Feeling helpless

Stephan,

My thoughts and prayers are with your father and your family. The liquid you mention he is receiving is IVIG, that stops the attack so that the healing can begin. He will then have to begin the OT and PT because he will be weak. Besides the obvious Medicare/Medicade for help, look into any state, county, city programs he/they may qualify for. Also go here [COLOR=black][B]needymeds.com[/B] [/COLOR](cut and paste), there are programs on that site listed for even more help. I don’t have a liason listing handy so hopefully someone else can get you that information so that you have some support for them there. Take care and feel free to private message me anytime if I can help or answer any questions. Take care.

Jerimy

Stephan,

You are probably right when you think it will get worse before it gets better but believe me when I tell you it will get better. The IVIG treatments will stop the damage from getting worse and then he will be very weak and fatigue easily. The pain can be controlled with medications such as Neurontin. I am sorry I do not know of the support groups available in your area but someone will jump in with a listing. If nothing else simply contact the foundation directly and they will help.

God Bless your Dad, your family and you
Stephen

hi stephan & welcome,

ivig works on 70% of us. it is working if he stops getting worse. recoverey happens later. if ivig doesn’t work he needs plasmapheresis [pp], like ivig, pp works on 70% of the cases. no one knows how long nor to what degree a gbser will recover. rest, rest, & more rest lying down is critical to recovery. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Stephan I am sorry your father is going through a rough time. How fast are they giving him the IVIG? If the infusion rate is to high it might be why he feels terrible. Also he should be pre medicated with benedryl before the infusing it might help. Also what Morrada mention Neurontin/Gabapentin that is very good for the nerve pain gradually building in his body till the pain goes away up to 5400mg a day if need it. Starting slowly working his way up to level he is comfortable with. Because the pain pills make you tired. I think the worse should be over after 4 weeks then he can start thinking it can’t get worse just better. But the IVIG or the PP is what he needs to stop the disease. Listen to Gene Rest Rest and more Rest is needed.

Take care ask any question we are here for you and your family.
PS: Register with GBSFI and get a packet that will give you more information.

Sue

Stephan,

So sorry to hear that your father and your family are going through this.

Yes. GBS pain can be VERY severe. While I was in the worst part of my illness I was given 5 mg of Dilaudid every 2 hours. This took the edge off of the pain enough that it was tolerable and until it started to recede on it’s own. This is an addictive drug, but I was only on it full time for about 2 weeks, so addiction was not a problem. It made the difference between moaning and crying in pain vs sleeping and being uncomfortable.

The pain should reduce considerably soon. The IvIG is not a cure, it should stop the damage to his nerves.

If you haven’t already, request the patient and the professional info. handbooks from the GBSFI (website homepage). This will give your family some basic info. and give you something to give to his doctors (most doctors are not familiar with GBS in depth).

Keep coming back to this forum – you’ll find the best info. and support here.

Best wishes for your father’s health.

Suzanne

Stephan,

I have taken your advice. It is not that I have been stubborn; it is that I have had very little time since Sunday to do much of anything due to being at the hospital non stop as well as trying to sleep. I thank you for putting me in touch with this site as well as those members who have replied to my brother’s post. I intend on letting the nurses know about the Benadryl. My father is not dealing with the nausea well at all, I am also sure the fact that he does not want to eat and has nothing in his stomach to help process the meds they are giving him has some to do with it. They have tried many things to help, however I do know that they have not tried the Benadryl. The pain in is back and neck as well as the headache are also not helping. The Tylenol is not working for the headaches however they were giving him Lopressor for his BP and have since stopped and this has helped with the headaches. At one point his head hurt so bad he had tears in his eyes for 2 days.

What bothers me the most, is seeing the look of helplessness in his face when he tries to do something for himself. I have found that Colorado has 3 chapters, and lucky me! One is local. I intend to contact them and hope there is someone that may be able to come by and talk to my father, maybe give him some insight as well as lift his sprits. Our Dr’s have been fantastic and very upfront. They have told us that they really do not know much about GBS but they do know that many recover very well. We are still not sure of the way the infection was contracted but we do know now that he has GBS. Today was his 4th day of the meds and he can almost feel it when you touch him. They would like to be able to move him to the rehab wing come Friday AM.

Again, thank you all. If there is any info that you think I can relay to the Dr’s to help my father through this please let me know.

Time for me to sleep now, wish me luck!

Donna

Donna I hope he has past the worst of the GBS before going to rehab. When did he start having symptoms of GBS? I read the the first 4 weeks is the worst then you start to improve. Also the IVIG if they infuse it to fast it will make a person sick.

Keep asking questions we are here for you and your family.

Sue

Sue,
Thanks, I hope the worst is over as well. However from what I have come across here it looks as if it will be a bit longer. His symptoms started as far as we know (feet asleep kinda according to him) on Wed the 23rd. I had them over for dinner on the 25 and by this point he still had some use of his legs however i talked him into going to the ER. they sent him home. By sunday he was not able to walk and had no use of his legs at all. We got him back to a diffrent ER and they told us what they thought right away! when they did the spinal tap his protine level was at 108 and they admitied him right away to the ICU unit. At first they were tryin to give him the IVIG pretty fast and he was not reacting well and the bubbles would set off the IV monitor. for the last 2 days they have been putting it in slow takes them all day just to get the 5 in. Today I am gonna take him something to eat with hopes that mayby it’s just the hospital food he does not want.
Wish me luck! and thanks
Donna

Donna here is a link [url]http://www.gbs.org.uk/info/gbs.htm[/url] (copy and paste) that tells you more about GBS it is the British site [url]http://www.gbs.org.uk/index2.shtml[/url] (copy and paste) where there is good information for you and your brother to read part of the article I will post.
Sue

[SIZE=”3″]The worst degree of weakness is usually reached within four weeks and always within six weeks. Some patients deteriorate very rapidly to a state of severe paralysis over the course of a few days but this is uncommon.

The patient then enters a plateau phase that usually lasts a few days or weeks during which the course of the disease seems stationary. Most people are so weak during this stage that they are confined to a hospital bed where rest is probably a good thing. However, it is very important to keep all the joints moving through a full range to stop them stiffening up. The physiotherapist is in charge of this physical therapy and will be pleased to advise relatives and friends on what they can do to help. [/SIZE]

Sue,

Thank you very much for the info. We were in contact with our local chapter today and they had someone come over. Thank God they did too. It helped my mother and I very much, not to mention my father. We suffered a bit of a set back today as when I got to the hospital I noticed that the it has now moved into his face and his breathing has become more labored. The food idea did not work however he was not nearly as nautious today and his headache has subsided. I thank you very much for all the information and the support.

Donna C

Your welcome Donna 🙂 anytime.

We are here to help each other out

Sue