The Journey of a child

[A's Mommy]

Mom,

Thank God your gut instincts were validated by your PT! Continue to seek the Lord for guidance. He will never fail you. He never failed me yet. I keep trying to remind myself of that.

Love and prayers for you and your baby girl,

AM

[pianogal]

wow. thank God you have validation! while you are seeking help please be sure to fight with strength against instigating factors that could make it get worse such as primarily constipation and secondarily sitting. since pt thinks constipation could have started spasm cycle, do all you can to keep her regular with soft bm's. set an hourly alarm to remind yourself to remind her to drink if she avoids fluids. if you can keep the pain at bay at this level it will be easier for you and her while you search for resolution. with this pain it's very very hard to go backwards once you reach a new pain level so you have to protect carefully to keep it from progressing. cushions on chairs. no prolonged sitting. cushions w middles partially empty like ic-network.com sells are great. this is a marathon you have to pace yourself for, because since people will be more cautious to work on her since she is little, it might take a little bit longer... but hopefully the PN specialists will pay more attention to you and her.

I will join you in prayer and add you to our church prayer list. Only with God is there hope and to Him this is not impossible. He knows the whole story before we do. He know and He loves.

[mom]

Urinary frequency seems to be a regular thing now. She never feels like she is empty. Also she says the itch still feels like a mesquito bite, but also stabbing like a knife and burning all mixed together. I have read those symptoms on this forum but have never discussed symptoms with her as I do not want to put anything into her head. I want to know each thing is what she is really feeling and not what she has heard me talk about.
We had snow today, so it was colder than it has been. I noticed going from the extreme cold ( playing in the snow) to the warm house caused major itch. But when she was just out in the cold it seemed not be as bad. It was much worse when we came back in the house.
No major complaints from my little trooper. Just that she does not wan to back to school after the weekend
Mom

[pianogal]

poor poor baby. mom, does she sit leaning to one side or slouch or put her knees up to her chest or extreme leaning forward or prefer indian style or sit with half indian style on a chair? I did those before I noticed the pain was bad, and now, I realize they are coping sitting positions. I hope school is not too uncomfortable for her, and that her teacher is aware to give her the option to move around, even if your daughter doesn't know you informed the teacher of that. Once sitting hurts, it is torture to remain sitting as each increasing minute the pain builds. I am glad she is not in that boat right now... and pray it will stay, but if you start to see any warning signs of that, please please do not let her sit anymore... as that is the only way to avoid the inflammation within the nerve canal, and once it is there, it sticks.

I'd recommend doing everything anti-inflammatory right now (ibuprofin for children for example) (supplements?) and everything to lower pressure "down there"... keeping her regular, no bloating foods if she has strong allergic reactions to anything

her body is young and can heal much better than those of us fully grown. I read somewhere on the tipna forum years ago that itching can be a sign of nerve regeneration. I hope that is the case, and her body is fighting to maintain it's status and keep from progressing.

the weather component is interesting. curious. My aunt has lupus and recently discovered taking a tepid bath a few times a week reduced her symptoms by lowering inflammation and there was a study about it helping too. she has kept her house at a cooler temp with improvements. I can't find that study, but here's a different kind of study about temp.

I know your daughter doesn't have lupus, but these studies do show that you're right about temperature playing a part, as strange as it may sound.
http://www.jrheum.org/content/35/6/1031.abstract

[prayerwarrior]

hey sis, finally got on here and have been reading up on all this...wow!!! Heart-breaking! I did post a new topic for everyone about prayer so if they want or need it from me, it is now there. I see you have someone on here already who is believing with you, that's awesome, God is so good!! Well I love you guys and am in prayer for her and the rest of you, talk to you soon. Stay strong and continue to to dig in deep.

[mom]

THANK YOU soooooooooooooooooo much for prayer and support. We have to raise awareness about this for all suffering but especially for these precious babies who are doing the best they know to explain what they are feeling.
all my love to you sis

Lil sis

[ThruHim]

I am a prayer partner for Mom and Daughter and I am so thankful God has directed Mom to this site. Thank you to everyone that is responding and offering suggestions from your own personal journey. I am reading a book by Jacqueline Jakes titled "God's Trophy Women" and something I read made me think of each of you...it says "God's Trophy Women don't give a testimony of what God can do, God's Trophy Women ARE a testimony to what God can do." I am deeply sorry for everyone's pain and suffering but I thank God for keeping you and helping you to persevere through all the pain. Never give up hope, your courage and endurance is not in vain.

God Bless,

[mom]

PT & PED APPTS 1/14/2011

We had PT with Mitzi today. She was able to get a good EMG reading. Resting levels were at about a 4-6 so she thought that was good. Had some pressure points done again today, she thought she had good "give" in the muscle region around the pudendal nerve. So she did not think she was overly tense or gaurded along the "sit bones". Her right hip still out or out again. She realigned that ( which they have done every time) The focus of therapy right now is to do 15-20 reps of bridges and glute sqeezes each day. Trying to strengthen teh muscles to hold alignment. Our PT has another patient she is suggesting try getting into Dr. HIbner. ( she is aware of who he is and his specialty)
She(PT) was also invited tattend the conference that Dr. Hibner and Stephanie Pender???? Will be speaking at in Turkey in May.
We have been taking stool softeners everyday which has helped.......and itch was down a little(not gone) after alignment. (that is the first time that has happened)

Pediatrician said he would provide whatever referral we needed and supports us going to see the specialist as they clearly do not know enough about PN to help us in anyway.
She did great today. She was very brave. Today was a productive and good day. she is in good sprirts and not suffering today like others.
Thanks for all the prayers.
MOM

[mom]

Also we got in to Dr.Hibner in April. They are supposed to schedule the MRI while we are there. Is anyone familiar with how his radiologist performs his MRI?????? With contrast/ without. How is it injected...IV or into the fatty tissue or through the grion???????

Input welcome

[nyt]

Great that you were able to get into see Dr. Hibner so soon. Most of the time it is a 7-8 month wait. God was watching over your little girl. As far as the MRI. I can speak for what is done for the adult as I had one done at Dr. Hibner's location in September. I can not say whether they will do the same for a child. The MRI/MRA is with contrast to highlight the vasculature. The contrast is given IV. Like I said the protocol may not be the same for a child. You will get a call to schedule the MRI/MRA. It took quite a bit of effort on my part to get them to schedule the MRI the day before my surgery and had to remind the receptionist that a certain radiologist had to read the MRI even though it was on the order from Dr. Hibner. You might have to be very proactive with the receptionist to get it scheduled when you see Dr. Hibner. The receptionist just didn't get I wasn't flying 5 hours for a 1.5 hour MRI and then come back a week later. It finally did come all together but I had to be very proactive. Just from your posts I know that won't be a problem if it arises for you.

Glad to hear that maybe getting her hips into alignment may help reduce or evaluate her symptoms. Sounds at least like it is making some difference for her. Does she have a leg length difference? If so, even a small heel lift could make a big difference. Will you see Dr. Hibner's PT for a second opinion?