progression of GBS

Hi, Diane. How scary this must have been for you and your son! GBS is a disease that, unfortunately, many doctors have no experience with, so they make many mistakes in treating (or failing to treat) patients who have it. Reading stories like yours makes me very sad and angry, because the doctors you and your son were trusting did not give him the care he needed.

So they positively dx him with GBS with a lp at the end of April, monitored him for three days, and then sent him home???? And asked for a follow-up in four weeks???? I am appalled. Your son should have received IVIg infusions or plasmapheresis to stop the progression of the disease and to facilitate recovery. And three days of monitoring is unacceptable. It usually takes between four and six WEEKS from symptom onset for the disease to reach its lowest point. And though it sounds as if your son has not had respiratory difficulties, this is something that often happens with GBS patients. He should have been monitored in the hospital until the doctors were SURE his condition had completely stabilized. The doctors caring for him were irresponsible to send him home. I’m sorry if I sound harsh, but having received horrible medical care from ignorant doctors myself in the beginning of my illness, I get very upset when I learn of others receiving similarly poor treatment.

Given that 4-6 week projection for the downward-path of the disease, and based on the timeline you had given (dx 4/26, which was about two weeks into symptom onset, meaning it’s now been about six weeks), I would say that your son is most likely through the worst of it by now. But this is why he has been getting worse since he came home from the hospital. And since he’s most likely through the worst of it, it’s likely that IVIg would be of little or no benefit at this late time; however, if I were you, I would still request that he be treated with it because if there’s even the slightest possibility that he could still benefit at all, then it’s worth a try. If he’s still not eating well, seems to be getting weaker, etc. then I would say IVIg is still worth pursuing. It’s better than doing nothing right now.

Is the doctor in question a general practitioner? Whichever one this doctor is, s/he is incompetent, and I would urge you not to return to him or her in the future. This doctor’s negligence in treating and monitoring your son could have cost him dearly, as GBS can be life-threatening if lung or heart muscles become affected. Your son needs to be under the care of a good neurologist, and he also needs to be working with physical and occupational therapists to ensure that his recovery is as smooth as possible. His body has been through a serious trauma, and physical therapists can monitor his process and make sure that his muscles get used properly as he works to regain his mobility.

Is there any chance you could call and talk to the neurologist’s nurse to move that appointment up earlier than next Tuesday? Tell the nurse about the GBS dx, that his condition is worsening, and that he hasn’t received IVIg yet. I bet they’ll bump you up.

I may write more later, but I need to go rescue my husband from my teething 15-month-old. I am just so sorry that you and your son have been through this scary experience without proper care or guidance. You’re on the right track now, though, and anything we can do to help, you’ve got a lot of people here in this community who are here for you.

Please keep us posted. I’ll keep you and your son in my prayers.

Diane –

I am currently dealing with some frustration with my neurologist, because he doesn’t seem to take my 8-years post-GBS issues (a minor return of tingling, pain and weakness) seriously. But even he – who I’m not at all convinced is the best neuro for GBS – fit me in his incredibly busy office schedule the NEXT DAY as an emergency case when I first complained that the neuropathy symptoms were returning.

I suggest you call the neurologists office and tell them you need to be seen ASAP, or just go back to emergency!

I’ll be praying for you and your son.

Chris

hi diane & welcome,

as soon as gbs is Dxed, ivig is supposed to be given within 24 hrs. somebody dropped the ball. in the meantime your sons nerves are being destroyed. you can be sure if it was the doc himself or one of his family members, the ivig would have been started asap. do not wait. go to the er. see the oncall neuro & demand ivig. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Diane, Ditto what Gene said! don’t leave the er until something is done-either plasma exchange or ivig. Please keep us updated-on the gbs/adult thread-more people look there then in this thread. print out info and take it with you and your son. he should have an emg/ncv test done also-it will show the extent of nerve damage so far. I’m hoping He gets a competent neuro. Take care.

Sounds like you are now headed in the right direction. IVIg should help stop further deterioration. Let everyone know the outcome of you visit.

