Thank you all so much for your replies. After watching Mystery Diagnosis last night, and spending hours with my good friend Google, I am pretty much Sjogren's is not what my son is dealing with. I wanted to go ahead and post a reply to wrap this thread up, and just in case any of it rings any bells and someone has a suggestion or some input. Thank you all so much for your help. I hope you all continue to do as well as you possibly can.
I'm sorry my original post was not more detailed. My thoughts are no in order right now. We seem to have hit the "sit and wait till the end of May" point and it is just so frustrating. I know I can't diagnose/cure/treat him over the internet, I am just trying to make a comprehensive list of questions to take to the doctor with me.
I have posted so many places, just looking for someone to say "HEY- I know exactly what that is, and it's no big deal- easily treatable, no long lasting effects." You know, all the good stuff.
I am very comforted by the fact that he has had good, clear MRIs of the brain and spine with and without contrast, many bloodtests and a couple of urinalysises, and an EEG. The only thing blood tests turned up was a low positive ANA titer, very slightly high Thyroid levels- 2 doctors agree it is not something to treat right now, but they want a recheck in 6 months. Also, his potassium was a tiny bit low, and we have added a better multivitamin to fix that.
I am also glad that he is a little more comfortable with the Gabapentin. He was having 100-200 quick stabbing/shocking headaches per day along with dozens and dozens of random body pains all over his whole body. The pains vary from feeling like they are in the bone, in the muscle and right on the surface of the skin. He feels shocking, stinging, burning, coldness, tingling, stabbing and other aches and pains. MOST pains last several seconds to a couple of minutes. Some pains, like wrist, arms, legs, jaws, can last longer, like several hours. All of the pain comes and goes quickly, without a visible cause and usually with no residual soreness.Sometimes leg pain/heaviness is enough to cause a limp for an hour or so, and then even that will be completely gone with no soreness.
Right now, they are saying it is neuropathic pain. The Gabapentin has drastically cut down the frequency of his pain. He still does has the pain many times a day, and it still hurts, but like I said it is so much less frequent that it is quite a relief. We may be able to adjust his dose again in a few weeks and get him even more comfortable.
I spend most of my free time to read on the internet and see if I can find anything that sounds like this.
At his appointment, there has been mention of MS, Lupus and Fibromyalgia. I hope it's nothing that serious, It sounds like Fibro has the best prognosis because there is no major organ involvement. All three conditions sound similar to what my son is dealing with, but none sound exactly like it- and as we all know, things can really vary from person to person, NOT just condition to condition. I have found it helpful to post on forums with real people who live with real problems. I find that their descriptions of conditions are often a lot different than a short official medical write up of causes and symptoms.
This pain may have started a little bit in Dec. 07, and a little in January, but it REALLY kicked up the first week of Feb. 08. I keep waiting for it to end, like a cold or a virus, but so far, it's still going strong.
He was born with Reflux. He has been dealing with a degree of incontinence since Dec. 06- several local doctors and the doctors at Children's Hospital were unable to tell us why he has the issue. The best explanation we got was that it was probably bladder spasms. He was unable to take the Ditropan they prescribed because it irritated the reflux so bad. He takes Nexium for the reflux. He has an endo early 2007 which found open sores in spite of the fact that he has been treated for GERD since birth. We could not let the ditropan reverse and healing he had going on.
The final word from the doctors at children's was that he would more than likely outgrow it, and it was really no big deal. No big deal for who? The doctor... or the 9 year old who has to carry a change of clothes and a portable urinal everywhere he goes, and worries about wetting during karate class?
We did find an herbal product, after much searching, called Curbita Bladder Caps that seemed to have drastically improved the incontinence, even if it did not completely "cure" it.
When these pains started, the reflux and bladder issues got worse right along with the pain. I can't help but question if there is any relation.
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Billye- Thank you.
I don't believe he has a parotid infection- would that be the only time the swollen appearance would be present? He does not have a fever or any other signs of infection, no bloodwork has caught and infection. He has had this swollen look, which goes beyond just the weight gain he has experienced, for a long time.
His most common actual head ache is on the right side, above his ear. He has tons of pain in his head- jaw, teeth, roof of mouth, back of throat, back of head, above eyes- but he never refers to any of them as actual headaches except for the one above his right ear- and occasionally about his left ear. The rest are like his other body pains.
B12 has been checked by the pediatrician and the Neurologist. I don't have the numbers, but I will try to get them.
