Residual Symptoms my 16 yr. old daughter continues to have

Linda –
Your daughter and I are twins! (with the exception of lots of years – I’m 58) I, too, was diagnosed with GBS on Christmas day, 2009. What a gift. I did not come home until the last of February having a long stay in a rehab hospital. Nothing but 3 fingers worked, and I took weeks to move my legs, slide off the bed to a wheelchair, then stand and finally walk, tiny halting steps. I had to relearn how to brush my teeth, wash my face, eat – everything. It was awful. But humbling. If yo sort under “Members List” you will find me in the C’s – read my posts and replies to others to see my progress. Right now I am walking with a cane, and a little without. For a great story check out my entry “Prom Night” – and see my dancing! 🙂 It was beyond wonderful. I take lots of meds – my neuro won’t consider taking me off them, nor can I imagine being off them. The Baclofin keeps me from cramping – neurotin stops the tingling pain – oxycontin keeps the other pain at bay. I’d never sugest putting a teen on narcotics, but the first 2 might be a consideration. I am just now getting along with one afternoon nap a day. Every once in a while I have to spend a whole day sleeping – rarely I can miss my afternoon nap. The key to GBS is to take it slowly, expect exhaustion and give in to it. The residuals come and go – they really aren’t a relapse. My neuro told me it takes a year to recover. I know my age is against me, but jessicah who posts frequently is much younger and she is still in an active battle. Her GBS was in Nov of ’09, so she is pretty much on our schedule. Her case was much lighter, too – and her treatment not much different than your daughter’s. (I had plasmaferesis – 5 sessions over 10 days). Please tell your daughter patience is the key with this. One member calls it Getting Better Slowly, and she is right. I teach high school so I understand how much our teens want it NOW, but this disease hasn’t read that book. I am hoping, praying, trying to convince my neuro to go back to my classroom when school starts in August. I am considering taking naps in the nurses office during my planning period, or lunch. We do what we have to do. Convince your daughter to spend this summer resting and getting better. Feel free to contact me any time – either by replying to this thread or through the Private Message option (its easy) I check in every couple of days, sometimes every day.
Good luck to you and your daughter! I’ll put you in my prayers.

PS – be sure to watch new posts, main forum and GBS Adult – they have LOTS more posts, and people will see your posts and reply. Not too many of us go out to Teen. I found you under New Posts.

Linda,

I had mild GBS after the H1N1 vaccine in November. No IVIG or any treatment since I was mobile the whole time. I had severe nausea, loss of appetite and lost 25 lbs. Severe pain in my calves and biceps. Tingling, numbness, hypersensitivity, muscle twitching, etc. Lost reflexes and had arm weakness. I had autonomic issues, low blood pressure, lightheadness, facial flushing, etc. My full story is under the vaccine forum.

I am 6 months post and still have muscle twitching all over, muscle pain all over, etc. The feeling of fullness and loss of appetite you describe sound like gastroparesis, which is what I have as well, but I didn’t have the fullness. It is from damage to the vagus nerve. The gastro doc I saw did an endoscopy and said that it should resolve over time. I take the generic version of zofran which is ondansetron (anti-nausea med) to help on the days that the nausea is worse and miralax to help with constipation problems. My digestive system has gotten much better over the past 6 months, but there are still issues. I have gained 10 lbs back. There are other meds to take, but I would stay away from Reglan.

It sounds to me that what she is experiencing is residuals. I was very paranoid and still am about a chronic condition, but you just have to keep an eye on it, especially for weakness. Has she had any follow-up EMG/NCV’s? That would reassure you that there are no continuing problems. I am working full-time and living somewhat of a normal life, but I struggle daily with pain and fatigue, which are residuals. Over the counter meds do nothing for me as well and I do not want to take cymbalta, lyrica, etc. I took cymbalta one day and went to the ER for an adverse reaction. Xanax an anti-anxiety med actually helps with some of the pain because it calms you down. I only take a small dose (.25) on the days where the pain is worse. Another member who also had a vaccine reaction has been taking a supplement, Longivinex, (order on the internet) which he says has been helping. You might want to look into supplements and vitamins. Alpha Lipoic Acid is another supplement which helps with neuropathy. I was taking this for a while, but did not see any dramatic improvements.

I have been going from doctor to doctor to find some relief and get some answers with no luck. I think your daughter will continue to improve, and try not to get frustrated. Just compare today to 6 months ago and you will see the improvements, however small they may be. Good luck!

