me do I get the chills..I don't know why she asked.....and with too much in my thoughts I forgot to ask.
Lupus creates a mental fog and so does FMS..forgetfulness, lack of concentration..
I have the malar rash. When not in a flare it is pink, but not my nose. When in a flare, it covers my cheek and my nose. Bumpy, sometimes dry scaly circles...not itchy.
I do not have ears problems.
Saysusie has a wealth of info...on hand. She is the greatest. She knows it inside and out..I am sure she will pop in....
I think you are on the right track in seeing a rheumatologist...stay on it.
SLE is an accumulative disease....you don't need the symptoms all at once...
Hugs for your son and you...
I will include you in my prayers as with all of the family here..
Keep searching for his wellness,
04-04-2008, 05:29 PM
squeazing your head with hugsss Oluwa...
I knew either you or saysusie would come up with the goods :D
04-04-2008, 05:32 PM
ah, that feels so good....ahhhhhhhhhh.
You hugs feel great Susan..
Here is one of mine..squeeze.
04-04-2008, 05:42 PM
I would also like to add, you can still help with his symptoms at home.
Like no processed junk food. Eat fresh.
No sugar foods, or limit the amount. I know kids.
No artificial sweeteners. Splenda is okay.
No alfalfa sprouts.
Maybe ease off on the martial arts for a week or two and see if any bone and muscle pain improvement. Walk instead, perhaps yoga to keep limber.
Set bedtime. Get plenty of rest.
Use SPF when in the sun, try always, even fluorescent lights can ignite a flare. Cover body, arms and legs with clothes.
Wear loose comfortable clothing.
Use ice packs or heat pads as needed for joint relief, depends on if swollen or not.
Hope this helps a bit..
04-04-2008, 05:47 PM
I would also like to add that flares pass....they do! could be a couple of day or a couple of weeks...but they do pass. :)
04-04-2008, 06:30 PM
Worried Mommy: Oh, I'm so sorry to read about your son! Illness is hard enough on adults - but when a child is sick, it's sooo hard. The symptoms you describe certainly sound like some kind of autoimmune disorder. But, as you'll learn from doctors (and probably others here on this forum) these diseases really mimic one another. Diagnosis is sometimes the hardest part. And, for some reason, doctors seem to be particularly slow to diagnose children - maybe they are loathe to label them so young. Stick to your guns, Mom, and keep pressing for an answer. Keep a diary of his symptoms, daily if you can. It may make all the difference in getting the help he needs. I have a friend who has been trying for at least two years to get a solid diagnosis for her child - not yet, but she keeps pressing the doctors. Please stop by here whenever you have questions or just need some support. There are so many helpful and knowledgeable people here.
04-05-2008, 11:41 AM
Oluwa (Sweet Angel) has given you all of the information that I would have given you. It sounds as if your little one is showing symptoms of possibly both Lupus and Fibromyalgia. Oluwa has broken down the symptoms related to each disease for you. Many symptoms of Lupus and FM overlap and many of the treatments are the same. People with Lupus are very likely to have an overlap disease, such as Fibromyalgia, Raynaud's, Gerd, and so on. And persons with one auto-immune disorder are very likely to develop another auto-immune disorder. It is possible that this is what has happened with your precious little one. It may not be one disease that you are looking for, but possibly and overlap of several.
Also, when a person presents with symptoms of more than one "connective-tissue" (Like Lupus, RA, scleroderma, polymyositis, etc.), they are diagnosed as having Mixed Connective Tissue Disease.
If, after reading Oluwa's information, you still have questions, please let us know and we will continue to do all that we can to give you answers to help alleviate some of your fears. You and your son are in my prayers!
Peace and Blessings
04-06-2008, 09:16 AM
Welcome. So sorry you are going through this. As others have said, do keep a journal of your son's symptoms. It can be overwhelming, I know. The journal will help you keep track of things, and it will make your appointment with the rheumy so much better. It is important that the rheumy understand that you are not a "hysterical, overprotective mother." Being informed and remaining calm will help in that regard. I say this NOT because I think you are hysterical and overprotective. Rather, I say this because many of us here have experienced docs who simply do not believe what we are telling them. Lupus can present with many vague symptoms over a long period of time, or it can present in an acute fashion. When it presents vaguely at first, many docs tend to think we are simply complainers. Hypochondriacs. Depressed. Hysterical. Neurotic. Pick any label. We have probably heard it. My point is, you are a wonderful mother to be researching what may be wrong. Don't be afraid (easier said than done, I know). Knowledge is powerful. Keep pressing for answers. You and your son will be in my thoughts and prayers.
sick n tired
04-06-2008, 11:00 PM
Hi Worried mommy,
I believe that you have been given great advice. I also have sle and fibromyalgia, gerd, barretts.
I gained weight, not lost.
But I would like to suggest
that his gain might be muscle. If he has been working out with the martial arts, then he is bound to have made some muscle and muscle is heavier than fat.
I want to second something that mnjodette said in her post. Be sure to stick to your guns. With autoimmune it is hard to get a diagnosis and with only one pediatric rheumy it could be difficult. Keep pushing for some sort of diagnosis or al least help. I have had times with two of my girls to be lulled into complacency. You will be his greatest advocate.
I will keep you and your son in my prayers,
04-07-2008, 01:08 PM
Hello Everyone, and thank you all so much for your wonderful, helpful, insightful replies! You are all priceless.Thank you.
