Lauren’s 3 1/2 dianosed Jan 10,2008

lauren’s condition is most likely from doing too much. nerves need rest to heal. no pt till her cold is gone & plenty of rest lying down. then ease off the amount of pt & make her rest much more. take care. be well.

gene gbs 8-99
in numbers there is strength

Jen, I cant imagine a small child with GBS or CIDP and how hard it would be to get them to rest. There are other moms here with small kids that will come along and advise you….I just wanted to say best wishes and I’ll keep you and Lauren in my prayers.

Curious as to where in Iowa you are.

Stacey

Hi Jen,

I would have to agree with Gene and the others, daily PT is way too much. I went an hour 3 x week and that was a lot! It is a long, long process to get better and you have to rest and take it easy along the way. Reading books, playing sit down games, coloring, etc. Good luck though…..

Hi Jen,
I sent you a private message. Regarding the rest, I feel your pain trying to get a child to rest, Kevin never wanted to rest. You mentioned she does not complain about pain or weakness, do you think she is struggling more lateley?What signs is she giving you that there is a new concearn? Is there a new concearn? Kevin was 10, so he was able to articulate how he was feeling, so it was easier to judge progress, or backwards slides. Being that she is young, perhaps next time you go to pt, you could ask them to take grip measurements so you have a diagnostic tool to compare stregnth at different times. We did this, and it was a Godsend regarding concrete evidence of increased or decreased stregnth.
Rest is key, being a mom that has experienced this, I would say that you are doing a good job, 12-13 hours of sleep is awesome. It is impossible to keep a child from playing. Kevin would get depressed when I would make him lie around, so I beleive there is a balance between what is good physically as well as mentally. I don’t know where you live, but if it is getting warmer by you, a trip to the zoo with you pulling her in a wagon would be a way to get out and still keep physical exertion to a minimum. We would go to the pond at the end of the block and then sit and feed the ducks. Kevin still felt like he was getting out but not too exerting. Of course, video games!!!! If you have any technical questions, check your pm and give me a call if you like. Best wishes. Things do get better!
Dawn Kevies mom

Any infection can cause the immune system to also “non-specifically” flair and make autoimmune diseases worse. This is much more evident in children because they typically have much more reactive immune systems (I call them enthusiastic immune systems to parents because it is really a good thing in most cases). I work in a clinic that treats several autoimmune diseases in children and we frequently see worsening after a viral illness and in fact warn parents to watch for this in they have a cold/flu/fever. Sometimes there is no worsening and sometimes there is.

Regarding CIDP, it is still early. Although classically people worry about the 8 week point after onset of symptoms of Guillain Barre and say that things should be getting better by then for it not to be CIDP, this is not absolute and it may well be only that Lauren’s cold has caused a setback not that the disease process is a chronic one. That being said, no one knows why somethings behave as an acute process and others as a chronic process and so it is good that she was retreated with IV IgG. It seems prudent to be aggressive to minimize flairs.

Hold on to hope. children are amazing. If Lauren wants to play or be active and does not seem over tired by it–let her. Little kids still have a better ability to listen to their bodies than older kids or adults.

WithHope for cure of these diseases.

Hi Jen,
I’m so happy the doctor was so agressive. You are blessed for that. Regarding your fear of the cidp dx, I agree, it is confusing and stressful at first, but it does get easier. The treatments can also be done at home eventually.

Regarding the ivig, you mentioned only two days, did they only give her a maintanence dose? (1g/kg) or are they spreading out 2g/kg two days twice a month? The headaches and getting sick are common in some, I cannot lie, Kevin has that problem each month, but it does improve. Certain things can be done, slowing down the infusion rate, the obvious pre-meds and IV solumedrol. ( we have not tried this yet because of my hang ups with steroids, but we are real close, if we cannot keep it under control this month. You can call me again if you like!
Sincerely,
Dawn

i just wanted to let you know that i just sent you a private message. feel free to contact me after you read it if you want.

my thoughts and prayers continue to be with you and your daughter
mary

Jen,
I am just a mom and this is just an opinioin, but if your daughter has had three rounds of ivig and they help, and now without it, you notice changes again, I would say it is not gbs and is cidp. What state do you live in? I know there is a doctor at Emory that is a peds neuro and specializes in gbs/cidp. His name is Dr. sladky, then there is Mayo. At the VERY LEAST, I would be getting another opinion. Peds neuros that specialize in muscular dystrophy are usually pretty good, maybe you coulkd call your local md chapter and ask for the best doc in your neighborhood. Good luck, be aggressive and act fast, this disease does not wait around!!!
Dawn Kevies mom

Hi Jenn,
The doc that is speaking in Chicago is NOT Kevin’s dco. Our doc did his training with Dr. Arnason (spelling) who is speaking at the symposium. He is not a peds doc, and is at the University of Chicago. Kevin’s doc, who in my opinion walks on water, is at Rush and is the head of pediatric neurology and MD clinic. Personally, I would go to mayo, once you have the correct dx, the mayo docs work with the docs in your hometown. If it were my child, I would do the additional round of ivig to hold us in case it is cidp until Mayo or where ever you go can get you in. On a positive note, you can be releived in knowing your current doc is not just dropping the ball and is willing to be proactive while you figure things out.

