Lots of questions, Face, Eyes, Bladder, Reflux, Neuropathy?

[Worried_Mommy]

 I am so sorry for the odd post. I don't even know where to begin. My thoughts are so scattered right now, but I needed to try to ask a few questions.

 My little boy is 9 years old. He is having a hard time right now. He has been seeing a pediatrician and a pediatric neurologist. He is going to see a pediatric rhemutologist- but there is only one office in the state and he can't get in till the end of May. In the mean time, he is on Gabapentin to try to help keep him comfortable.

FACE-  What about this swelling of the parotid glands- Is this something you usually see with Sjorgren's? Is it very pronounced?

Are any of these issues common with Sjorgrens?

Headache
Neuropathy
Joint/muscle pain
Acid Reflux (or worsening of it.)
Bladder control issues
Sleep disorders
Burning mouth syndrome
Mouth ulcers
overheating easily
small difficult to locate veins when it comes to bloodwork

 Do you ALWAYS have dry eyes/mouth? My son has a very hard time explaining himself and I am honestly not sure if he has a dry mouth and eyes or not. I know he has a bad taste in his mouth a lot of the time. I am trying to ask more questions and see if I can find out.
 
 I need to go read more, I will be googling, but in the meantime- is Sjogren's something you are born with, or something you just aquire? Would you have always had symptoms, or do they "flare", and if they do flare, how long to flares last?

 Thank you so very much for any help at all. 

[LenV]

I'm going to jump in and answer what I can.  I'm so sorry you had to find us.  Sorry there was a reason.

Swelling of the parotid glands is quite common.  Heat packs and massages seem to help most people.  Did they give him anything for the pain?

Headache isn't necessarily common.  Altho a lot of people do have them.  What type of headache is it?  Is he running temperature with the parotid infection?  Does his head hurt in the back of his neck, in his forehead or just all over?

Have you had his B12 level checked?  Low B12 can cause neuropathy.  And don't take the doctor's word that it's an o.k. level.  They are still in the dark ages.  Let us know what it is.

Do any of the medications that he takes cause acid reflux?  If not then it's something in his diet.  I'd test for gluten sensitivity first.  Gluten sensitivity can cause acid reflux and neuropathic symptoms.

Has his bladder been checked for infection?  That can cause lack of control.  Also plain old bladder spasms can cause lack of control.

We do seem to all have sleep issues.  But when you are suffering from such pain, it's hard to sleep.

Has he been checked out by a dentist for Candida.  It can grow in the mouth and throat and spread down thru the digestive tract.  That can all cause acid reflux,  mouth ulcers, and a burning mouth.

Burning Mouth can also be caused by small fiber sensory neuropathy.  The Neurontin should help with that.  Also I'd switch him to Biotene toothpaste, mouthwash and mouth gel.  I swear by them.

I guess it is possible that you could be born with Sjogren's.  I wasn't and most people I know weren't.  I aquired mine after trauma to my body.  I'm still sero=negative but I do have a positive mouth biopsy and it was determined that my disease was advanced and causing my small fiber sensory neuropathy.  I also have Rheumatoid Arthritis.

Use the search function at the top of the page.  This forum is full of good knowledge
Good luck and I hope I helped in some small way.

Billye

[irish]

I am so sorry that you had to come to this site for your child. Life isn't fair. First of all, all the symptoms you listed can be related to Sjogrens. I can just imagine how difficult it is trying to find out what a child is feeling. It is hard enough for an adult to explain this disease to the doctors.

The salivary glands will swell on and off and cause some discomfort. The mouth is dry and needs to have frequent sips of water. Sugar free lemon drops are really good for stimulating saliva. Salivary glands don't always get infected but it does happen. It is good to do the heat and gentle massage of the glands to keep what saliva there is flowing to keep the salivary ducts from plugging up which can cause infection. Some people can also make little stones, gravel etc and a stone can plug the duct.

Heartburn is common with Sjogrens--related to the lack of saliva which dilutes the acid in the stomach. When too little saliva the acid is trying to digest the stomach and taking mylanta etc helps. Also, prilosec or these type of meds can be given to prevent the reflux. Elevate the head of the bed 4-6 inches by putting wood blocks under the legs of the bed. This helps keep the acid and contents of stomach from refluxing up into the esophagus, mouth or sinsues.

Joint and muscle aches occur and usually Ibuprofen etc is ordered by the doctor. The doctor may choose to put your child on a stonger medication called DMARDS which halts the autoimmune attack on the body. Please do a google search and type in sjogrens syndrome and see what kind of info you can find. I would think that kids have pretty much the same symptoms as adults . I know that I had 11 cavities the summe I was 10 or 11 years old. I really think that I had sjogrens when I was younger.

Sjogrens is acquired as far as the medical community knows. Generally people will say that they had some traumatic event like an infection, surgery, childbirth, etc and next thing they know they weren't feeling good. Also, there is definitely a genetic link that fits in here somehow. I know that my mom had Sjogrens but never diagnosed. All the symptoms though as I think back.

Don't lose heart. This is a better time to have the disease as they are getting proactive and know more about it. Also, it is not fatal and really a disease of inconvenience (mouth sprays, eye drops, etc. The doctors should be treating the symptoms and trying to keep your child comfortable. The disease can go into remission with medication like Plaquenil or DMARDS and it can also have flares. Stress, both physical and emotional contribute to flares. The need to have more rest and a more organized life to prevent fatigue etc is very important. Also need to eat good meals.

