Daughter’s leg and headache pain
AnonymousJanuary 22, 2008 at 5:51 pm
Our daughter, Carolyn, now 30 years old has been in the hospital for two weeks. She had GBS when she was 8 years old, in the hospital one week and recovered within 1.5 months with rehab. Then it was loss of muscle strength but never even affected her breathing.
She was hospitalized for 5 days and given some IVIG treatment and sent home. That night she couldn’t breathe and was taken back to the hospital by ambulance and has been there ever since. She is having so much trouble breathing she’s been in ICU as of two days ago. She has tremendous leg pain and headaches. She also now has Bell’s Palsey on both sides of her face and can’t shut her eyes. She feels this is what’s causing her headaches.
They are giving her Dilauden (?sp?) every 3-4 hrs for pain through an IV. It only takes away the pain for one hour and she uses that hour to sleep. She is not eating and the hospital doesn’t seem to care or notice she has not eaten. We finally started bringing in “Boost” so she’d get some nutrition.
This morning we were told by her GP that her breathing was improved but the nurse in the ICU said she’s worse than yesterday. The neurologist does not seem very sure of what he’s doing and at first even doubted this was GBS even after a spinal but another neurologist said it is.
Carolyn and her husband, Brendan, have a 5 month old (Aiden) and a 27 month old (Owen) we’ve been taking care of along with Brendan’s parents so it’s rough on everyone. Brendan took a week off from work but he’s now back a the job so both sets of grandparents are trying to work things out taking care of the grandchildren.
We want to have our daughter transferred to another hospital (Robert Wood Johnson in New Brunswick, NJ – where she was treated when she had GBS at 8 years old) because in Centra-State Hospital in Freehold, NJ they really have a poor attitude and minimal care.
My question, since the doctor can’t seem to give us a straight answer … is the leg pain and headach associated with GBS? If so, what is the treatment for this? Also, how long will it take until she plateaus and starts recovering? The doctor said this is a severe case of GBS.
January 22, 2008 at 6:58 pm
First off, I think a member named Brandy may be from Jersey, maybe she can give you the name of a doc, try to pm her. I do not know much about gbs (we started as gbs and moved on to cidp) but Gene on this site as well as Ali does. Have the docs said this is a recurrent gbs attack? I beleive Bell’s Palsey is also immune related, is it possible the docs think this triggered another gbs attack? There also is this issue where post polio type things happen with people who have had gbs a long time ago. The fact that she cannot breathe however, would to me in my little bit of a brain say it is an active attack. HAve they started a full loading dose on her this time around? (2g/kg) how many days has she had it? You say she is not eating, I assume they are keeping her hydrated!? (if I have learned anything, I have learned NOT to assume, ASK)!
Is she on a ventilator, regarding the statements about the breathing and the doc saying it is a severe case? Perhaps another round of ivig could be tried or pp first then another ivig?
My son complained of INTENSE headaches, and leg pain. I am not sure if it is only gbs related, it could also be from the ivig. My son had the aseptic meningitis reaction for about three days post ivig. I think you mentioned she is many days past ivig, so I do not know if the ivig can be blamed on the headache. My son’s leg pain was in his ankles, calves and hamstrings. Good luck to you and others more experienced with gbs will respond I am sure!
Dawn Kevies mom
AnonymousJanuary 22, 2008 at 10:32 pm
hi mpdagostino & welcome,
if you are sure Robert Wood Johnson is better, make the move along w a new neuro. for neurological pain you need neurontin, not dilaudid which is a narcotic. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. was she given more ivig? it works on 70% of us. if she continues to get worse, as it seems, she needs to try plasmapheresis if doc approved.
NJ Dr. Tahmoush, he is good. He has an office in St. Francis Hospital in Trenton. Dr Tahmoush’s main office is in Philly.
his Trenton,NJ phone # 609-599-5792
190 Jack Martin Blvd. Building B-3 Brick, New Jersey 08724 732-785-1500
He also has an office in Neptune. He’s a great Neuro and I highly recommend him.
He goes to Brick Hospital and Jersey Shore Medical Center.
They must stress Dr. Barcas or they’ll be given to the other Drs and they aren’t any good.
John J. Halperin in summit [overlook hosp?]. also knows cidp.
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 23, 2008 at 10:46 pm
I think that “Bells Palsey” is just a generic name given if the face becomes paralyzed, and this is often the case when the paralysis reaches the head. Also severe headache and extreme pain in legs are all common to many GBS sufferers. Unfortunately I had all three too. So quick answer ….all are or can be related to GBS
Please remember that the IVIg will not have necessarily stopped the progression of GBS, so, just as your daughter has done (if it is GBS), the progression can go on to reach its worst point – up to 4 weeks – so the worst point should not go further after around the 4 week mark. The IVIg is there to help with recovery. However it is important to remember that, after 2 weeks of the initial IVIg infusion (normally 5 days), if the patient has not started onto the road to improvement/recovery, the latest suggestion by the experts is that another IVIg infusion be given (another 5 days).
