newbie child GBS or what?
AnonymousMarch 25, 2009 at 2:20 pm
I have been reading around on this site for several months and I guess it is my turn to seek help from everyone who is willing. Here is our story. In the late part of 11/08 my 2 year old daughter started crying at night like she was in pain and I took her to the pediatrician 12/4 and he said night terrors. Two days later she woke up with a puffy left knee and was walking with a limp and by the end of the day she could not walk at all.
I took her back to the pediatrician and he ordered an x-ray of her knee and blood work. The x-ray showed fluid around her knee and we were told to give her motrin. While this was all happening he asked if she had had any infections recently and we said no but several days later she had the rash that she had had fifth disease. I know this rash as my son had fifth’s disease several weeks earlier and I assume my daughter got it from my son.
She went two weeks unable to walk and I had her at the pediatrician about every other day. He was consulting with a Rheumatologist at Nationwide Childrens Hospital in Columbus, Ohio and she said to put her on Naproxen and that she didn’t need to hear from us until she was on it for a month. All the doctors were convinced that she COULD walk but that she WOULD NOT walk due to pain. We kept saying she CAN’T walk and she would if she could.
We took her to ER at Children’s and they called the Rheumatologist and she said that same thing again and refused to come and see and sent us home. WE made an appt. to see her in her office and she looked at Selah and said she had inflamation in her joints and she was puzzled and wanted to admit her.
Selah was admitted to Nationwide 12/18 and had every test run on her: bone scan, blood work, CT scan, x-rays, 1 1/2 hr MRI of her brain, spine and pelvis.
After 6 days they told us she had GBS and moved her to the ICU where they did a spinal tap and nerve conduction study to further confirm GBS. Once again we were asked about the virus thing and we said she has not had a cold, flu, diarrhea, vaccination or anything lately. We did tell them again about the fifth disease thing and they finally drew a blood titer and it came back 3.2 and then they got all worked up. They said that they thought that the fifths was the virus that caused the GBS. We talked to about 6 doctors including the Chief of Neurology who said that there is no medically documented case of anyone ever getting GBS from fifth’s disease.?????????
She received 5 days of IVIG and was sent to the rehab floor where she learned to sit up, crawl, stand up and eventual walk with one hand assistance. We were discharged from the hosptial 1/16/09 and within 5 days she was walking independently. She kept getting better and better and her gait was almost normal except that she put her feet down kind of floppy. While we were at the hosptial, we were told by about 16 doctors that one cannot get GBS again and we were relieved. We were also told that she would have a slight set back when she got her first at home virus and not to worry. It’s normal.
One doctor out of the many we saw said that she had CIDP based on two things 1. She had a slightly inflamed spinal cord based on the MRI 2. Her symptoms had come on slowly with the two weeks of “night terrors”.
2/7/09 she started to show decline. Subtle at first but between 2/7 and 2/23 she went from walking with ease to only being able to take about 5 steps. On 2/14 the rehab doctor told us she was just tired from use and sent us home. I called the neurology dept. and they said we will see you in an hour when you get here. They examined her and said that she needed more IVIG and one of the doctors said that ” she has unnamed autoimmune disorder and that she was the only one on the worldthat had it”. We were not sure what to do and so we did not have her admitted and decided to pray about it at home. We had an appt. 2/23 with the Chief of Neurology and he said that she needed IVIG or we could wait it out to see what would happen. We elected to admit her and she received 4 more IVIG treatments. During this whole ordeal her left knee is still as puffy as it was on 12/4.
We came back home and she started to improve again but this time it was a lot slower. She started to walk more but everything was slower to come. We saw the Rheumatologist 3/5 and she said that she definitely has arthritis in her left knee and possible right knee, left wrist and left ankle. She thinks it is probably temporary and that it was caused by the fifth’s disease which can cause joint inflammation but mostly in adults with fifth’s. She put her back on Naproxen and said that she might need a steroid shot in that knee and sent us home. Selah has been complaining of knee pain on and off for weeks and it does not seem to be getting better. She has also had a set back with her walking and ability to bend over and pick things up off the floor. It is so hard as she is two and she cannot always tell us exactly how she is feeling.