Linda,

I forgot to comment on alternative medicine. I tried acupuncture once and it helped calm me, but not with my symptoms. I also tried homeopathy and I am not sure if it was the homeopathy or an MRI that I had, but I subsequently had a headache and dizziness for a month. Chronic headaches daily and a buzzing in my brain, so I do not recommend that route. Some people swear by acupuncture. I have been wanting to go back, but have to pay out of pocket, and my bills have mounted not to mention we need a new roof, etc. so I am watching this. There is no harm in acupuncture so she may want to try this. It was very relaxing. Carolyn, who posts on here frequently, knows a lot about holistic and natural remedies (and is an Armand Assante fan like me, inside joke :).

Hope that helps.

Hello and welcome to the site. I am not a teen (more than 50 years old and a university professor at a medical school). I am three years into this process and I would like to encourage your daughter that it does get better. I had severe fatigue and lots of leg pain–that seemed to happen when I tried to be normal and ended up doing too much. For me, since I did not want to take any narcotics either, rest was the best help–getting completely still for about an hour in the late afternoon preferably with a nap–made a world of difference. The pain would go from severe to okay. I also had terrible neck pain. I saw a physiatrist (rehabilitation specialist) and he said that it was myofascial pain. It happened because of neck muscle weakness and not holding my head up well, but it made my neck hurt very badly and I had a severe headache for weeks on end. He did a trigger point injection and this and being careful how I help my head made a huge difference very promptly. I would like to say that now after the three years, fatigue is better and I do not have to take a daily afternoon nap anymore, but I still do better to lie down then. I have continued to work through all of this. It is hard to not be able to do what I used to do, but I continue to improve and just recently have passed a point of being able to walk normally about half the time. Healing is slow. It takes a lot of patience.

My suggestions for your daughter are to keep active, but to maybe think about keeping a journal for a while about what she does and see if there are any identifiable activities associated with the severe pain in the legs and elsewhere–I would guess it happens when she does a lot or pushes over “tolerance” as it is at this time. Lots of people including many physical therapist recommend lots of activity, but in GBS–one cannot do too much. You have to be gentle with your body as it heals or one will get lots of pain.

For me, Cymbalta has helped a lot with the pain. I also take naprosyn (Aleve). I take coenzyme Q10 and acetyl-L-carnitine at the direction of my neurologist and these seem to help. The nerve damage pain is not supposed to be relieved with Aleve, tylenol, or Advil, BUT it seems to help me with the severe achiness that seems more to have come from overactivity (for my current abilities as I went through this). Neurontin, Cymbalta, Lyrica, and other such medications will help nerve pain–but any one may not work in an individual–or stated differently–one may work in someone and not in another person.

Best of luck. WithHope for a cure of these diseases

Linda,

I too had severe leg pain 4 days after the vaccine, shooting pains so severe that I was almost crying. The difference is that I was always walking the whole time and my symptoms came on more slowly over weeks instead of hours. Then I had severe pain in my calves and to this day, it comes and goes. I cannot crouch down without getting pain. My theory is that maybe it is related to the loss of reflexes.

Be thankful that your daughter got IVIG. I think that will help her recovery time to be shorter. There is another member on here that developed his symptoms after the H1N1 vaccine so that makes 3 of us now that I am aware of. He has a lot of gastro problems as well and when he went to the ER, the doc told him that a lot of people were coming in with gastro issues after the vaccine and muscle twitches. And they want to put the H1N1 in with the seasonal flu vaccine in the fall? We are going to see an increase in GBS cases.

I have had no help from neuros either. I think that they have not encountered this before, and they do not have a good understanding of residuals. Please keep us posted on how your daughter is doing.

Linda –
I’m sorry it has been a while since I last wrote – I, like WithHope am way too busy for my own good. But, I keep telling myself that is good. I am so excited that I have walked around my house all day today without my cane, so I know I am getting better. I also am taking the stairs like a normal person, instead of the single step like little children do. I still try to limit my going up the stairs very much – a couple of times a day is all I can do or I tire too quickly. I am still at the nap in the afternoon stage. Please, please tell your daughter this is the time to be good to her body – rest and listen to what it is telling her to do. She and I are only 6 months into this and we still have a long road ahead of us. I just hope I’ll be go to go when school reopens, because I did not see my classroom after Christmas. I will have my husband drive me up in July and start to get things together. But mostly, summer is the time to rest and recover. This is a crummy disease and most of us never know what caused it. In your daughter’s case it could have been the H1N1 vaccine – but who will ever know? I will never have another flu shot of any kind, nor will my husband. But my daughter in law (all 3 of them) are nurses in the hospital and they plan to continue to have them. Do NOT feel guilty about your daughter getting the shots. We trusted and followed the guidance of our PCPs and World Health. Oh, well, now is the time for patience.

