a Newbie in need of help…..

Please, private message me your phone # if you like. My son was in exactly the same boat last year. It took three doc. to get proper dx. First was he doesn’t want to go to school or pushed in sports, second, a rare genetic disorder called cmt and today, gbs.

We had a spinal tap to confirm dx, although the ncv/emg did support dx, it also had the findings of the cmt dx. Only the spinal could confirm. Not all w/ gbs or cidp have an elevated protein in the spinal fluid, but most do.

Most importantly, AFTER THE CONFIRMATION OF THE SPINAL WE WERE ADMINISTERED IVIG. It is essential that ivig or pp be administerd. At this time there is speculation as to the explanation of what the ivig does, but it has been said that until recently, that the ivig halts the continued process of demylienation. Our doctor also mentioned that it is a buffer between the myelinsheath and the nerves so that the immune system can no longer attack the myelin sheath itself. Instead it bonds to the immunities that are introduced via the ivig. The explanation is so technical. But it is of great urgency that she recieve some form of treatment. ALSO< DO NOT ALLOW ANY MORE STEROIDS APPARENTLY THEY DO NOT AID IN GBS ONLY CIDP. My son was in icu for tenn days, with in a week of the more drastic symptoms, he was starting to have trouble breathing and the day we brought him back for the third dr trip. we had to lift him into the car. He could not dress himself at this point, or even hold a pencil or a can of pop. I will pm you my # if you would like to talk. If you are not yet familiar with this site, you can view you pm on the top right hand corner under the welcome and your name. Click private maessages. Good luck! Dawn Kevies mom

Has the doctor, anyone them, done a spinal tap? If not, at this time this should show an increase in the protein level. If it does show an increase ,in protein level, it is probably GBS. If so, then your daughter needs IVIg or plasma Phararesis treatments ASAP. Oct 31 is too long to wait.

Where are you located?

Has she been seen by a neuroligist with GBS experience?

Please call me if you want to talk about this.

888-212-2728

Dear Kayrus,
I messed my finger up so it is difficult to type, call me, I pm you my number. Regarding your ques. about plataeuing, Kevin tripped for the first time Aug 15th and I believe he was at his worst or plataeued as you say by Sept. 1oth give or take a few days. I believe the amount of time it takes to get to your worst is the differentiation between gbs and cidp. However, I also believe damage still can be done after that plataeu. For instance, Kevin was at his worst at about the tenth, but when we recieved ivig on Sept 229-Oct 2, on the second day of ivig, he was already running down the halls at the hospital. If your doc can’t get you in sooner, call the after hours # and start crying and tell the doc your daughter is weaker and you want a spinal through the er and you want her admitted today and ivig asap. Or just go to the er w/ ncv/emg results explain symptoms and demand spinal and ivig. Time does matter. Good luck
Dawn Kevies mom

those tests should be done ASAP and IVIG should be on the menu again ASAP. Taking that course of action now could prevent long term issues.

My heart is with you on this. And you will be in my thoughts for the duration.

DO contact Dawn, she’s been thru this doctor mill and can share lots of insights.

I don’t really understand the difference in onset of cidp vs. gbs, but my cidp started around the time I was 14 (I’m 21 now). My onset was very slow and the fatiuge, pain, etc you’ve described sounds very familiar.

I really didn’t start to get “better” until I was 20 and finally given IVIG. Neurotin (which I was given, and then tompamax, and then the drug cocktail I’m on now) is only for the pain, and does not treat the disease or do anything to alter the progression. It just makes daily living bareable – which is important! – but in the face of gbs/cidp that’s really not enough!

please feel free to message if you have any questions and good luck with everything! I hope your daughter gets the treatment she needs soon.