I apologize for not replying sooner. Once the weekend hits and my hubby is home, it makes it more difficult for me to find adequate time to use the computer.I'm sorry.
Thank you, and thank you again for being the first to welcome me to the board. :)
I think I remember reading something about that same crawling disorder too. Morgellons or something like that?
He has the crawling sensation the least frequently, he primarily feels all different types of pain. Most of them are quick and sharp, but some of then last longer.
Lupus is so scary to me. I never knew much about it, but I had a friend who's Mother had Lupus when I was younger, and I remember my friend talking about how awful her mother was feeling. I really never looked into it much until the doctor started mentioning it. It breaks my heart to know what all of you have to deal with. :(
It sounds like Lupus can look like so many other things. At first, when the doctors mentioned MS, I was so scared because it sounded so much like what is going on with my son- but then I see that Lupus or even Fibromyalgia can look a lot like MS. I noticed several people with MS had been dxed with Fibro or Lupus first, and I have seen other post where people with Lupus were suspected to have Fibro or MS prior to their Lupus diagnoses. It sounds like one big, terrible emotional rollercoaster to me. :( My biggest fear is just not figuring out what is going on, and my son not getting the treatment (if any) he needs to make sure he has the best possible outlook.
I have heard the term flare mentioned with several disorders. One of my questions is this, how long can a flare last? This has been going on for months, almost relentlessly except for the relief from the Gabapentin.
I also see you mention rashes and swelling. That is one thing we have not actually seen- swelling. Rashes.. someone else would have to tell me if he has a rash or is just a pinky. He has a rough texture on his upper arms and cheeks, and very pink cheeks. The doctor said the little bumpy rash was nothing to worry about- and he has had it all of his life. He has also had the very pink cheeks all of his life.
Mouth sores- he keeps these. He usually has them several times per month. The doctor told us years ago to mix liquid benedryl and Mylanta to make a mouth rinse- it works wonders! Sometimes he takes a supplement called Zygest, and it helps a little too.
I read that the mouth and nose ulcers associated with Lupus are normally "painless"? is this true? I can't even imagine painless ulcer in the mouth! OUCH- They really always seem so painful!
I read about the sunlight too. I have a question- Even if you do not see any rashes, or see any rashes that get worse, can you have an internal reaction to the sunlight- like more physical pain?
Thank you again.
Thank you for your reply. Thank you for mentioning Fibromyalgia, that is one of the things I meant to bring up in my first post. As we left the doctors office last week, the Neurologist told us she had been on the phone with the Rheumo. and he told her this sounds like it could possibly be Fibromyalgia, but he will not know more until he actually meets our son.
A dx of Fibro would be such a relief in so many ways, but at the same time, I think the fear of something more serious would always be there. Especially the fear that we might be neglecting something that needs early treatment. (Not that Fibro is not serious, but I guess I mean something with major organ involvement.)
Reading about Fibro, I see a lot that sounds like my son, and a lot that does not. I have never seen his as being tired or fatigued except when he is having a lot of pain. He has always been like a little tornado that never slows down, lol. However, over the weekend during one particularly bad set of pain, I told him he looked tired. He said "I am tired Mom, so tired, this has taken all of my energy." It broke my heart. I have watched for signs of him slowing down, and just have not seen many.
Today, I approached the subject of tiredness again, and he says he is only a little tired some of the time, that I just asked him at a bad time yesterday.I'll be paying attention.
My son has had GERD since he was born. His endoscope last year found open sores, in spite of his medicine. He WAS doing as well as he has ever done, using Nexium, until all of this started. When this started, the reflux and bladder incontinence/leakage got worse too.
With the burning skin.. when my son has this, it will be a patch of skin anywhere from about the size of a dime to the size of a dinner plate. It will burn pretty bad too- no redness, no swelling, just pain- the burning sensations usually pass quickly, like under a minute.
I did not mention this, and it is probably not related, but he has also dealt with burning mouth issues all of his life. Things that do not burn anyone else's mouth sets him on fire- and not even consistently. If it burns today,it might be okay tomorrow. We have talked to doctors and dentists about it. They all shrug it off and say it looks like he is eating fine- which was not actually the point of us asking, you know? lol.
Since all of this started, he has complained of itching in his mouth fairly often, and a bad flavor that does not go away with brushing or eating, but does come and go on it's on. It has been more recent, so I thought it could even be the Gabapentin.
Jaw pain and tooth pain, he has a LOT.It's all of his teeth, sometimes at once, sometimes at different times, usually a stabbing, burning or shocking pain that seems to be in the roots. The jaw pain is one of the few pains that he has that last longer.It can last anywhere from several minutes, to several hours.
The fibromyalgia chart is so interesting! I had no idea! I tried to test some of these points on my little boy, but I was afraid to press to hard and cause him and extra pain. I looked it up, and it said the pressure to use is about the amount that makes the fingernail bed start to blanche (turn white).
Pylori- I notice you said being treated for this really helped with the reflux. How did they check for this? They did a tissue biopsy when they did his endo. procedure, I had assumed they would find any sign of pylori that way. They were checking for several things, pre-cancer cells, allergic processes and such. They did not find anything with the biopsy.Thank goodness.
I am not sure about my sons temp. He seems to overheat easily since all of this started, and he gets a lot worse when he overheats.
