The Journey of a child

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The Journey of a child

Postby mom » Wed Dec 15, 2010 2:13 pm

I wanted to post my daughters story thus far and keep everyone updated on her progress.

My daughter began having SEVERE itch at age 4. (2008). I took her in to the Dr. with in about 3 days of that, she was given Nystatin which did NOTHING.
Dr. then called in another script, Vusion ointment. It also did nothing for the itch.
Then our series of Dr.'s started. This has been our journey.
Ped. 8/08 did urine specimen, came back a little dirty, (prob due to the severe itching) she was given diflucan "just in case" and bactrim for possible UTI which was neg. 2 days later

back to ped 8/08 itch very intense, referred to Ped GYN
Ped GYN 8/08 she did a visual exam. saw no visibal reason for itch. Gave script VERMOX for pingworm and HYDROXYZINE at bed time
NO RELIEF

9/08 follow up Ped GYN added zyrtec in the morning and continue hydroxizine at night...still NO RELIEF

9/09 back to PED did another urine and blood work at my request as I found some research that showed a rare form of lukiemia presents with genital itch, and aslo chilhood diabetes does as well. Given scripts METROGEL and OMNICEF agian just to treat symptoms, there were cells in her urine, but when you are itching as much as she has been you are ging to be raw and can cuase minor bleeding
Blood work was all fine and scripts once agian did 0 for itch

10/08 back to Ped GYN. She did a culture this time to rule out infection. Everything was NEG.

Getting no where I took a break form Dr visits, she had enough discomfort being examined so much in that area.
We teach our children no one is to touch them there or look at them and then I as a parent have to ask her to let all these strangers look at her. It was mentally challenging for me as well as it must have ben for her.

7/09 we went back to the PED, itching was especially bad at this time ( I am not sure if humidity and heat make it worse, but it seemed to )
I brought info about a skin condition that I found on the internet, in the PED journal of dermatology, called Lychen Sclerosis, asked the PEd for referral to a derm. was given a steroid cream and referral

9/09 saw ped DERM. he did not think it was lychen sclerosis as it is something that "looks" a certain way on the skin down there. He also said that the steroid cream that the ped gave was to strong and was prob. contributing to the irritation. He gave us another script 0.05% desonide and 1% oxistat, he wanted us to try aquaphor for increased moisture and he precribed Diflucan agian just cuz.
we did all these with the exception of the diflucan as I KNOW she does not have a yeast infection. We applied these faithfully for 3 - 4 weeks. The redness and inflamation externally cleared up , but no relief from the itch.

9/09 2 week follow up with ped DERM, he suggested return to ped GYN adn try zertec and Hydroxyzine agian (which I did not)

9/09 return to ped GYN, she had spoken with the DERM, and said she really doesn't see any visibal reason for the itch. suggested a skin byopsy, told me to call her when and if I wanted to proceed with that ( we haven't at this point)

10/09 changed Dr's as I am getting frusterated no one will take us seriously. I have asked for a urology refferal unsuccessfully. I filled new Dr in on what has been going on and he gave me the urology refferal, he was in favor of the GYN's byopsy idea, he gave us SINGULAR to try for 10 days, also suggested a phsycologist

10/09 saw Ped UROLOGIST, I spoke with him, asked him if she could have any type of nerve damage. would he do a dye and look at her urine track....he looked at me like I was crazy. said nerve damage was not possible (I asked about this b/c about 2 weeks before the ithch started she had a little tear on the side of her "labia" from a swim suit that was to small she was wearing)
he gave me ESTRACE to put on her and sent us on our way. Did cream for 2 days, b/c I just didn't feel good about it , that mama's instinct IDK.


I will fill the rest to current later.
I am doing this b/c I beleive that my daughter is prob. not the only little girl out there suffering.
Last edited by mom on Sun Jan 16, 2011 7:33 pm, edited 1 time in total.
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Re: The Journey of a child

Postby HerMajesty » Wed Dec 15, 2010 3:35 pm

Mom,

you are being a very good mom, when I dealt with my issues as a kid my parents naively kept sending me back to the same jerk urologist for years til I finally gave up on medical care.

