Best Dr. for cidp child
AnonymousApril 16, 2009 at 10:52 pm
I need everyones help again for my 2 year old daughter, Selah. She went to the hospital today for her steroid injections in her knees. The arthritis in her joints are from Fifth disease which caused her “GBS”. I begged them to do a spinal tap and nerve conduction study and her neurologist only ordered the Spinal tap. The Rheumatologist let it slip that the protein in her spinal tap was 244. I know this is bad and most likely means CIDP. Her protein back in Dec. when they said she had GBS was 233. IT HAS GOTTEN WORSE. I think this is the worst day of my life. If only she wasn’t 2. She overhead us talking and said “I don’t want to go back to the hospital, Mommy. It hurts to get IV.” My pediatric neurologist is pretty laid back and I don’t think he has ever had a child with CIDP in his career. First question 1) Who is the best Dr. for child CIDP, we live in Ohio. Maybe someone who is up on the latest techniques. 2) Where can I find the newest research on cidp or child cidp? When I google it, the latest think I can find on child cidp is 2003. I did find an interest article written by a guy who is trying to find the antibodies that cause GBS and cidp. It was written in 2005 and he had already found some things for GBS and was predicting info in the next 2 years for cidp. I wonder if he ever did. Please pray for us. I think this is the worst thing that has ever happened to us. Selah was started on Methotrexate shots on Monday as she has arthritis in almost all of her joints. I hope this is not going against what they would do for her for the cidp. thanks in advance
April 16, 2009 at 11:10 pm
I understand your pain, Kevie is not doing well, I think he needs more ivig, loads again. I am going to beg the neuro on Mon for Tues. infussion. something is VERY wrong with my older son. An inflamatory process is affecting the nerves in his eyes. He flunked the drivers ed eye exam, I took him to the opth. and he is nearly blind in one eye. go for blood work tommorrow. Could be cidp, diabetes, ms who knows.
About Saleah, as I mentioned on the phone, I made an ENORMOUS connection with DR. Lewis, in Michigan. Although he is adult, maybe he would see her as a consult and work with and advise your peds neuro. He is well published and written books on cidp/gbs. I even wonder if he is the Lewis in Lewis Sumner variant.
No doubt that protein # would be indicative of cidp, however, I do not know if other inflamatory processes such as arthritis would affect the 3 as well.
I have NEVER had to beg or convince our doc for ivig until last month and this month, so I understand your frustration in not being able to convey your wishes. You might have an upper hand here in that the # has gone up and they cannot dispute that. Could the inflamation from the cidp be heightening the arthritis reaction to the fifiths?
Mayo is an option too. Since there are many things going on, it might be an option to take seriously. All the docs are there at once. I am thinking of going myself for Kevin, who knows my older son too, wonder if I get a discount for bulk?
Something else to consider, if it is confirmed cidp, she will be getting regular treatments. A port is a must and things run so smoothly after the first couple of infussions. I could share some of our mistakes if you do go that way. I will pray for you and your family, we will both be faced with huge challenges tommorrow.
AnonymousApril 17, 2009 at 9:14 am
Hi there –
My daughter was dx’d with CIDP at 4 years old. I know how difficult it is to have such a young child go through all of this…well…crap.
My understanding (just as a mom – not an expert) is that only auto immune diseases will make the spinal protein go up. I don’t think the arthritis would cause it. Arthritis would affect any blood tests on the SED rate – which would be another test to check for CIDP.
I’m wondering if maybe the arthritis is caused by an auto immune disease & she doesn’t really have fifths or GBS/CIDP. Could it be something similar but entirely different? There are MANY auto immune diseases which manifest themselves pretty much the same way so diagnosing them correctly can get pretty difficult. It’s important to find a great diagnostician – if only Dr. House was real.
If it were my child I would get in her to Mayo or Hopkins. Where are you at in Ohio? I’m in MI & U of M supposedly has some fantastic neuro’s. It might be worth it if you could make the trip up here.
As far as research, there really isn’t much info on CIDP and children. When Emily was first dx’d I Googled CIDP & children & read every single link that came up. You should sign up to receive Science Daily. It’s a free “newspaper” sent to your email but it’s all about medical findings. I’ve read a lot about new findings & research being done on CIDP. Also, I believe, some of the research being done on MS & other auto immune diseases may provide info for CIDP too. The link to sign up for Science Daily is [url]http://www.sciencedaily.com/newsletters.htm[/url].