Thank you adults for describing how this whole process feels. When she complains of back pain or feet pain, I know this is GBS as you all have described. Does anyone have any feedback or suggestions? Like I told the Chief of Neurology, we are ready to sell our house or do whatever we have to do to get her whole again. WE KNOW GOD CAN HEAL HER IN THE BLINK OF AN EYE BUT HE HASN’T CHOOSEN TO DO THAT YET. Who is considered the foremost authority on GBS/CIDP? WE live in Ohio but we are willing to travel. Thank you in advance everyone and thank you for being willing to listen to me vent and tell out story to those who understand.
AnonymousMarch 25, 2009 at 3:51 pm
I dont have GBS, I have CIDP…I’m still learning. I cant even imagine your struggles in getting help for your child. I have sent a message to Dawn Kevies Mom to read this thread. She is a wealth of info and I know she can direct you and if not be here to help with what she knows.
Prayers for you and your little one…
AnonymousMarch 25, 2009 at 9:55 pm
My name is Sherry Price and I am the liaison for South Eastern Ohio. I am from Morgan County (Malta). I’m not sure where you are located but if you could send me a private message with all of your info I will try to get some information to you as soon as possible. I wanted to send you a private message but wasn’t sure if you were familiar with that yet. I will post my phone numbers at the bottom so you can call me anytime day or night. Hopefully I can help you figure something out. I might be crazy but I actually think I might know who you are. I spoke to a young lady at a local store named Jo-Ad’s and she was speaking about her little sister. I wander if this is you. She didn’t mention what was wrong with her and I didn’t want to seem rude by asking. I did tell her I would keep her in my prayers. Get with me as soon as possible.
Take care and God Bless
home phone 740-962-4539
cell phone 740-605-4840
March 25, 2009 at 10:35 pm
So sorry for your situation, my son was 10 and now is 12. There is an arthritis called junior rheumatoid arthritis. I would say the water on the knee would go with some other dx besides cidp, in conjunction with. When my son was 20 months, he started walking like Quazimotto all of a sudden, he would drag his leg. the did a hip ultra sound and called it transient sinuvitis, it did go away about 2 months later, apparently it does happen to children at that age. Not sure if it can happen in other areas ie her knee etc. About the cidp, did she have an elevated protein in a spinal, or did the ncv/emg indicate slowed velocities or conduction blocks? those would be definite indicators of cidp. The swelling of the spine as well would indicate inflamation. Did the ivig help? It sounds like it did. It may not sound encouraging, but I would consider that positive in this situation. Probably the best advice I can give is try to find some positive out of the good things that do come. We are lucky as well and have great results with the ivig. If it is determined to be cidp, you will have to have regular treatments scheduled according to her needs. You will start out with loading doses as you have done and then repeat them at a regular schedule. Trial and error is the only way to figure out the final plan. It could be once a month, bi-weekly, weekly, you just have to watch carefully. About the origin, it really is irrelavant regarding the treatment. Some people get it from raw chicken, immunizations, flu shots, strep, sinus anything that turns your immune system on or triggers it and then it gets confused. a person w/ allergies sinus’s are attacked, exczema is an attack on the skin, arthritis the joints, etc…. it is all the same in that they are auto immune issues that attack different things once a trigger is started. Personally, if you were to tell me there was pain in the joints I would attribute it to the cidp, the fluid throws me towards the jra or some other type of arthritis. My point being with a few things going on and no real certain answer from docs, I might make the journey to Mayo if it is an option insurace and money wise. hopkins too is an option. In Michigan there is a Dr. Richard A Lewis who attended the symposium that impressed me greatly, however he is not peds, not sure if he takes peds, maybe as a consulting doc? There also is a doc at Emory, Dr. Sladky who is peds and has worked with cidp children. Feel free to private message me and we could talk on the phone if you like. These next 6 months will be the toughest months of your life. PLEASE rely on family and people here. My family did not and still does not really get it. But in the beginning of my journey I found great solace and information from people on this site. Plenty of people will be along. the only thing to remember is these are our experiences and everyone with this disease is so different, so what works for us may or may not for the next person. Trust your insticts and find a doc you trust. Ask questions, start a binder and section it off, questions, test results, reports, phone numbers etc. Always bring that binder with so you can have results with you demand copies of everything. If there are repeat ncv/emg, bring the old results with so they can do an exact comparison on the same nerves with the same measurements. If you are at one hospital now, sign a release form allowing your records to go to your neuro and allert the staff. If they go to your doc there is no charge, otherwise it can be upwards of $100 I learned that the hard way. Good luck to you. About the God comment you made, I am still working on trying to figure that out. I cry every time I go to church and ask God Why a child. Kevin asks why too. I just try to convince us both that it is making us both stronger in other ways for some bigger thing. At least there is medicine AND people do go into remmission. As a child there is an even better chance that the immune system can reset itself during puberty (or so I have read) I have this stupid $25 bauble of a silver ring that says hope, I never take it off since I got it about a year ago. I gave one to each of my other mom friends on this sight too, we all believe there is hope, some days more than others but it is always there.
