Discussions By Condition: Medical Stories

15m old w/ cerebellitis

Posted In: Medical Stories 16 Replies
  • Posted By: Drumwidow
  • January 23, 2008
  • 00:29 PM

My son is 15 months old & was developing normally, reaching all his milestones on time along w/ his cousin who is 2 weeks older. Around Christmas we noticed he was falling alot & walking like he was drunk. Even standing he would wobble & fall over. Before this he was running. His stance widened to compensate. He does not fall on his butt like normal he falls face first, sideways or backwards. He doesn't even try to break his falls which is a normal instinct. We knew right away that something was wrong but our pediatrician always gave the same pat answer. He has only just learned to walk, he has a cold & sinus probs which are probably throwing off his balance & my all time favorite was "he is sick (he had bronchitis) & viruses can do all sorts of strange things".

I didn't realize how bad it had gotten until my family saw him at Christmas. My mom was extremely upset. She watches his cousin every day & the he was not only losing ground but she was way ahead in milestones now. Connor can hardly walk and his cousin is now climbing up & down off the sofa.

On Jan 8th we had a reg well check up w/ our primary ped dr (sick visits you get whoever is on that day). Connor's head size had grown to the 97th percentile from the 90th previously. The rest of him in comparison is height 50th and weight 75th. While we were waiting for the dr to come in we were changing his diaper & he had a seizure (new development). His eyes rolled to the back of his head & would stay there for a min or so then he would look at me but not see me then he would do it again. He wouldn't respond to me at all. His arms & legs got all floppy. When it was over he was real out of it & then slept for hours after. At this point our pediatrician knowing us & my son said he needs a CAT scan asap. Even though she didn't actually see the seizure she took it seriously. On the 10th he had what I think was another seizure but I can't be sure because he was asleep & I couldn't evaluate his mental status. His right leg was moving back & forth rhythmically. He had never done this before.
We had the cat scan which came back normal & were sent for an EEG before we ever saw the neuro dr. EEG came back neg too but the neuro dr heard our story from her tech & nurse and called us back before we even left the parking lot. After examining him she put my son into Children's Hospital Of Philadelphia (CHOP) for more testing.

Connor had an overnight EEG which was neg. They sedated him(another horror story) & did an MRI & a spinal tap. This is over 4 days time & Connor worsened while we were there. He now was having problems sitting with out bobbing, swaying & falling over. His walk is much worse when he would walk at all. He lost words he had been using. Now he babbles like an infant & doesn't use any of the words he had before. He won't even try to feed himself except for a bottle (won't take a sippy cup anymore). The neuro dr who admitted him to the hosp on Monday saw him again on Thursday & couldn't believe how much worse he was. Then on Friday they sent us home. They said all the tests are done, there is no treatment that they will do as of now. Steroids are our only option but they feel that the risks outweigh the benefits at this time. My son left with a diagnosis of Acute Cerebellar Ataxia (which is a symptom not a cause). I am very upset at this wait & see game.

My primary ped dr called the neuro dr & I now have a diagnosis of Post Viral Cerebellitis. They are not sure but they believe that is what he has. I was told if at any point I feel this is getting so bad he can't be handled at home they will put him right back into the hospital. Then the Dr's tried to tell me that there is no chance of permanent damage from this. I know better. I am a disabled RN & know how the inflammation process works & I did research. I know not all kids recover from this.

I have been looking for posts everywhere about this & there are only a few posts that I have found & they are not very encouraging. I am scared. To watch my son lose months of development in such a short period of time is killing me & to not know if this is going to plateau & get better like the Dr's are hoping is so hard. I feel like they should be doing something & I am constantly told that there is nothing to do at this point it is so frustrating. I am on constant guard duty to try to keep him from hurting himself. As I stated earlier I am disabled & the worry and guard duty is making me much worse. I am not finding much on the web about this either. Is it really that uncommon? Anyone have any experience with this? I could use all the help we can get.