He has always had the reflux. He was dxed at 4 days old. The doctor said he would almost certainly outgrow it, but he did not.He avoids a lot of foods, but it seems to act up regardless. When he had the endo, they did a biopsy to check for pre-cancer cells, allergic processes, and Chron's disease. Everything looked good. We have asked about other allergt testing, neither doctor seems to feel like it's needed. Maybe we should push for it anyhow.
He has been seen by two nephrologist locally, and then at the Children's hospital in the nearest big city. He had an ultrasound in the office (little black box with a microphone like attachment,) that found that after he voided, there was still a few oz. there. He "double voided" and kept a diary for several months with no improvment. A sonogram found no physical problems. The final word was that it was "no big deal" probably spasms, and he would probably outgrow it.
He was unable to take the medicine they prescribed due to his reflux. An herbal supplement provided a lot of relief. We do not normally use herbal supplements, but we were desperate to find some help for the day time wetting and leaking.
He has not been checked for Candida- he sees a dentist next week and we will ask about that. We are taking him again because of the constant toothaches. Our son says he can tell the tooth pain is just the same as his other nerve pain- and we know he is probably right, but we do not want to overlook anything either.
Yes- actually, thank you for mentioning about the burning mouth- he has had very few complaints of this since being on the Gabapentin. He has had burning mouth all of his life. I will try the products you suggested for him. He can't use any minty flavored anything, so he always uses the little kids versions of toothpaste that taste like watermelon or bubblegum. Some of those even burn.
Thank you so much for all of your help.
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Irish-
Thank you for your reply.
After reading more I do not feel like Sjogren's is likely a possibility. I did not realize that infection was usually present to cause the swelling. I should have realized that. He does not seem to have an infection- he just looks very swollen in the parotid area. I have mentioned it to his doctors, and they always shrug it off as being weight related. He has gained 13 lbs. in the past year while being on a very reasonable diet (Hubby is diabetic, we eat carefully and do not keep junk food in the house.) AND with the addition of martial arts classes. His face does not just look "chubby", the parotid area looks almost like water retention or something.
Heartburn has always been a problem for my son. He sleeps on 3, thick, stacked body pilows pulled into a "c" shape around him so he stays propped up good. We have tried other ways of propping him, but this has always seemed to work the best.
If Ibuprofin can help the pain, then again, this is sounding a lot different than what he is dealing with. We have not found any OTC relief for the pain.
Our son is 9, and has had two cavities. The doctor suggested we have his teeth coated with something.. what was it? Something to help protect the enamel. I think it was a general recommendations. It sounds like Sjogren;s leads to far more cavities than that. It is sounding more and more like I need to keep searching- but that is okay- it lets me take one more thing off of my list of primary concerns, and I am always grateful for that.
Thank you so much for all of your help.
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RitaB- I am so sorry for your struggle and your ongoing search for a diagnoses. I guess that is one of my big fears- that no one will tell us what is going on with our little boy, he will not get early treatment if he needs it, and then things will be even harder on him later.
Parotids- My son has the swollen look, but he has not mentioned any pain in the area, unless it's what he could be calling his jaw pain.When I carefully feel the area, it looks and feels almost like fluid- no firmness.
The roof of his mouth is where he has a good bit of pain some times. I am not sure he has a dry mouth- he does drink water constantly, but I don't think it is necessarily due to dry mouth.
Reflux is awful- I am sorry you have to deal with it. I remember not thinking reflux was a big deal when I was younger.Easy for me to say- I never had it. Seeing how miserable it makes my son, I know it is a HUGE deal and can really effect the quality of life if it's not able to be controlled.
Muscle and Joint pain.. I have not quite figured out if any of his pain is in the joints. He has a hard time explaining sometimes, so we really work to figure out exactly where the pain is. Once in a while, I will be just positive it is in a joint, then he will say or do something to make me think otherwise. It is often right above or below the joints.
I asked about overheating because he gets so much worse as he heats up! He tries to keep going no matter what, but it scares me to see him heat up, start having more pains, start limping, and/or walking kind of bowed over from the pain- and trying to keep going. As soon as I get him cool- crushed ice, popscicles, air conditioner, cool baths, whatever- the pains start calming down.
He has been checked for Diabetes, once at the Urologist, and once at the regular pediatrician. Diabetes does not appear to be an issue.
Thank you so much for all of your help.