I need prayers for my son

Stacey,

I am sending hugs and prayers to you and Connor.

I don’t know if it is the same thing but my 26 year old son has always run hitting the ball of his foot first and then his heel. It never occured to me to mention it to his doctor. I hated standing around ball fields so for sport we had him in karate for 7 years – it allowed him to succeed at his own pace while still “belonging” to a group (and I could wait in an indoor chair).

I am so sorry for your worries,
Flossie

Hello Stacy,
Just take a deep breath and let yourself know that you have your family here to lean on. And of course we understand the deep fear that clutches at your heart when you say “please God, not my son”. Let’s just pray for the best, this might be something Connor will outgrow or that can be corrected.

Hi Stacey. When I was first diagnosed with cidp in 2000, that was my first question to my neuro doc-is this hereditary, and he immediately said no. As I have studied more about cidp, I can only find that there may be family related disorders. Make a list of questions for the neuro, so you can be prepared. You know we are all praying for you, but please take care of yourself. Added stress for you will exacerbate your symptoms. Wishing you all my best. Take care Stacey. Also my neuro said to be careful with my heel stretches;not to overdo them and damage my heel tendons.
Emma

I forget where you said that you live, but July 30th is a longgggggg time to wait. I would be a squeaky wheel and call everyday or have you pediatrician call and get you a sooner appt. I just call and call and call until they are sick of me. I also use the, we have really good insurance thing and I am worried sick and cannot sleep at night thing when I call. Which all are true. DO NOT LET THIS GO UNTIL JULY 30th. They tell me the same thing about heredity. Selah is 2 with cidp. She was also a c-section baby and I had her later in life. We have already prayed for Connor when you mentioned this a week or so ago and we will pray again. He is so cute from his pictures!

Stacey,

The pictures of your son are just adorable! You can count

on me to lift you & Conner both up in prayer, asking for the

brightest possible outcome!!

Now take a breath & try to keep a calm attitude with a plan

of action. (I know, easy to say but not to do)

Jan S.

Stacey –

As a mom of a CIDP child I’ve learned a few tricks to get things done.

1) Call your pediatrician. Get an appointment ASAP – for this week. Have him/her check Connor’s reflexes, ALL OF THEM. Explain your CIDP, explain your concerns for Connor & INSIST the pediatrician get you in to see the neurologist either this week or early next week.

2) If the neuro won’t see Connor then you find a new one. Have his pediatrician find one for you. If there is something going on then you CANNOT wait! If something is going on then time is of the essence here – you know that.

3) If you can’t get in to see a neuro then you take him to the emergency room. INSIST they admit him & run some tests. Tell them he’s been tripping, doesn’t have knee reflexes, has balance issues & can’t put his heels down.

4) If that doesn’t work then you go back to the pediatrician & you ask for the following tests: MRI of the spine & brain, EMG/NCV, spinal tap, blood work to check for mercury, lymes, etc. Ask for a blood test called a CPK (this tests for muscle wasting). Also ask for a blood test for inflammation.

I know how worried you are right now but channel that fear into getting answers. DO NOT TAKE NO FOR AN ANSWER! You just keep going until you find someone who will see you.

Dr’s offices like to play this game of “oh we can’t see you for a month” but really they CAN. Emi’s neuro will triple book if need be to see a patient who experiences what Connor has, he did with Emily. It resulted in us sitting in the waiting room for 3 hours but he saw us & got the ball rolling.

If all else fails then you pack up Connor with some snacks & toys and go to the neuro’s office. Tell them you will sit in the waiting room until he/she has a few minutes to see you. I guarantee you that the dr will see you – you might have to wait all day but you will get seen.

You need to be a pain in the butt! That is the only way you will get him seen before July 30th. July 30th is WAY too long to wait on something like this. It’s unacceptable!

I’ll pray that nothing is wrong & he just needs to stretch more. Odds are he doesn’t have CIDP but I can certainly understand your worry.