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16 Replies:

  • Wow Blaze you gave me alot to look up. Thank you. It may take me awhile but I definitely check it all out and post what I found and if I think it relates to my son. Any info I can find is so helpful. I won't be able to start on it tonight since I am so tired I am not seeing straight. My hubby wants me to stop the research. He says I am driving myself crazy and he is afraid of what this is doing to me. The not sleeping and staying up all hours searching. I don't get much else done around here except take care of my son. But, I need to do this. I need to look for answers. I need to feel like I am doing something. Well, I just vented again. Sorry. I thank you for all your help and I will let you know asap what I end up finding.
    Drumwidow 7 Replies
    • January 25, 2008
    • 07:18 AM
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  • Hello. My son had post infectious cerebellitis and it was a helpless feeling for me as I saw my son suffering. Though.. I do credit the Lord, that he made a nearly full recovery (to the naked eye a full recovery but he still tires easily). He was almost 3 when it happened and now he is just about 5. It sounds like you have gotten the right diagnosis perhaps. However, did you take him for a second opinion? You have every right to do that. And, you shouldn't rule out the fact that he could have gotten lyme disease either. I am still not entirely convinced that Jay didn't have lyme disease and the most annoying thing about the whole thing was that they got his spinal fluid and then never tested it for Lyme and then discarded it. The second spinal tap.. they never could get any fluid. I don't know what your relationship is with God but first of all my biggest advice would be to surrender your child to the Lord> I am sure you have been praying . And, take comfort in the fact that you can handle this and you will get through it. I know what you mean when you said you were up researching all night and this is consuming you. I did the same thing. And, its almost as if I had post traumatic stress or something. It is so absolutely terrifying when our babies are not well AND we are not entirely sure why really. I can relate to that 100%. Some children need physical, occupational , speach therapy for this. NJ should have an early intervention program and I would get your son hoooked up with this right away. He will qualify already. I was told by the two neurologist that I saw that usually kids do require some therapy.Jay was exceptional (and keep in mind that his eyes went cross for a while with the whole thing).I want you to email me directly (ROKinder@yahoo.com) for any support you may need. I truly know what you are going through and will be praying for you.In God's love,Becky Hi everyone,> >> > You may have heard what has been going on with> Jay. It> > has been a really terrifying experience. Jay was> > basically acting like he was on "drugs". And the> whole> > thing came on within a matter of hours. His eyes> > were going all over the place, he couldn't walk,> > slurred speach & was hallucinating. They called> it an> > "altered state of consciousness". We went through> a> > battery of tests (extensive blood work, spinal> tap,> > drug scan, CT scan, & finally MRI) and a brain> tumor> > has been ruled out. Thank God!> >> > The pediatric neuroligist has diagnosed Jay with> Post> > Infectious Cerebralitis. Basically it is an> autoimmune> > disease. After any common virus or infectious> disease> > (ie.. stomach virus, strep throat or common cold)> you> > have antibodies left. In this case, Jay's body> > malfunctioned and his own antibodies began to> attack> > his cerebellum (in the brain). Please excuse any> > mispellings.> >> > The only thing Jay can do is rest now. It will> take> > between 6-8 weeks for Jay to get better. The main> > symptoms he has now is a headache (his "drunken"> > behavior has greatly improved) and his eyes are> still> > drifting and unable to focus and he can't really> walk.> > But, every day she says he will get better and> > thankfully, he should make a full recovery. He> > obviously is not contagious as its his own body> > attacking his brain. However, other people's> germs> > are extremely dangerous to him right now. We can't> > take Jay out in public places for 6 weeks and she> > doesn't want Timmy or Hope to either. Timmy can't> go> > to school, etc. The reason is because if Jay is> > exposed to another illness and gets sick, his> brain> > could be attacked further and his body can play> more> > tricks on him.> >> > We are asking everyone to keep praying that Jay> makes> > a complete recovery. And, of course for those that> > prayed for him.. we are thankful. God is able to> help> > us through anything. We felt his presence in a> real> > way through all of this! Please feel free to> call> > and check on him. We will have follow up visits> with> > regular Ped and ofcourse the Ped Neurologist> (whois> > excellent and worked for a long time a John's> Hopkins> > Medical Ctr).> >> > We really love all of our friends and family. And,> of> > course when you feel like your baby is knocking on> > death's door you really realize how precious and> > fleeting life is.> >> > Keep praying for Jay.Next section of what happened: We are actually in RI - Hasbro Children's Hospitalright now. Actually Jay got worse and was cross eyedjust a few days after I wrote that email and then theped Opthamologist said his optic nerve was inflammedand that meant pressure on the brain. It wasterrifying. We took him back to the neurologist andthen felt we really needed to get a second opinion. Sowe drove all through the night and my uncle was ableto get him in (8hrs later) with the director ofNeurology at Hasbro. She is top notch and also thinksthat my neurologist in WV is too. They have discussedJay's case and feel the diagnosis is cerebellitis butthey are unsure of the exact cause. In the meantime wehave had an EEG done and had to repeat the spinal tap(which was horrific) and anyway, it has all beencrazy. We are staying in RI now and we have been atHasbro everyday. Jay is doing a bit better everyday,but it has been awful.Keep him in your prayers. I am sure you are gettingvery excited for your baby to be here!let me know when s/he arrives.
