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Posts (244)

1 day ago · New born with orthopaedic problems: cleft palate and club foot in About Kids & Teens

I am pleased that you have talked to doctors already. I am sending links to sites where you can learn more about these congenital problems.It is very important that you follow the recommendations of the specialists that are going to treat her leg. Also important to get assistance from doctors and nurses to help her feed before the lip operation.



2 days ago · New born with orthopaedic problems: cleft palate and club foot in About Kids & Teens

@antaripa143 – Welcome to the Mayo Clinic Connect site! Congratulations on the birth of your daughter! I understand you are concerned about the abnormally of her face and leg. First- have you spoken to a pediatrician yet? Are you at a local hospital or a larger university medical center? From the pictures it looks like she has cleft lip and cleft palate as well as a so called club foot. It is going to be hard for her to nurse and feed with the mouth. She needs to see a specialist surgeon for this. They will plan to close her palate and lip soon so she can feed. There are also special feeding bottles for babies with this problem. She also needs to see a pediatric orthopedic doctor to treat her leg/foot. I think they need to put it in a cast to straighten it- I’m not quite sure though. What is important is that she will be able to have a normal, healthy life!!
Both problems are not very rare and doctors nowadays are very skilled to fix them.
Please let me know when you have talked to the doctors! Again, congratulations and best wishes to you and your wife!

4 days ago · Trying everything - Sick of feeling sick in Digestive Health

@januaryjane– are you home now or in a hospital? What kind of surgery might make you better?
Again- do you have access to a psychologist or social worker? It’s always good to have someone else close by knowing what you are going through.
I understand what you mean talking about birthdays. For so many years when I was not well I would predict at New Year’s that the new year would be better. Finally I stopped being so positive and I knew it would be another bad year- except that was the year both my major problems would be treated!
Science came through and offered a treatment. That’s why I don’t want you to give up- there is always a possibility that your turn had come. It is difficult for you with different ailments that may involve more than one specialist. If you don’t have the strength to push forward maybe there is someone that can help you organize a way to get your doctors to talk to you about options.

4 days ago · Trying everything - Sick of feeling sick in Digestive Health

Dear @ januaryjane – I understand your feelings of being burnt out. You are so young! My daughter- close to your age/ has been going through a similar ordeal- she ended up at home with us- it’s not easy. Her father is somewhat similar to yours. Her main illness is gone but other autoimmune problems popped up- so it is still a struggle. She is working now- I think this has helped her moving forward and dealing with her health problems. She doesn’t have enough income to move out, which is my goal for her. I’m also dealing with chronic illness that has drained all energy- even now after I was cured – autoimmune illness of course. I see a therapist once a week. Do you have opportunity and funds for that?
May I ask what kind of surgery you might have?
Are you able to live independently? Somewhere with convenient public transportation to get everywhere you need to go. Have you applied for Disability? Maybe talking to the Social Services office to find out what services you are entitled to. I know you are tired, but you are the best spokesperson for yourself. Same with me. I would sit here and rot if I didn’t force myself out there. Write down your goals and deal with one at a time.

6 days ago · Colitis – Microscopic/Lymphocytic/Ulcerative in Digestive Health

@washalien – You have been sick for a long time- I know how that feels. Life passing by so fast. I had collagenous colitis initially and later on nondescript patches of inflammation throughout my GI tract. At first there was a trial of medication elimination, food elimination- no change. Budesonide was the best except for prednisone. By the way, I had breast cancer many years ago. I had severe intestinal reaction to chemo which finally was thought to have caused my chronic microscopic colitis. I decided to try immunosuppressive medication because I just could not live like I did. I was on it for several months and it worked. I got monitored monthly. I did have many infections, which is why I stopped it.
I’m happy it worked

Thu, Jan 16 7:57pm · Autoimmune mystery in Autoimmune Diseases

@horselover7216 – Hi! I have followed your posts and conversations. I understand that you are very sick with possible autoimmune encephalitis- correct? I’m so impressed with your detailed posts- it must be very hard – but you are angry and that helps you trying to find out how to get better. Encephalitis of any kind will cause panic in your central nervous system. I also understand that all testing you have had still does not pinpoint the cause. I had hallucinations like yours once/ after a surgery where I from unknown causes got fluid in my lungs and less oxygen to the brain.
The impression I get is that you don’t understand why you get all these problems- such as inability to urinate and fecal incontinence in addition to everything else. What I would do- if I were you- is asking the doctors- especially the neurologist- why each symptom occurs- write questions down and write down answers- or have someone write for you- so you can go over these answers when you get confused and angry. I so hope for you that you get back to normal soon!!

Wed, Jan 15 5:09pm · Pituitary tumor symptoms: joint, muscle and body aches in Neuroendocrine Tumors (NETs)

@khauert – Thanks for your detailed answer! First of all- you will eventually find out what’s happening to you when you see the Mayo doctors. Your story sounds similar to my daughter’s story. She was healthy enough through high school – competitive swimmer too. In college she first got very sick with mono -2 nd time. She started to put on a lot of weight- she was eating a lot and no exercise. In her teens she was diagnosed with fibromyalgia. It got much worse in college. Had to stop swimming, received lidocaine infusions. At the end of high school she was diagnosed with depression. After college she moved to FL for work. Dx bipolar disorder. Big weight gain, hypothyroid, diabetes, infections. Finally, her psychiatrist (!) diagnosed her with Cushing’s disease. The same week she had seen her endocrinologist for diabetes who yelled at her for being fat, she saw her internist and cardiologist- she had tachycardia and cardiologist just put her on medication without wondering why.
Anyway, we helped find a superb endocrinologist- diagnosed pituitary adenoma- Cushing’s disease- with excessive cortisol production. She was then referred to a dedicated pituitary center at a major university hospital. Tumor removed.
This shows how our bodies can fool us and why many people don’t get diagnosed for years. It is great that you will go to Mayo!!

Tue, Jan 14 5:34pm · Recent gallbladder surgery in Digestive Health

Hi @genocurt – I think you are correct in that the nerves may be inflamed from the procedure of removing the gallbladder. It should get less and less with time. Isn’t it nice not to have those symptoms?!