I gather from what you said that her spinal fluid was elevated? There are also things that you should be watching out for …. such as ….. that they are making sure that she doesnt get drop foot; that her eyes are kept lubricated ALL the time; that they check at least twice a day to see if she needs a bowel movement and she will probably need an enema if she is paralyzed; that she is unable to control her body temp and will probably be too hot – care should be taken to keep her cool as with GBS one is not able to ‘sweat’ as such and keep your heat under control.
Please feel free to give me a call if you would like to speak. I live in VA so I am on east coast time. My number is 703 365-8231
AnonymousJanuary 25, 2008 at 9:52 am
Thank you all for your most informative posts. We have her at Robert W. Johnson hospital now and they have started plasmaferisis (yesterday). Carolyn got a “tingling” sensation all over after the therapy and the operator said it was probably due to not enough calcium. They gave her calcium through an IV and said today’s treatment would contain calcium. They will stop for the weekend and then continue next Mon, Wed and Fri.
We noticed she was a little more calm after the treatment and actually slept a little for the first time in days.
They’re introducing neurontin today. She’s been given advan by IV and that has really tamed her anxiety (she’s been very aggrivated and anxious and constantly states, “I want to get out of here” – it’s become her mantra).
We will ask today about bowel movement and “drop foot”. She really has not been eating and the doctor said yesterday they may have to put a feeding tube in today or tomorrow. We encourage her to eat but she has no feeling or taste and finds it very difficult to swallow although the docs say she can swallow but must be watched when eating and always in an upright position.
We brought in someone to stay with her during the night because she is so scared of not being able to breathe and that no one will notice. Again, thanks for all the advice and I’ll keep you informed.
AnonymousJanuary 25, 2008 at 8:58 pm
The bowels are probably not totally evacuated, and that can cause a huge problem a couple or so weeks down the line. Unfortuantely I had that problem, it wasn’t caught in time and caused horrible pain, anxiety and stress on top of everything else. One of the patients I am visiting currently had the same problem, thankfully her hubby had been expecting it, he askes her everyday about it even though she cant speak, she nods or shakes her head slightly – she has not had to endure the awful pain and anxiety associated with the constipation because enema’s have been done when needed, and more drastic measures have not had to be made.
AnonymousJanuary 29, 2008 at 7:48 pm
I just have to say that his forum has been a great source of needed information for us. The hints we were given were to watch for drop foot, bowel movement, and eye drops – all things not addressed by the hospital until we brought them up.
She is still not eating and I think they may have to put in a feeding tube. I also read somewhere on posts about putting in a “port’ instead of destroying her veins each time blood is needed. The hospital calls it a “pick” and this morning they finally put it in after asking for three days and Carolyn having arms black and blue. Our daughter is extremely depressed and cries everyday about her pain and that she’s afraid her baby won’t remember her as “mommy”. It just breaks our hearts and it’s difficult to put on a positive front.
She is out of ICU and two days ago I noticed her speech was much more understandable. But yesterday she was back to being semi-unintelligible and last night they said her breathing was worse although today they say it’s “better”. Because of this they are afraid to give her anything too strong for her pain so she suffers constantly. What they are giving her that’s really not working is torridall, neurontin and tylenol. They started 2.5 mg of oxycotton once a day about 11PM to help her sleep but she says it doesn’t really ease the pain. We also noticed her hand was super swollen today and the nurse said it was due to the iV. The port for the Plasmapheresis in her leg became infected after two treatments so they put a new one in today in her neck while they did the “pick” port in her arm.
I guess we’ll just have to take it a day at a time. Again, thank you.
January 29, 2008 at 8:52 pm
Please stay strong! When my now 11 y/o was dx, it was so hard on me seeing him in icu, so I understand your pain! Regarding the in and out confusion from day to day, gbs DOES not affect the brain. More than likeley the cocktail she is getting is causing the confusion. Dehydration also alters how you think. Kevin would get confused from day to day as well. Keep an eye on the infection CLOSELEY! Maybe even ask for some preventive iv antbiotics after the pp. Maybe the pp washes out the infection? (I do not know if antibiotics can be effective while getting pp)
Bring her baby in, I assume the child is too young (a Baby) to be stressed by the hospital surroundings? Perhaps you can make a poster board to hang where she can see it with pictures. Maybe even a video, to help her keep in touch with her childs daily happenings.
I am not sure if this applies to all patients, or just seniors, as my father was in the hospital last summer and he was confused, they called it sundowners I think. That might be an explanation for the confusion, just a thought.
Kevin also had a problem with constipation, it lasted about 6 months. Be careful and do not use laxitives as the bowel becomes dependant on them, we used stool softeners and prune juice (the awful nonm diluted form) and an occasional, occasional laxitive.
Watch the pic line, as those can become infected as well. Make sure every time the use it, an alcohol wipe is used on the end. Kevin was initially going to get a pic line, but I asked for a port as he has cidp and will get continuous ivig for some time. It was not a practical option for a 11 y/o.
Just so you know, Kevin and many, many others on the site repair and get back to pretty good, some even normal. I would say 16 months out, and Kevin is pretty close to normal with the exception of some pain in his ankles and wrists when he overdoes it, and I mean overdose, playing with his friends like a wild man! Your family will get there!!!
