new and confused
AnonymousMay 26, 2007 at 12:02 am
My two year old son Christopher was diagnosed with GBS on May 17th 2007. I had to rush him to the hospital on mothers day (of all days). He is still on a respirator, and they have him on methadone and ativan (sp?) because his blood pressure and heart rate are very erratic. He has been undergoing plasmapherisis for almost a week. I have many questions…but right now, I guess the most important is for any of the parents who have kids with GBS. Does GBS mess with the mind? I mean, I understand it messes with the nerves, but does it impair brain activity? The doctors have told me that until he wakes up, they won’t know. But they keep him asleep on purpose. It just doesn’t make sense. When he does wake up, which is only for a few minutes at a time, he seems very disoriented and looks past me…I guess it could be the drugs…but I just need to know if he will wake up and remember me and daddy and his sisters. Can you help?
AnonymousMay 26, 2007 at 12:44 am
Oh Becky ~ I am so sorry! I’m glad that you found our “Family” and hope that you will find comfort, answers and support. I do not have a child with GBS ~ it’s me! Any life challenging/changing experience can bring thinking issues. Your child is very ill but as he gains strength and vitality his mind will clear also. Never stop telling him how much you love him! He can hear even when he appears to be in a deep sleep. Oh yea, medications can do strange things to our bodies also. GBS ~ getting better Slowly.
I will keep your family in my prayers.
AnonymousMay 26, 2007 at 8:13 am
hi becky & welcome,
mostly now it is the meds he is on. later during recoverery, which he will do, gbs may cause slight, temporary clouding of the mind, but it not severe & will go away. it is nothing like you are thinking & he will know you, his surroundings, etc. take care. be well.
gene gbs 8-99
in numbers there is strength
May 26, 2007 at 11:03 am
I am so sorry about your son, I have a ten year old boy named Kevie who was dx in 10/06. Keep reading this sight, you will learn multitudes of information, more than even doctors know. Regarding your questions of the mind, Gbs does not cause the cognitive process to go. I have read on this sight that hallucinations while at the worst and on a ventilator are not uncommon. Methadone most definately could be the cause of him not recognizing you. Kevin had valium to get him through an lp and he was in another world. I was curious, you seemed to be saying in your post that he is in an induced coma, I have not heard of this. Is it because of his age? I was wondering why they chose plasma pheresis as a first treatment especially since he is so little. Kevie had ivig for five days and within the first 24 hours was significantly improved. The ivig did have its own side effects but it was tolerable.
Read all of the posts, you can learn so much that may not be pertinent to your situation currently, but may be of interest to you in the future. If you do get ivig for your son, try to remember to tell the Drs. you want a very slow flow rate. The highest Kevie wnet was 50, anything higher was awful. My heart goes out to you and if you would like to talk in person email me your phone #.
Most importantly, if you do not feel confident in the Dr. diagnosis, line of treatment or most importantly over all knowledge, please get another doctor, we went through two before I found our current one.
Be prepared for confusion and ups and downs. It is a long patient journey. Take care of yourself, I did not do this! Let family members help and rotate shifts, I did not! I was so sleep deprived and not always on my “game” . You have to be, so take help when it is offered.
I do not know about your insurance and deductables, but here are some mistakes I made. The doctors on the floor know little to nothing about gbs, they would walk in ask how Kevie was I would ask a question they would say I don’t know ask your doctor and I recieved a bill for it 350$ to be applied to my deductable. Before a doctor walks in, if you don’t recognize them ask who they are and what their purpose is and tell them to leave if you are so inclined because you do not want a bill. Co insurance payments add up. If you are in a teaching hospital, you CAN refuse students and residents. I did not find this out till the 10th day in the hospital. If you need something ask once, demand the second time, I was too soft. Regarding proceedures lp in particular, DO NOt let a resident do it, we had four failed attempts it was awful and painful! Next time I would ask that Kevie at least be in twilight or maybe have a scope guide them (I would imagine that is possible)
Start a huge binder and organize everything. I have a question section, article section, procedure section, records section, phone numbers, timeline, and symptom/reaction section. I also started a daily diary noting times, dates,procedures and reactions. I do not know if there are lot numbers for plasma pheresis, but there are for ivig, I learned to save this info from this forum.