Dawn Kevies mom
AnonymousMarch 26, 2009 at 5:24 am
Hi, welcome to this site. I wanted first of all to you and Dawn and everyone, to say to not give up hope and also to follow your heart and what it says about this little girl that you love so much. Second, that is never “normal” for a child not to walk for days and days on end. There may be more to the story than you said, but it does not seem typical to treat a child with motrin or naprosyn for a month if it is believed then that she is not walking because of being in too much pain. If there is that much pain, one would hope that there would be a great effort to find out why and to reduce the pain. I just hate to hear of little ones suffering because they cannot explain why they hurt or all places they hurt. Did she get other pain medications? Did she get steroids such as prednisone? Has Selah had an MRI of the most painful knee? Has she had blood tests to look for Lyme disease, juvenile rheumatoid arthritis, and blood counts or tests to make sure that this is not something else. I work with children with leukemia a lot and have seen leukemia present with refusal to walk and sometimes with swollen joints. I am not saying that this is the reason, but it is an important one to make sure this is not the case especially if steroids have been used at any time, because leukemia needs a different treatment plan and it is serious so that it is important to make sure that it is not in any little child with limp. Also, although leukemia is a scarey word, it is very treatable in little children and the pain gets better really fast after the proper treatment is started. The children I have seen with “rheumatologic” symptoms/signs and not blood abnormalities so much (like anemia, low platelets, or leukemic cells in the blood smear), feel much, much better within a few days of starting treatment. Their parents often say after a few days that they have their child back. I say this only that the diagnosis of leukemia sounds so bad, but knowing a reason for the pain can lead to effective treatment of the underlying problem.
In Ohio, Cleveland clinic has an excellent reputation for complex diseases. I work at Riley Hospital for Children in Indianapolis which also is excellent with cases that are unusual. Here there is a pediatric neurologist, Lisa Smith, who seems very knowledgable about GBS in children and there are also several wonderful rheumatologists that are experienced in searching out the cause of joint pains–no matter the cause. If you are looking for a second opinion for a situation that has been described to you as “unique in the world”, I would strongly suggest looking for a place that will look at the whole child not just consideration of GBS or arthritis.
Finally, people can have GBS and it can be slow on onset, slow to go away, and have MRI changes especially in the lowest part of the spinal cord (Cauda equina and ventral nerve roots). So the fact that little Selah needed a second treatment with Iv IgG or is still struggling does not necessarily mean that she has a chronic problem such as CIDP or JRA or some unique persistent autoimmune disease, it just means that the jury is still out and more needs to be thought about.
Listen to your heart about your little girl. If in your heart you feel like she is not getting better yet, keep pushing for answers there or elsewhere. Advocate for her. You are her voice because she is so young. AND keep hope.
WithHope for a cure of these diseases
AnonymousMarch 26, 2009 at 8:25 am
Another possibility that can cause arthritis and neuropathy with EMG abnormalities in the very young child is dermatomyositis. One easy test that should be done are muscle enzymes–especially a CK (used to be called CPK) blood test. From the book I was reading yesterday, children with dermatomyositis have a lot of difficulty getting up off the floor and sometimes holding their arms up.