HAVE FAITH, You ALL will come out the other end!!! IT gets better, and quite honestly, for my son and I, it showed us the real importance of life. We look at things totaly different. It has made us both more compassionate people (still working on the husband LOL, some things never change!)
I will pray for your daughter and for a steadfast recovery!
Dawn Kevies mom
January 29, 2008 at 8:54 pm
I also should mention, ask GENE about neurotnin and dosing, he knows about that. The dosing is probably way less than it should be. Others on the site are experts with pain meds and can help you immenseley!
AnonymousJanuary 29, 2008 at 9:12 pm
dawn knows me well. as i was reading your post, i was planning to ask you how much neurontin she is on. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 30, 2008 at 2:18 pm
Understanding your daughters words a little more clearly, [I][B]may[/B][/I] be an indication that things are on the upward swing – [I][B]if[/B][/I] (and only if) that is the case, then there will be days that seem to be worse than the better days (does that make sense?) The road to recovery is a case of 1 step forward 2 steps back, and so on – unfortunately. Please make sure that you, and your daughters husband continually ask questions, if you are not sure of something, ask, ask, question and question again, and most importantly, if there is something you feel is lacking, or something you feel needs to be changed you NEED to be heard. I have been visiting a lady for months now, who’s husband questioned and insisted on things, and he got results and the very best care for her. This family was [B]very[/B] proactive, and I can see a difference in the patients who’s families have been proactive, and with those who havent been.
AnonymousFebruary 9, 2008 at 5:44 pm
It’s been a while since I’ve had a chance to write about Carolyn. Like you said, 1 step forward and 2 steps back. She is still in rehab and they say it will be about 3 weeks and then sub-acute rehab. She’s not in constant pain any longer and her headaches went away for a while but now they’re back. Her eyes still won’t close and her speech is not really improved in the last week. She’s been having stomach pain although she is moving her bowels. She does have more movement in her arms and 2 days ago she moved her left leg! No feelings in the toes yet but she senses touching her ankles and lower legs.
She’s had double vision for about 2 weeks and we’ve asked many times for an opthamologist to take a look at her. I could understand if the eye muscles are affected like everything else. Yesterday a neurological opthamologist said it may be Miller-Fisher Syndrome which is another can of worms:confused: . They want to do an MRI (to check for a tumor in the brain) but my daughter and her husband are opposed to it. They feel ithe double vision is caused by the GBS and dont’ want to go that route. I see no reason not to just be sure.
The past few days have been constant highs and lows for us and the whole thing is wearing on everyone. The children see Carolyn almost every day. Since she has relatively little pain and some movement she can interact with them and that’s so much better for all.
Anyway, that’s all for now. I don’t know what dosage of neurontin she’s up to now, Gene, but I’ll check.
AnonymousFebruary 9, 2008 at 10:02 pm
Miller Fisher is quite difficult to diagnose, simply because other forms of GBS have the double vision associated with weakened muscles around the eyes, slurred speech etc. due to cranial involement. Apparently, recent research shows that MFS is associated with with antibodies to a component of the myelin sheath known as [I]GQ1b[/I], and over 90% of MFS patients have these particular antibodies.
There is a relatively new book out by the American Academy of Neurology called : [B]Guillain-Barre Syndrome[/B] – [I]From Diagnosis to Recovery[/I] by: Ds. Gareth J.Parry and Joel S.Steinberg. In it it describes the different varients and forms of GBS. It is quite an informative book and may be worth your while to get a copy.
AnonymousFebruary 9, 2008 at 10:46 pm
I am going to take a few passages out of the book I mentioned in the post below. These are some of the symptoms associated with GBS (Miller Fisher is not mentioned here).
[I][B]Page 11 (Chapter 2 – What are the Effects of Guillain-Barre Syndrome?)[/B][/I]
Head and neck muscles can also become weak. These muscles are controlled by a set of nerves callled the cranial nerves, which come directly off the brain and supply various parts of the head and neck with sensation and strenght. [B]Facial weakness is the most common cranial symptom, affecting about one-half of people with GBS, resulting in an inability to smile or fully close the eyes[/B]. These symptoms are due to involvement of the seventh cranial nerve. Facial weakness may develope shortly after limb weakness, or it may be the first symptom. It is usually symetric, but occasionally it may be so asymmetric, with one side of the face drooping more than the other, that the affected person may be thought to have [B]Bell’s Palsy. Weakness of the eye muscles can cause double vision. D[/B]ifficulty swallowing and handling saliva developes about 15 per cent of the time because of involvement of the ninth and tenth cranial nerves. …………….
[B][I]page 13 & 14 (Pain in Guillain-Barre Syndrome)[/I][/B]
GBS is a disorder in which the dramatic nature of the paralysis over shaddows all other features. Pain is an integral part of the disease, but sometimes it is not given sufficient attention. In some studies, pain has been reported in more than 80 percent of people with GBS. It is frequently underappreciated and undertreated by doctors, expecially in the intensive care unit, where people with GBS may not be able to communicate about their pain. They may have been incorrectly told that they do not have pain because pain does not occur in GBS. The pain of GBS can occur during the acute phase of the illness, and may even predate the onset of weakness. Pain can also occur during recovery and rehabilitation. …..