What was your childs trigger, I also learned from this website to make sure things are documented in charts, insist on it. For instance if the trigger was vaccine related, have the doctor note this for future reference.
Only a couple of more things, I promise. $85 later, someone told me when requesting records, allow your physician to recieve the records at his office and then you do not get charged, the med rec, dept. waives the fee. Oh yeah, something really stupid that might not apply to you, but it did me! TAKE YOUR SHOES OFF AND LET YOUR FEET AIR OUT!! I only took my shoes off to take a shower, I even slept with them on. Well days after we got home from the hospital I had five plantar warts on my fewet. The Dr. said it’s a virus that could be brought on by stress or conditions ie not airing you feet out!!!
I hope I was not too forward or overbearing, I just made so many mistakes because I did not know any better and I would like to help you! Good luck to you and your family I will pray for you all. Dawn Kevies mom:o Email me a private message if you would like to talk!
AnonymousMay 26, 2007 at 11:40 am
Hi, my daughter (just turned 12) came down with GBS on Feb 7 07. While her case was not as severe (never on vent, etc), she is back to normal as far as mental functioning. She was a little ‘cloudy’ for the first month or so, mainly due to the overwhelming fatigue. She is not physically recovered yet, cannot walk unaided, but we are seeing some really promising signs. She is back in school and doing really well, so I can assure you in our case, and in other cases I know of, there is no impact on the brain. (Aside from, as mentioned, fogginess from fatigue and temporary side effects from drugs).
We’ll be praying for you & your son. Hang in there, and as Dawn said, try to take care of yourself, too.
PS, if you haven’t yet, please request the materials packet from the gbs foundation. More info than you’ll get from most docs. Also, there is a good book on Amazon.com called “Guillain-Barre Syndrome” by Dr. Gareth Parry, neurologist and gbs specialist. It never ceases to amaze me how little the docs/nurses seemed to know about gbs (not all of them, but most were very uninformed).
AnonymousMay 26, 2007 at 11:46 am
I have a friend who had gbs as a young man, in the early 80s. He was very severely affected, completely paralysed, on a vent, sedated, plasmapheris, etc–in hospital for a year (including rehab unit). I say this not to scare you, hopefully your son will get better sooner. The reason I mention my friend is that he is 100% recovered, has a wife, family, is a business owner, physically active. In fact, I never knew he had gbs until my daughter got it. It took him a couple years, but he says after that, he’s been fine. When you get scared, it sometimes helps to look at the success stories.
AnonymousMay 26, 2007 at 7:50 pm
My daughter has CIDP. She was originally dx’d with GBS on Dec 30, 2005. Her case was not as severe as your son’s case & she was never on a vent.
First off, I want to tell you that it is going to be ok. I know that you are scared, confused & overwhelmed. The people here are great & will help you through this process.
You’re going to read alot about adults with GBS/CIDP on this site. While reading it, I want you to remember that they are adults & you have a child. While the disease is the same, the recovery is usually different for children. Kids generally recover MUCH better than adults do. That’s because children’s bodies are more resilient than adults.
It’s going to be a long process, especially if he’s on a vent. They will probably want to slowly take him off of it and there may be a few times that he will be almost off but then need to spend more time on. That is completely normal and happens to many people.
What state are you in? Maybe there is another person with GBS near you that can help you through this time.
I’m actually very surprised that the dr’s are doing plasmapheresis on your son. Usually, in children especially, the first line of treatment is IVIG. IVIG is made up of plasma from blood donations. It is put through an extremely thorough cleaning process to remove any potential diseases. It is regulated by the FDA and very closely monitored. I would advise you to ask his dr’s about this treatment.
DO NOT do steroids as they have been found to make GBS worse.
Make sure that you talk to your son. He can hear you & he is aware that you are there. Can you bring in his favorite stuffed animals or blankets from home? Make the hospital room feel as comfortable as possible to him. You can bring his favorite books & read to him. And also bring in a CD player from home & play some music for him. We did that with Emily & it made her feel SO much better. Most of all, make sure that you touch him alot. Hold his hands, rub his head, arms & legs. Let him know that you are there. It will comfort him to know that mom is nearby.
