The Journey of a child

[pianogal]

these pains are typical pn pains unfortunately. rectal/urinary

for little ones, when anywhere in their abdomen hurts they will point at their belly button. I know, cause this weekend my little one got a tummy ache from drinking air bubbles... and I asked her where it hurt, and she pointed right at her belly button. They are too little to analyze where it hurts in detail sometimes.

I used to get pains in all kinds of random places when it started: down my legs, glutes, upper hamstrings, soles of feet, sacrum, inside of knee joints... and if a huge flare, very rare but even shoulders, inner elbows and the inside of my eyeball hurt. (??) I think cause when you hurt you start to clench everything or lose circulation.

I am praying for you both so much.

[mom]

We have secured an appt. with Loretta Robertson (? last name) The morning of our appt with Dr. Hibner. Her charge is 275.00 and she does not accept ins. ( you can file the forms and try and get reimbursed but they will not do that for you)

This is a first for both Loretta and Dr. Hibner (seeing a child this young w/ PN )
Dr.Hibners office offers a discount if you do not have ins. and pay in full the day of your visit. ( which we will have to do b/c our ins will not cover in another state)
So we will making our trip quickly.
Anyone who has been to see Dr. Hibner and has a lead on a hotel in a decent area PM me please.

Mom

[HerMajesty]

We have secured an appt. with Loretta Robertson (? last name)
Mom

I thought maybe you put this in there because I said prior that I did not know her last name, but I got that and read her biography when Faith put up the link to her practice. If you did not find her bio, she actually has a particular focus on the bony pelvis ("pelvic girdle") and 20 years of Manual Therapy experience.
While Jerry Hesch approaches the pelvis using an entirely different paradigm than is used in other forms of Manual Therapy, I decided it would probably seem disrespectful to contact her, basically like, "Guess what, you do things wrong, we do them right". 1st of all I don't know what she does, it might be great. 2nd, there is no need to ambush this woman out of the blue because I expect we will meet her and / or Dr. Hibner at the IPPS Conference this fall. Our experience has been that in-person is a much better way to communicate new ideas to practitioners: we have done a couple of conferences so far and got an excellent response. But we missed the IPPS one last year which is where all the big PNE Docs go. So when I read Loretta's background, in the interest of being a diplomate I decided it best to wait and see if I can catch her in person.
Meanwhile, as I do suspect that your daughter's underlying problem is related to the pelvic joints, I am grateful that you are going to someone who does indeed have experience and training in that area. I will p-r-a-y (sssh!) that Loretta is able to use her manual skills to relieve your daughter's suffering.

[mom]

HerMajesty, you made me laugh (shhh)

I will be interested to see how the conference goes. All things work for the good....
So maybe this connection and timing could be of great significance to the PN world. Techniques that work are a huge plus.
And it is wise to trust your "gut" in your approach.
When is the confernce?
I have not read her bio yet. I need to down load some paper work so I do need to get on their web page.
So how many years out you from being properly aligned by Mr. Hesch are you? How often have you had to have repeat treatment with him? ( If at all) And what symtoms or pains was he abke to alieviate for you?
( you may have told me all of this at one time, but I can't recall)

Thanks for your help
Mom

[HerMajesty]

When is the confernce?
I have not read her bio yet. I need to down load some paper work so I do need to get on their web page.
So how many years out you from being properly aligned by Mr. Hesch are you? How often have you had to have repeat treatment with him? ( If at all) And what symtoms or pains was he abke to alieviate for you?
( you may have told me all of this at one time, but I can't recall)

The conference was in October last year so probably will be again: so far their website just says the "Fall Conference" dates will be announced soon and that it will be in Las Vegas: yay! No travel for me!