Hi Kay, Welcome to The Family. Ask as many questions as you have or just vent when you need to. Your daughter should get ivig, no more pred-it does nothing for gbs. If they have already dx gbs than a lumbar puncture is not needed, if there is some question about the dx than a lp would tell them what they need to know if the person reading and testing the serum knows what to look for in it. She needs to see a neuro who has a good knowledge of gbs, especially in a pediatric patient. You have a good start on doing your research, this site has more knowledge than alot of drs. We have all been through one form or another of either gbs or cidp or other syndromes. Rest is the best thing for your daughter at this time. Her nerves need time to heal, movement causes more nerve usage which causes the nerves to misfire which in turn causes more pain. Rest in a prone position is best. Take care.

ivig as soon as gbs is Dxed no matter how serious they think the gbs is. the docs should know this. it is $$$$ & sometimes they hold it off giving you a different reason why they are not giving the ivig. politely demand it.take care. be well.

gene gbs 8-99
in numbers there is strength

If I were in your shoes, which I have been as a caregiver to my fiance with GBS, I’d bypass the doctor’s office and go straight to the ER. Once in the ER, they can run all the necessary tests, and you won’t have to wait until the 31st. GBS is a serious illness. My fiance almost lost his life from it. You don’t want to wait to find out if it’s going to progress because, in a worse case scenario, she could end up on life support for who knows how long. I’d take her to the ER and demand a spinal tap.

Good luck!

Shannon

FYI – another reason doctors are sometimes hesitant to give IVIg until they know it is needed is because it has risks too – it is a blood product (pooled from MANY donors) and therefore has risks, including possible infection and contamination. If they give IVIg and it turns out it wasn’t GBS, then they just spent a lot of the patient’s/insurance company’s money plus put the patient at risk for nothing. Just throwing that in there so you don’t think that physicians always hold off on IVIg just because they are stingy or don’t care about what happens to their patients.

there are minor risks w ivig just as there are risks w everything, but i did not know & don’t think infection and contamination per say are ivig risks. it is the front runner for gbs treatment. also some docs hold it back cuz they think the particular case is not serious enough which no one can know till after the fact. if it were themselves or their family, it would be given immediately. take care. be well.

gene gbs 8-99
in numbers there is strength

I know it is hard sometimes but DEMAND that your daughter get a spinal ASAP or go to the ER and stand firm. Tell the ER that her symptoms are getting worse and you want a spinal to help rule in/rule out GBS.

My then-11 yr old daughter had GBS in Feb 07. She had the flu and then a week or so later began having trouble walking. They gave her a tentative dx of GBS, which they designated ‘mild’ as it mainly affected her lower body (but she was extremely weak and extremely fatigued all over, lost 10 lbs and only weighed 80 to begin with…had very slow heart rate, weird night sweats, all sorts of things). They kept her in hospital for a week but when it didn’t progress to breathing issues they decided it was resolving on its own and sent us home. She was able to walk about 30 feet with a walker at that point, very jerky/shakey and it was very difficult. When they discharged her, she could still stand up on her own, just barely. But a week later, she could not.

The spinal, which was given within about 12-24 hours of onset, was negative. They did not repeat and I didn’t know I should ask them to. I think if she had had it repeated, it would have clearly indicated GBS and she would have likely gotten ivig.

Anyway. Long and short, she was discharged and continued to slowly get worse for a couple weeks, not better. Neuro didn’t really think she was worse (though her reflexes had degraded further, and though she could barely stay awake during the exam). He thought I was coddling her. I wasn’t. I asked about ivig and he talked me out of it, saying it might make her worse, and did I want that? By the time I researched more here and asked again, she was too far in for it to be of help. Our neuro (former neuro) told me it was only for vent patients. That is NOT true. It is the standard of care for GBS. I know that now.

Because she did not receive treatment, her recovery has been very slow. I hope that is not the case for your daughter, but I encourage you strongly to seek another opinion or go to the ER and demand a spinal NOW–today! Maybe it will save you months of struggles and uncertainty. My daughter still cannot walk without crutches. She was in a wheelchair for a long while (though she could use a walker, it was so hard it was only good for really short distances) . She is getting better, but it has been a long and hard road. If I could turn back the clock and demand ivig earlier, I would.

DON’T let the docs intimidate you!
Send me a private message if you want to discuss further. I don’t want to see another child go through this.