Since there is deterioration past six weeks, perhaps it is cidp? Dawn

My neurologist convinced me that in my daughter’s case, ivig would be a bad idea, since she was improving and would get better no matter what treatment was done, and why risk all the terrible side effects, did I want to make it worse? So he basically scared me away from the idea (and by the time I found out about it, it was prob too late anyway). But now I feel he was wrong, and we should have done ivig.

Well, the improvement was and is very slow. It is getting better, but now I have read more and find that ivig should have been done. However, I trusted what the doc said. Now she is still not yet walking, but IS gaining strength and we are hoping walking will follow soon.

Her onset was early Feb 07. I never dreamed she would be this disabled still, in June. When they released her, they predicted full recovery within 2-3 weeks, based on emg/ncv results. They thought it was resolving based on test, but the clinical picture was not matching up with that.

Good luck and let us know what happens.

cincysmom….as you have probably figured out by now, doctors cant tell us when we will recover. I am at almost a year and still have issues. Others are several years post onset and still have issues. It all depends on the person and the body healing itself. Dont give up hope, give her time and support and she will get better slowly but surely. She has only been going thru this for 4 months. At 4 months I still was a mess! BUT I was better than I had been. At 6 months things were even better. etc. Dont give up!

Thanks Fairly_odd! I do try to keep positive but some days are harder than others. The getting BETTER SLOWLY message is one that bears repeating! It is hard to be patient. Glad you are still improving and hope it keeps getting better and better for you.

dianevc—keep us posted on your son. We’re all thinking of you and of him.

Diane,

There was a very interesting article in the GBS/CIDP Newsletter called ‘The Communicator’ last year. Its the differences between the 3 “family” (thats what I like to call them), GBS, SIDP and CIDP.

I know that you are aware that we arent doctors or specialists and can only give our opinions and try to help. Sometimes these opinions help clarify, and often they confuse even more. However, having said that, a great majority of doctors know nothing about any of the above, which is frustrating and can impede recovery. I know that this article has helped many who have read it, especially the progression of GBS (up to 4 weeks) and that of SIDP (up to 8 weeks). Your son seems to have had a sudden onset, which does point to GBS (or SIDP), you will notice if it progresses i.e. it will move up and ‘paralyze’ more and more, or he will get weaker and weaker. If he doesnt improve but stays pretty much the same after a 4 to 8 week period i.e. his legs stay weak and he cant stand, this unfortunately is just the way GBS or CIDP is (I hope I make sense). Your son will defenitely need PT in his recovery. Here is the article.
[quote]

[B][FONT=Arial][SIZE=5]What’s In a Name? Important Differences[/SIZE][/FONT][/B][FONT=Arial][SIZE=5]
[B]Between GBS, CIDP and Related Disorders[/B][/SIZE][/FONT]
[SIZE=2][I]__________________________________________________ ______________________[/I]

[I]David S. Saperstein, M.D., Phoenix Neurological Associates, Phoenix, AZ[/I][/SIZE]

[FONT=arial][SIZE=2]This article will discuss the differences between Guillain Barre Syndrome (GBS) and related conditions. Recently I have seen cases where misunderstanding of these concepts led to less than ideal management. I have also frequently observed confusion about terminology among patients and physicians.

[/SIZE][/FONT][FONT=arial][SIZE=2]GBS may also be referred to as acute inflammatory demyelinating polyneuropathy (AIDP). This emphasizes the acute nature of this disorder: symptoms come on abruptly and progress rather quickly. Symptoms stop progressing, often within 2 weeks, and usually not more than 4 weeks. After a period of weeks to months, patients then begin to experience improvement. Although the majority of patients with GBS will do rather well, not all patients will recover fully and may experience chronic weakness, numbness, fatigue or pain. Once symptoms stabilize, there is rarely any further deterioration.

[/SIZE][/FONT][FONT=arial][SIZE=2]Chronic inflammatory demyelinating polyneuropathy (CIDP) produces manifestations similar to GBS, but there are important differences. Symptoms tend to come on more slowly and progress for a longer period of time. Patients may stabilize and recover, but then experience a return of symptoms in the future (this is referred to as the relapsing form of CIDP). Alternatively, patients may experience progressive CIDP wherein there is slow, continuous progression without a period of stabilization. By definition, if there is progression of symptoms beyond 8 weeks, the patient has CIDP. Patients with CIDP often need sustained treatment, but many experience complete remission or at least improve and stabilize on medication.

