Biofeedback

Hi all,

I've been pretty pain free. This weekend I got into a mess, I filled my pill box early last week, and realized I'd need to refill one of my medications on Saturday. But forgot on Saturday, and by the time I called it on on Sunday, the pharmacy was closed. So I went 2 days without it.

Needless to say, by Monday ,I was starting to feel bad, I felt the M coming on and I've only had 1 M in 40 days. I got the med and my abortive (Relpax) and took 1 of each. Combined...they knocked me stone cold out for hours! My husband got home from work and I couldn't even get my eyes open to talk to him. It was crazy because alone, the Relpax had never done that to me.

By this morning I was feeling a little more like myself and was able to get to Biofeedback. This was my second appointment. I'm thoroughly enjoying it!

It's amazing what being "aware" of your body can do. I have poor circulation, and through my breathing, I've been able to learn to raise the temperature of my hands and feet by 20 degrees! I really hadn't noticed, but my husband had, and I had been breathing really shallow...and now that I'm more aware, I'm starting to breathe deaper,and feel more relaxed.

I'm hoping that through the Biofeedback, I will only increase my Pain Free days.

Other than the major allergies that EVERYONE here in North Texas are suffering from, I'm feeling great.

With prayers and love,

LL

My neuro is sending me for biofeedback and I was wondering, what exactly is it?

I got referred for biofeedback a few weeks ago and haven't made the appointment yet. Please keep us updated on how this works for you!

Definition
Biofeedback is a technique that measures bodily functions and gives you information about them in order to help train you to control them.

Here's other information:
http://info.baylorhealth.com/Health%20Illustrated%20Encyclopedia/1/002241.htm

My biofeedback therapist sends me home with relaxation CD's, mostly concentrating on breathing techniques to help me relax. I've really noticed a difference in my level of relaxation.

Crystal went through Biofeedback at the headache clinic. They try to also train you to think of holding something warm to mentally increase the temperature of your hands. (Strangely this really works!) It does help for relaxation, and the premise behind the handwarming is to increase the bloodflow to the hands to open up the blood vessels.

It did not help with Crystal and I think it is due more to her IH that it did not help. It did help many others in the clinic while we were there, though. Good luck!

How is Crystal doing?

Cheryl

Crystal had a second spinal tap last Friday and her pressure was at 20.8. Dr W did it himself in his office. He poked a nerve, so this one was far more painful than the last.

He took a lot of fluid and brought her pressure down to 11.8 and her pain level has been down to a 4 ever since!!! I know it regenerates quickly, but we are loving it! She actually went to school yesterday for the first time since December. She went again today!

We are fighting like crazy with the school not following through on things, and since we just passed her 1 year mark of chronic pain she is feeling a little defeated.

Dr W is talking about possibly doing weekly taps or shunting. How do you feel about shunting? I loved the IH links that you posted last week! You are so helpful and informative.

I noticed on Anna's Caring Bridge that you guys are coming here in June to meet with Dr W. I would love to get together with the two of you and Crystal if Anna is feeling up to it. I wish things were looking up more for the two of you. You really learn to count your blessings when things like this happen.

I hope that you had a wonderful Mother's Day. Your attitude and insight are wonderful. Thank you so much for thinking of us. It has been a rough run lately up until the tap.

Jennifer and Cheryl, I just love the two of you!

You are a doll! I feel so bad that I have not been around for awhile.

You will love this! I got Crystal's principal in trouble for banning Crystal for her eighth grade dance for getting tutored at home...and the Superintendent gave her permission to go if she is up to it!!

Aah..the power of going over people's heads when they are discriminating against disabilities.

Oh oh oh oh! As a SPED teacher AND someone who was a 504 student in Middle School and HS because of my Chiari, I LOVE IT even more! No child should have to miss out on the good things in life because of a disability! Is she a 504 student? I never got to the point of Homebound, but was in the Resource room most of the day for weeks at a time because it was too painful for me to be in the full light and noise of the regular room.

That sounds EXACTLY like something my Mom would have done.