His weight gain makes him look so puffy... I don't mean that in an insulting way, it's just that around the face/eyes/neck, he looks almost fluid filled. :(
He was tested for hypothyroidism, and his numbers were a teeny bit high, but the doctor and Neuro felt like it was not enough to treat, but they do plan to monitor his levels.
Ulcers- in the mouth, Nick has them monthly at the very least, he has at least one what seems like most of the time, and sometimes two. His are painful. I mentioned it earlier, but his doctor told us to mix liquid benedryl and mylanta, rinse and spit many times daily. It works really well to calm the inflammation and let it heal faster.
Joints- First of all- that sounds terrible! I am so sorry for the pain you are feeling!
It almost seems like a lot of his pain is right above or below the joints rather than IN them.He has had wrist and finger/knuckle pain that seems to be in the joints. His hands have been really bothering him lately. In his knees and elbows, it seems to be right below the joints? It hurts a lot, and he often uses the term twisting too- and crushing.
His right leg tends to get "tired" and he says it "does not cooperate" and he will end up with a limp, or kind of semi-dragging his foot, even when there is not actual pain there, due to this "tiredness.".
Insomnia- My son was born unable to sleep. I always felt it was partially due to the reflux. He would literally spill out if you laid him down, so we sat up in a recliner to sleep until he was almost 2 years old, then he was propped on stacks of body pillows, which is still how he sleeps.
When he "sleeps" it's really just his body being still for a little while- his mind races. He calls out, talks, fidgets, dreams. He has a great deal of trouble falling asleep, and even more trouble staying asleep. Very honestly, over the years our whole family has evolved to live on his schedule (this is NOT a spoiled kid thing, trust me, this is real and a real necessity for us.) We homeschool and do our grocery shopping in the middle of the night. It works okay for us, but I still wish he could really rest.
The Neurologist has him taking Melatonin. The first day, he almost seemed to fall asleep a little easier, then nothing else since. She wants us to go up to 2 pills a night in about a week. I am not so sure. It has seemed to have caused a couple of sleep paralysis episodes, which tend to scare him.
As you said OTC has not helped him at all. Nothing. Not even a tiny bit. The Gabapentin (Neurontin) is all that has really helped at all.
Headaches- he was having literally 100-200+ per day before the gabapentin- yes, I logged them all. Now he has less than 10-20 per day. They are in the right side 90% of the time, and are always 1-20 seconds, SHARP fast pains.
The goosebumps do not come from chills, or anything else- just out of the blue, then they are gone. This is one of his least frequent sensations.
Mental fog- maybe, but only a tiny bit. It seems to be short term memory only, and only a very little- maybe the Gabapentin.
Cheeks- Nick's cheeks have a slight bumpiness to them along with their pinkness, but the doctor said it's just Keratosis Pilaris.They are fine little skin colored, rough textured bumps that one would think were from not washing his face- but he does wash, lol.
The ear problems are not "real"? can I say it like that? They are real pains, but not like an ear infection (it's been checked over and over.) They are just quick stabbing pains down in the ears.
Thank you so much for all of your help and your warm wishes.
**** I am working on more replies, but my son needs me for a little while. I will be back shortly, but I wanted to go ahead and post these now.*** Thank you all.
sick n tired
04-07-2008, 08:32 PM
Hi Worried mommy,
I have had ear pains since I was a little girl. My mom would check(she is a nurse) or later to see a doctor and they could find no sign of an ear infection. I have been diagnosed with TMJ. This is a problem in the jaw and when I am at my most uncomfortable I feel it in my ears...it feels like the inner ear...tmj can be a symptom of fibromyalgia, too.
The other thing that was interesting is that the neurologist has him taking Melatonin. It is my understanding that melatonan is a hormone. If your body is missing this hormone or there is not enough then it works admirably, but when it is replenished then it might stop for it is not needed. so perhaps that is why it is not working on your son.
I do believe that you can have a reaction to the sun without the rashes. I do not have many rashes, but I am not able to function for quite a while after being in the sun.
I hope that you are able to get the answers you need.
04-08-2008, 01:20 AM
:) Hi Worried_Mommy
I've read that some people are very much affected by sunlight. More than just outward signs. It depends on the person.
Flares can last different lengths of time. I always just assumed that it depends on why the immune system is being snitty and what part or parts of the body it is attacking. Last yr I was misserable for 6 months straight. Just when I thought I couldn't take any more my doctor put me on arthrotec 75 and my swelling was reduced by half.
Many of my joints are full of arthritis. The curious bit is the arthritis affected so many joints all at the same time. Some times it's hard to tell what's a flare and what's normal "your just sick" stuff.
The rash I have showed up when I was 18 or 19 yrs old. It's not bumpy but smooth red to pick areas on either side of my nose. My nose is red also and on either side of my chin.
My doctor first treated it with a cortisone cream. Calmed it down but didn't really ever clear it up. It's always there...sometimes faded some times bright. Thank goodness for makeup and makeup with UV protection in it :)
A word on sunblisters....I really dont recommend them....they are no fun what so ever and have a tendence to ruin a good time. It's a double whammy so make sure your sun likes hats :)
Most of the medications we take for lupus are going to make us even MORE sensative to sunlight. This is something I have to keep in mind for myself.