In answer to your question about this site – just keep checking the adult site, or the general info and respond to those postings that are of interest to you. If you want to create a new sign on I’d do it on one of those two sites simply because more people check them. They are just catching this thread because it comes up as a “New Post” everytime someone adds to it.

Folks are wonderful here. I am so glad Jessica H got back with you, too. She has all sorts of great advise and she is at about the same stage your daughter and I are. You will find folks you enjoy reading, and those with lots of good info. I have found lots of good stuff on the CIPD side, too.

I know WithHope does not use meds much. I couldn’t live without mine – the pain would be unbearable and I would not be able to walk well at all. I know because I have missed a dose a couple of times (been out of the house) and it was awful..I now have a pill box in my purse for such emergencies. Your daughter won’t be able to do that when she is in school, but for heavens sake, go pay the school nurse a visit! Take printouts from this site – educate her.

Enough – I must go make dinner. Thank God I can even do that. It is still very simple but hubby doesn’t care and I’m glad to be cooking again.

Please, get some rest yourself, and quit worrying or blaming yourself. Be gentle there, too.

PS – my best friend lives in Brockport – it is beautiful there.

Linda,

Cathie is right. You cannot beat yourself up about it, letting your daughter get the vaccines. You were only do the right thing as a mother. That is what happened to me. I got the vaccine for my 2 kids and then myself because I didn’t want to get the flu and not be able to take care of them. I am more upset about the fact that I did not get IVIG or any treatment due to medical incompetence than I am about getting the shot. It is water under the bridge now. So many people get GBS from viruses, the flu itself, etc. Your daughter is young and she will bounce back. I spent time stewing about the fact that I got this vaccine and what has happened to me, but it is negative energy and not productive. I am trying to focus on the future and how to address my current problems. Hang in there.

What you are expeiencing is normal,,I today still have trouble with my legs,and I have to still take time to rest. Your eletric pain shooting up your legs is the healing,,yes it is painful but look at it as healing,,it will take about 3 years to feel like you are now fibe,,,you will have residuals,,I believe my legs are mine because the GBS started in my feet and legs and then preceeded up and theb left coming down therefore the damage was in my legs the longest…..I feel sensitivity to heat and to cold in my legs,,,there are times when my feet still turn purplish,,,,,my memory has been somewhat shortened,,,but you will become a lot better,,,,

Neurologist unless experiencing this themselves have no clue, because all news pertaining to GBS refers to a complete recovery and that is not so,,,,I had a neurologist tell me GBS never starts inthe feet,,,he actually was quite sarcastic about this,,What you are expeirencing sounds normal,,,,now what I took was neurontin,,,and xanax for my nerves and nerve painou will have anxiety,, your body has been sick, very sick,,In the middle of th week, I would go to bed right after work and sleep until Thursday,,,the most important thing is rest,,,,rest,,,you will get fatigued easily for a long time…hang in there,,,you have been very sick,,,and you do not need a doctor tell you what you are experiencing or not,,,this forum helped me more than any doctor….WE LIVED IT,,,we didn’y read about it in a book…

I wanted to write three thoughts, but life is so busy.
First and foremost–each of us has to make the best decisions we can with the information we have at any point in time and we do not know the future. Try very hard not to be guilty or angry at yourself about the H1N1 flu shot. You made the best decision you could at that time. I think of it like driving. Getting GBS is incredibly rare, but having a car accident is pretty common. Do we not drive or ride in a car because of that? Life would be really hard if we did not. Flu shots help us, but they also help others around us. the HINI flu is a potentially scarey one. Yes, it is not as bad as it was projected, but for some young people, it was fatal. It is also likely to be the basis for flus in the next few years–so immunization for this “different” flu will help in the future–this is why in part the young were so sensitive to it–because there has not been a flu like this for a long, long time and us old timers already had some immunity protection based on the old exposure.