Good luck & let us know if you need anything,
AnonymousMay 29, 2007 at 11:38 pm
My heart totally goes out ot you and your son. I can sympathize so much with you. My 4 year old daughter, Abby was hospitalized for most of the month of October, 2006. It was a very difficult time for our whole family. I also had a 5 year old son and a 7 month old at the time. If you have other children, make sure they understand what is going on, as when your son goes home, it won’t be such a difficult transition for siblings. My kids visited every other day and that also helped keep Abby’s spirits up.
My daughter was never sedated as your son is. That must be very difficult, not being able to actively communicate with him. My daughter never had any fogginess, she was just very cranky, and irritable, and why wouldn’t she be?!
Everyone has given you such good advice. My advice would be to make sure that your neurologist knows what he is talking about and has dealt with it before. If not, find another one. Believe me, I know that is easier said then done. Educate yourself to the best of your ability. A lot of hospitals has computers with Internet access available to parents, take advantage of that. Also, make the doctors speak to you in terms that you can understand. There is nothing more annoying then when drs. use medical terms and the parents don’t understand. I was lucky in this regard, I had a physician friend who worked with a lot of GBS patients who helped explain everything to me. Most of all take care of yourself . My husband and I would take turns spending the night at the hospital, so one of us could sleep in our own bed (even though we had to get up with the 7 month old!) We could also have some time with our other kids, and sit in chair that was comfortable! This was all easier to do when Abby was in the rehab phase of her hospitalizatoin. When she was in the acute phase, we were both at the hospital during the days, and one of us would come home at night. Even when you are at the hospital, do what you can for yourself. Read a good book or magazine to escape, or watch your favorite TV show. In my opinion, temporary escape at this time is a good thing.
If you would like ot talk to someone, let me know and I will give you my phone number.
Good luckl amnd you are in my prayers
AnonymousMay 30, 2007 at 12:47 am
HI BECKY! I am glad you found us. Lean on this forum for all the support you can get, you will need to have many questions answered. Don’t be afraid to ask questions! This is a great group and we love our care givers! Make sure you take care of yourself! One thing I did not see anyone mention was the eyes might be out of focus or he might be having double vision. The muscles in the eyes are not coordinated and don’t follow each other. Also the pherphial vision might be impared. As far as the touching and rubbing, some of us were very sensetive to touch. It was very painful. I think the idea of having a favorite toy is a great ideas as is the favorite books. Hang in there and keep things possitive. It is most beneficial for all concerned!
AnonymousJune 3, 2007 at 12:20 am
Thank you all for your thoughts and prayers.
I actually have good news to report. His final phase of plasmapherisis was completed on Thursday, and since then he has been making wonderful progress. He has some movement in his fingers and shoulders, and yesterday he smiled!!! Then today, the doctors took him off his respirator!!!!!!! I am so excited. I also got to hold him today, which after three weeks of no cuddling, I was crying.
From what I understand, the doctors are done “treating” him. From now on its up to him. I’ve been told that there will be physical and occupational therapy. Is that done while he’s in the hospital, or at home? Are there special things I can do at home for him?
I really appreciate everything you guys have told me, and I’ve taken it to heart. I am so grateful to have found this wonderful site in our time of need. Thank you.
AnonymousJune 3, 2007 at 7:13 am
pt & ot can be done @ either place. he needs to recover from pt or ot in 12 to 18 hours or it is too much & will hinder recovery. tough w a kids, but lots of rest is important. he will do nicely! glad to hear you have him back. take care. be well.
gene gbs 8-99
in numbers there is strength
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New and confused
AnonymousMay 15, 2007 at 10:52 am
I am new to the site and the more I read the more confused I am. I was diagnosed with Guillian Barre in 1997. Mine included severe back pain but I never suffered as much as the people in the stories that I had read about. There is nerve damage but not enough to keep me from doing most things. In 2004, I had what I thought was a second round of Guillian Barre but was diagnosed with CIDP. History had basically repeated itself for me. It wasn’t as bad as the first round and I recovered in about 5 months.
I maintain a normal life – yardwork, housework, taxi to teenager, I even coach kindergarten soccer. Recently, I over did it and have been trying to recuperate since then. I found this site and was trying to find out how others coped with bouts of fatigue and weakness. My confusion stems from reading that others live this way all of the time! This is the first bout of mild weakness and fatigue since 2004.