I've never been a sun bather but I do love my garden. So job one is going to be to get a good gardening hat that covers my whole head with shade. front and back of the neck.
I want to wish you the best of luck getting your son to wear a hat that covers both! He'll probably be happiest with a baseball cap.
04-11-2008, 08:26 AM
Worried Mommy, you are so great to keep such good track of your son's symptoms. It's interesting that the pain he has is not in his joints but near the joints. That's consistent with Fibromyalgia, too, I think.
I don't have classic sun sensitivity (the skin or rash stuff) but if I'm in the sun for too long, my symptoms often get worse...can cause a flare. It's best not to let your son be in the sun without protection as long as there is some suspicion of autoimmune disease of some kind. That's a tough one with kids...hats, sunscreen, long sleeves and pants. They just want to be out there with other kids - unrestricted. Your little guy sounds like a real trooper, though. Must have good parents! :)
I hope you get answers soon. Not knowing is so hard, isn't it?
04-11-2008, 09:36 AM
Hi Worried Mommy,
Gee where have I been. Sorry, that it took a spell to return a reply. Lupus affecting my mind and body lately. I forgot where I had been in the forum.
The H. Pylori was tested through a blood sample.
Itching in the mouth, possible..medicines. I know when I take certain pain pills like Percocet, Ultracet, all my orifices itch. All of them. Ears too. Mouth, just seemed parched. So, I had to dose with an anti-histamine with it. Now I am on Loratb...and no more itching..or edema.
I too get teeth pain..wasn't certain if it was from grinding my teeth at night from pain, or clenching them during the day from pain and the medicine. I haven't had a bout of that in a spell. Jaw would hurt too, but that has been far and few.
Is your son on steroids? That could attribute to the puffy face. I would get puffy faced, fingers, and legs from my previous pain pills.
Has your son done a sleep study?
Sometimes when tests, blood and etc, come in a the slightly elevated, i.e, low positive could be high for some one, as in their symptoms. Just like a tiny bit of increase in TSH, for thyroids..it could make a huge difference between normal weight and overweight from my reads..
Is he on any other medicines beside Gapapentin? Sometimes this medicine can cause lack of concentration, memory recall. I was on it for nerve pain.
They can do a biopsy of the facial rash..with that they you a cookie type instrument, like a punch out oh, about the size of a pencil eraser...unless there is another approach anyone else knows of. Maybe a scraping?
Headaches...very common in Lupus, FMS...
Has a neurologist exam why his leg doesn't cooperate?
I have both pains, in the joint and at the tendons connected to the joint..FMS or Lupus or both?
Are the pain in the joints in pairs. Two elbows and etc...Rheumatoid, maybe?
Ah, so many diseases mimic one another...have they ruled any out? Are they treating any of his other symptoms besides the pain?
A urologist for the incontinence?
Are his eyes dry, gritty? Sjogrens Syndrome?
I would press your doctors to find the answer and ask why they are not treating the symptoms? They aren't gaffing you off are they?
Just some ideas...
Your son and you are in my thoughts and prayers...
sick n tired
04-11-2008, 12:03 PM
Hey Worried Mommy,
How goes it, today? I hope that your little one is having a totally uneventful, painfree day.
I have an idea about hats...I know that little boys don't mind to wear the baseball hats, but then there is the back of his neck.
When I was a teacher and councelor there was a boy who came to camp. He grew up in the church and I have had the privelege of watching Eric grow up.
Eric had lupus but his parents still allowed him to come to camp. He used to wear a ball cap with cloth sewed all around the back....he had a great sense of humor...when he went swimming he wore the hat but he tied a towel around his head and was know all through camp as
The sheik of Eriek....
04-11-2008, 02:34 PM
Hey, Karen - that's a great suggestion for Worried Mommy. In fact, I saw kids all over Hawaii with hats just like that! I'll bet you can find them on line somewhere. Good thinking!
sick n tired
04-12-2008, 09:56 PM
:) Oh BtW...I like your avatar...the cheerleader is cute.
04-13-2008, 10:23 AM
Thanks, Karen - isn't that cheerleader a little sweetie? She makes me smile every time I see her....I think I'll keep her a while!
sick n tired
04-13-2008, 12:37 PM
She is a sweetie, I am unable to get animated things to stay.
04-13-2008, 04:03 PM
With that darling little Lexie as your avatar, I don't think you should be worrying about putting anything else in that spot. She's too precious for words!
sick n tired
04-13-2008, 04:07 PM
No I agree, Jody. That was before. I was hardpressed to be able to download anything. I am really computer illiterate. :lol:
05-08-2008, 11:06 PM
I keep typing a reply and losing it, the first time I really had included a web address, I was hoping for opinions about my sons rash.The other times, I had not included a web address, but it dropped the text anyhow. Maybe this time it will work.
My first reply was very long, I am afraid I have to post the short version now, lol. Sorry.
Thank you all so much for your help and advice. We are still trying to figure out what is going on here.His rheumatologist appt. is on the 29th, so not too much longer now, but it still feels like forever.
He HAS had about 3 good days in a row. He had more pains late those nights, but the days were great- he had the least pain he has had in months. :) I hope he is heading towards a recovery, but I am trying not to count my chickens just yet. He has had good days before followed by a hard crash. Maybe this time... :)
05-09-2008, 07:06 AM
Hi, Worried Mommy. Sorry you've had trouble with your posts - maybe there are a few 'glitches' still - it is the first day back, after all. I'm happy to know that your son is doing better and hope the doctor has answers for you.