(pain in the accute phase)
…….Typically, the pain of GBS is located in the region of the spine and the upper parts of the limbs, including pain between the shoulder blades, in the lower back and buttocks, or around the hips and shoulders. ……
Pain in the [B]acute phase of GBS is called nociceptive pain[/B], not neuropathic pain. Nociceptive pain is the type of pain that warns us of tisue damage; irreparable damage might occur if it did not hurt to walk on a broken leg. The perception of pain offers important protections agains injury. By contrast, neuropathic pain is pain that arises from damaged nerve fibers. It serves no useful protective function. [B]Neuropathic pain occurs during recovery[/B] from the acute phase of GBS
It is important to [I]distinguish between nociceptive and neuropathic[/I] pain because the require different treatments. [B]Nociceptive pain is best treated with simple painkillers (analgesics). If the pain is mild, nonsteroidal, anti-inflammatory drugs, such as asprin, acetaminophen (Tylenol),[/B] ibuprofen …. may be all that is needed. More severe pain can be treated with oral narcotics such as codeine, meperidine, exycodone, or hydrocodone.
[I][B]Page 155 – Chapter 8[/B][/I]
Pain is an underappreciated symptom that may persist for many years after GBS. It may be anuropathic pain or the pain that results from the overuse of incompletely recovered muscles. …..
….However, the nerve fibers that transmit these messages (pain messages) in a normal situation may be damaged in any neuropathic disease, including GBS, resulting in enuropathic pain. ……….The message that the damaged nerve fibers send to the brain is really an illusion, although the pain is certainly real. Neuropathic pain usually emerges as the other manifestations of the acute attack of GBS is subsiding.
[B][I]Page 156/7 Treatment of Neuropathic Pain[/I][/B]
Treatment of neuropathic pain is a major challenge. Complete relieve is difficult to achieve;usually the best that can be hoped for is to make the pain tolerable. It is important that the patient understand this because expectations are important in defining satisfaction with treatment.
END OF EXERTS FROM BOOK
This is where they go on to describe the pain meds used for neuropathic pain eg. Neurontin (Gabapentin), Lyrica as well as antidepressant drugs and Narcotic drugs for pain.
AnonymousFebruary 20, 2008 at 10:50 am
[B]Matt, You wrote:
They want to do an MRI (to check for a tumor in the brain) but my daughter and her husband are opposed to it. They feel ithe double vision is caused by the GBS and dont’ want to go that route. I see no reason not to just be sure.
The past few days have been constant highs and lows for us and the whole thing is wearing on everyone.
[FONT=”Comic Sans MS”][SIZE=”2″]May I ask, is it the cost of the test, or fear of the outcome?[/SIZE][/FONT]
[FONT=”Comic Sans MS”][SIZE=”2″]I had an MRI test during the course of my third hospitalization. No one told me how frightening the experience would be, it was hard to remain still because I was in pain and you don’t expect the noise to intensify it.[SIZE=”3″][B][I] Having said that however, I found out later that you can, and in many case should be sedated for this test.[/I][/B][/SIZE]
There were important findings as a result of the test and positive changes in treatment.
Can you speak to her Dr. and perhaps get him/her to at least gently press for an MRI?
Hope she’s doing well,
AnonymousFebruary 29, 2008 at 12:31 pm
I was wondering how your daughter has been doing? Can you give us an update?[/QUOTE]
It’s been a while since I’ve written. Carolyn was in rehab and seemed to be getting a little better each day but not really regaining strength. They were talking about sending her home. I was afraid she was malnourished. She still was not eating. We voiced our concern to the speech therapist who works with the nutritionist. She said they’ve been monitlring her food. My question was, “the food delivered or the food she actually eats!” She said it was the latter. I wanted her to tell me what they recorded she had eaten. She checked the log and said “about 10%” of her food” – which was about accurate.
Everytime they would try to sit Carolyn up in rehab her blood pressure would drop and they said this was caused by “pooling” of the blood in her legs. In addition because of this blood pressure drop she would get dizzy. They started talking (and my daughter was begging) to make prepartions to send her home. I asked, “you’re talking about sending her home when she’s in this condition and hasn’t eaten for 8 weeks?!”.
As of last Friday we were scheduled to have a meeting with the staff on her case yesterday to discuss her exiting the hospital. They were trying move her introvenous injection port but couldn’t find a vein on four separate occasions that day. On Friday she contracted a cold from her neighbor and we were told they “almost lost her” that night because she couldn’t cough to expectorate the flem from the cold. They also found she was malnourished and that’s why they couldn’t find a vein. She was put into ICU on Sat and got a tracheotomy on Sunday and a feeding tube put in on Monday! Now she cannot talk, see (vision blurred since the beginning), breath easily or move her limbs. She is worse than when she came into this rehab center.