Second, there is a lot of controversy about flu immunization after GBS. Each person needs to make their own peace, BUT realistically there dose not seem to be added risk of GBS for those who got GBS from other events. And yes there may be a couple to maybe really rare number of cases of second GBS after a flu shot when the first event was not a flu shot, but it is really rare. There ARE cases of GBS again after a flu shot if the first GBS was after a flu shot. The neurologist argue that the antigens for the flu are so different each year that this is a very, very unlikely event. Personally I am not sure of this, since it is not just antigens but also the background on which they are presented (HLA of the person). If it were me, I would be leary of flu vaccination for flu viruses like H1N1 in the future ONLY if I got GBS after the H1N1 flu vaccination.

Third, each of us has to make peace with how we live and what we do. I work in an area in which I need my brain as sharp as possible and I will not take narcotics and work (and I work a lot). I also chose not to let pain or medicines control my life. This does not mean that there is not pain. I had in the past lived with severe pain for about three years (for another reason). I could not eat solids for months, I walked on my tip-toes because walking caused severe pain, I took aleve and tylenol and often slept two and half hours and then waited in pain until I could take something else to be able to dull the pain enough to let me be able to sleep again. That is hard when it goes on for months and months. I understand the pain, I just chose not to allow it to rule my life. I chose to live as fully as I could and deal with the pain with other ways. This is not a statement that medicines are not good, it is just that it is important to remember that 1) there are lots of other ways to help with pain and 2)that the most important point of all is to live life. the reason that I say this is that in this day and age, lots of people think that medication is the only way to deal with anything wrong with the body. It isn’t.

I do not say this in any way to bother anyone or act like I am stronger than others because I am not. I just think that each of us has to find a way that works for us in order to keep living life. This is different for each person because each person and each situation is different. Medications are a great accomplishment and play a vital and necessary part in recovery–just they are not all of it and what each person needs must to be tailored to them. I think that the most important points that caused me to say this are 1) there are choices other than pain meds, 2) that living life is the most important, and 3) that for many people one of the things so very hard about this illness is the loss of control in life. I could not make myself walk normally (although I tried), but I could keep pain from being number one in my life. This did not make it go away, but it helps keep it from taking over and ruining what was important in my life and it has helped me to keep a positive attitude and to keep trying. It is easy for pain to do that, because when it is severe, it feels consuming and it feels like it will never improve. Each of us has to come to some peace about all the changes that happen and pain and fatigue. Don’t give up and don’t stop living life as fully as you can at each point in life. People do not have to choose to fight one aspect of this illness (as I did pain) and each person is different, but it probably DOES help to fight to live as fully as possible however each one has chosen to do it.
WithHope for a cure of these diseases

With Hope,

Thank you for sharing your journey and your thoughts. This is helpful.

Dear Linda:

As a mom with a daughter who had GBS I know how frustrating and how difficult it can be to watch your beautiful, active daughter go through all of this. I am here for you.

My daughter, Natalie had GBS-Miller Fisher Syndrome when she was 3 yrs. old. She compensated for her loss of reflexes and found her way with activities that were physical. However, when she turned 12 yrs old and her hormones were changing. The fatigue was overwhelming for her, she slept close to 18 hours per day and felt like she had ice picks being driven into her wrist, ankle and neck joints. She had constant headaches and was unable to sleep. She had to be home schooled as she just did not have the energy to get through an entire day of school. It was awful.

Eventually, she did gain some of her strength back but it took sometime. She started University 3 years ago and of course was sick at the beginning of every quarter due to the close living conditions and stress. This year she just went through the removal of a brain tumor in her pituitary gland.

Please let your daughter know that it does get better, but she may always need to be a little more careful than most of her peers, making sure she gets enough sleep, etc. By the way, we found Green Tea capsules help tremendously.

I hope all of this helps and if you need a shoulder to cry on I am here.
Cathy

Linda

We took my daughter (she was 18) to the emergency room on Christmas Day 2011. She was diagnosed on the 26th with GBS. She was hospitalized for a little over two weeks. She also had the IVIG treatments and was up and walking after about 5 days. However, the residual symptoms have been lingering and worrisome, jaw, ear, and facial pain. To tell you the truth, it is hard to talk about. Your post sounded similar to our situation so I thought I’d let you know. I did notice that this thread is a few years old so I hope you find see this and it finds you in a better place now.

Jerry