When Emily went through all of the painful tests we were very matter of fact about it. We would tell her “You have to have (insert test here) to check (whatever needed checking). It will hurt but it’s very important for you to be brave. I know you are scared but it’s something that has to be done.” A few times I had to say “We can either do this the hard way or the easy way.” She would ALWAYS pick the easy way.
It killed me inside but I could never show that on the outside. It’s very important to keep your cool. I always saved the crying for after she was in bed & I was alone.
We would also tell Emily “You get what you get & you don’t throw a fit & we got CIDP. Now we just need to deal with it”. She seemed to handle it pretty well. We believe being very matter of fact about it helps. It certainly worked for us.
We would also try to make the hospital stays as fun as possible. We would blow up the plastic gloves & make faces on them. Or we would blow them up & play volley ball with them in our room. We bought TONS of board games & coloring books with crayons. We also found it VERY helpful to take a CD player to the hospital with us. Having music playing in the room really seemed to lower Emily’s stress level.
If she had to have tests done but no hospital stay I would tell her she would get a special treat afterwards for being brave. I would make sure to take a special present & keep it hidden. As soon as we would get to the car (or right after the test) I would give it to her. It also helped if the present was wrapped.
I’m not going to lie, it is difficult to have a child with a chronic illness BUT it does get better. It gets easier over time. It becomes a part of life. It took me about a month or so of constantly saying “I am the mother of a sick kid” to myself. Then one day it wasn’t so scary anymore & I could move forward.
If you would like we could exchange phone numbers. I cannot tell you how helpful it has been to me to speak with other mothers who know exactly what I’m going through.
AnonymousApril 17, 2009 at 1:18 pm
I’ve been thinking about your daughter all day. I went back & read your original post where you talk about the rash. I did some Google’ing & came up with a suggestion.
Have they thought of JDM? One of Emily’s nurses patients has it.
Here is a link:
Here is a pic of what the JDM rash looks like (scroll down the page & click on the pics to make them larger):
Hope that helps some.
AnonymousApril 17, 2009 at 2:25 pm
Thank you for your response and even more for your concern. Selah’s rash was confirmed as being Fifth Disease rash. Arthritis is an auto immune disorder according to her neurologist and rheumatologist so she has two autoimmune disorders: arthritis from the fifth and GBS. With hope mentioned something abou that dermamyositis and I will like at it again. Selah is ok with doing it the hard way, unfortunately. I called the Foundation and they said something about Dr. John Dalakys in Atlanta, Ga. They said he is willing to consult on any case for free if your physician calls him. Are you happy with your doctor? How did this all come about for Emily? Selah’s physician says that she is definitely in the minority as she definitely had a causal event or whatever as Fifth is a virus. He said he guesses she kind of falls under the CIDP unbrella now since it has been 4 months. He is not hung up on labels.
April 17, 2009 at 2:31 pm
please check your private message
AnonymousApril 17, 2009 at 5:31 pm
I did a quick Google search for “protein in spinal fluid with arthritis” and nothing very specific came up. There were links but the few I clicked on talked about Lupus or MS – nothing specific to arthritis.
I did learn that only rheumatoid arthritis is considered auto-immune. So have they diagnosed her with that & which variant? Apparently there are quite a few to pick from. Nothing I read on JRA said anything about doing a spinal tap. Also to get diagnosed with 2 different auto-immune diseases, both of which can resemble other illnesses, at 2 years old doesn’t happen very often. That’s why I’m questioning the diagnosis.
Anyway, I think it’s something to discuss with your dr. Ask specifically if protein will be found in the spinal fluid with the type of arthritis they have diagnosed your daughter with.
It’s very important to get the correct diagnosis. Some medications used to treat CIDP can make other diseases worse. For example with GBS you aren’t supposed to use steroids.
It must be difficult to have a child that is willing to “do it the hard way”. I think Emily chose the hard way once & after that she’ll never do it again.
We are happy with Emily’s neuro. He certainly isn’t an expert on CIDP but he listens to me. I do the research, report it back to him & then I make him think he has a choice in what we’re going to do, LOL. He’s been very good to us. He treated Emily very aggressively which is what she needed. Other dr’s wanted to put her on ‘roids (we did that & it made her worse) or on chemo drugs, which are a last resort.
We’re not sure exactly when Emily’s symptoms started. Long before her legs & feet were affected she would wake up screaming in the middle of the night saying that her arms were hurting her. We thought she was sleeping on them.
