Excessive Saliva

[Hitomio]

My aunt has bulbar onset ALS.  Excessive saliva is her main problem.  Due to glaucoma, many of the medications that are available for saliva control are not available to her (elavil, etc.)  She has tried benadryl and the scopalomine(?) patch.  We are now considering the xray treatment of her salivary gland.  We understand this will temporarily halt or diminish the production of saliva.  We also understand that this procedure will have to be repeated every 3-6 months or so.  We are looking for information, experiences (pro/con) anyone has had with this procedure.  What are the potential side effects, etc.

Thank you for your help.

[kichan]

A related discussion, exceesive salivation after head injury was started.

[kim]

I have a 4 1/2 year old and he is in normal health but he has alot of slober and I find that is affecting his speech. He has had tubes in his ears since he was 10 mths and I think that has affected his speech also but he slurrs his words alot and you can see the saliva and it goes around to the front of his teeth and he has to stop talking and swallow. I started looking up things today and I found that he has 2 swollen knots right under his jawline and his earlobe is red and sore. He says the knots are sore. We live in a small town and when i ask about his slobering they blow me off. He starts school next year and I am concerend.
Thank you

[kim]

I have a 4 1/2 year old and he is in normal health but he has alot of slober and I find that is affecting his speech. He has had tubes in his ears since he was 10 mths and I think that has affected his speech also but he slurrs his words alot and you can see the saliva and it goes around to the front of his teeth and he has to stop talking and swallow. I started looking up things today and I found that he has 2 swollen knots right under his jawline and his earlobe is red and sore. He says the knots are sore. We live in a small town and when i ask about his slobering they blow me off. He starts school next year and I am concerend.
Thank you

[jennifer]

I am concerned about possibly having bulbar als.  I have had muscle twitches for about 2 and a half years.  Recently, my neck and shoulder muscles have been sore.  I have also had problems with my voice.  I will be talking and in the middle of a sentence, the word doesn't come out.  My mouth will move and Iknow what Iwant to say, but my voice almost cracks but with no sound. It only lasts a few seconds.  Then I am able to repeat it.  Is this a sign of als?  I am pregnant and very stressed about this.  I had an emg about a month ago.  This problem started about a week ago.  My emg was normal.  I am still, however, very concerned.  I have been seeing a neurologist in Chicago. He seems to think I have benign fasiculations.  but what about my voice?

Any feedback would be greatly appreciated.
Thanks.
Jen

[CCF Neuro[P] MD, RPS]

Dear Elizabeth:

I am very sorry to hear about your mother.  Usually ALS spares the bowel and bladder function.  The loss of bladder control is likely related to something else going on.  I not sure what to tell you about the feeding tube and respirator.  These are decisions that are your mother's.  I would speak with the ALS team and see what suggestions they have to offer your mother.

CCF Neuro MD

[Elizabeth]

My mother was diagnosed Bulbar Palsey Als last summer-having been previously misdiagnosed with stroke.
SHe is unable to walk - chew- taste-she now uses a Lightwriter to communicate  (available through ALS gruops) .
Recently she is losing control of her bladder - is this ALS related? does it show where in time the progression is ?
She will refuse any feeding ube or respirator . Whats next? when?
***@****

[reetad]

The neurologist calls what my mother has"pseudo bulbar palsey" so I'm not quite sure if it falls into ALS or not.  The symptoms (slurred speech start and unintlligible end--swallowing problems ending in feeding tube which she manages quite well,right arm weakness and deteriorating handwriting, and now neck weakness) started about 5 years ago so have progressed somewhat slowly for a true ALS ( at least from what I read).I wish I knew.
What is the mechanical ventilation? Can you describe it? How will we know when she needs it? Does it require a medical setting or can she have it at home?
When the end approaches, is Hospice a good alternative?
Thank you for your help.

