I want to welcome you to WHL. It is a great place to get information right from the source - those that are dealing with AI diseases - and to vent your frustrations, too.
I also read your entire post, and felt your anger and frustration. It's frustrating for all of us to deal with the medical community, but I know all too well how very painful it is to deal with them when you have a sick child. As others have said, you've done a great job of advocating for your child.
One of my earliest symptoms were those blisters, usually on my arms or hands. They disappeared completely when I was on a combination of Plaquinil and Methotrexate. Now that the MTX has been removed, they are back, but mostly on my trunk and legs, and are fairly mild. My sores start out as disc-shaped red blotches, then start swelling up and getting flaky. They don't itch, but are somewhat aggravating. Are your son's blisters like that? I've found that most of the rheumys are rather dismissive of these things.
Another thing that I have a rough time getting the docs to pay attention to are the neurological symptoms ( numbness in the toes and legs, spastic muscles, etc.). They try to dismiss those symptoms, too. If you research, you will find that several of the AI diseases can have neurological manifestations, including CNS Lupus and Sjogren's.
I really hate to see a child so young having these symptoms. Keep pushing for answers, Momma. Eventually, a good doc should be able to get him onto the right combination of meds to give him a normal life. There are several young people here who are dealing with it and going to high school or college. Once you both learn how to deal with his issues, you can help to keep him on the right track.
Good luck to you, and keep us informed.
Ok, I read all of your post... and second post.. but not everyone elses responses... and here is why..
I have a 6 year old daughter with all the same symptoms.
Now... before I start discussing her, there are some things I would like to have you think about.
1. Your son's hospital episode, while traumatic, is likely an unrelated result of something underlying. It sounds like your son had a period of very little immunity where he picked up a bunch of very nasty things all in one go. Which could have killed him. Good work on standing up for your son and getting him in there regardless. So now you need to look at why he had a lowered immunity. Everything he experienced in that very sick period, is likely to have been a symptom of the things he picked up because of lowered immunity. Even now, some symptoms may very well be a result of a poor immune system and not a direct symptom of his underlying illness.
2. Has your son had a CT scan or MRI of his brain?
3. Have his hormone levels been checked, specifically cortisol?
Now here is why...
My daughter has the mid section of her brain missing. She appears in every aspect to be a normal child, intelligent, sweet, funny, active etc. But because of this center part missing, her hormone levels can be affected.
She is tall and lanky and goes through periods of fussy eating and other periods where she eats the house down. She typically EATS MORE THAN ME!
She has blisters on her hands, they arent itchy, but they hurt her. She will wake up in the middle of the night groaning that her hands hurt.
She gets joint pain.
She gets a terribly sore abdomen.
She vomits frequently and randomly but pretty much only at night.
She is always thirsty at night which is getting worse and has even developed into bed wetting occasionally.
She is always sick... when she gets a cold or something, she is coughing for months.
We are in the process of getting testing done. We literally just came back from flying to the capital city to have her see a specialist pediatric endocrinologist. We go back in a month to have some more running tests done. Her cortisol levels are slightly low, they will do the blood tests and see if putting her on a daily cortisol tablet will help.
I have lupus and hashimotos and am undergoing tests for something neurological that is going on. I think my daughter will end up with lupus, but I really do feel she is only in the early stages that I was when I was a child as well. Right now, what seems to be her problem is a lack of cortisol.
This seems very simple, but it is important. Cortisol controls stress and helps your body heal when you are sick. Get your boys checked out, because he has identical symptoms to be daughter. Autoimmune conditions can also attack glands responsible for hormone regulation. My hashimotos is a result of autoimmune antibodies attacking my thyroid.
Feel free to PM me, I would love to discuss this with you as my daughter is still undergoing testing to narrow it down, we may be able to help each other : )
Wow. I really don't know what to say. The kind words and support from you all are so overwhelming. As I have been reading through the responses, I have felt as though some weight has been lifted off of my shoulders because while I have support from family and friends, none of them can truly comprehend what my son is going through.
I did not intend for it to take this long for me to respond. My son had a rough night last night and a really horrible day today. Since they took him off of the naproxen 2 days ago, I honestly had not realized how much it had been helping him. He has been on the verge of tears since yesterday and very irritable. The smallest thing about sends him over the edge with crying. He has not had a day this bad in a couple of months. I don't know if it was because the med. was helping the pain/inflammation, and now it's more intense since it has worn off, or what. I picked up his Mobic/Meloxicam today. His rhem. told me to wait 5-7 days before giving it to him, but I am going to be calling their office first thing in the morning to see if he can start it tomorrow night instead of waiting til Sat. or Mon. night.