Rundown of my case, the "brief version" is in my signature:
I have (I know now) a gait issue that predisposes me to injury, doesn't sound like what happened with your daughter so I won't bore you with the details. But when I was 14 I went on a backpacking trip over rough terrain with a heavy pack and came home with interstitial cystitis. At the time nobody was associating IC with biomechanics or pelvic injury; I was told it was autoimmune. What had really happened is that I had injured my pelvis. Although I seem to have injured it more later, I can track the initial injury back to that time period because it did give me a leg length discrepancy. I compensated unconsciously for my right leg being 1 1/2 inches longer than my left by weight-bearing much more on the right and standing with my right hip pushed out to the side. I didn't notice the change in posture consciously but for one thing, my parents did, because when I was 38 and found out I had the leg length discrepancy they admitted they had noticed the hip out the whole time and had chalked it up to "teenage attitude" (and adult attitude too I guess ). So anyway I had IC and migraines that whole time but the medical care was so poor I learned some good self-care, started refusing medical care, and lived quite comfortably for almost 20 years as a person with a chronic illness in remission.
Meanwhile, as you will see if you check out the MRN results I posted in the MRN / MRI section, I was doing tremendous damage to my muscles by walking around all torqued: The MRN shows all the right-sided muscles to be overdeveloped and in spasm vs. the left. Both piriformis muscles on exam are very tight, and I have 16 of the 18 "tender points of fibromyalgia", although I do not qualify for a diagnosis of fibromyalgia as I do not have musculoskeletal pain or fatigue. MRI of my brain also shows a small clot from the years of migraine syndrome, secondary to the neck compensation for the torqued pelvis.
I began to get neuropathic itch in my fingers during a long car trip in 2002. I did not have medical insurance at the time so I tried various remedies for nail fungus and took up the habit of keeping my nails very short so I could easily rub the fingertips against a hard surface which was really good enough for itchy fingertips.
2004 I had my second child; her birth was pitocin-induced and what is called "precipitous" meaning intense labor of less than 2 hours, baby shoots accross room and Doctor cayches baby like football, LOL. Anyway I got very heavy during that pregnancy, had knee pain during the pregnancy that I had to do PT for, and took off the weight afterwards by walking 2 miles per day in addition to diet. Now, as I said, my gait was messed up...so I really don't know if I injured my pelvis more from becoming something resembling a sumo wrestler during the pregnancy, from the childbirth, or from the daily walking and/or elliptical machine use after the birth...but I started shortly after the birth with neuropathic itch that came on gradually and insiduously, first in the toes, then upper pubic region, then anal region. It continued to intensify all the time and erode my quality of life, and I continued to go to Dermatology, Allergy, Nutritionists, because it was itch. Finally I went to the Mayo clinic Dermatology and they suggested it might be neuropathic. So I started to address the issue with Neurologists in early 2009, got a routine, non-pudendal EMG that proved the hands and feet were indeed neuropathy, and the brain MRI...but not much help with treatment. Then I made a bad move in the summer of 2009 and drove a 3600 mile road trip. I came home not just absolutely crazy with neuropathic itch and popping neurontin like it was candy, but with severe neurogenic bladder spasms which left me pretty much totally disabled. I could not wear an adult diaper because the itch was too bad, and I could not do much of anything without one because I felt like I was constantly using all my muscles to keep from wetting myself, and had to run to the bathroom every 5 or 10 minutes which basically killed even the basics like grocery shopping or driving my kids to school.
So this is when it became my full time job to get well. 1st I had to self-diagnose pudendal neuralgia online, yay for internet! It wasn't around when I was 14 and it took the Doc 2 years to figure out I had IC. Then I went to the providers site and found Tina, who is the only pelvic floor PT in town. She was the 1st one to actually look at my stance and gait and tell me I had a huge leg length discrepancy and was totally misaligned, muscles a mess, etc. She started doing the standard pelvic floor PT stuff with trigger point work, excercises, and trying to get me into alignment. I actually responded much better to PT than most people on this board did. While my bladder remained uncomfortable it did improve to the point where I could function, do things like drive my kids to school as long as I used the school bathroom before driving home, walk a couple of times around the block, go shopping. My neuropathic itch really was not helped though, and Tina and I were both frustrated because it was obvious that we were not making progress with my pelvic alignment. It was out of whack in a new way every time. I started to wear an S-I belt which finally clued me in to the fact that no amount of excercise was ever going to keep my pelvis in alignment. I had to wear the thing so tight to keep my pelvis from shifting around, I realized I could become a professional bodybuilder without ever producing enough muscle strength to solve the problem.
Tina knew Jerry and so she sent me over to him. I had literally 5 "a la carte" problems with my pelvis (upslip on the left and downslip on the right leading to the leg length discrepancy, for example), plus a pattern of lower pelvic fixation that actually includes 5 seperate dysfunctions...I was a mess! It took 2 visits, a total of about 3 hours, to straighten it all out, and then there was a re-check visit. The lower fixation pattern was fixed on the second visit and that is the part that gave me immediate relief of about 50+% of my neuropathic itch. My bladder felt a little better but continued to improve over the next month or so and is now better than it has been since I was 13. I consider my bladder discomfort, both neurogenic and IC, to be 100% cured except for that some of the meds I have tried still do irritate my bladder. Also although my bladder feels fine, I have to be very careful (drink lots of water, etc) to prevent bladder infection as I have painless incomplete bladder emptying (excess residual), which predisposes me to infection: this is neurologic. My neuropathy symptoms went from a 5-7 down to a 1-5, and now that I have tweaked my med regimen it is 0-3. The reason I am not cured is I am sure the 25 years of damage. I have cysts filled with spinal fluid on my S2 nerve roots (tarlov cysts), which correlate very well with my remaining symptoms, and am also working on getting botox approval for the piriformis muscles to rule these out as a contributor, as I do have a lot of years of muscle damage.
Jerry re-aligned my pelvis in December 2009 and re-aligned it stays, with no more work. The prevailing paradigm is to find what is "hypermobile" and try to keep it in place: this is what I was doing in regular pelvic floor PT and it is a lot of work. Jerry looks instead for what is stuck (hypomobile), and releases it back to normative function, which causes the hypermobilities to correct automatically in most people. I did not REALLY have a hypermobile pelvis. I had a stuck pelvis, with hypermobile compensations. So now it is not stuck, and I have learned how to correct my gait, so I have not re-injured it.
The gains I made from the Hesch Method work, I made very quickly. The gains I have made since have been due to perfecting my med regimen. What I have left to do is to rule out the piriformis as a contributor by getting botoxed, and then assuming this does not cure me I need to look into the tarlov cyst surgery. Now Tarlov cyst surgery is a fairly major neurosurgery, and I function very well and am comfortable most of the time, this has gone from being a life-changing issue to an annoyance. So I will have a major decision to make when it comes to that.
As for Jerry, he does brief treatment. What he can fix, he fixes in 1 to 5 visits. Out of town clients he usually sees for 3 visits over 3 days. If the pelvis is truly hypermobile, which is actually rare, he teaches self-treatments to keep it in alignment at home: he believes in patient independence. There is very little he does, that he cannot teach the client to do or teach somebody else to do to the client.
So Jerry's part of my care is done, and what it has done for me is make me go from a full-time patient (I was going to PT 2 times per week and doing the excercises at home twice daily, and doing self-release of trigger points daily, etc), back to being a person who has a life outside of my disability.
I think that is MORE than what you asked for, so that's it from me...now you know better than to ask me a question