05-10-2008, 03:27 AM
Thank you. :)
I am glad the forum is back up and running, I thought it might just be my PC.
05-14-2008, 10:03 PM
The past few days my son has been having new symptoms- very achy arms and legs that get "stiff" when he sits too long, or after sleeping. We've been trying to think of anything he has done that could cause soreness, but he says it feels like some of his other pain. One leg is especially painful. :(
A couple of weeks ago he developed a persist ant dry cough that is only there when the Gabapentin starts to wear off. He says he can feel something in his throat- when the new dose of Gabapentin kicks in- it's all gone.
The We've been on the phone with his Neurologist this week, we are going up on the Gabapentin again to see if we can get some of this new pain under control.
He also keeps "crashing" into a deeply depressed state that really concerns me. He will have a lot of pain along with an overwhelming sadness that is just almost more than he can bear. It comes in an instant without any warning- then is gone just as quickly. It lasts a few minutes, up to almost an hour. Never longer so far. It almost hurts worse to see the sadness than it does to see the actual pain. He has such a beautiful, shine temperament- it's not like him at all to feel so sad. :cry:
I am sorry to whine about it here, I know everyone has their own problems. I am just so worried right now. I don't even know what to think anymore.
05-15-2008, 07:51 AM
Oh worried Mommy. I am so sorry that your sweet Nick is having to go thru this. I was diagnosed in Nov. with lupus . I had been having pain increasing for two weeks to a month before the diagnosis. However looking back there are symptoms that were happening thru the years that now I see are lupus symptoms.
Alot of what you are describing sounds like the symptoms I am having. I feel so bad for Nick to be going thru this. It is hard on me must be more difficult on a 9y/o.
Rashes and sun. My newest symptom is sun sensitivity. I sat in the shade for ten minutes. I was pink on my arms, face and chest. I was wearing a tanktop. Earlier I had gotten sun exposure on my shoulders and now have a full blown very itchy, bumpy
rash on my back. I see the bumps starting to develop on my arms and even two or three on my cheek. So itchy. Anyway all this to say that I found a company online that sells SPF clothing. I bought a hat and a lt.weight hoody for myself. This company Coolibar.com has clothes for kids and they sell those caps like they were talking about. When my children were little I used hats like those for them. There are lots of SPF clothing and hat companies online. Google SPF Clothing and find a treasure trove of them.
I am praying for you and Nick. Never feel like you cant come here and whine, complain even throw a temper tantrum. We have all been there.
05-15-2008, 02:51 PM
Worried Mommy, one thing you DON'T have to worry about is sharing what's happening on this board. Yes, we all have our problems, but that's why we are here...to share with others, to learn from each other, to get-and-give support.
I'm so sorry your dear young son is struggling. A sudden on-set of depression that comes and goes must be so troubling for you. Have you spoken to his doctor about that? Chronic pain can be so debilitating - physically and mentally, for adults. I'm sure it's the same in children - if not worse.
Does he see a pediatric rheumatologist? There aren't a lot of them around, in most communities, but if you can find one that will take your son as a patient, it might be worth the visit.
You're a good 'mommy' to be so concerned about him. There are more and more strides being made all the time in treatments and drugs. I hope and pray there are some answers coming that will make a difference for your son.
05-16-2008, 02:08 AM
Thank you everyone.
I have not spoken to his Neurologist about the depression yet. I know I should. I almost hesitate to call the Neuro. because I would rather talk to the Rheum. about it when we get to see him. I have this really bad feeling like the Neuro and Pediatrician just do not "get it" at this point.
If the Rheum. can't help, I plan on changing doctors. We need someone who is listening.
Thank you all so much. I hope and pray this does not turn out to be Lupus. My gut feeling is either they just will not know now, and whatever this is will go undiagnosed for a very long time, OR they will call it Fibro, and then years later it could turn out to be something worse that needed early treatment.
I really appreciate every single one of you. Thank you all for taking the time to help me sort this all out.
05-16-2008, 09:05 PM
I wanted to add a photo of his rash. Does anyone feel like this looks more like regular pinkness or maybe rosacea? I feel like it needs to be mentioned to the Rheum. since he probably will not see it in the office. I am planning to take photos when we go.
It tends to be a specific shape, almost squared off, and in a specific area. It's worse when he feels bad, and almost non-existant when he feels his very best. It comes on fast, and lasts minutes, hours, or days just depending on how he is doing. It is NOT on his nose.
His coloring on a normal, good day:
sick n tired
05-17-2008, 06:28 AM
Awww...he is cute:) I like the last picture the best.
I have a daughter who has that kind of "rash".
She has been very ill and is rounded the health corner just lately. When she is ill or stressed hers is more visible. I don't think that it is the same as the typical butterfly, but by all means tell the doc. He will have seen it before.
05-17-2008, 07:16 AM
sick n tired- First of all, I am very, very sorry that your daughter has been so sick. I really hope things are looking up and she will feel better soon. Is that your little girl in your avatar? She is beautiful.