One thing that I will mention at this time is to sort of monitor your childs interests as far as a future occupation goes. It is wise to plan for an occupation that will allow for a good income without being to physically taxing.

As a 65 year old grandma who has raised 3 boys I will add that it will be a big challenge but you will manage because that is what mothers do. Try to take it in stride and your son will develop the same attitude. It is amazing what kids can do with their life in spite of difficulties. They are more resiient than adults. Good luck and come back and visit. Lots of good advice and great people on this site. Irish

[RitaB]

My heart really goes out to you and your son.  I am still undiagnosed as whatever I have has taken literally years to manifest itself but my PCP now believes it is SJS and I see an ENT on Thursday (for my swollen parotids) and a rheumatologist on June 9.  I would like to address some of the issues you talked about:

1.  Parotids - mine (both side) have been swollen for about a year now, but not painful but they do have at times tenderness.  I took the advice of massaging them but that gave me terrible headaches and stiff neck.  Sometimes I have pain that shoots into one ear and maybe just to the earlobe.  I believe my headaches are related to the parotids.  When I massage them or the doctor presses on them, I develop pretty bad headaches, neck aches, even down into my shoulder and get a general sick all over feeling.  Also, my face burns and feels tingly.

2.  The roof of my mouth is very dry but often I get a pool of saliva under my tongue.

3.  Now I am getting pain in front of my temples and I believe it is somehow related to my eyes.

4.  Reflux - terrible, terrible reflux.  It makes more sense now.  Also I read that sjogrens can slow down your digestion system which can cause reflux as well (my 7 yr old granddaughter is on 2 different kinds of meds for reflux several times a day and they claim it is that condition where the stomach is slow to empty.  She does not have an autoimmune that they know of but SJS can cause the condition she has in people but either way SJS sufferers do have a lot of reflux and IBS.)

5.  I have bladder problems and the dr reminded me that SJS can affect your bladder.

6.  Sleep - I have pretty bad restless legs disorder and when I am in a flare of whatever it is I have, my rls acts up as well.  Lately though, when I awake thinking it is rls, I can go to the restroom and my legs are immediately calm and I can sleep.  Go figure - but I have read from others how the bladder acting up affects their legs.  So I take that over the counter AZO when I have problems.

7.  Muscle and joint pain - yes, yes, yes, yes and another yes. 

8.  Burning mouth - I definitely have that along with a bad taste

9.  Overheating - the other day someone (or I read) that SJS causes your perspiration system being out of whack.  I love these other ways of saying I sweat a lot.  I am still premenapausal and I have been severe problems with "overheating" for over 10 years a lot.  But at times though, I think for me an excess of sugar may aggravate it.

Now may I ask you a question?  Has your son been check for Type I Diabetes?  It could cause a lot of these symptoms as well.  Type I Diabetes is an autoimmunde disease as well and also occur along with these other.  Just thought I would ask. 

I hope you find answers as well as help and relief for your child.  Wishing you the best.

RitaB

[Worried_Mommy]

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.

_________________

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.

_________________



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.

_____________________


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.   

[irish]

I just want to tell you not to rule out Sjogrens. He has so many issues that could be from Sjogrens. Also, he has a slightly elevated positive ANA. THe doctors tell us that it is not always the number of the ANA but the fact that it is elevated. Also, when a person has Sjogrens there is a kidney issue that is called RTA or renal tubular acidosis and low potassium is one of the signs. Generally, they have to do some special blood work and it can show up in the blood but not always be a severe problem on diagnosis.  One of the blood work is called an ammonium chloride loading level.

Also, one doesn't always have to have infection with Sjogrens. It just happens when it happens. The swelling in the salivary gland areas can be very mild to extremely severe.

I am surprised that the doctors haven't mentioned elevating the head of the bed for your son. Generally the pillows don't always do the job as well because the persons body can get some kinks in it while trying to stay elevated with all the pillows. The elevated head of the bed allows gravity to help the food and acid stay in the stomach. My grandson has had reflux since he was born also and he is now 4 and still suffers some from it. I have a hard time understanding how all these kids are now having reflux. Makes me think that there is something going on with our food etc that we don't realize yet.

The neuropathy that your son has is like I have in one leg only his is much worse. I get the sudden firey, stabbing pain that hits me and sometimes takes my breath away and it can be gone in 5 seconds or it can last longer. I can have it for a couple weeks and then it will go away for a while only to come back again.

There are so many neurological causes of neuropathy that it may even behoove you to try and 2nd or 3rd opinion as far as neurologists go. It is so hard to keep on going to doctors but I can really understand your fear and frustration for your son.

Just out of curiosity, does your son flunk all the urologists scopings etc? I ask this because in women we can have the fine, tender mucus membranes of our urethra swell and become painful. This will make it hard for us to hang onto our urine because of some pain and then the inability to hold the urine. I think the tissue is so swollen that it can't become tight under urine stress. The cortisone urethral suppositories have helped me over the years. Just a thought. I also have had Trigonitis at times also and they have used urinary instillations to treat this.

Please know that I am thinking of you and will send up some prayers. You have been a very busy Mom "googling" and learning a whole lot. I hope this nightmare will soon end for you. Irish