HUGS,
Kelly

Have the doctor’s ever looked into whether or not you may have CMT. CMT presents just like CIDP but it is hereditary. We just went to a new neurologist yesterday for my daughter who has been battling the past three years of whether this is CIDP or CMT. CMT is not in our family, but it could be a mutation for her. She has been on IVIG and Cellcept for the past three years and she has not had any change. When we talked about her history yesterday, when she was three, she was seen for toeing in. He thinks that may have been the start of signs for CMT. I am not trying to scare you, but I would definitely have that looked into. My daughter’s symptoms are weakness from the knees down through the foot and the wrist through the hands. She has really bad foot drop and wears AFOs. I agree with everyone else on trying to get him in as soon as possible. When my daughter started with her symptoms of no knee reflexes three years ago, her peditrician made the phone call to our Children’s Hospital Neurology and got her the next day as an emergency. Good luck and keep us posted.

Hi Stacey,
Baseball is how we noticed for Kevie too, the slower than average running. Most doctors especially specialists have openings for courtesy bookings, if your doc calls and explains the urgency, they usually take the patient. Just a way out there thing, just thinking out loud, as these were some of the things investigated for Kev. Ask for a ncv/emg, Charcott MarieTooth can be apparent on a ncv/emg, it looks the same on the results as cidp. Actually, were you ever tested for that? It can be verified through a special blood test done through Athena Labs. There are MD clinics in all states, that was another source of help to me, they were able to give docs names (neuros) that is one of the ways we found our doc, even when they found out it was not MD, they still were helpful as cidp was musc/neur..

Are there any other symptoms but his legs? Another out loud uneducated mom thought, maybe they could do an MRI to r/o chiari malformation, as that causes imbalance issues, millions of people have this and don’t even know. The MRI could show an inflamation if there was an apparent one, if there was then the doc might order the l/p.

All things said, we could all be jumping the gun and it could be as simple as being a toe walker. So I will pray that you get an appointment asap so you can get some answers from the professionals. I understand your hurt, pain, confussion and worry. You will get through this and we will help!
Be strong for your little man!
Love and stregnth,
Dawn Kevies mom

I know a few times when they checked my reflexes the made me have my arms in from of me my fingers grabbing my other fingers of the other hand like a tug of war. ( I have a hard time to explain it) and you pull hard so when they do the reflexes on other parts of the body they get a better results probably because the tension is in your hands.

I wish you and Connors the best of luck

Sue

Hi, Stacey, I am on the “take a deep breath” side of all this. Listen to your mom’s heart. Several times you have said that you think that this is not something bad in Conner and also that he is very strong and able to run and jump and move well. As a person that works at a Children’s hospital, we see kids that toe walk. It is often a habit and after doing it a while, the heel cords get tight and it is hard to stop toe walking. When there is an underlying problem it is more likely muscle weakness or muscle spasticity rather than a neurologic condition like CIDP. Some people are also naturally born with mild reflexes and some with very reactive reflexes. As Sue said, it is important to do a little extra like the hand pulling (enforcement) method to make sure that reflexes really are not present in the legs. It is also important to look at all reflexes not just the ones in the legs. I also have been very impressed in my course through this neurologic illness the variety of ways and skills that people have with a neurologic exam including testing strength and reflexes and watching gait. Connor has excellent strength in his feet from what you say and functionally seems to be doing well in playing ball games, etc. I also would not worry about the tripping unless it is new. I would reccommend checking the reflex issue out well, but please don’t panic about it or think of it as an emergency. It is an issue.

If Conner really, reproducably has loss of reflexes in the knees and ankles, then CMT should be at least thought about for both of you.

If Conner needs AFOs, I have seen some really cool ones made with dinasauers or other decorations build into the AFOs–very kid friendly for any part that might show under pants or in shoes.
WithHope for a cure of these diseases

Hi Stacey 🙂

Your post brought tears to my eyes . It is one thing knowing we are sick but when your child has something wrong or are hurt it is so different and hit us to our core 🙁 I know you must be scared …. Just know you have people here who are thinking of you and praying that the doctors are able to do what they need to do 🙂

Kimberly

Here is the website that I have always found to be very helpful for CMT. They have a forum just like this site and the people on it are very nice and informative. I found it to have to most valuable information regarding CMT. That site is [url]www.charcot-marie-tooth.org[/url] I will keep you in my prayers.

sorry no info

Hi Stacey,

My heart goes out to you. I know you are so worried about your son. It’s hard not to be concerned when you have a serious problem yourself – it’s easy to see why you might panic.