Scondly- thank you so much for your reply. I really wanted to hear someone say it does not look like the butterfly rash to them. I understand I need to talk to the doctor, and see what he says, but your opinion means a lot to me and gives me a little comfort while we wait to see.Thank you.
sick n tired
05-17-2008, 07:21 AM
No the pix is of my grandbaby. She was born 7 weeks ago and is my first grandchild. The daughter that I was talking about is 18. She has been very ill. Not so now...she is just recouping from surgery, now.
05-17-2008, 12:38 PM
Worried Mommy, butterfly rashes don't always look the same. Your son's rash doesn't look like the classic pictures you see of butterfly rashes. But it doesn't look like his 'normal' coloring either. Absolutely you should mention it to his rheumatologist, and bring the pics. That's a very good idea.
I read in your other post about your little girl's palms - it's hard when little one's have health problems! Hopefully, it's just a simple skin condition, not indicative of anything more serious. It's frustrating when a symptom goes away just about the time you go take her to the doctor, huh? It's like taking your car to the mechanic - as soon as you do, the 'funny noise' goes away! I hope BOTH of your children do well, Worried Mommy.
05-19-2008, 04:35 PM
Have you noticed if is in any correlation when he doses with his medicine, regarding the bouts of depression?
Most of the medicine we take say depression maybe a side effect...
Does Nick's rash ever go under the nose? Does it feel warm? Does is appear more intense with certain foods..spicy, hot...change in outside temperature. Frequent flushing? Can you see visible red lines, capillaries? Does Nick seem to have facial swelling, retention? If so, maybe rosacea.
From the photo of Nick it looks like the pink goes under his jaw line in the first picture..does it..maybe not malar...
I have the malar rash. It goes over my nose, never under nor in the facial folds around my mouth or in the cracks of my nose. When I am in a flare it reddens, deep red. Never itches. When I am at "my norm" it is pink, nose and cheeks too. Just imagine how the sun would burn a face from up above. It misses whatever is cover by a shadow, under the nose, the folds or right under your eyes....
When I am in the sun, it reddens too. Fluorescent lights ignite it too...
Ask a dermatologist, they would recognize rosacea and a Rheumatologist should recognize malar rash. I think I spoke of it earlier...when a dermatologist does a biopsy they use a punch out. I would have them diagnose it visually first...
In the Web link forum..I posted a few sites regarding rashes. Warning some are graphic, so be prepared...
I will pray for Nick...
06-02-2008, 08:34 PM
I am sorry it has taken me a while to reply but I wanted to update you on Nick.
Nicky had several really bad days in a row. Lots of pain, he was having a really hard time. He ended up either missing class all together or else trying to go to class, and leaving in pain. His martial arts are half of what has gotten him through this, so it was a real blow to him to have to miss them.
We kept telling him to hang in there, the Rheumatologist might be the doctor that could help.
He was not.
The Rheumatologist was one of the most hateful, rude, mean-spirited people I have ever met. I feel so sorry for any child, or any parent that has to deal with that man. He is just terrible. Rude, arrogant. Awful. I guess since Pediatric Rheumatologist are scarce, he can get away with acting like that.
We saw the RPN first, and she seemed to really dislike Nick. Nicky has a quiet awkwardness about him that we find charming, lol, but people who are not comfortable with themselves often seem to have trouble being around him. I guess that was the case here.
The RPN misquoted us, and put words in our mouths over and over again- often writing things down wrong, and questioning each and every thing we said. For example, when we were talking about the limp that comes and goes, we said "When he is limping, he says his leg hurts and feels tired- it feels heavy and weak to him." And she snapped off "He feels tired and weak all of the time? You should have mentioned that." Everything we said- or tried to say, got turned around like that.
She left and updated the doctor, filling him in on the details.
When the doctor came in, he rudely and sarcastically snapped off "What exactly do you people expect out of today?" He referred to us as "you people" for most of the visit.
We told him we hoped they could help us figure out what was going on with Nick, and what, if anything, we needed to do to help him feel better.
He barely looked Nick over, and then started exclaiming "I don't know what this is, but it is NOT Rheumatological- I don't know what it is, but it is NOT Lupus, it is NOT MS and it is NO arthritis. It is NOT Rheumatological.- Why, exactly did you come here?"
We were shocked, but we tried to explain, we did not ASK to come there, the Neurologist did not know what was going on, and she apparently felt like it was the next logical step.
It would have been acceptable for him to end the conversation on the "I don't know what this is." note. We did find it very strange that he had no interest in doing any bloodwork or anything. We had understood that due to the low positive ANA Titer, he would need more bloodwork. I guess not.
But he did not stop there..
He went on a hateful little rant saying how he was certain Nick was "acting this way" for "secondary gain" and he was sure we were rewarding him for the "behavior. (Nick was "behaving" beautifully, by the way, calm, sweet, quiet, well mannered. So he was not talking about Nicky's general behavior)
He started spouting that Nick needs more exercise and a good psychiatrist.
I interrupted him to explain that Nick was getting 2-3 hours of exercise 5 days a week before the problems started, but it's real had to do Karate when your leg goes out on you halfway through class. I told him he still usually goes 5 days a week, and does his very best to stay in class as long as he can. Sometimes that's 10 minutes, sometimes an hour, and sometimes he just can't get out there at all- but he TRIES.
THEN "Mr.I Don't Know What this is." Handed us a paper where he had ALREADY written a diagnoses, along with papers that were an "information packet." The information did not sound much like what Nick has been dealing with.It sounded made up, and had what we consider to be almost borderline abusive treatments.