[CCF Neuro[P] MD, RPS]

Dear reetad:

Sorry to hear about your mother's condition.  Your mother does not have the ALS type of bulbar palsy as the life expectency is about 1 year from the time of diagnosis. PSP is a progressive disease of the lower brainstem.  Mechanical ventillation is where a tube is placed into your windpipe and a machine breaths for you.  I think that the family needs to sit down with the neurologist and look at all the possiblities concerning the long term management of your mother.  Her desires need to be addressed as well as those who will be taking care of her.  Hospice is a wonderful idea and this also needs to be investigated thoroughly.  The idea of dying is difficult for us as we tend to think of ourselves as living forever.  This will be a emotional rollercoaster for your mother and the whole family.  You need to make sure that everyone close is on the same page concerning diagnosis, longterm outlook, and emotional needs of all.

Sincerely,

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

Dear Reetad:

Does your mother have ALS.  The radiation treatment is only experimental, but the small sampling of patients have done well.  The anticholinergic effect of imipramine can work, and I am glad it has in your mother.  As you know the prognosis for ALS is grim.  Your mother, if she has ALS will continue to get weaker.  Have you made any decisions concerning mechanical ventillation and who will be the primary care giver?  What is your will state about who has heath issue say?  These need to be addressed, the sooner the better.

Sincerely,

CCF Neuro MD

[reetad]

My mother is suffering from the same symptom as your aunt. She has been on afeeding tube for 2 years and has also been independent up until just recently.She had the radiation to her parotid glands done twice, but it made little diffeerence. Right now the neurologist has her on a medicine that has helped to diminish the saliva. It is Imipramine- an antidepressant that has the side effect of dry mouth-heer mouth is certainly not dry, but the saliva is lessened.I wish I knew more about the long term prognosis. Her right arm is now weakening and she is beginning to have difficulty holding her head upright.Perhaps the CCF MD could tell me what to look for /expect next.
Thank you for any help.

[CCF Neuro[P] MD, RPS]

Dear Hitomio:

Your aunt, actually has done very well considering the type of ALS she has.  We usually tell patients one or two years of life after diagnosis of this type.  As you can imagine, nutrition is really important, so the feeding tube is a very good idea.  The main player in the x-ray treatment for excessive saliva is a Dr. Eisen.  Our group is just publishing a chapter concerning ALS and its treatment so I happen to know the name.  It does work, and considering the options, probably a good idea.  I also hope that both have the sporatic type of ALS.

Sincerely,

CCF Neuro MD

[Hitomio]

Her official diagnosis was fall of last year but I'd say she has shown symptoms since 1997 (slurring of speech).  She is totally unable to speak and we put in a feeding tube surgically.  She had a major infection when they put the feeding tube in through the "out patient" method and ended up in the hospital and a nursing home.  This was in June, finally in Sept. her infection wound had healed enough to put in another tube.  At the moment she is not using the tube except to put in water.  She is still able to eat somewhat but is supplementing orally with ensure.  But the excessive saliva is definitely making eating more and more difficult.  She lost a lot of weight during her feeding tube ordeal and has not been able to put any back on but then again she is not losing any weight either.  Other than that her breathing function is pretty normal and the ALS has not affected her arms or legs.  She is able to live alone and drive.  As perhaps an interesting aside, my father died of ALS (limb-onset) in 1976.  My maternal aunt now has the bulbar ALS.  I believe this is quite unique to have ALS on both sides of my family tree.  I am hoping it is of the sporadic variety since we don't seem to have any history of ALS on either side.

[CCF Neuro[P] MD, RPS]

Dear Hitomio:

I am very sorry to hear about your aunt.  Excessive saliva can be a very pronounced problem with ALS patients.  Normally, X-ray is not the treatment of choice, but with the glaucoma medical options are more limited.  How long has the diagnosis of ALS been?  Are her symptoms pronounced?  The treatment will work, and as you indicated repeated.  But if the long-term is only a few years, then this option might be the best overall choice.  Usually, the extent of X-ray can be limited by coning of the beam to the location of interest.   The side effects of tissue damage will likely be small over the short term need.  Surgery is also another option.

Sincerely,

CCF Neuro MD