In Sept 2004 Emily got her 5 year vaccines at 4 because she was starting preschool. Shortly after she started complaining of her feet hurting. We went to her pedi & he thought she needed better shoes so we bought Stride Rites. When that didn’t work we went back to the pedi & he thought it was growing pains. We went back & forth to the dr so many times that I lost count. He finally referred us to a pediatric physiologist but there was a wait of 2 months to see him.
In November Emily got her flu shot. A weeks later (on Christmas Eve) we noticed her right eye looked lazy. We thought she had developed a lazy eye & decided to take care of it after Christmas. 2 days after Christmas Emily woke up in the morning & could barely walk. She couldn’t lift her arms up. She couldn’t hold a spoon & her fingers were curled up in a ball.
The next day she was admitted to the hospital & dx’d with GBS on 12/29 after having a spinal tap with elevated protein levels. An MRI was also done of her spine & brain. She received 20 grams of IVIG (about 4g per kg – double the recommended dose) and was released on New Years Eve able to run, walk & jump.
We went back to the hospital for 3 more IVIG treatments – each treatment was once a week. About a month or so after her last IVIG treatment she relapsed. That’s when she got the CIDP diagnosis.
Emily had more IVIG than anyone I have ever talked to but that’s what she needed. She’s now a normal 7 year old girl. She plays T-ball & just learned to ride a 2 wheel bike.
She currently gets 20 grams of IVIG every 2 weeks but we’ll be moving back to every 3 weeks pretty soon.
AnonymousApril 17, 2009 at 9:38 pm
It is unusual to have two separate processes and this is probably part of the reason that one of Selah’s doctors said that she has her own unique autoimmune disease. Arthritis from Fifth disease is a reactive arthritis and people do get better. People with GBS also get better–slowly. I am sure everyone hopes that this not an ongoing autoimmune process for Selah, but what you say they say–that four months into this raises the concern that this is CIDP has two sides. It may bring sadness that this might be ongoing, but, on an extremely important other hand–CIDP can get better IF TREATED. If they are really talking about CIDP–push for more IV IgG. If she gets lots better at least you know that there is a rainbow at the end of the rain. More rain may fall and obscure it again periodically, but CIDP is a treatable disease if people are aggressive enough (and if the person responds to the treatment which Selah did). GBS is often a “watch and wait” diagnosis (after initial treatment) because it is typically an “one-time” event. CIDP is a call to arms for treatment because there is ongoing damage occuring.
Methotrexate is used for CIDP as well as rheumatologic processes, but for CIDP it is slow to act. Immunoglobulin works faster and better for CIDP and it has shown effectiveness in Selah. It should not worsen a rheumatoid-type arthritis.
I also sent you a private message yesterday. The most important point was encouragement to push to get Selah back to walking. The purpose of treatment is to limit long term damage to nerves and joints and muscles, etc. Immunoglobulin is not a cure for CIDP, but it helps stop additional damage to nerves. Methotrexate may make the immune system behave–but it takes a while with need for a lot of patience and luck to choose and modify doses just in the right pattern for each individual to be both effective and safe. While people wait for methotrexate to work on CIDP, there is additional damage to nerves.
AnonymousApril 19, 2009 at 5:03 pm
I am not sure where you live in Ohio, but if it is anywhere near Dayton, you might want to come to the Dayton Area Chapter of the GBS-CIDP Foundation Support Group to be held on 5/9 noon to 2 pm at the Samaritan North Health Center, 900 North Main St, Dayton Ohio. The topic will be plasmapheresis, but the other times this group has met there have been lots of attendees including several parents and childhood GBS/CIDP survivors and it has been people friendly so that people can tell a short history of their/their child’s course and also ask questions of the doctor(s) attending. It is planned, if time, for people to separate off into subgroups so that they can ask questions and discuss topics with others with adult GBS, adult CIDP, and childhood onset GBS/CIDP. I do not know how they will subdivide out, I am just guessing on this. Although this is outside of my state, it is the closest support group to my home and has been definitely worth attending each time. Directions are easy. Take I-70 to Dayton. At exit 29 turn South onto Rt 48 and go 1/2 mile. Samaritan North is on the left.
AnonymousApril 19, 2009 at 11:23 pm
I just wanted to let you know I will be holding a support group meeting next sunday (26) in Zanesville. Not sure where you are located but would love for you to attend. It is our first meeting but hopefully there will be others with CIDP that can possibly help you out in locating a doctor you would be comfortable with. You can send me a private message or an e mail. I am the Liaison for this area so Please let me know if I can help.
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