I also really want to thank you all for the supportive words regarding me pushing for my son. I spend many days going down guilt trip lane because I often wonder if there is anything more I can or could have done along the way. If you had told me 3 years ago that we would be going through this for the next 3 years I would have called you crazy. This experience has really opened my eyes to the horrible natures of the very people who are supposed to be caring. I have done things I never thought I would have to do, right down to asking a nurse one time how she could sleep at night for causing a 2 year old more suffering after she would not do a pre-auth on some medication that my son's insurance did not want to cover because she said it was too time consuming. It has been especially hard to deal with because I have not been able to wrap my mind around the fact that these doctors and nurses are dealing with children, and how could they treat a child this way? How could they not want to do everything they could to help? The biggest thing we have dealt with is indifference and laziness. There have been some nurses along the way who have made me feel like I'm this crazy, psycho, pushy nut. I feel very optimistic about the rheum, though. Our appointment with him was the first time since this all started, that every single person we encountered within the office was just absolutely as wonderful as you would envision a doctor's staff would be. From the receptionist we checked in with who was just so kind and patient, the child life lady that set up a video game in the waiting area for my son and tried to read him a book as his blood was being drawn to distract him, the wonderful nurse who took vitals and tried to turn it into a game, the 2 wonderful nurses that drew the blood that talked to him and told him stories as he was screaming while having his blood drawn, and the doctor who seemed to take everything I said very seriously--I left the hospital feeling like this is how it should have been all along. A person, regardless of child or adult, has to deal with so much with illnesses such as these, that the added stress of hateful, rude, uncaring staff should be the last thing any of us should have to deal with on top of everything else. I know I am preaching to the choir though.
tgal- Your post really touched me. I am the one that feels honored to have this forum of wonderful people that don't know me, yet are willing to take some time out of their day to try to provide some insight and support, especially since you all are living with these awful symptoms and illnesses. Thank you for linking the criteria for me. I have read so much on autoimmune conditions and lupus the past few weeks, my head is spinning. I have even been stalking the pediatric rheumatologist journal site, reading articles. I appreciate every website, article, reference anyone throws at me.
manderson- They lost so much of my son's bloodwork during the time he was hospitalized, and really botched so much stuff, that that day I called in the hospital advocate, I would have honestly had him transferred to a different hospital if he hadn't been so critically ill. Everytime I take him to a doctor's office here, I get reminded of why I have to travel so far to go to the dr...the last and final straw with specialists here happened after his first surgical biopsy when I took him to have the stitches removed here so we did not have to drive 6 hours. After 2 hours and 4 doctors and 1 surgeon dug around in his incision to remove the stitches, I still ended up having to drive 6 hours to take him back to the surgeon who did the surgery to make sure they got all parts of the stitches out because the doctors here were unsure if they had gotten it all. Anyway, his CBC's at the time of his hospitalization were not normal, but I cannot recall without digging out the papers what the diff. levels were. We will get to find out in 2 weeks what his current bloodwork looks like. To answer your question--we live in TN. There are only a handful of ped. rheum. in our state, and from what I have found online, the one my son is seeing, travels around to 4-5 different hospitals as a ped. rheum. and also has an internal med. practice, so he is at the hospital we go to 1 day a month, hence the 8 month waiting period to initially see him, and the 1 month pd. between appointments. I told my mom that I don't even think he realizes how hard it is to even get an appointment with him.
Rob- TYSM for linking that article. It was a great read, and I am going to track down the book. Being a white male, did you have a hard time getting a dx? How long did it take to get your dx?
Terry- TY TY TY for the dapsone info. I had no idea they had to do DNA testing for it. The only thing I knew about it was what I found on emedicine, when I ran across the Bullous SLE. It's that kind of first hand knowledge you gave me that really helps alot. I didn't know if the possible benefits would outweigh the risks on it, and after reading the info you posted, it makes me less sure that I even want them to consider it for my son unless it is found he absolutely needs it, although on the other hand, he has seen some really great derms and they have tried several different treatments with no results, it's so frustrating. Since you are going to be taking this, is it because you have blisters as well?