[QUOTE=gene]there are minor risks w ivig just as there are risks w everything, [B]but i did not know & don’t think infection and contamination per say are ivig risks[/B]. it is the front runner for gbs treatment. also some docs hold it back cuz they think the particular case is not serious enough which no one can know till after the fact. if it were themselves or their family, it would be given immediately. take care. be well.

gene gbs 8-99
in numbers there is strength[/QUOTE]

Although I agree that the risks are worth taking for the benefit of GBS treatment, you should know that there is ALWAYS a risk of infection from blood products, however small, although thankfully no incidence of Hep B or HIV transmission in the U.S. Copied from an NIH website:

As with any biologic or pharmacological product, the potential for new or previously unrecognized adverse events should be anticipated. With IVIG these include the following:

* transmission of blood-borne pathogens, such as the newly identified hepatitis C virus.
* Immunosuppression–for example, administration of IVIG has been associated with transient effects on immune response that do not appear to have clinical significance. However, with increased dosage of IVIG or new products for the treatment of specific infections, the possibility of adverse outcomes from immunosuppression should be considered.

If I could turn back time, I would not have agreed to leave the hospital til she had ivig.

I try to look on the ‘bright side’ that she wasn’t exposed to potential risks of ivig. However, I know now what she has gone through because of not being treated properly. We don’t dwell on that too much, we have tried to put it behind us as it’s too late to change the past. But she is a dancer, and she now can’t walk. I truly believe she will again, someday. But who knows how long that will take? I’d go for the ivig in a heartbeat.

Certain tests etc made docs decide early on that it was ‘mild’. It wasn’t. I bet Gene is right: if it’d been the neuro’s kid, they would have gotten the ivig.

I’m so sorry to hear that your daughter didn’t get her IVIg, and is suffering now because of it. You’re probably right that the neuro’s daughter would have gotten IVIg right away – like the day of diagnosis.

Kayrus,
Just wanted to see how your daughter is doing now? Please give us an update sometime. I hope I wasn’t too pushy or bossy in my earlier posts, I am just trying to convey what I learned through my experience.

Hang in there. I hope things are going better…

Cincymom

PLEASE! Contact the foundation, they will help you locate a doctor. TIME IS IMPORTANT! IVIG IS NEEDED! With elevated protein and conduction blocks on the emg, there should be no questions. Can you demand to see the neuro? Can you take your results and go to another er? Neurotnin only helps the pain, it DOES NOTHING for stopping the gbs attack. Can you work with a family doctor to prescribe ivig until you can make contact with a neuro? PLEASE call the foundation tommorrow!

Good luck!
Dawn Kevies mom

I will call the regional director in your area, maybe she can get your number and call you or respond to your thread with some info.
Dawn Kevies mom

I’m so sorry you have these additional problems to deal with (convincing doctors to treat your daughter). I too went through a similar situation – delays and denials with my daughter (20 yr old at the time).

Our tale is too long and twisted to hash over here, but one thing I thought I would share with you: after being refused treatment through emergency in the middle of the night w/my daughter in serious condition, We stayed in the examining room all night until 8:00 am the next morning. I then went up to the administrator of the hospital – and oh boy – did he hear everything I had learned about cidp. I think the most important thing he heard was “standard of care”. We had been shuttled from one hospital to another for several months and I was determined to get her the treatment she needed. Long story short, we have never been refused treatment when she needed it (and no, I never threatened to sue). Ultimately, it came down to communicating the facts of this illness and a sense of urgency to someone who had both the authority and the responsibility of patients getting proper care. In addition, one of the first doctors my daughter saw, refused to believe she could have relapses and refused to order additional ivig for her – until we convinced him that there really is a form of gbs that reoccurs (cidp) – once he “got it” he became an important ally in our fight to get ivig during the shortage.