I probably also should have said that my neurologist sees children as well and he is very well known neuromuscular specialist–John Kincaid. He is excellent and he and Dr Smith work together, but she is the new Pediatric specialist in neuromuscular problems.
March 26, 2009 at 10:08 am
sorry no info
AnonymousMarch 28, 2009 at 3:56 pm
First of all, I want to thank you guys for your interest and help. When we were admitted the first time to the hospital, they thought Selah had JRA and then said that the tests that they ran and with no family history they pretty much ruled that out although they said that it is still a small possibility. Yes, they did a spinal tap and we watched them do it under conscious sedation. There was protein and they said that this helped with the GBS diagnosis. For some reason I do not have a copy of this but I am working on obtaining this. The IVIG appeared to help her a lot the first time she received it and a little the second time but not near as much.
I am a little confused about a few things. I have read about 6 sources on CIDP and most of them say that CIDP does not have a presenting virus and comes on a lot slower then GBS. I have read info on GBS and CIDP from NORD, NIND and what the foundation sent me and I think they are very different. Even now, most of the doctors do not think it is CIDP and I am relieved. I have to say that this is very confusing. I took Dawn’s suggestion and started a folder and it makes me feel better. Thank you for the suggestion.
I agree with the comment made from WITH HOPE in that Selah went weeks without walking and no one wanted to do anything about it. I tried to make some things happen and it didn’t help. Selah has never had an MRI if her knee. They should have done that when they did the 1 1/2 hour one on her head, spine and pelvis! She did have blood work for Lymes at my insistent request that came back negative. What should I look for on Selah’s blood work for Leukemia indications. I think they ruled this out with the spinal tap and Nerve Conduction Study. She has never been on steroids unless Naproxen is a steriod. I will look at Selah’s bllod work to see if anything on there is named CK. After much pursuing on my part we are seeing the Chief of Neurology at Nationwide Children’s Hosptial and his name is Steve Roach. He is very published and is considered an expert worldwide in childhood stroke and does not claim to be an expert in GBS. He is also on staff at Ohio State Medical Center. He said he has gray hair for a reason and has seen a lot of GBS but not much CIDP. He is baffled by the Fifth Disease thing and a little intrigued. I told him to do a special study and write a paper on Selah but like With Hope said, the jury is still out and I am praying that the ultimate healer will step in before the midnight hour. Look forward to hearing from anyone who feels led. Kevin is in our prayers and I do not say that flipantly!
AnonymousMarch 28, 2009 at 7:57 pm
I did a PubMed search for Guillain Barre and parvovirus and there are two case reports of people with GBS after parvovirus B19. One is in Japanese and was about an adult although the abstract is in English. The other article is in English, from a different group of Japanese doctors, and discusses a 4 year old boy with GBS starting 11 days after the start of erythema infectiosum. The infection caused by parvovirus B19 is called Fifth’s disease (because it was classically the fifth disease causing a characteristic rash in children) or erythema infectiosum (red infection). It is also called “slapped cheeks” because people often have fever for about 5 days and then get a very characteristic bright red cheek rash that makes them look like they have had their cheeks slapped. The second reference was by Y. Minohara et al and in Journal of Infections, vol 36, p 327-28 and published in 1998.
Since GBS is rare and is a disease with a wide range of ways to manifest in different people, each summary is based on the experiences of the authors–which differ. There are a lot of differences in what is presented. I would suggest first believing what is presented by the GBS/CIDP foundation and by the NIH. Both of these are more “up to date” than a textbook or even NORD. (at least what I have read from NORD).
AnonymousApril 21, 2009 at 8:48 pm
I haven’t been on the website for a very long time. I saw your post and wanted to let you know that we too live in Ohio. My daughter was diagnosised in September 2006, and luckily the diagnosis was quick. She spent about a month in Toledo Children’s Hospital where she received excellent care. We did decide to get a second opinion, and we went to the Cleveland Clinic. They have a pediatric neurology department. Everyone was fabulous there, caring, compassionate and through. If you want to stay fairly close to home, I would recommend this. If you want to contact me personally, feel free.
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