Violet just posted this as a possible treatment for neuropathic itch: viewtopic.php?f=36&t=589

In my opinion, way too invasive for a child until other avenues are tried first, but something to keep in mind as neuropathic itch is a tough one. In fact it is so hard to diagnose as neuropathic itch, I think many people go undiagnosed for a lifetime. You are an amazing mom to even get to the point where you recognize that her problem might be neuropathic.

People don't understand how bad it is: I went through 3 years of intense pelvic pain in my teen years before I learned to self manage interstitial cystitis; and can state without a doubt that I prefer pelvic pain to pelvic itch. The unpleasantness of sensation is just as bad either way, but with the pain I toughed it out and still had a life, while with neuropathic itch I had to deal with increasing social anxiety as one just can't be out in public scratching one's privates. I started to stay in more and more because I didn't want to be out there squirming in my seat and having people look at me funny.

Keep advocating for your daughter, you are doing great!
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
HerMajesty
 
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Location: North Las Vegas, Nevada

Re: The Journey of a child

Postby mom » Thu Dec 16, 2010 5:43 am

Thank you hermajesty.
I would defintely say itch is the worst! She is starting to be teased at school, and people stare ALL the time. I will prob. have to home school just to protect her from the cruelty. I am researching that now.
The itch has had a huge neg. impact on her life. She cries daily saying how she hates her itch! She can't be in programs at church. she has to be on the back row at school programs b/c she is constantly itching.
There is most certainly socail anxiety due to the itch.
How do I keep her from not wanting to go out in public? I tell her to just turn into me and itch real quick, I reassure her that it is ok she can't help it. I tell her try real hard to just not itch if she is scared to it in fornt of people and when we are home she can itch all she needs.
It is so sad and I feel SO helpless.

Since you have dealt with this, does heat or humidity seem to intensify the itch?

Thank you for your input and support.
I am trusting God for a supernatural healing for her.
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Re: The Journey of a child

Postby HerMajesty » Sat Dec 18, 2010 1:49 am

Did you see my post on the other thread of yours, about mixing topical capsacin? I think it was the 1st thread you were on. It has been a lifesaver for me; no more scratching and unlike scratching, which really does not help itch but starts an itch-scratch-itch cycle, the capsacin really works. let me know if you can't locate the post as it must be done right or not at all. viewtopic.php?f=3&t=544&start=10
mine is not intensified with heat but with humidity...the key is barometric pressure. The lower the pressure, the worse neuropathy is for most people, which is why we can all tell you when it is going to rain.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
HerMajesty
 
Posts: 1151
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: The Journey of a child

Postby mom » Sat Dec 18, 2010 5:58 am

That is interesting about the humidity. So the more humid the worse the itch? (I will watch for that) I could see that something was affecting it more on some days than others.
I did get your thread. I have just been afraid to try it. I don't want to mix it to strong, and what if I make it worse?
I will get some this weekend. so if I get a small vaseline jar and mix into that is that ok?

Thanks
mom
 
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Re: The Journey of a child

Postby mom » Sat Dec 18, 2010 6:24 am

OUR JOURNEY CONTINUED>>>>

After the urologist we went back to the Dr. Her tummy pain was constant now. Every day saying she felt like she was going to throw up.
We had an abdominal ultrasound 11/09 it was normal

Back to Dr. still having tummy ache and itch, he suggested a phsycologist as this must be anxiety or OCD. He thought maybe she was nervous about us having a new baby. Well that baby is just over a year now ( plus she has two older siblings) and she has complianed of her tummy hurting EVERY DAY for the past 20 months without fail! The pain is worse at night and she cries form the pain.

Frusterated with Dr.s I took another break.
Consulted a phsycologist, thinking that maybe if she saw one they would say this was def. medical and the Dr.s need to look further.
after talking with her over the phone in 9/10 she told me to try different phrasing in my google searches.
I did and that is when I came across PNE and then the website for HOPE. I had never heard of PNE before.
I decided to post DOES THIS AFFECT CHILDREN and I got a response from Kat and Pianogirl right away. Then HerMajesty. I was in tears, I felt releif, fear, and sadness at how much she really was suffering.

I went back to her original Ped, showed everything I had written down about all our dr visits, all the meds, and how we were still dealing with this. He said " we clearly have failed to help you find and answer"
I walked out of his office 10/10 with a neurology refferal and appt. and a GI appt.