    ROKinder 1 Replies
    • February 11, 2008
    • 11:23 PM
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  • Dear DrumWidow & RokinderI found out this thread looking for people who are going through the same trial we had!! I'm very moved regarding what's happening to your sons, and I know exactly how you feel because my daughter had also a post viral cerebellitis when she was 22 months old !! (now she's more than 2 years and a half)June 2007 : When it happened; we've also been told that PVC is not common, but we thought that it would be easier to find people sharing the same experience. We needed (and still need !!) to know that our daughter was not the only one . We felt so helpless and lonely !!!I had a look on the web. We are French, then I excepted to find french family with a child suffering from PVC to talk with .. But I only found families with similar and worst diseases, such hereditary, degenerative .. It seems the PVC the USA is something "well know" ..and I found a lot of medical pages which was talking about it !Sacha (my daughter's name) started walking 3 weeks before her first birthday. She often had cold symptoms and a recurrent otitis .. Probably because she was in a crèche !! The first symptom appears on the end of May 2007 = we noticed a slight head trembling and a strange eyes movement (we known later that it was a nistagmus) !!We went to the pediatrician and he asked a neurologist rendezvous for the day after !!She was rushed to hospital and the second day she could not walk anymore, stand up on their feet, and eat by herself !! At the same time, nistagmus disappeared but she still had slight hands trembling ..She had MRI, EEG, Spinal tap, several blood analyses .. All those tests came back negative !! We decided to change hospital and bring our daughter in another one because we've been told that there was a competent neuro-pediatrician ! She started again a batch of tests and also for a second time MRI, EEG, SPINAL TAP .. All was NEGATIVE !! An by elimination (tumors.. Brain atrophy..) the diagnosis was PVC !! No medications.. No treatment !! At the same time she started to feel better .. She was more strong, and she tried to stand up leaning on something.Just patience they told, and we went back home !! August 2007 : It was so good to be home again with her !! We thought immediately to make house safe and we installed a "padding playground" in the living in the way of she does not hurt herself when she fell !!Sacha made good progress since she had an unexplained fever (probably due to her recurrent otitis). Immediately she felt weaker then ever and she could not stand up again !! All our hopes regarding a progressive recovery were falling apart and we felt lost and afraid. Back to hospital again !! They told that the fever affected her general state !! She took antibiotics and after around 10 days she started to improve again ! Basically, Sacha had ataxia, uncoordinated movement, unsteady gait ..and weakness when she woke up! After a while, she was more stable, she stood up and was able to walk if I gave her my hand and she tried to walk on her own in the grass garden (smart : she knew if she felt on the grass it didn't hurt her !!)the Neurologist said she couldn't go back into a crèche because we had to protect her against common virus which could have affected and slow down her recovery !!At this time, Neurologist said that the recovery may have taken from 3 to 6 months ..Twice a week she had manual physical therapyI was so scared of a wrong diagnosis !!! September 2007 : Sacha went back to crèche and made great progress. The neuro advised us to put her on crèche again because it was more efficient than physical therapy and psychologically for her, it's important she finds her previous life again !! Then, we tried to come back to a "normal life" !! We were so happy to see her stand up on their feet and walk .. we thought that she was stimulated by other children !! From October 2007 on : Sacha made very good progress. She was more stable and SOMETIMES walked almost normally !! It's a "2 steps forward 1 step backwards process" !! At this time I made investigation to learn more about PVC.. I found out that it is connected to immune deficiency disorder .. I wanted to have a precise PVC's knowledge and know precisely PVC's functioning. I