I remember in HS one day I had a horrible Migraine and I'd been on a bender of some good ones, and I asked my Science teacher to be excused to the nurse. He refused to let me go, he told me I was a chronic complainer and he was putting his foot down. I told him I was covered under the 504 SPED plan and he couldn't stop me. He told me he sure could. I walked out of his room and straight to the nurse. He called the Prinicpal on me, but he was quickly handed his ass on a plate and told he was in the wrong. That I was protected as a 504 student and he was completely out of bounds to deny me access to the nurse. He couldnt even look at me the rest of the school year!

I love that story! We are working really hard to get an IEP in place. They have not put a 504 together and I have been asking for one SINCE 4/15/2009!!!! I called equip for equality, and they gave me some advice for the IEP meeting I have on Thursday.

This stuff is so exhausting, but...Crystal is still feeling well enough to have gone to school today! 3 days in a row, I am in heaven! Any advice for my IEP meeting???

Jennifer,

My husband and I went to IEP meetings throughout my youngest son's school years (kindergarten through senior years). He's now 25 and did very well in school because the adaptions required for him to participate and learn were made avaliable to him.

I would suggest you bring with you any doctor recommendations, as well as the recommendationsn of other healthcare professionals (PT, OT, etc.).

My son had/has hearing and vision problems, severe scoliosis and migraines. Through the IEP, the school was able to find funds to purchase an amplification system to be worn by his teacher so it would be easier for him to hear her/him. This actually benefited many children in the class in grade school, and the teacher commented that several children were doing better because of it.

Other things we requested were that he be given the opportunity to sit toward the front of the class so he could see the blackboard, That tests and other reading material be made available in larger print, and that a straight-back chair be made available for him in all classes (he wore a full-body brace for about 15 years).

We discussed that my son had frequent migraines, and that if he feels like he will throw up or he just does, he will and should be allowed to go to the nurse's office and call me to pick him up to go home. This is a difficult thing for some people to understand, especially his having no control over it and that it is usually not the flu when he vomits.

All teachers who worked with my son were asked to participate in the IEP: classroom teacher, music and PE teachers in grade school; his class advisor and teachers of all classes he was taking in high school. The principal also always participated.

The primary thing to remember is that the purpose of the IEP is to have accommodations made for your child so they can get the most out of their educational experience and learning. You are there to advocate for your child to ensure he/she gets what is necessary to learn.

I hope that helps. I may have forgotten some points since it's been a few years and my head is not cooperating today because of migraine. Good luck. I'll keep you in my thoughts and prayers.

Thank you so much Becky. This is very helpful. I am so sorry to hear about your son's issues. That had to be so hard.

Yes, I agree with everything Becky said. Make sure that every teacher, school official, Nurse, etc. that is involved with Crystal throughout the day is notified and invited to the IEP meeting. It is so important that they are all made aware of her condition so that she won't face any issues with those teachers if she should become ill.

I'd definitely ask about the accomodations being made for her if she should become homebound again. At least in Texas, they have to provide a homebound teacher to students recieving SPED services.

In the future, I definitely suggest finding someone from an agency such as the one you were speaking of to go with you and advocate for you and Crystal. It can't hurt to have someone else in there on your side, not that the school officials aren't, but having sat on both sides of those meetings, I know how intimidating it can be to sit there as parents fighting for your childs rights, with 4 or 5 school factulty on the other side of the table!

Good luck with the meeting, feel free to message me on here if you have any other questions!

LL

thegirlwithbrowneyes wrote:n the future, I definitely suggest finding someone from an agency such as the one you were speaking of to go with you and advocate for you and Crystal. It can't hurt to have someone else in there on your side, not that the school officials aren't, but having sat on both sides of those meetings, I know how intimidating it can be to sit there as parents fighting for your childs rights, with 4 or 5 school factulty on the other side of the table!

Good point, LL, and one I forgot about. We are forever grateful to the woman who advocated for our son throughout his grade school and middle school years. She not only educated us but advocated for our son, as well.

This process is so exhausting! I cannot wait until everything is in place.