They told us yesterday they are going to take her out of ICU today and put her into the rehab again. I asked them why aren’t they putting her in a regular hospital room at least until the feeding tube is out. They said it’s no big deal.
I went home and last night called a doctor we know from Sloan Kettering in NY and explained the whole situation. He went across the hall to the neurology section in the hospital and explained it to his friends who were more knowlegeable in this area. They said they thought the hospital acted correctly as long as the disease stayed “typical”. At this point it sounded to them like the doctors were “dumping” the patient. Their advice was to get her into Columbia Hospital in NY which they said has the finest neurology dept in the area and they love to treat young people that aren’t suffereing from anything other than the disease.
I’ve run this by Brendan, Carolyn’s husband, and he said we should ask Carolyn since he thought she wouldn’t agree since the hospital is not local. I told him we want what’s best for our daughter and convenience doesn’t enter the picture. I told him I’ve lost faith in this hospital and the doctors here. My wife went to the hospital last night and Carolyn says she’ll think about it. Today we got the word she’s being moved to rehab and seems to be a little bit better.
So, that’s where we stand right now. Very frustrated and very scared.
AnonymousMarch 1, 2008 at 8:09 pm
Apparently Carolyn was in rehab just lying in bed when she couldn’t breath. They realized her right lower lung had collapsed. They brought her to ICU and put her on a ventilator through her trach tube. Her heart rate was 150 and they told us that was due to the collapsed lung. Later, her blood pressure dropped to 68/38 and they had to put in a catheter to administer Lentilin(?) – they said it was caustic -to restrict her vessels to up the BP. We just left her and her BP was 111/59 so it looks like that is better. However a new xray of her lung shows fluid filling it more quickly than they seem to be able to evacuate it. We are extremely worried at this point. We again stressed to Carolyn we’d like her to go to Columbia but she refused. The one improvement is that her vision is not blurred as of today. We’ll see what tomorrow brings.
AnonymousMarch 3, 2008 at 12:10 pm
[FONT=”Comic Sans MS”][SIZE=”2″]Matt,
I’m so sorry, I know you’re frustration and fear levels must be very high just now.
I wish she were a child again so you and Mom could just scoop her up and take her straight to Columbia, alas she is not, still there ought to be some way to intervene. Would you Dr. friend from Slaon Kettering be willing to talk with her? Just a thought.
It’s so scary the way they seem to be moving her about and treating only symptoms as they arise, not seeing the whole person/disease. What does the patient’s advocate say about that?
Again, Matt my thoughts and prayers are with you and your family. Keep nudging!
AnonymousMarch 3, 2008 at 4:00 pm
Thanks for the advice. The last two days have been basically a holding pattern for Carolyn. We noticed her stomach is “bloated” and they did an ultrasound and found all OK (if you believe these people know what they’re doing – which we do not). Tomorrow they’re supposed to do a brocheostomy because they think there is fluid in her left lung which should be suctioned. Carolyn’s heart rate was in the 90’s today, BP about 96/68 and respiration about 15-20. She told us (through forced whispered breaths) a nurse named Joann in rehab “saved her life”. That’s the second time we’ve heard that she almost died. We went to thank the nurse but she won’t be in until tomorrow and we’ll be sure to see her then.
Carolyn has been assigned her own doctor (Finally! After hearing it from all of us about no doctor point of contact during this whole nightmare). I spoke to her designated doctor yesterday and was adamant about her not going directly to rehab from ICU. Suddenly they understand that it’s not a good idea! She assured us Carolyn would be going to a regular hospital room from ICU. We will make sure that happens. We asked Carolyn again today about going to Columbia but she refuses because it’s too far away from her family.:rolleyes:
AnonymousMarch 12, 2008 at 3:59 pm
The ‘bloated’ stomach is quite common, (lack of muscle, no food only iv’s, lack of inactivity etc) mine was so huge that I was unable to see my feet when I first started to stand – I was horrified. I have seen it in may patients who have been paralized for a while. If they have done tests to make sure its nothing else, I would almost say that in and of itself it is probably not much to worry about. If it is not being done, Carolyn should be suctioned continuously through the night and day, and if she is able to, she should be given a suction tube to hold so that she can do it herself. This seems to be common, not only with patients i see, but It was somthing that was done in the 80’s with me too.
Wow, I’m not sure if I’m reading correctly, but do they monitor her constantly? This is imparitive at this stage for her, there shouldnt even be a point when someone from another department is able to save her, stats should be monitored 24/7 – Not sure exactly what seems to be going on. Most patients are moved from ICU, to critical care or respiratory care, or some high care before moving to a general ward, and only then to a rehab facility. Please keep us updated.
AnonymousMarch 17, 2008 at 2:56 pm
Last week the neurologist recommended three plasma pheresis sessions. They seem to be helping her gain strength.:D
We went to see Carolyn yesterday and found her out of ICU and on a telemetry floor. She had been off the ventilaor for two days, a little problem with very low BP (72/48) but that seems OK now. She’s still on the feeding tube. The nurse in ICU told us there’s something called ICU psychosis where the patient starts imagining her bed moving, etc. and Carolyn had this the past few days with much anxiety and crying. Yesterday she slept most of the day but was in a good mood for the most part.
