Monday, September 22, 2008

Clarification on Saebo Stretch, Botox, Adderall

http://www.hemifoundation.org

After reading a comment on today's post, I decided that I better write a bit of a clarification statement.

First off, I need to state that I'm only writing about how these things effect Jessie and it might be different for other kids. Keep trying things and do whatever works for your child.

Saebo Stretch is effective for stretching the fingers and thumb, but I believe that many other orthotics that are built for that purpose would work as well. If insurance will pay for one, get it, knowing that your child might need to "grow into it". Bottom line, I think that stretching the fingers and thumb at night are good for presentation of the hand at a minimum, maybe functional use too, but I'm not willing to stand behind that one yet. Jessie is a long way from any functional use of that hand. She may never get there.

Botox. The bottom line is that Botox does reduce the finger spacticity (tightness in the muscles and tendons). Most people say that this will only last for a few months and then you have to do it again. I agree with that statement. The idea, is to keep the spacticity down during the first year of recovery, and see if we can get some functionality back in the hand. It is near impossible with stiff fingers and thumb, but at least there will be a fighting chance if the fingers and thumb are loose. So that's the idea. We won't be able to say if it helped long-term for a couple of years, but in the short-term, it does loosen up those fingers and thumb.

As a side note, the Botox will help with the dorsiflection (drop toe) if injected in the hyper-toned calf muscle. Once again temporarily.

Last but not least. Adderall, which has nothing to do with the first two. Adderall is given to help Jessie focus. It is Amphetamine Salt tablets that are usually given in 5mg or 10mg doses to kids her age. This drug, seems to be helping with Jessie's focus, but we're not really ready to make that call yet. We're doing a blind study with Jessie's teacher to see if it is truly effective, and at what dose. The teacher gives Jessie a focus grade each day, and she doesn't know if Jessie has been given the drug or not. Right now, the drug does seem to have some positive impact on Jessie's focus, but we really don't have enough days (sample size) yet.

I'll definitely keep reporting on Botox and Adderall and other things as we move forward. I don't, however, want to mislead anyone in the "honeymoon" phase of a drug or treatment. So I'll try to be cautious in my reporting.

I hope that this helps.

God Bless,

Cris

http://www.hemifoundation.org

8 comments:

Rachel said...

I continue to follow Jessie's journey. I couldn't be happier for your family that she is recovering so well, what a strong little girl you have!

My prayers will stay with you, congratulations on all the progress!

Jessie's diagnosis is my worst fear as a parent but Jessie's recovery is a true example of what faith, prayer and perseverance can accomplish! I hope other families are able to draw strength from your amazing example.

Gas Family said...

It does my heart so good to see that you are only posting once a weekish...that means that Jessie is progressing on like a normal 6 year old, and RE is not consuming your life.

I still log in everyday just to see if there is an update, and I get excited when there is, but I love the fact that the Hall family is able to continue on with their lives.

We will continue to follow, and continue to pray for Jessie to recover. Please know that people still pray, and people still care about this amazing little girl!

Anonymous said...

I had my child on Adderall extended release) for the 4th-6th grades and it worked really good for her. She is a very healthy and active child but could not keep focused on the task at hand. The medication really helped her keep her mind on what she was doing. The only problem we saw was that it tended to loose effectiveness around 2 pm, (she took it at 5:30 am). We switched her to Vyvance in the 7th grade and have found that it works until around 5pm which gets her through the school day, Band Practice and Piano practice. One side effect of both of these drugs is appitite supression. At the moment that is a plus for my daughter as she tends to be slightly over-weight. Some of her classmates could not take these same drugs because of weight loss. As my daughter gets older, we hope that she can discontinue these meds.

I have been keeping close watch on your website and pray for Jessie every day. I am proud of her accomplishments and look forward to seeing her (and you entire family)getting back to a normal life. You have been through so much but God has a plan for everything and I know he is watching over you.

GOD BLESS YOU
PANDI IN FL.

Joe A said...

Sarah had Botox shots in her leg before she left the hospital and it really seems to help.

Joe Alward

Anonymous said...

The Hall family has captured our hearts and Jessie's continued recovery is life-affirming. My five year-old daughter reminds me every night to keep Jessie in our prayers and she still holds out hope that one day she will get the chance to meet her.

Yours is a story of unbearable hardship, incredible perseverance and true love. We will continue to pray for all of you and check in on your journey. It certainly sounds like you and your family are closer to your version of normal.

With great respect and admiration,

The Hammer Family in Dallas

krista yambo said...

i am so frustrated with all the therapy and the saebo stretch looks pretty cool and we are glad to see how jessie is doing, we have been trying to figure out what to do with gabby's hand we have hit roadblocks it seems like in every direction because gabby isn't the easiest patient because she still doesn't understand what they are doing to her because she also has mild mental retardation and developmental delay and its just hard everyday, i sit and cry almost nightly trying to figure out what we can do to help her hand....krista yambo

Sweet Charity said...

If you're giving Jessie Botox and Adderall, I assume your doctor found no conflicts? I ask for "selfish" reasons: I am a 31 that takes Adderall and have noticed that I raise my eyebrows, leading to a lot of forehead pain. Granted, I'm sure it's not the physical pain Jessie is going through, nor the emotional pain your family is going through, but I figured I would ask some one with a first-hand experience before I broaching my doctor with a "cosmetic need" (incurring more then enough charges!). Please don't think me rude: I am SO GLAD your little girl is progressing!

plastic surgery said...

Botox injections should be painless if done correctly. I can apply an anesthetic cream to the skin before injecting. Also cool the muscles underlying the skin and apply an ice pack or cold titanium wheels on the skin before injecting.