The Journey of a child

[mom]

BOTOX CONSULT......In a few weeks

We got a botox consult at the spasticity clinic....!!!! I asked for this referral about a year ago I think....through the VERY UNKIND neurologist we went to see.....She brushed me off...so I followed that request with her Pediatrican......I haven't heard anything all this time. We have not been back to the doctor..... Then I was praying one night last week for my little girl.....and the next day I woke up to a phone call about this appt. YEAH!!!!!!!
I am excited about this becuase although I am not prepared to try botox at this time, part of the work up is an MRI of the muscles.....so I am hopeful that maybe we will get some lead.....Our ins will cover this b\c it is here....(as opposed to the one with Potter).....So here we are taking another step on this journey.....I am interested to see where it leads us.

She is still experiencing itch all day every day. When she uses her leg muscles alot (like climbing, which she loves to do) Her itch gets more intense and she starts to have abdominal pian( like feeling like she needs to throw up, and something is scraping her inside)
She is about to be 9 and this all started right before she turned 5......This has been a LONG HARD road....as it is with all of you.......KEEP THE FAITH.....I know it is easier said than done...... Be strong my "HOPE" friends....My thoughts are with you all
MOM

[Violet M]

What a difficult journey this has been for you and your daughter. I would be interested to hear more about the MRI -- is the radiologist going to use the Potter protocol and is it 3T? I just hope that you will get some answers that will guide you in what direction to take next.

Hugs and Prayers,

Violet M

[mom]

NEURO SCIENCE HABILITATION APPT:::: (botox consult) JULY 30 2012

We had our botox consult...while it was not a bad visit I did not get what I was hoping for. This Dr. was very nice..the resident was amazing! Conlcusion was that my daughter was not a good candidate for botox to the legs b/c although she is restricted she was worried she would over relax the muscles causing week leg control or use. And that is ok b/c I was not really prepared to have the botox , but was wanting the MRI

She did however recognize that this was her first case to see of this but did not discount it. She was willing to put her on neurontin as she said itch was lowest form of nerve pain...so the itch could be considered chronic pain.
I have the script..but in my gut am very IDK....something in me is hesitant. I have not filled the script yet. She wants to start at 100mg 3 x a day....but says that it usually takes a whole gram to effect pain so we would work our way up. She would like to see her on it for 6 months to a yr.
I guess in my heart I feel like this might treat the symptoms....but she is clearly restricted in her range of motion with her hamstrings and aductors and abductors...so I feel like that is the root cause..and I was really hoping for the MRI to see if soemthing would stand out in this area. I want to cure the cause the source not just treat the symptoms especially with hefty drugs that have such crazy side effects.

So we are at a crossroads on this journey.....not sure which road to go down...stay where we are or explore the unknown?

MOM

[Faith]

From my experience with botox...I am really glad they decided against it for your daughter. She is so young, I'd hate to see her become worse. I know you want to find a cure and treat the pain generator (we all do!), but often that is very difficult so medications can sometimes provide some relief which in turn will help her possbily become more active and regain some flexibility or be able to do PT better, etc. Also it's so important with chronic pain not to let the pain get out of hand. Central sensitization is very real and pain can actually become the problem that we are all trying to fix. 100mg is a very low dose. It might not be a bad idea to try it. Some people have side effects of course, but it's the one drug that has really helped me and not caused very many side effects.

[Violet M]

Mom, I'm sorry you did not get what you were hoping for out of this visit -- especially the script for the MRI. I agree with you that it may have been a blessing that she didn't advise Botox. Your daughter has a lifetime to battle with this and I think you want to start with the least invasive stuff first which is why the Potter MRI (or similar) is so important so that you have a better idea of what you are dealing with. Was the doctor unwilling to prescribe this?

You have probably already read Hermajesty's story -- she also had itch and was hit with problems at a young age. Problem with itch is it can develop into much worse so just putting her on meds and ignoring the underlying cause seems a bit short-sighted. If this physician is not willing to order the MRI, you may want to find a doc who is willing to find out the underlying cause, including ordering the MRI you want. In the meantime, I agree with Faith that medications could be important in preventing permanent pain pathways in the brain/spinal cord.

Violet

[mom]

MAY 21 2013
We have not posted for a long time as we have been living life asa best as we can, and living by faith.
TODAY we had a rhuematology appt. Some had suggested early on that maybe we should get checked for Lyme and I had repordted a few years back that we were told " lyme does not exist in our state" . She did have a tic that I removed early on when symptoms began but after being told by several different dr's that they would not test bc it doesnt exist here I just put it to the back of my head. I have thougth about it from time to time but you know, you trust what the dr's say right????
Any way after continuing research I stumbled across the CDC's "get ready for tic season" article for OUR STATE. YOu can imagine my suprise that we need precaution bc I was under the impression that it was a non issue here......any way long story short. After continuing with symptoms (pudendally mild) but lots of muscle aches, constant nausea, etc., we had more testing done. We had a POSITIVE A&A which is an inflammatory marker ( I think) and were referred to the RHUEMATOLOGIST.
Today after 4 yrs since initially requesting, he is testing for EVERY tic born illness! He is also doing a sensetive lupas testing as well.
We will have results in a couple of weeks.

Today we are continuing to deal with EXTREME tight leg muscles (which i believe is compressing the pudendal nerve) I am confident we are getting closer to the root cause!:)
We continue to cope with this through our faith. We will NEVER quit believing for an answer (A REAL ONE) and our miracle:)
We continue to think of and pray for all that are suffering with this affliction.
MOM

[Violet M]

Truly amazing, Mom. I hope you are finally on the right track and that your little one will start to feel better soon. She is blessed to have a wonderful caring mom.

Hugs,

Violet

[nyt]

Mom, thanks so much for the update. You and your family are always in my prayers. Hopefully, this will finally give you the correct direction and treatment plan.

[mom]

I am beyond touched for all thoughts and prayers. Thank you Violet and Nyt. And the many others we know are fighting this with and for us:)

[Griff522]

I am praying that this is the answer you have been searching and fighting for. You are a truly amazing mother and I admire your courage and determination in finding the cause of your daughter's pain. God bless you and your precious daughter and may her relief come very soon.