ButterflyRN- I am not a nurse, but was in nursing school when I became pregnant with my son, and then had my daughter later, and have not resumed my courses, so I too feel that much more frustrated with these hoops we have had to jump through. Regarding the RMSF, I talked briefly with the dr. about it, and depending on the bloodwork results we get back, will expand more on it when we return. When they took the RMSF bloodwork at the hospital, they lost it and it never got to the lab, so on his discharge papers, it simply states "possible RMSF". The ped. never followed up with it, and I did not learn until 2 months later that the bloodwork had been lost. From what I have read on RMSF, I'm not sure that 3 years later, anything will show, as they have to have that initial bloodwork to compare it to, but that has always been in the back of my mind. When I had brought up the RMSF with the derm we saw for 18 months, they dismissed doing any bloodwork for anything that wasn't a dermatological disease because they said it would be like searching for a needle in a haystack, and would not refer us to any other doctor until 18 months later when they referred us to another derm. So this is the first time we are actually going to be getting any tests done that do not relate to anything specifically dermatological.
<Continuing on next post--took up too much space again...bleh>
<Continued from above post>
Steve- I cannot imagine the pain you have been through with your son having cancer. As sick as my son has been, I have always remembered that there are so many others going through so much more. I hope that with the surgery, your son is recovering cancer-free. I will keep you both in my thoughts and prayers. How old were you when you got your dx? That's awful that your early medical history is inaccessible. Do you remember any other symptoms beyond the blackouts from your childhood and adolescence? It is also comforting to hear that it is the norm to have so much blood taken at once. It shocked me when they did this with my son because this whole time, the other specialists wanted to do one test at a time and rule out one thing at a time, even though I kept asking they do more.
Marla- My son's blisters start out like very tiny papules that get larger everyday until they are hard blisters. After a few days, the blisters dry up and the area starts peeling. I will try to post a picture on here in a bit and you can see if it looks anything like yours. As far as neurological symptoms, I am hoping (fingers crossed) that this doctor is going to go down every avenue with every symptom, or refer him to a specialist that can. It's crazy that after 3 years, I feel like we are barely getting started. Thank you so much for sharing the details of your blisters. I will look forward to hearing your opinion after you see the picture.
Giggle- My stomach literally dropped as I read your post. The reason why is because my mom noticed and pointed out Monday that my son had underarm odor, and I smelled and it smelled just like an adults. We were in the ped's waiting room @ the time because of the side effects from the naproxen, and as you know from my previous post, that dr. was useless. I actually brought up the underarm odor and he said it was nothing to worry about because my son had no pubic hair. I was floored when he said that. I already have it on my list to bring up with the rheum when we go back because it's not normal, and now I am worried something might be wrong with his endocrine system. My son has never had any CT or MRI scans done, and I am hoping when we go back the dr. will want to do one. It is so hard to get them to do any testing here. He has also never had his horomone levels checked. Again, I'm hoping that is something they will do on our next visit. Was it the endocrinologist that ran the CT scan on your daughter? Does she have a condition that caused her to be missing the central part of her brain, or what caused that? I cannot get over the similarities between our kids. Everything sounds identical. How old was she when her problems started? That is also another thing in common regarding the bedwetting. My son has been potty trained for almost 3 years, but I have not been able to break the bedwetting. My 3 year old daughter has no problem with it. I figured it was probably because he is a boy and never considered it might have to do with any of his symptoms. I hate that you are experiencing all of this as well. I think it is definitely a good idea to pm back and forth because between the 2 of us, it might help us both pinpoint what we should push the dr's to test for and what to rule out, etc. I would also like to discuss the blisters more with you.
I'm sure you all know by now that I am a rambling ball of nerves, and you will never know how much I appreciate all of you responding to me so fast. I am so glad to have found this forum. I will continue to keep you all updated on what is going on. If the doctor okays it tomorrow, we will start the mobic, and I'm so paranoid about side effects with it, I have almost made myself sick with worry. Since we live about 20 minutes from the hospital, we are going to eat out tomorrow for dinner across the street from the hospital, so when I give him the meds after he eats, if he has an allergic reaction, we will be right beside the ER. I am concerned mostly with the stomach side effects, since my son already experiences the abdominal pain, I am worried I will not be able to tell the difference of a side effect from his existing issues. Again, thank you all.
This is what the blisters looked like when they first started flaring up only on his hand after the whole body flareup in the hospital.