This morning my wife went to see her while I had the children and she found her crying. :confused: They had Carolyn sitting up for a little while and she wanted to go beck to bed but the nurses advised her that she still had ten minutes. I think she feels bad enough she can’t control her body but now she can’t even control her environment. I know they want her to sit so her blood doesn’t pool so much in her legs and her BP drop which makes my daughter “dizzy” from the low BP. I aso understand her frustration. She says she’s thirsty but still has the trache so she can’t drink. They capped it for about 20 mins today and she felt OK. They say tomorrow they’ll try to cap it for an hour.
When my wife, Kathi, got home she said the pulmonary doctor (who sent Carolyn to rehab and she had pneumonia 12 hrs later and she almost died before an emergency trache – don’t ask why he remains her doctor) said perhaps today she would return to rehab. I question the wisdom of this especially since she’s not been perfectly healthy in ICU!
Her stomach “bloating” has gone down. One of the nurses said that most people rid themselves of gas by movement during the day and Carolyn’s immobility can be the reason for the bloating. BTW, her arms are now able to move and yesterday I asked her to give me a push when excersizing her legs and they were a little stronger than the day before. Of course, she still has no feeling in her feet or toes. We’ll see what the next few days bring.
AnonymousApril 4, 2008 at 8:58 am
[FONT=”Comic Sans MS”][SIZE=”2″]From Matt.
Thanks so much for your concern. Carolyn is in rehab. Still has the trache in but it may be out by the end of the week. She was scheduled to come home on April 4 (I tried to get her out before she went crazy) but the doctors convinced her to stay a little longer. There have been most days that she cries all the time. She hate it there; she wants to come home; she misses her children, etc. It’s become a mantra.
Two days ago her husband called and said he didn’t know what to do. He had never seen her so emotionally disturbed with fits of crying and anguish. He didn’t know what to do. We had been saying over and over that she needed a psychologist or psychiatrist to help her. I told Brendan to ask her doctor and meanwhile I’d try to work on something. I called Kessler Rehab in Chester, NJ, whom a doctor friend had recommended weeks ago but Carolyn and Brendan refused to move her. The admin office found it hard to believe that part of her treatment had not been psychological. They told me to have the doctor call them and they would see what they could do as far as admitting her.
I called Brendan back and he said the doc had scheduled a psychologist and and psychiatrist. I said that i don’t have any faith in this hospital or their doctors and informed him about Kessler. He said he’d call me back. When he did he said he and Carolyn decided she’d come home April 18 as long as she would eat her food (which she hasn’t been doing) and that she was more indepedent with voiding waste. He said she had calmed down and now felt better that there was light at the end of the tunnel.
I’m for whatever makes my daughter happy. But I had tried the “light at the end of the tunnel” and it seemed to work psychologically but only for a couple of days. So, it’s been a day and when I went to see Carolyn yesterday it was the first time in weeks that she hasn’t cried. I can see she is really afraid that any setback will keep her from coming home and I’m worried that if that happens she’ll be worse than before psycologically.
Well, that’s about it. We’re praying tha in the end all will turn out alright.
AnonymousApril 22, 2008 at 7:15 am
Carolyn finally came home 😀 on Friday, April 18, and has been here for 4 days now. The discharge went very smooth and all the equipment was delivered to our home. Brendan took off work on Friday as well as his parents who took the children for the day.
We’ve got Carolyn set up in an extension to our kitchen where we normally put the kitchen table. We’ve sectioned it off with curtains so she can have privacy and take a nap now and then. An evaluation of her condition was done on Saturday and we’re waiting to see what home care she will be eligible to have. My wife, Kathi, Brendan and I were trained in how to get her into andout of a wheelchair from her bed, meds and excersizing her. She still has relatively little feelng in her legs but her upper body is beginning to function somwhat. She has difficulty holding anything in her hands so her small motor skills need work.
It’s great to see her eldest, Ownen (who will be 3 years old July 31) get in bed with Mommy and adore her. The little guy, Aiden, at 9 months now, was only 6 months old when Carolyn went in the hospital will have to get to know her as time passes. Yesterday I tried to hold Carolyns hand while she fed Aiden so he could interact with her. He seemed oblivious but I know there will be a deeper connection as Carolyn heals.
Her mood has been sullen for the most part and she wonders if she’ll ever get well even though she’s made great strides within the past few weeks. She does not want the neurologist from the hospital. He recommends 3 more IVIG treatments over the next 3 months. She had terrible headaches from this and double vision so she’s not sure she wants it. Will it really help? Is it worth the risk? We’ve scheduled a highly recommended neurologist in our area, Dr. Roger Benhar, for May 7 to evaluate her and to get a second opinion on the IVIG.
If you have any recommendations, please tell me.