Although rest is imperative, realistically with a child it does not always happen, I too am still guilty of that with Kevin. You can’t beat yourself up about that, I just try to make him rest on rainy days or days when his friends have base ball practice or games. We bank our energy!!!

I guess if you get the ivig and you notice her weakness improving, you kind of have an answer too, so if in fact you do decide to do it while awaiting mayo or where ever, ask the doc if you could have some grip measurements done before and after ivig as a comparison. Did you guys ever go to get the additional ncv/emg? If so, wha there any change from the initial one? maybe if you did not get an additional one, you could even do that before the next ivig. Good luck, there are so many questions and decisions ahead, but the answers will get you to the place you need to be! Good luck and best wishes!
Dawn
Kevies mom

Don’t ever be afraid to get a second opinion. Your doctor shouldn’t take any offense to that. We went to the Cleveland Clinic for a second opinion, and were more or less told everything that we had already heard, however it puts your mind to rest alittle, knowing you have done everything that could have.
Mary

Hi Jenn,
Awesome news! I told you it would be no big deal!!!!! Regarding the home health care, 911 would be to your house quicker than she would probably be seen at the er. The home health nurse should have an anphalactic iv kit and an epi pen that you keep at your house. i always bring it out and put it next to the nurse when they are at our house. You might want to get some containers with drawers to organize the stuff. I found these awesome 12 x12 ones at Walmart and everything is easily found. Otherwise you have to always work out of the cardboard box. You may want to do that since she is only infusing one day, we infuse over 4 days. Pay really close attention, a maint. dose every three weeks might not do the trick for long. don’t forget, you do not want any symptoms, otherwise the relapse has already started and the healing starts from zero. What is her max flo rate? How many grams is she getting in one day? If the rate is slow and she is going to get it for only one day, she should be ok reaction wise. The reactions if they were going to affect her would have happened the first loading dose, and now she is not even getting a loading dose. It will be ok, just always give her the benadryl 1/2 hour before the nurse is due, the tylenol as well. Have you been told about emla cream? If you guys establish a general area that she will have the iv, you can apply this cream an hour prior and cover it with glad press and seal and the iv stick will not be as bad. (topical numbing cream) I guess unless her veins start to give you guys trouble, she won’t need a port, that is good news. Call me, I want to tell you something else. Great news, I am so happy for you guys, I can see that first time kevin was running around like a mad man after the first ivig, i will never forget it!
Dawn

Hi,
I am sorry to hear about your daughter. Mine was also 3 years old when she was diagnosed and it is very difficult for all involved. Everyone told me that kids are resiliant, and it is true. Hang in there and try to get some rest yourself.

As for her symptoms, our PT’s told us there is a delicate balance between too little and too much PT. Too much activity will set her back. I am under the impression that PT does not help her nerves recover, it helps the muscles strengthen. In my opinion, if she is showing symptoms after lots of PT, I would look into cutting back. Also, after having GBS, SYMPTOMS of GBS may occur during an illness but that is not necessarily a recurrance. My daughter was pretty bad–hospital for 3 weeks and came home with a wheelchair, feeding tube, and breathing machines. For about a year, every time she got sick, she had weak legs and other symptoms. It took her longer to recover from illnesses, too. This is probably what your daughter is experiencing. If you can wait it out, help her rest (most important), you will probably see those symptoms go away.

Also, to encourage you, my Hillary is almost back perfect now–praise the Lord!! It has been a little over a year and she only has occasional pains. Her body does tell her when she needs rest, but that is ok because 4 year olds don’t always know when they are tired. Also, Hillary did not get GBS symptoms with her last cold. Be encouraged. It may not look like it now but things will get better.

Let me know if I can be of help.

Laine–Hillsmom

Jen,

I wanted to let you know I sent you a private message. My daughter was also 3 1/2 when dx, and my heart goes out to you and your family. Let me know if I can help at all.

Hillsmom

Hello, Jen..

I know just what you are going through. It has been almost 2 years for us, and Dev is not showing signs of improvement. I pray also…it hurts to see your baby go through this, time after time…but, you are NOT alone. I am available to talk with at any time.

My thoughts and prayers are with you…and all.

Linda In Cali