This is a picture from the hospitalization. He had these blisters head to toe. The blisters on his hand have evolved and look more like this now, instead of just a few like the first picture.
This picture is another blister flare-up.
This picture is another from the hospitalization, showing the blisters on his wrist.
This is another picture from the hospitalization, showing the blistering on his leg.
I'm really sorry you are going through so much with your son! I am only 18 so I dont know what its like to worry about a child of my own but my little brother went through something sort of similar when he was 5 minus the blisters and some of the bigger problems you listed. He was at Childrens with a high fever for days until it magically broke and no one could figure out what was wrong with him other than he had something wrong with his eyes. They checked him mainly for JRA. Your post prompted me to talk about that time with my mom at dinner tonight and asked her if she thinks he'll end up with an AI disease like me and she said she worries some about it because of that incident and the fact that he is a kid who LOVES to ride his bike, and has been complaining that his legs hurt too much to do it like he used to...Sorry I strayed there but I just wanted to say that I too have been sick (unofficially) since I was very young too and your son is so lucky to have you there with him to get him on the road to being healthy again. I had so many vague problems when I was little everyone just thought I was whiny and joked I was like an old lady.
"I am concerned mostly with the stomach side effects, since my son already experiences the abdominal pain, I am worried I will not be able to tell the difference of a side effect from his existing issues. Again, thank you all. "
I just wanted to tell you that I have a lot of stomach issues too, especially lately, and my rheumy put me on Mobic because she said it WOULDNT upset my stomach as much as Naproxen. I hope that is the case with your son.
Are you seeing the ped rheumy at a Childrens, if so which one? I live in Kentucky and go to the one in Cincinnati and it is GREAT.
This might sound kind of stupid but I figured I'd ask. Has he been tested for any allergies? I only ask because I get things like that too and I never really thought of them as blisters but its because I developed an allergy to nickel when my symptoms started getting worse when I was about 13. Im sure they are different and one of your dermatologists have already ruled that kind of stuff out but that was just the first thing I thought of when I saw the pictures.
I hope he starts feeling better on the Mobic!
Has anyone mentioned psoriasis to you? One of my docs thinks that could be one of the AI diseases that I have. She also suspected that I could have psoriatic arthritis.
I usually don't get a cluster of more than three or four sores, but they are quite a bit like what your son has. Last summer, I had a little cluster of them by my lip, and my PCP agreed that it looked like psoriasis. Have you checked his scalp? I also get little patches of it there, and I have since I was a young teen.
One more thing to research, right?
I am so glad that you and Giggle have hooked up. It sounds like the two of you might really be able to help each other. That's the beauty of this online family - two people from different parts of the world can help each other. Since you are in Tennessee, are you going to Vanderbilt for specialists? I know that is the premier hospital in that area. My daughter, who is a neurobiologist, has a few friends who have studied and taught there.
Good luck with the new meds - let us know how he does.
Hugs to both of you,
Gosh! That is surely another sign of an endocrine issue. My daughter doesn't have pubic hair either but she also sweats excessively and smells. She also has very smelly urine, like that of an elderly lady.
A missing septum pellucidum is actually rather common and is simply a congenital defect.
It is unknown exactly what caused it but it happened in the womb. When she was about 3 years old, we noticed one of her eyes turned inwards a bit, she had a 'squint' I think they call it... but unkind people would say she is cross eyed. We took her to an ophthalmologist and he discovered she was blind in that eye. So he sent us for a CT of her brain. So she was diagnosed with septo-optic dysplasia.
We were lucky that she was blind in one eye or we may never have known why she was sick all the time.
They usually wet the bed because they are so thirsty all the time that they drink a lot and have urgency and simply dont get to the bathroom quick enough, or at all when they are asleep. Its definitely worth getting a CT done, because something so simple (a tablet a day) could help keep your boy healthy if he does have an endocrine issue.
Dont worry about not knowing the difference... its not your job to tell the difference, thats your doctors job. Its your job to notice things and tell the doctors and then push until they do something... its your doctors job to decipher it all. And he should be able to tell the difference. : ) So far, you have done an excellent job. Dont feel guilty... you didn't study medicine for years to be paid hundreds an hour... your doctor did though!!