met several neuro and specialists and they confirmed that the immune system is the source !!! To sum up, the antibodies make a mistake .. and instead of fighting against of a common virus they attack the cerebellum !! The fact is nobody knows why the immune system makes this bug .. this mistake !! Now it's a 1 year old story : Sacha is fine.. she 98% recovered .. if dare assess her state !! Her smile, her courage, her determination gave us faith !! Each day we prayed for a full recovery, a miracle.Now it's "over" but it seems to me that I wouldn't be serene anymore.. (partial recovery .. next decline ...)I would like to get news from your children ..If you feel like to write me .. or want more information, fell free to contact me to : audeseb@hotmail.comAll my thoughts for your little boys and your family.Aude
    Anonymous 42,789 Replies Flag this Response
  • I am so glad to hear that your daughter is doing so well. Unfortunatly my son has not fared as well. We have been going with this for over 7 months now and he is no better at all. He has had every test I can think of and things I haven't even heard of. Now no one is sure what is going on. He has to go back into the hospital for another spinal tap and MRI. After we get those results we have to decide if we are going to take the chance and give him IV steroids to try to bring the swelling down and stop the attack on his brain. Of course there are some serious risks we are taking but at the same time I feel we will be taking a risk to not do it that can effect the rest of his life. He has not gotten better on his own and he is past all the text book dates out there. I would feel much better if someone could tell me for sure that he has PVC. If they could do that then I would be alot easier with going ahead with the steroids. Now we have 3 different dr's thinking he has 3 different things but no one has any concrete proof for any of them. One dr thinks he has PVC, I dr thinks he has leukodystrophy & 1 dr thinks he has mitochondrial disease. While they try to decide what my son has he continues to fall farther and farther behind. Developentally he is testing on the average of 8 months. Up to the point of all of this starting he was on target and not behind at all developmentally. He will be starting therapy within the next 2 weeks developmental, physical & speech therapy. He is getting a helmet early next month because he falls so much and doesn't even try to break his falls. We have had so many bad falls that we are all scared. We also put the foam blocks down in our living room to try to protect him. I am disabled and protecting him is a full time job in and of itself. Please keep me informed how your daughter is doing. God Bless.
    Drumwidow 7 Replies Flag this Response
  • Drumwidow, I must say I find it hard to understand those 3 diagnosis .. how it is possible that so different diseases are envisaged ? At the begining, for our daughter, PVC (cerebellitis) was not an evidence at all !! They first thought about tumour, then metabolic disease .. As they made all the tests, they dismissed progressively the various hypothesis. In our case, the PVC diagnostic was rather a deduction/conclusion than a perfect evidence !Of course, I am not a doctor, but looking back to the various steps and exams my daughter passed by, it seems inconceivable they cannot rule out some possibilities !!I understand well now why you post on this web site "Wrong diagnosis" !!You must feel lost ..Tell me more please about your son state, gate ..
    Anonymous 42,789 Replies Flag this Response
  • Drumwidow,I must say I find it hard to understand those 3 diagnosis .. how it is possible that so different diseases are envisaged ? At the begining, for our daughter, PVC (cerebellitis) was not an evidence at all !! They first thought about tumour, then metabolic disease .. As they made all the tests, they dismissed progressively the various hypothesis. In our case, the PVC diagnostic was rather a deduction/conclusion than a perfect evidence !Of course, I am not a doctor, but looking back to the various steps and exams my daughter passed by, it seems inconceivable they cannot rule out some possibilities !!I understand well now why you post on this web site "Wrong diagnosis" !!You must feel lost ..Tell me more please about your son state, gate ..