Are there others like me?
May 15, 2007 at 6:45 pm
We are confused too! We did not have any ivig for five 1/2 months and then we had some weakness. We were given more ivig and currently are in the process of figuring out if we have residuals from gbs or cidp. As Emily’s mom mentioned, if you have not had any additional ivig, I too would question the dx (as we are) Go to a different doctor, get a repeat ncv/emg to compare to your first tests, see if there is any change, better or worse, we attempted to do a repeat l/p with my son to confirm another cidp episode. (failed, intern could not make the puncture) If you cannot be certain, as we are not, maybe additional ivig would be warranted to stop any progression if in fact it is cidp. This is what we are doing until we are sure. Good luck in this land of confusion! Dawn, Kevies mom 😮
AnonymousMay 17, 2007 at 11:00 am
Residuals are the lasting affects (symptoms) of the disease that linger. Residuals can last for weeks, months, years or even a life time. There is no way to know what will stay or what will go away. And, sometimes it appears that a residual has gone away only to rear its ugly head at an unexpected time 😮
AnonymousMay 18, 2007 at 1:29 am
I describe myself as a chronic relapser CIDP’er not chronic progressive. I have long periods with no symptoms and then I have a relapse – I am lucky as most of the ‘relapses’ are mini loss sensation and some weakness and the terminal tiredness – I hold my breath and wait 1-2 weeks see what happens. Sometime the eymptoms are bad enough for me to require IVIG that worked for me in 1996 (1st diagnosed) 2 years later it didn’t so I had plasmaphoresis every 2-3 days for a month I had no symptoms for 2 years but since 2000 I have had many mini relapses. This year bad enough to warrant treatment ie terminally tired weakness – couldnt walk very far and difficulty holding stuff IVIG last month and I am back to what is normal for me – I have residuals like foot drop etc. I only received the IVIG because I refused to take the weekly 500mg methyl prednisolone – I have to look after the other parts of my body that the neuro isn’t interested in. I was lucky this time lets hope I go for another long stretch before I get any “significant” symtoms
We are all different
AnonymousMay 22, 2007 at 12:31 pm
Skye, Your relapse sounds similar to what I am currently experiencing. What do you do for the “mini relapses”? I am waiting this out but it has been about a month and I don’t feel any better. I don’t feel worse either so I am not sure what to do!
I hope your long stretch goes for years.
AnonymousMay 23, 2007 at 1:39 am
This all sounds familiar….
I have had hypersensitivity problems and chronic pain since 1995. It eventually “progressed”, and I was diagnosed with “sensory neuronopathy of the dorsal root ganglion” by Dr. Gareth Parry, who seems to be known to you guys.
In 2001 I started having real issues with the progressive nature. I have been given all the treatments, starting with just amytriptiline, neurontin, steriods and up to and includnig 3 years of IViG, which eventually lost its efficacy.
In Feb of this year, I had a huge “acute” episode where I felt like chainsaws were continually attacking my hands, feet, and back. I ended up in hospital and was diagnosed with CIDP (I think a sensory variant as my motor symptoms are mostly a slightly drop feet, reflex loss and inability to hold and cut things, and inability to orient myself in space). I did 8 weeks of plasmapheresis which helped, and now we are back to IViG as well as azathioprine. Unfortunately the chain saws are back now after only 3 weeks.
I think that anyone with this type of situation has to realise that it is a “forever” thing. It comes and goes, day by day. I managed to have a child and work full-time up until Feb, with the support of my partner. Since then, I have been looking after myself abit more. Lesson learned the hard way. Finding this forum is a way of realising you are not alone.
AnonymousMay 24, 2007 at 2:04 am
If you need IVIg, don’t wait until you are feeling REALLY bad and aren’t functioning all that well, get it before the symptoms hit you hard. The idea behind it is to make sure you get it to allow your body to reach some sort of “plateau” state….without all the ups and downs. If you can get that plateau, then maybe the anxiousness will subside.
I hope that you get what you need. At any rate, I call the doc when my symptoms get bad enough to wake me at night, or I am restricted in exercise, like Skye.
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