Then he gleefully announces that a friend and former co-worker wrote the information papers, and that he actually came to the hospital and gave a lecture on the condition last week! Call us paranoid, but we VERY honestly believe this man diagnosed Nicky with this to somehow help his friend- maybe their research money depends on how many kids get diagnosed with it or something? Maybe I am just bitter about the nasty attitude we had to deal with, but at any rate, no part of me thinks this is what Nick has OR that it's "all in his head" or for "secondary gain".
After the appointment, Nick asked us if they were going to help him. We had to tell him no, but we were not giving up.
Nick seemed deflated. He seemed to lose hope. He stopped trying to deal with the pain and just gave in to it every time. He was crying often and easily there for a couple of days.
We told him we were NOT giving up, and neither was he.
We took him to a Chiropractor today...
After reading the list of Nick's symptoms, and listening to Nicky and to us, he said he was certain it would have to be a problem in the T1 area of the spine.
He pressed around on Nick's spine, and found that Nick jerked away and cried out in pain at T2 and T1. He did not press hard, and Nick's reaction was huge! He called this the axis, it's where his head is connected to his spine.
Why has no other doctor checked this if it was that obvious? It makes me want to abandon "regular" doctors all together.
He looked at our timeline, and asked about any injuries or car accidents in late Nov. or early Dec.
We told him about a Jujitsu injury that we had also mentioned to the Neuro and Rheum. Neither one of them cared to hear about it, but the Chiropractor was very interested.
We never did think the injury was related for sure or anything, we just have everything we can remember ever happening to Nick all written down, looking for anything that might help.
On around Dec. 5, Nick was choked in Jujitsu. His arms were trapped under him and he was unable to tap-out, so things went pretty bad. Nick was face down on the floor- his grappling partner was sitting on his back, had his forearm under Nick's throat and was pulling up and back on Nick's neck and head in an unnatural way cutting off his air supply as well as causing pain.
When someone realized something was wrong, and we got Nick up, his lips were blue tinged and his chin was purplish. He had small blood vessels showing on his face, and his eyes were a bit bloodshot. At first, he did not do or say anything, then he kind of hyperventilated- then he started crying really hard. It scared him, and embarrassed him.
Once he stopped crying, he was okay. He looked rough, but he felt okay other than he did have a sore neck for about a week.
We told the doctor about it. He said even though the symptoms did not get really bad till Feb. 1, he believes that injury is what caused all of this. He said there seemed to be too much going on that for it not to have been caused by trauma, and that is the only real trauma he has had.
Nick's first headache was around Dec. 14 best I remeber. It was the only one that was similar to a migraine. Shortly after, the other short, stabbing headaches and pains started, all in full force by the first week of Feb.
The chiropractor said almost every symptom could be explained by the injury.
The doctor did some adjustments using a machine call Pro-Adjust. It was really neat to watch. It hurt at first, but gradually became less painful. Nick did not mind because he knows this may finally be the way to get better.
Nick is really sore tonight! He can tell the difference between soreness and nerve pain, and he said this is just regular soreness. The doctor told us to keep a cold pack on it for 20 min. at a time, and to do it at the very least 5-6 times tonight. We are doing what he says.
Nick will go back Wed. and Friday for more adjustments. The doctor made it sound like we might have him just about pain free in around 3 weeks, but he said we should see a lot of improvement after one week.
Nick's rules for this week are no Jujitsu or Karate, no dairy products, and to rest up and come for his treatments. I think we can handle all of that.
We are so excited to have a doctor who listens, cares, and pays attention. We feel VERY optimistic about all of this not just because of what the doctor said, but because of what we saw with our own eyes.
I hope we never have a true need to come back to this board- but I can't promise I will not check in from time to time. You have all been so wonderful. There is much comfort and information here. Thank you all for your help.
Pretti in Pink
06-03-2008, 04:16 AM
You know we always rant and rave on here about incompentent, uncompassionate doctors and the awful way we leave feeling but there's an annodote to that and it is the kind of doctors that you found for Nick in the end. It sounds like things might be ended on the right track and I am elated for him. It's hard enought for us adults to handle this but for children to have to face this type of rejection is terrible.
06-03-2008, 06:02 AM
My, my ..that must have been awful for Nick, for you. Such neglect emotionally, actually a form of authority, arrogance abuse. I would gather the nurse was incompetent and was just trying to cover her hinder...
If you every find yourself in that position again, God forbid...but stand your ground. Sometimes being an adult in a doctors office we shrink and become vulnerable. I know I do, I did. It is hard sometimes conversing with a doctor when we do not know what we are dealing with, so we become defensive and rightfully so.
So, worry not about how you reacted he was and she was an arse. Shame on them both, you never attack, mildly or bold... the sick.
I am truly happy someone is hearing you, Nick. It is such a relief he and you must feel. It is hard for children to articulate their pain...hells I still do. I use to say it felt like small bubbles were popping inside my butt muscles...it was small spasms. Like rapid fire popping bubbles. I had a wonderful patient doctor in Seattle. She was more patient when I was not.
I've had several spine surgeries and currently have a herniated disk, bulging disk, disk degenerative disease in the thoracic area...T4, T5 and T6. I had an anterior cervical spine fusion at C5 - C6. And two failed surgeries on L5 - S1.