I am pleased you've added those pic's and they show larger if you click on them...your son is suffering the same as me those are identical blister rashes to what i've got, the least bit of humid heat never mind the sun gives off a flare and i was using steriod based creams but my discoid lupus as gone past them now and i've got an excellent Dermo...who told me there's to lots of Tablets we use as a last resort to the skin
Dapsone which is a (Sulpha drug) and the other Mepacrine which is an (Antimalerial)
but a DNA test as to be run to see which one matches your bloods because of the Lupus...they just can't give you any old drug and my bloods match with Dapsone and the side affects are'nt so harmful as the Mepacrine.
I've had Lupus from birth and as the years went on it caused me to be a manic depressive besides other issues it's caused me to deal with and you say your son crys alot...i know he's only young but just watch that it's not causing him depression even at such a young age.
I'll add info below on the Mepacrine just incase you want to discuss these tablet's with your son's doctor but i also suggest you join this site it helps with skin issues...as it's used by my dermo up the hospital for correct information.
Hugszzzzz your way to your son and yourself.
What are the aims of this leaflet?
This leaflet has been written to help you understand more about mepacrine. It tells you what it is, how it works, how it is used to treat skin conditions, and where you can find out more about it.
What is mepacrine and how does it work?
Mepacrine was introduced as a treatment for malaria and for certain other tropical infections. It is one of several antimalarial drugs that have been found also to have anti-inflammatory properties, which can help some skin conditions.
Which skin conditions are treated with mepacrine?
Mepacrine is used particularly to treat discoid lupus erythematosus and for subacute cutaneous lupus erythematosus. Mepacrine has also been used in the treatment of erythema multiforme and sarcoidosis. Please refer to the relevant leaflets issued by the British Association of Dermatologists.
What dose of mepacrine should I take?
Your doctor will advise you about this. For skin conditions, the dose may be as small as 50 mg (half a 100 mg tablet) taken three times a week. A maximum dose would be 100 mg, taken three times a day. The dose for children is 2 mg per kg bodyweight, given as a split dosage three times a day (to a maximum of 300 mg daily). It may take several weeks to reach its full effect.
What are the possible side effects of mepacrine?
Mepacrine is well tolerated at the low doses used in dermatology. However, it can have some undesirable side effects:
Yellow discoloration of the skin and urine may occur during long-term treatment or with large doses. This is common but quite harmless, and should not be a cause for concern as it goes away when you stop the drug. Similarly, the palate, nails and eyes may be discoloured blue or black, which also resolve when you stop taking the drug.
Mepacrine can cause dizziness, particularly when you get up from sitting or lying down. Getting up slowly should help to reduce this side effect.
Other possible side effects include stomach upsets, headaches, feeling and being sick, rashes (occasionally severe), and changes in mood or behaviour. Fits may occur with overdosing. Liver inflammation and alterations in the blood count can occur but are rare.
Mepacrine should be used with caution in:
patients with porphyria
the presence of liver disease
Mepacrine is best avoided by patients with psoriasis as it can make this condition worse. It should also be avoided in myasthenia gravis and by patients with a history of the severe forms of mental illness called psychoses.
How will I be monitored for the side effects of mepacrine treatment?
Blood tests are usually performed about twice a year to check your blood count and liver function.
Can I have vaccinations while I am on mepacrine?
Yes. This should not be a problem. If you are travelling to a place where malaria occurs, mepacrine alone will not provide adequate protection against it and you must see your GP to be prescribed additional antimalarial treatment which may be taken at the same time as mepacrine.
Does mepacrine affect fertility or pregnancy?
There are no data on the use of this drug in pregnancy and breastfeeding.
Consequently, it is recommended that you should avoid taking it if you are pregnant or planning a pregnancy, or if you are breast feeding.
May I drink alcohol while I am taking mepacrine?
Mepacrine has been reported to produce a mild flushing reaction when taken with alcohol. There may be symptoms such as a racing heartbeat, dizziness, headache, shortness of breath, and sickness. If you experience these symptoms it is advisable to avoid alcohol.
Can I take other medicines at the same time as mepacrine?
Mepacrine is often used in conjunction with hydroxychloroquine for additional benefits. This is safe. However some drugs do interact with mepacrine. For example, mepacrine may increase the blood level of primaquine, resulting in a higher risk of toxicity, and it has been recommended that these two drugs should not be used together. Other drugs that can interact are ciclosporin, digoxin, amiodarone, anticonvulsants, penicillamine, cimetidine and antacids among others. Always inform your doctor and pharmacist if you are taking other medication. Please refer to the relevant leaflets issued by the British Association of Dermatologists.