April 22, 2008 at 11:43 am
I am thinking of your family and Kevin and I will pray for all of you tonight. Ultimateley, ones medical issues are their own to decide, but you did ask for recommendations. First, I have a couple of questions that are dependant on my response. Are they contemplating a cidp dx? I ask this because technically, the ivig or pp benefits gbs for a time period only. Enough to halt, not stop the attack of antibody production. If she is getting stronger and has gbs, it is because the attack has sopped and SHE is doing better. Continued ivig would not help gbs (unless there was a persistent attack that took a little longer to halt) If I remember correctly she has already had ivig&pp. That being said, if they suspect cidp, obviously ivig IS the way to go, way less invasive than pp or other drugs. But I would want to be sure it was cidp. Kevin was not as dire as your daughter, so we were aable to do the wait and see approach and re checked ncv/emg to cross reference results. That was our ultimate dx tool to decipher between gbs/cidp. Unless she already had a ncv/emg, you have nothing to compare as a reference point. Just for the future, if she has not had one, next time you guys go to the doc, you might want to have one sched. for a starting point. There are other ways to see if there are additional demylienatons that take place, but one of them is not that popular.
Regarding the headaches & ivig, Kevin gets those each and every month, they are awful, he pukes and is ill for about 36 hours, this was the first month it was not so bad, only 6 hours of sickness. There are many things to alieviate some of the symptoms, the first being slo flo rate and a variety of pre meds. As we get it more, it seems as though the reactions get better for Kevin.
Honestly, just an opinion, based on what you write regarding her symptoms onset (quick and her slow response to ivig) it seems like gbs. Kevin and others on the site usually, and I use that loosely as nothing is usual about this condition, respond quickly to ivig and are not so quickly dibilated as you daughter. So, unless I had some concrete evidence that it was cidp (diagnostic) I probably would hold off on the ivig too. But I would explore ALL avenues of being SURE it was not. Because if it is, she progresses quickly. Good luck to you and I hope I have not over stepped.
Dawn Kevies mom
AnonymousApril 22, 2008 at 1:03 pm
I just wanted to comment on the depression and crying jags. I had GBS at the age of twenty-nine and had four small children ranging in age from 1-9. So I can appreciate your daughters anxieties and depression. I ached for my kids…to be able to hold them and hug them. I wanted to do all the “mom” stuff” but wasn’t able. I cried for days on end as all I really wanted was to go home. I believe she will get to a point where she begins to feel she is contributing something to their care and as she sees small improvements in her day to day well being, she will perk up.
She needs to not over do it though. I remember one evening insisting to my mother in law that I could bathe the 1 year old and once I got out of my wheelchair and on to the floor, I was toast! I couldn’t do any more and of course couldn’t get back in the chair as I wasn’t strong enough. My MIL was ill with cancer and couldn’t assist me so I spent about 2 hours struggling to get to the living room where a bed had been set up for me but then I couldn’t get into the bed either. My husband finally got home and assisted me, but I never did that again. It cost me a couple days….
Take care and know that the mood swings are normal. My neuro told me that it was part and parcel of the nerves inability to function normally. Keep us posted.
AnonymousApril 22, 2008 at 6:36 pm
Thanks for your thoughts and advice. Concerning whether Carolyn has GBS or CIDP – the neurologist in the hospital is still not sure! That is one reason Carolyn and Brendan have opted for a different N. After treatment of IVIG and PP she seemed to be reponding but then went much further down. Two months later she was DX’d as malnourished. To this day I don’t know how that could have happened after all of us stating to anyone who would listen that she was not eating.
Now, was it the malnourishment that put a damper on her healing or is it CIDP? She was given at least 3 to 4 emg tests and they still don’t know. After reading your comments I think we have to wait to have a new evaluation by the new neurologist before any decision is made. The old neurologist recommends 3 more IVIG treatments, once a month for 5 days at a time.
April 22, 2008 at 8:31 pm
I understand your frustrations of not knowing the dx. Did she have a ncv and emg? If you are considering a new doc (probably a great idea) I would bring the old test results with to the testing center so that the new doc can duplicate the same test (same nerves tested and same amplitudes) then you will have a true comparison. There is another test, a nerve biopsy, but it is frowned upon by many who had it, I opted not to get it for Kevin since the other tests were conclusive. The risks of infection and permanent pain at the sight did not seem necessary since the ncv/emg confirmed. But if you do not have conclusive evidence with any other diagnostic tools, it would truly show different periods of demylienations, or relapses if you will.
You stated that she was getting better then worse, has she gotten continually worse since the last treatment? If so, I would probably do another ivig with the old doc until you can get into the new doc. There may be a waiting period for an appointment and a ncv/emg time slot. If it is cidp, you do not want to take a chance of letting more damage occur that might never get better. If it turns out it is gbs, the you errored on the side of caution, better to be proactive with this illness.
If you were to do treatments again, they can be done at home, this is where Kevin gets them once a month. The nurse stays the whole time. If you do decide to do the ivig, and you have any questions about the headaches, you can pm me and I could explain some of the strategies we use now after many awful times. Things are better now, so I would love to spare you the mistakes we made. The helpful suggestions all have come from the kind people on this site, so I would be happy to pass them on. J
Dawn Kevies mom
AnonymousApril 24, 2008 at 8:59 am
Thanks Dawn. When I got home from work yesterday Carollyn and Brendan had decided to go with the IVIG. The nurse will be here Monday. I’ve read on the site about drinking lots of water a couple of days before and the different ratios of Tylenol to Benedryl. We’ll explore that a little more on this site.