The signs that you have seen yourself, and what you’ve read and been told so far seems to support your gut feeling that it’s not something dreadful. Just remember that most childhood problems aren’t.

That said, you are doing all of the right things and making plans to have it checked out thoroughly. I think you are also being wise to let Connor have a good summer, enjoy himself, and not be troubled with worries. Nothing has been confirmed yet, and kids do need to have fun.

I’ll keep you and Connor in my prayers, and hope all is well. Try not to make yourself miserable over this, as nothing has actually been determined. Hang in there.

Suzanne

Hi Stacey,
I have not been on line in a long time and just read up on Connors recent challange. I am thinking about you both and hope that this next month passes without incident and quickly enough for you to get answers. I do hope you can get some peace of mind though so that you can enjoy the summer with your boy. I will be here awaiting the outcome.
All my best,
Linda

Hey Stacey,

I,m a sucker. I had big tears welling up in my eyes when

you & Connor were talking about missing his Nana and etc.

I lost my only living Grandma at age 5, and I’ll always

cherish her. (I,m 53 now) Your son is very perceptive

& caring. I,ll just bet he gets that from his mom!

Your neuros take on what is going on with Connor

sounds encouraging. Any port in a storm!

Thoughts & Prayers,

Jan S.

We have been praying and praying that this think is nothing and that Connor is fine. the hospital last week for Selah’s weekly infusion and the head of the rehab was walking behind us. We know her because Selah spent a month in the rehab at the hospital when they thought she had GBS. She observed my other child, Clark, while he was walking and looked at me and said “he is pigeon toed” and I said yep. I have taken him to our locally pediatrician and he said that this problem originates in his hip and the only way to fix is to break his leg bones. The rehab lady said to Clark, do you fall a lot? Clark said no. She said do you run as fast as some of the other kids in your class at school? Clark said yes. She looked at me and said ” don’t worry about it”. I hold he in high esteem so. We are not going to stop praying.

Hi Stacey,
Just keep loving Connor and being the person you are and both of you will get thru this. I know it is difficult and I have been thru some really tough times with my two but everything works out eventually. As I was reading the posts and several mentioned CMT I remembered that when I was first diagnosed I saw a specialist in another town that commented about my high arches and questioned CMT but then didn’t follow up with it. I for one just kind of shoved it to the back of my mind and forgot about it. However, I realize with our children we want to stay right on top of things so stick with it until you get answers..(which I have no doubt you will do). We will continue to keep you guys in our prayes.

Hi Stacey! I truely feel you pain! When I got diagnosed with Systemic Lupus and found out it could be inherited I watched my children like a Hawk! I did not want them to go through the living h I went through trying to figure out what was wrong. Then getting CIDP on top of that too has not been easy getting diagnosed.

One of my daughters a few years ago tested positive for Lupus and she too now has my disease. When I found out I cried like a baby for I didn’t want this to happen to her! Then my other daughter which is the baby and only 25 got diagnosed this year with Rheumatoid Arthritis. More tears were shed!

It hurts to see your child getting sick and possibly getting something you have. Or something like it! Something that we don’t think about is our genes. Although you are the first one that you know about, there could have been an ancestor that your parents don’t remember. A great great that may have had problems.

I was the first with Lupus I thought until years later. I found out my great grandmother in her early 40’s died and was bedridden for years. Back then they had old country doctors and he called it crippling arthritis. By what my great great aunts have told me I swear up and down she had lupus but never got diagnosed as that. Her genes somehow landed in me and I passed this into two of my daughters.

Connor might not even have CIDP or anything serious going on and I do hope that for you. But! What caused your CIDP? And could it be possible for him to inherit it? Rare but it’s possible. Not much is known about CIDP but they are getting more answers researching these problems and the causes.

I am praying for you and Connor right now! And do hope it’s just a minor thing. But I know you as a parent! You will be like me all these years watching and observing your child as he grows up. And people that are sick can see another person and see the signs of illness better than a doctor. I sae my two daughters and just knew something was wrong and I ended up being right!

I pray for your sake that this is just something minor and nothing else! Will keep you both in my prayers! Hugs
Linda H