    Anonymous 42,789 Replies Flag this Response
  • I know it sounds crazy about them not knowing what is going on with my son. We are going to the best Children's Hospital in the Country overall and ranked the 3rd best in neurology. I know that they have ruled out alot of things & for the longest time they all believed Connor had PVC but after he passed the 5, 6 then 7 month mark they had to start looking into this being something else. There are still dr's that think this is what he has while other dr's have started to look in other directions. He has shown no improvement at all in any of this. He got worse while in the hospital in January and has stayed the same ever since. He hasn't gotten any worse since January but he never got any better. They are now considering the ataxia chronic. He has passed the time limit for an acute condition. That is when everything changed and more dr's started to get involved and they started to look at other things. He has shown some demyelination spots in his MRI & that is where they have come up with the leukodystrophy. The mitochondrial disease blood work came back negative but then we kind of figured it would. Even if my son has this the chance of the test coming back positive was only 30%. We of course tried that first to try to keep him from having to go for surgery and biopsies. Now he has to go for that. He goes next week for another spinal tap and and MRI. I am praying that this shows something. I hate seeing him go through so much. He hasn't hit any developmental milestones since this all started. He has only lost skills and words that he had before. I just hope they figure this out before he falls so far behind that he can't catch up.
    Drumwidow 7 Replies Flag this Response
  • Dear DrumwidowYour trial affects me a lot because I know how you feel !! As you, I spent my time looking for answers and posts everywhere .. and I found out on the web, a discussion where mums talked about their children who had PVC !! I was terrified after reading their words because most of them, explained that their child (different ages) got PVC and after years still have coordination and gait troubles !! I was terrified thinking that Sacha might have gait troubles all lifelong. At this time Sacha was making good progress but there were irregulars (1 day she walked, the other she was weak and felt down) .. . I asked the neuro about that and he said it's typical of PVC and other neurological troubles : it didn't reassure me at all !! The important thing I leant, is no case is similar to another !! The beginning of Connor's story is so similar to Sacha's : everything started after a big cold… In Sacha's case, we are looking for a potential link between recurrent otitis & PVC .. It seems sometimes Oto-rihno problems can be the cause of an Acute Post Viral Cerebillitis) While Sacha was seeing a neuro she was also seeing an ORL .. No serenity anymore : last month, Sacha had ear infection (otitis) again and fever .. the day after she had gate troubles again !! I was scared because since few month she recovered 95% !! I thought a new acute PVC phase was about to start !! Rush to the doctors .. he gave antibiotics, and 2 days after, she was ok and could walk normallyNow, we are thinking to operate Sacha's ears .. I do not know the name in English but the operation consists to put drain in ear in the way to avoid recurrent otitis .. If it might have been a connection between Sacha's ears trouble and the PVC syndrome, this could help to put an end to this situation Never give up Drumwidow !! Never lost faith ! I will pray for Connor tonightAll my thoughts are for youGod bless you
    Anonymous 42,789 Replies Flag this Response
  • Drumwidow,I am not only extremely concerned that it appears that you still do not have a diagnosis, but that people here are steering you in what I believe strongly to be the precise wrong direction. Your description of your son sounds exactly like opsoclonus-myoclonus. In fact, there's not much else it can be. I urge you to google this today and read about it. It usually takes awhile to get the diagnosis because the vast majority of doctors and neurologists haven't even heard of it, but seven months without diagnosis is even longer than usual.A good place to start for information is here:http://omsusa.org/pranzatelli-Brochure1.htmAgain, I urge you to start researching this illness today. Please, for your child's sake. Time is of the essence, and seven months is an extremely long time to go undiagnosed.
    Anonymous 42,789 Replies Flag this Response
  • I wanted to add, in case you need further convincing, that not only have you just described perfectly what happened to my son at the age of 18 months, but you have described to perfection what ALL parents of children with OMS describe at the onset of symptoms. Your son's case is textbook from start to finish. There is no doubt in my mind that this is what your son has. This isn't a 'maybe' or a 'hey, something similar happened to me, so it could be this' or 'i have a problem with cell towers, so it's probably cell towers.' It is OMS. And praying is not going to help your son; he needs treatment IMMEDIATELY. Every minute you spend praying is another minute that his immune system is attacking his brain.I am sorry to frighten you, and I know that I am, but I am extremely upset that you are getting such god-awful advice here, and god-awful diagnoses from your doctors, when every second counts right now.If you'd like, you can email me at ofthrees yahoo com and I can point you in the direction of a neurologist who has devoted her career to OMS. She is not near you, but she might be able to refer you to someone.