AnonymousMay 2, 2008 at 4:46 pm
Well, we were so happy to have Carolyn home and thought she was on the road to recovery. That doesn’t seem to be the case. Out of the hospital she could move her arms but had no small motor skills. She came home on April 18 and in these two weeks (this week IVIG all week) she now doesn’t have use of her left arm and nothing else seems to have improved. She was able to get off the catheter after being home only a week but she now needs it once in a while. Today both her and my wife are crying because of the frustration of this disease and the fact that Carolyn still really can’t hold her children.
She has an appointment with a Dr. Behar on Veronica Avenue in North Brunswick, NJ who came well recommended but we don’t know his education about GBS/CDIP. As of now we’re just floundering not even knowing if it’s GBS or CDIP although we’re now thinking CIDP since it’s been almost 4 months since the onset and she’s still relatively paralyzed.
She is not on any steroids but was on them up until the hospital release. Could that be why we’re in this situation? Should we be asking for these from the new neurologist? The last time she showed remarkable improvement it was during pp. Should we be asking to get that done again? We feel we’re all drowning.
AnonymousJune 7, 2008 at 5:38 pm
[FONT=”Comic Sans MS”][SIZE=”2″]Matt,
I see that it has been more than a month since your last post so likely you will have some answers by now, but am curious to know how many PP treatments she received and why, if they were helping, they were stopped?
Also, stopping steroids abruptly is not good as the body’s adrenal glands will have slowed or completely stopped producing that hormone.
You have been on an horrendous roller coaster ride with this, so many different doctors, in and out of ICU’s and false starts.
I hope things have improved dramatically or even just a bit.
Please let us know.
AnonymousJune 8, 2008 at 6:33 am
Thank you for your concern, Veronica. When I last wrote things were bad and the IVIG seemed to have no effect. Well, within a couple of days after the IVIG Carolyn’s left arm started to get stronger and each day brought a very little improvement but it WAS an improvement. Last week she had her second IVIG treatment. I cant’ believe how far she has come along!
Yesterday was a milestone. Carolyn has been gaining much bettter control of her trunk and upper thighs in that she can “wriggle” herself to the back of the seat of the wheel chair after a board transfer. Well, yesterday she asked me to put her back in bed so I set up the board and told her, “you try to do it on your own” and she did! Not only that, but once she was back in her hospital bed I said “try to push your legs on the footboard and push yourself up to the top of the bed.” That was a little too much to ask since she really hasn’t gotten the strength back in her legs, but she was able to twist and turn and wriggle herself to the top of the bed! You should have seen the smile on her face (and mine)!!
I’m feeling very hopeful at this point. She did go to Dr. Behar and really got no information from him – many guesses – and he recommended going to see a collegue of his in Philadelphia for which the earliest appointment is July 11. Carolyn had a second visit to Dr. Behar this week and he still can’t say what she has (GBS or CIDP) so she’s not going back to him. Brendan is going to call NY Presbyterian hospital to set up an appointment with one of the doctors she has seen on this web site that specializes in CIDP (sorry, I don’t know his name).
It’s been a long, hard road and disappointments galore but I’m thinking we’re on the right road to recovery. She has another four IVIG treatments scheduled in the next four months.:)
AnonymousJuly 18, 2008 at 9:07 am
Thanks for asking Veronica. Brendan cancelled the Philadelphia appointment and Carolyn has an appointment next week with Dr. Brannigan from Columbia.
She is on a steady uphill climb with no set backs so far. Carolyn is much more confident in herself and as of two weeks ago was able to take a shower for the first time since January! She is able to go from the couch down on the floor to play with her children and all in all is a much more active person and getting back to her old self. We are able to help her back up to the couch and she gets herself in and out of the wheelchair with no problem. Last week she was able to pull herself up holding onto the counter at the kitchen sink and stand for about 15 seconds. Later on in the week she was able to do this 4 times!
This week my wife and I are on vacation and Carolyn went back to her house with her family for the week since Brendan had taken this week off, also. We were all supposed to be on vacation together in a rented home in Cape Cod – but we rented it last year for this week – long before Carolyn’s illness. There are a number of steps in the vacation house so they thought they would not enjoy being here. They really looked forward to functioning as a “family” in their own home for the week.
We’ve spoken to them and they’re getting into a regular routine. Carolyn was so excited at the beginning of the week she spoke about possibly being home permanently but as the week has waned she notices she is tired a lot of the time. I have faith that it won’t be too long until she goes home but she’s not quite ready yet.
Shortly, she will be starting a few days a week of physical therapy at a rehab from 10AM to 4PM for 20 visits. Things are really looking up. Thank you all for your prayers and encouragement during the journey along this difficult road.
March 10, 2017 at 5:00 am
Hello Anonymous, sad post you have published, wish your daughter adn whole your familly its allright, but all those descriptions you have writen its creepy, good bless you!
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