The Journey of a child

[mom]

Nyt and Violet,
Thank you for your continued thoughts and prayers.... The PT we saw is not our new PT just the Dr's second opinion she wanted us to have. If we can get a referall to the spasicity clinc we may get work with her again. ( we have not PT at all since returning form our visit with Hibner and Loretta.) Loretta thought focusing on stretch and massage would better suit us. But if we get this referal than we would consult on Botox to the leg muscles and oral Baclifen.
Nyt we have an appt tomorrow to discuss her over all growth, it is not something the PEDS have ever looked twice at, so I am going to request a 3 year over view of her growth and gain at our appt tomorrow. I am not sure what they will recomend. Last time I brought up her little gain and growth they told me that is was normal to taper off at about age 6..... IDK...she is still in the same shorts I bought her 2 years ago.....4t-6x...she has grown a bit we have replaced pants but not nearly as much as I did for my older two children.

I will post after appt tomorrow.
Mom

[Anne smith]

Hi mom
Sorry I did miss the difference in the second spelling! Me and my dyslexia ! Well onwards with getting the right diagnosis for her!
It is strange though since I have been on amitriptalene , how widely this drug is used as a blanket pill for so many things, from bed wetting in children to pain relief and depression
Hope to hear some good results for your little one
Anne smith

[mom]

PED APPT 2/20/2012

We had our follow up with PED today. She thinks she may just be petite. I would be inclined to think that also if we didn't have any thing esle going on.....I am only 4'11 myself...all of my children are small, but she is extremly little. So just to be safe we have a a referal to the ENDOCRONOLOGIST, water therapy starts Wed.....so we will see.......

MOM

[nyt]

Glad to hear that they are sending you to an Endocrinologist. Rather be safe than to assume she just has petite genes. Let us know how that appointment and the water therapy goes. I am hoping you daughter will enjoy the water therapy and allow her to get some enjoyable exercise without increase in symptoms. Keep on eye on what kind of water exercises they are having her do because some of them could easily flare her symptoms. I would hate this not to work for her because the therapist isn't paying attention to what might cause increase in symptoms for her. If you run into any troubles, PM me and I"ll contact the therapist in Phoenix that specializes in water therapy and see if she has any suggestions.

Big hug and prayer sent.

[mom]

WATER THERAPY 2/22/2012

Water therapy was great No strectching on day 1 just getting used to water and PT's. She did tell me though that she could not feel her itch while in the pool....This is great b/c even in the tub or reg. swimming pool she still itches. So maybe the temp relaxed her muscles enough to relieve pressure????????? I will track every time. Water therapy is just one a day week now..but if this is helping we will be looking into buying a HOT TUB......
Still considering botox (to legs as opposed to the dorsal area as Dr. Hibner suggested) I am wondering if botox sould not be so close to the compressed sight as so many have more pain after than they do relief???? just a thought.

NYT, thank you so much for your kindess! Endocryn appt is 4/18 (I think)

Mom

[mom]

WATER THERAPY 2/29/2012

Again water therapy in the heated pool has provided relief. No itching while in water and no itching with the first 30-40 minutes out of the pool. I had her bend after being in the pool and she got down to her shins!!!!! This has NEVER happened.......I pray we are on to something here.....
Mom

[Faith]

Still considering botox (to legs as opposed to the dorsal area as Dr. Hibner suggested) I am wondering if botox sould not be so close to the compressed sight as so many have more pain after than they do relief???? just a thought.

Just wondering, why does Dr. Hibner think botox to the legs will help your daughter? Where exactly in the legs would it be administered? I had botox injections to the pelvic floor (intravaginally) 6 months ago. It has definitely worsened my symptoms. I also have Sacroiliac joint dysfunction so I believe that the botox "knocked out" pelvic floor muscles (levator ani and obturator internus) which are stabilizers of the joint (which is why I got worse). But I am very leery of botox now. My advice is really research botox and try all other conservative options first. I thought at one point that a PT thought your daughter might have SIJD, sorry if I am wrong. If she does have some SIJD (which I think would probably be unusual at her age) then I definitely would not do the botox, especially not in the legs. Botox relaxes the muscle so I would be very surprised Hibner would recommend it in the leg because it could cause difficulty walking (depending on where injectied in the legs).

[mom]

Faith,
Dr. Hibner never recomended botox to the legs. I apologize if I was not clear. He recomended botox to the dorsal area as he beleives she is compressed at the dorsal nerve. We have since discovered that she is very restricted in the hamstrings and aductors, her muscles are abnormally tight. So we have been discussing with Dr's, PT's and the nerologost the possibility of a botox consult for the legs. MY thinking is getting the leg muscles to relax may in turn relax the rest of her muscles...just a theory at this point...IDK.

Also we did have a PT suggest that her hip was out of alignment, but Loretta (Dr. Hibners PT) discounted that.

Right now we are trying water therapy in heated pool (97 degrees)....it seems to provide very short term relief of symptoms......
Mom

[nyt]

I'm so excited to hear that the water therapy is providing some relief even if it is just for a short period of time during and right after. Hopefully, it will build on that.

My experience with botox done by Dr. Hibner has been quite different than Faith's. Faith I am so sorry that botox made you worse I've had it done three times to the pelvic floor by him, each time I flare big time for a few days and then about 10 days after the injection I can tell a difference and usually by about 3 weeks maximum benefit. I can tell it starts wearing off at about 8 weeks and is usually pretty well gone by 12 weeks. I have spoken to Dr. Hibner about botox to my adductors because they are very tight and can spasm like a Charlie Horse. At this point he isn't comfortable doing my legs but I am hopefully at some point he'll change his mind. Otherwise, I will discuss with my regular pain specialist if they can do it.

Keep us updated and hopefully that water therapy will have a cumultative benefit for her.

[Faith]

Also we did have a PT suggest that her hip was out of alignment, but Loretta (Dr. Hibners PT) discounted that.

This might be something you would want to get another opinion about. I loved Loretta, one of the nicest medical professionals I have encountered on my "pain relief" journey, but she also discounted my SIJD. She said she thought PN was my bigger issue and that SIJD would hopefully resolve once the pelvic floor muscles were not so spasmed. So she reccommended botox. But that didn't work. I almost went through with TG decompression, but thankfully I got a second opinion about the SIJD. I may end up one day needing surgery, but I would not discount SIJD. I have major hamstring tightness and I think it is coming from my SI joint being anteriorly rotated (so it causes my hamstrings to tighten). I will say with SIJD, one should not do a lot of water walking. It puts too much pressure on an unstable pelvis to move through water.

Have you all tried professional massage? Just an idea maybe in conjunction with the pool. I get some relief with massage, although it is short lived because my dysfunction has been going on for so long now.

Also has your daughter had the Potter MRI? I personally would get a MRI read by Dr. Potter before I allowed my daughter to have any injections or botox. There's no risk with an MRI and it might help you know more about where her pain is coming from. Maybe you've already done this though, so sorry if you have.

I hope you all are able to find more lasting relief soon!