    Anonymous 42,789 Replies Flag this Response
  • I have to say I agree with her. Your son has been though so much and when I read your story 3 month ago I swore I was reading my own story of my son. I did send a e-mail to you 3 months ago and suggested this could be OMS but I never heard anything back . Did you talk with the doctors about OMS. I think this is something that should be address because time is so critical on the outcome of these children. The longer the brain is under attack the worst and the sooner treatment starts the better the the long term outcome. Like i said you are more than welcome to contact me anytime. I would even be willing to talk with you over the phone if you sent me your information to my e-mail tarawoodman@comcast.net I hope to hear from you soon and I will pray for you and your family. This is a urgent matter if OMS is what your son has but the story sounds to much the the rest of OMS familys. Tara Woodman
    tarawoodman 4 Replies Flag this Response
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  • I have to agree that I REALLY does sound like OMS from what you are explaining. With OMS it is so important to get treatment started right away. I am not sure if you ever visited the website that I gave you www.omsusa.org and read up on it. Did you ever mention OMS to the doctors ( they may not even know what it is) My son went 12 weeks misdignosed and to date is doing well on treatment. If you want you are more than welcome to contact me at tarawoodman@comcast.net I have try to contact you though your sons website but I have not gotten any responds so I am not sure if you are recieveing them you could also contact me though my sons website at www.makhiwoodman.blogspot.com I check it often. I hope to hear from you. Your son is in my thought. By no means and I a doctor it is just my gut and your story is a carbon copy of my sons Tara
    tarawoodman 4 Replies Flag this Response
  • I just wonder if he has vision problems,like double vision, that make it hard for him to keep his balance. Or problems with his inner ear. Can he hear okay? Does he tilt his head? Does he ever seem clumsy, reach for things and miss, walk into things? If you put a patch over the affected eye, would he be able to walk normally? It sounds weird, i realize, but if he is seeing double he could have quite a hard time walking, and it may be worth trying, though it is definitely a long shot.
    qwertyuiop123 453 Replies Flag this Response
  • In late here - I've just been diagnosed with cerebellitis myself. Any progress or update from the original poster?
    Anonymous 42,789 Replies Flag this Response
  • My name is Andre Felipe and I am from Brasilia, Brazil.Unfortunatelly, my 2 and half year old son has caught this cerebellitis. The symptons are pretty much like yours sons has presented.It started last october 16, 2008, with a two epsodes of nausea (vomit) and a mild fever (38 celsius). 6 days after that I started to see the ataxic movements. I had sent him to medical doctor and a few ours later we had the diagnostic of cerebellitis, which we had never heard of before, of course.In five days he could no more walk or sit. And even his little speach was lost, transformed in only bla-bla-bla without any sense.Like the cases I saw, his doctor had not prescreved any medicins. They said that it would go away in a short time.Well... after those 5 days he stabilized, with no more worse than that, and I started to see some little recover.Today, 2 months after, he can walk again, talks almost like before (a little slowly, but ok). But I think he can't get those 1 to 5 percent that is faulting. The walk is not normal, is just better than nothing. We don't know if he will run in a few weeks, for example.Other than that, he started to show a little strabism in the left eye and is being taken care of with an eye occlusor.His mental capabilities seems to be normal. In fact he is very good in solving puzzles, for example. Even better than his 4 y/o older brother. The Only problem is the trembling hand.I would like to hear from you and others parents who has passed through the same problem. For what I am reading, this disease will not just go away like has never been here before. For what you are telling me, my Ivan will have some problems for a long time. I really hope otherwise, but I don't want to be waisting time waiting for something that will not be true. I want to do something to help my son to get better like he was someday.My email: afelipe.carvalho@gmail.comThank you very much! Merry christmas and happy new year!Andre Felipe
    Anonymous 42,789 Replies
    • December 26, 2008
    • 07:41 PM
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  • Hi, I've been ill since April with cerebellitis, but just finally had some light at the end of the tunnel. My neurologist prescribed me a steroid called dexymethasone and it's been magic. I'm nowhere near how I used to be - but I have energy, I can exercise, I'm alert, my apetite is back. I literally feel like I've gone from being dead to back to life again. You might want to suggest it to your neurologist, see if he has any thoughts. Good luck! Mac
    Anonymous 42,789 Replies
    • December 28, 2008
    • 08:12 PM
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