With having much experience in spine involvement, manipulation, chiropractors, masseuses, physical therapy, acupuncture..surgeries I have one suggestion if hasn't been done already. With the utmost suggestion, get an MRI referral to see actually what has happened in there. An x-ray cannot reveal any nerve, spinal cord that is being impeded. It is always, always recommended to have this done before any type of manipulation to prevent further damage.
Regarding insurance, I know a lot of healthcare policies changed, first check if there is a difference is your co-insurance pay if you have that fee between having MRI's done at a spine facility or a hospital. Mine is a 5% difference, which can add to several hundreds of dollars difference, with a facility being the lesser...
It is absolutely great he is on this way to feeling better and maybe you can change your moniker to Happy Momma. Soon he will be the active, with crazy fun like all children should be. Pain free...
Yes, and do stop by often...with or without IT you are family. We would loved to know how life goes, Nick is progressing. I am so happy IT is not the diagnose. I am elated.
Know you can find comfort in anything here...we chat up about anything and everything. You are welcome...see you soon.
06-03-2008, 04:04 PM
Worried Mommy, I just cringed at the story about the pediatric rheumatologist. The funny thing is, I've heard a similar story about a pediatric rheumatologist is the town I live in!! What are the chances of that? I can't imagine treating a child - and a child's concerned parents - with such blantant disregard for their feelings and needs. I wonder if you should file a complaint with the medical board in your state? This sounds like pretty abusive behavior to me. You might not get any satisfaction other than the knowledge that you told someone above him, but maybe that will be enough.
I'm so glad to hear you've found someone to listen and have some potential for helping Nick. I really, really hope this does the trick for him. Please keep us posted - we'll all want to know how Nick is doing.
06-03-2008, 06:07 PM
I wish I could recommend my rheumy. I was there one day and when he came in to see me he was smiling ear to ear and I looked at him quesioningly and he said, "I LOVE my job!" and when I asked why he said, "There's a little boy in there (the next examination room) with Juevenile RA and I just gave him a Rx and in 2 weeks when he comes back he is going to be feeling so much better".
Now that's the kind of doctor I'd want to take my child to see. Shame on that fellow you saw! Can you report his behavior to a regulartory board of some sort?
06-05-2008, 02:46 PM
I wish there were some way that we could reverse situations with some of these doctors, to see how well they handle being demeaned, dismissed, and abused. He was totally abusive and rude and it is unbelievable to me how prejudiced everyone in that office appeared to be. Poor Nick was pre-judged and condemned merely because of his size. Everyone made asinine assumptions about him and treated him accordingly. There should be some way that the doctor and his nurse could be reported....
But, on the good side, I am so happy to hear that someone is taking his symptoms seriously and is doing something to give him relief and to help him. I am so happy that you NEVER GAVE UP! I wish the very best for you and for Nick and I pray that he continues to improve!
You are always welcome here, so don't be a stranger! Besides, you must keep up advised about how he is doing!
Peace and Blessings
12-09-2008, 07:45 PM
Hello everyone. I hope you are all doing well and looking forward to the Holidays.
I wanted to post an update on my son.
Nicky never did recieve a DX of any kind.
Seeing the chiro, he gradually improved until the point of seeming almost completely well by Sept. :) He was able to go off of the Gabapentin! YAY!
However, as we get closer to the date the problems started, we are seeing a bit of a flare up of some of the symptoms- the squeezing around his tummy, a "tall tight boot" feeling on one leg, some headaches, and once in a while, his cheeks getting pink. Also, his reflux and leaking urine have been acting up a bit more again. He has also kept ulcers in his mouth, pretty consistantly one after another for the past month or so.
Nixky DOES NOT know that this is close to when everything started. This makes me really wonder if this could be enviromental.
He is not really bad yet- and hopefully he will not get that way. Right now it's kind of an annoyance, and a reminder of the way things were for all those months. For now, we are concentrating on being grateful that he is doing so well. :) For while there, I was not sure if he would ever be okay. Now I know he can be just fine- even if he still has a few aches and pains from time to time.
In other news..
My daughter has me concerned.
For several months she has been having a low grade fever off and on, near daily regular headaches and once a month for the past 3-4 monhts, she is running a high fever and having lots of full scale migraines- this always starts on a day she feels awesome, and starts up right after a nap. Often she will have no appetite for a day or two before it starts.
Each time she has gone to the doctor during the high fever/ migraine episodes, she has been found to have lots of protien in her urine as well as some blood. Two times she had a UTI too, but the other times, just the protien. Last time it was 3+ protien and blood, but no infection.
She has seen a urologist, had a VCUG and an ultrasound, and everything looks fine, so that's good, but as a Mommy, I still worry.
Today is a feverish headachy day, and she is awake and needing me to cuddle her, so I better go for now.
Thanks for reading the update. Again, I hope everyone is feeling great. Thanks for the support you have all been in the past.
12-11-2008, 04:26 AM
I am glad to hear that Nicky had some major improvement and was able to take such a wonderful trip. Now that it appears that he is flaring again, do you think that they will put him back on the treatment that worked or is he still taking those meds?
I hope that doctors are able to find the cause of your daughters issues. Protein leak in our disease usually indicates kidney involvement. But you say that her tests were fine. I do hope that they continue to try to find a reason and/or connection for all of her symptoms.
It was so good to hear from you, it's been a while.
Peace and Blessings