This is an illness that takes lots of time and lots of money – those things (in our experience) scares some doctors that don’t have any experience dealing with gbs. The signs in your daughter’s case are there – elevated proteins, EMG showing conduction block, clinical signs of weakness, lack of reflexes, etc. This is as good as it gets – there is no difinitive test that will say here it is -> GBS in this spot. It sounds like no one wants to make a committment because they know it is going to be a long haul.

I know this does not sound encouraging, but as soon as I realized this unspoken reality, I was able to mobilize my resolve and stand firm. Either ask for a referal for a doctor that has experience with this illness (Gene may be able to help you with this) or take it upon yourself to learn everything you can and share that knowledge with someone who can take action and make it happen. It’s not easy – but worth it! This month, we are 2 years out, and my daughter is doing wonderful (knock on wood). She has now returned to college part-time: I am so proud of her and her struggle to get her life back. I wish you and your daughter well. I hope something in my rambings can help you get control of the situation, and that it doesn’t take as long as it did for us.

best wishes,
cd

[QUOTE=Kayrus]

She has been seen by a Pediactric Neuro who is leaning
towards Gullian Barre but doesnt’ think the risks of the IV
are worth it right now

He told my Husband we would see on Nov 5th
AND for now no pt or rehab!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
[/QUOTE]

Just logged on and read your last post –

Risks? Ivig has a far greater safety profile than most drugs prescribed now days. He is willing to risk her condition to deteriorate past the point that she could make a full recovery??? I hope he will be able to prescribe a course of action at your next visit.

Hi Kayrus,
The name of the person in your area is Alex Holiday. I tried to send you the info yesterday, but I do not see it on the thread. If you do not have a directory, try calling the foundation and they will give you the number.

Also, my ten year old had 19 treatments of ivig. I will not lie, there were some uncomfortable reactions, but even out of my son’s mouth came the words, I would rather be sick from the treatments for a couple of days than be in a wheel chair, so lets do it mom. There are many other children on the site who receive ivig every 10 days, or 2 weeks, it varies. They have been getting it for years. To me, it is a true miracle. I do not know where we would be today without proceeding with the treatment.

Kevin still has symptoms that hamper certain abilities, in fact he is home today and we are awaiting a call from the neuro. Without ivig, I can only wonder how much worse things would be for my baby and others on this site. I am just a mom, but I have gained enough knowledge since this illness to know to question doctors and do my own investigations. After all, they are human like us and make mistakes too. I feel it is a mistake to wait until November and then seek ivig treatment.

As compact disc mentioned, go to the hospital administrator. More than likeley he/she is a doctor as well and will have knowledge of gbs and he could look into your case as well. Good luck to you!
Dawn Kevies mom

kay,

where do you live? take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Kayrus,
I know how frustrating it can get trying to get a Doctor to listen to you. 🙁 My symptoms started after a sinus infection in Feb 05 when I lived in SC. I spent a week going back and forth to the ER By the end of that week I couldn’t walk. I finally was sent to a Neurologist who hospitalized me immediatly and started IVIG. I was paralyzed from the GBS. I spent a month in ICU and another month in a rehab hospital. I got worse before I got better. We recently moved back to upstate NY in July 06. My wife and I are originally from Saratoga. We live in Gloversville now. In September 06 I had a relapse of my GBS and I was sent to Ellis Hospital in Schenectady NY. The ER doctor at my local hospital had me transported there because he said it was the best one in the area for neurology. Stick with this website because it really helped my wife and I get through this. If you need to just talk to someone about GBS. I’ll pm my phone number to you. You can hear it from the side of the caregiver, my wife or from me the patient. If you want to meet with us face to face we can do that too. Here’s wishing you the best.:)

kay,

sorry, but i draw a blank for docs in upper ny state. sounds like you are getting help from others. it can be so frustrating. take care. be well.

gene gbs 8-99
in numbers there is strength

I can’t add anything to the good advice you are getting from others; just adding another voice of encouragement and unity. Keep on persevering with questions and insisting on answers. My neurologist was the greatest help. Most hospital staff knew little to nothing about GBS, but the ER doctor after a spinal tap noted the possibility of GBS and the rest is my history, the details of which are not important here. Daniel