[/SIZE][/FONT][FONT=arial][SIZE=2]A less well-appreciated disorder is subacute demyelinating polyneuropathy (SIDP). SIDP is defined by a progression of symptoms for more than 4 weeks but less than 8 weeks. In other words, the time frame falls in between that of GBS and CIDP. This is an uncommon but interesting group of patients. It is necessary to identify these patients because there can be important considerations regarding their treatment (see below).

[/SIZE][/FONT][FONT=arial][SIZE=2]The most important reasons for distinguishing between GBS, SIDP and CIDP are to help anticipate outcome and to determine the optimal therapy. Patients with GBS are usually treated with a course of either of two therapies: intravenous immunoglobulin (IVIg) or plasma exchange (PE). IVIg and PE are equally effective (and there is not an advantage to using both treatments). Typically, a single course of treatment is given, usually as soon as possible after diagnosis. The goal of treatment is to hasten improvement. Patients with GBS will improve without treatment; IVIg or PE just accelerate recovery. As discussed above, the full extent of recovery will not occur for many months (or even years). This is an important point that is often not appreciated. Some GBS patients certainly do improve quickly and dramatically after being treated with IVIg or PE. However, most do not. Therefore, repeat courses of IVIg or PE or treatment with a different therapy are typically not indicated.

[/SIZE][/FONT][FONT=arial][SIZE=2]A number of GBS patients will have permanent symptoms. These symptoms are from nerve damage. IVIg and PE treat inflammation of the nerve, but do not help with nerve recovery. Nerve recovery can occur, but takes time. Persistent symptoms do not mean a person has CIDP. CIDP is diagnosed when there is continued [I]progression[/I] of symptoms (not continued [I]persistence[/I] of symptoms).

[/SIZE][/FONT][FONT=arial][SIZE=2]In contrast to GBS, CIDP patients are treated with repeated courses of IVIg or PE (or daily doses of other medications such as prednisone, azathioprine, cyclosporine or mycophenolate mofetil). Without sustained treatment, patients with CIDP will usually relapse and continue to worsen. Over time, the amount of medication can be decreased in many patients and, in some patients, treatment can be discontinued entirely.

[/SIZE][/FONT][FONT=arial][SIZE=2]Finally, we come to SIDP. Treatment is usually as for GBS: a single course of IVIg or PE. This will be sufficient for many of these patients. However, some SIDP patients are actually CIDP patients who got treated before they could declare themselves by progressing for 8 or more weeks. If they are not watched closely, patients with SIDP can quickly deteriorate. These patients will need more sustained treatment, as in the case for CIDP.

[/SIZE][/FONT][FONT=arial][SIZE=2]Now that I have defined the syndromes, I would like to give some examples of how incomplete appreciation of these disorders can lead to misunderstandings regarding therapy. I have seen several patients with SIDP diagnosed with GBS and treated with a single course of IVIg or PE. That is appropriate, but then when these patients subsequently worsened after a few weeks or months, they were either not re-treated or they were repeatedly treated with just a single course of therapy. They would improve and then worsen again and again. In such cases, continued treatment is needed to stabilize these patients (such as IVIg administered every month). A different error is to give a GBS patient IVIg or PE to treat chronic, stable, persistent symptoms. These treatments will not help. Recall that the persistent symptoms are due to damaged nerves. At the current time, we do not have therapies to restore the damaged nerves (but there are medications that can be used to help nerve pain).

[/SIZE][/FONT][FONT=arial][SIZE=2]Hopefully this review has helped clarify the distinctions between GBS, SIDP and CIDP and illustrate the differing outcomes and treatment approaches for these disorders. [/SIZE][/FONT][SIZE=2]

[B]Article from the Summer 2006 GBS Newsletter[/B][/SIZE]

[/quote]

Thank you for posting that article, Ali. I didn’t know about SIDP. I appreciate learning something new!

I hope that the lack of an update from Diane is because she is in the midst of IVIg with her son. I’ve really had them on my mind this weekend; I hope they are on the right track now. Bless their hearts.