We did go see the phsycologist 11/10, she said this would fall under the category of impulse control, and that she needed to learn how not to give into the impulse to itch. She thought my daughter was well rounded and well spoken. Maybe she had a little anxiety...well YEAH you would to if you had been dealing with an ithch in your private area for 2 years and kids were teasing you!

I also found a PT on this website who just happens to practice near us. We have an appt 12/10 she will check my daughters allignment, and we will discuss where we go from here.

So now we are going to try PT, and have Neuro, and GI appt.'s in Jan 2011
I will let you know how PT goes.
Last edited by mom on Mon Jan 17, 2011 2:54 pm, edited 1 time in total.
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Re: The Journey of a child

Postby HerMajesty » Sat Dec 18, 2010 6:48 am

That would work but I use a smaller container so you could probably mix quite a bit of capsacin into a whole jar, before she feels anything at all. If you are scared to hurt her, try it on yourself 1st, even just put some of the mixture on your lips like applying lip gloss. You will see if you add just a tiny bit you will not feel it; but as you gradually add more it will start to tingle without hurting. You will also probably be surprised to find that if you let your daughter use it at that point, she might not feel anything at all. Neuropathic itch, at least for me and a few others I have spoken with, seems to be associated with some degree of loss of sensation / numbness. So you will have to customize it to her. If it works the result is instant and VERY relieveing as scratching really never relieves neuropathic itch so the worst thing about it is that it is just constant no matter what you do. The capsacin shuts it off for at least a little while and that is an amazing feeling. If it works for her, in the long run you might want to switch to another neutral base such as zinc oxide instead of vaseline and see if that works just as well: Because vaseline is greasy and stains clothes. A child is likely to be less careful than an adult and wind up walking around school with greasy fingerprints on her shirt or pants.
If you read up on barometric pressure you will see several factors effect it, such as humidity and elevation. Lowering of barometric pressure negatively effects many people with neuropathy and rising barometric pressure generally helps. The daily pressure is listed on some of the weather websites. But that is really just trivia, as you can't change the weather. When you find her appropriate medical care, her symptoms will be reduced and then the pressure won't matter.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
HerMajesty
 
Posts: 1151
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: The Journey of a child

Postby Violet M » Sun Dec 19, 2010 6:58 am

I will have to confess that I used straight capsaicin at times just so I could get to sleep when the neuropathic itch was driving me nuts. Probably not too smart but hey -- it worked for a little while.

I'm trying to remember if extra strength vagisil helped at all. You can get the walmart brand for half the price -- it has 20% benzocaine in it.

Another thing that helped me that maybe she could try when she's at home is a gel ice pack in between 2 pairs of underwear. You can google Ace cold compress or try this link: http://www.acebrand.com/wps/portal/3M/e ... WDK11DBSbl or try this link: http://tinyurl.com/2ee9ru7
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: The Journey of a child

Postby pianogal » Sun Dec 19, 2010 11:00 am

I can't help but think the tummy ache could be a gluten intolerance. It doesn't show up in allergy testing but will show up in stool tests or blood tests. www.enterolab.com has a test for 99 bucks and it worked for me showing I had antigens to gluten in my bloodstream through analyzing my stool, even though an allergy test for wheat allergy showed nothing. I could be wrong, but 99 bucks is worth a shot to see if it could at least relieve the tummy ache part quicker... Or it could be some other allergy (or yeast). Just thinking out loud here. You are doing such a good job getting help for your sweet little girl!
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
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Re: The Journey of a child

Postby HerMajesty » Sun Dec 19, 2010 3:37 pm

My father has gluten intolerance and was able to skip the lab work because a couple of weeks of gluten free diet made him feel 15 years younger. So I think it's an easy enough thing to rule out with a month dietary trial, the poor girl already has to deal with so many docs and tests.
Violet I did not have a good experience trying lidocaine for itch. My itch being associated with numbness, the numbing cream made it worse. Plus lidocaine broke down my skin and gave me nasty "diaper rash"...but I think it's worth experimenting (carefully!!) as different things help different people. I was also using Gold Bond for awhile, which has menthol and I think also camphor: It gave me temporary relief but severe 'rebound itch': that is, the itch would come back worse so I had to apply it more and more til it was almost constant. The capsacin is the only topical that shuts down my itch for a reasonable period of time without side effects.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
HerMajesty
 
Posts: 1151
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

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