[mom]

No no, thank you for the info, all of it.
Mom

[mom]

TONIGHT WAS AWFULL,
My husband took our daughter to the boxing gym and I specifically told him she could not do any sit ups or warm up exeecises. He allowed her to do leg lifts, where you lay on the floor and raise just your legs and then when they are slightly raised you seperate your legs then bring them back together and then lower your legs and repeat.
When she came home she had the worst what I am assuming is a "flare" ever.
Her rectum itched so bad she said and stung. I tried a warm bath, she just said 'OOh it itches so bad, and it stings"
I was furious! I try SO hard to keep her guarded and protected and I felt like he just disregarded what I had siad. Now I knw he did not allow her to that on purpose, but it really cuased some tension here at home. This is the first time I have felt stress on the family. I mean I carry the torment daily of watching my child suffer, but it never causes arguments between my husband and I. But tonight it did.
My duaghter just cried. Then that made me feel even worse, she felt responsible for our arguement.
I am writing all of this not to vent or air our imperfections, but to let any parent reading this know that if you have a child with PN or possible PN, It is IMPERATIVE that you two work together as a team to benefit your child. We as parents do not have the right to avoid what we can't emotionally handle.
We ( and I mean Me and MY home) have to seek God for direction, wisdom, and grace. But we MUST suck it up an deal with it. To choose to ignore what is going on does not mean it disappears. Your mind makes you beleive " out of sight out of mind" But that is rediculous!
My little girl ( and any other child) needs to know that thier pain and emotions are more important than the ability or inablity of a parent to cope with how helpless and powerless we as parents feel.
A child should not EVER feel like they have to hide their pain or discomfort b/c it puts to much stress on their parent. SUCK IT UP! ( i am talking to me here too) be strong for them and have your melt down privately! Them draw your strength from the POWER SOURCE (GOD)
If we as a parent can't handle their pain then how do we expect them to cope and deal with it?

This was the worst day of our journey. I hope we don't revisit it!
I need strength at this moment .
MOM

[miracle@work]

Awe Mom, I am on my knees right now for you and your family. We will not tolerate the enemy's attack on your home again. As sister to sister P.N. has enough of it's own unnecessary suffering to allow the enemy to make more. Please do not let this come between you and your husband. The enemy would love nothing more than to ruin a marriage. If your husband is a brother remind him of this. Take it from me, the enemy tries to use all of us at our weakest times, i don't know about you but I dislike doing his work for him. Acknowledge the enemies role in last nights ordeal and tell him to flee. You know who's name he will flee from. Shout it from the mountain top if you have to. I am in agreement with him leaving your home too and have just told him to flee. Hang in sister, you may be closer to the cure you are asking for than you think! I am on your side and on my knees. Thank you for your honest post. It helps me to know where to direct my "petitions".~miracle@work

[mom]

Miracle@work
THANK YOU THANK YOU. Thank you so much.

[miracle@work]

Mom, you're welcome. Xo