Discussion Forums
Mon, 02/01/2010 - 21:09
We were very sketical about HBOT. I mean, it's only oxygen right? right.. but what a difference it made!
My grandson Garrett went for his first treatments in the spring of 2009. The frist week he recevied 1 hour twice a day. On Thursday morning we noticed a huge difference in the tone in his legs. He received a total of 40 treatments and 60 hours of intensive PT with the therasuit.
He had tried painful botox treatments, the dangerous drug baclofen with no real results. HBOT for him has been an answer to prayer. Every child will be different. But for Garrett this has majorly changed his life.
We did HBOT for our daughter Bekka in August of 2009. We did 40 sessions, 1 hour twice a day. We went there with an open mind and heart knowing that this might not do anything to improve Bekka's life or maybe it will. We had a couple fundraisers to help with the cost and off we went. Bekka is now 6 yrs old and has anxiety issues whenever we go somewhere new to a building that can even remotely look like a doctors office, clinic or hospital and make herself ill. I can't even take her to my college campus without her getting sick. Here we are in another state hours from home just me and her.... I'm thinking to myself, I can do this! We have towels, bucket and extra clothes etc... We pull up to the clinic and ..... Nothing! Not a peep from her! No screaming, crying, coughing or making herself ill.... I just felt this erry calm. We went in, had an appt with the doctor and then it was time for our first treatment... I thought uh oh its gonna happen now.... she's gonna see the chamber and freak out... nothing! We went in the chamber and did the treatment without a hitch!! I was almost in tears! She just smiled at me and it's like she was saying, "Mom what's all the fuss and worry about? I know that this is going to help me so relax!! " LOL We have done botox, baclofen etc without much success. Bekka has spastic hemiplegic CP that mainly affects her trunk and left leg. Her leg spasms alot. Mentally she is smart as can be! She was born deaf in both ears, her cochleas weren't completely developed ( Bekka was born at 24 wks - 4 months early) She has a cochlear implant in her left ear that enables her to hear and we were looking into doing one in the right to give her directional hearing. When you get a cochlear implant it essentially ruins the inside of your ear so that whatever hearing you did have is gone so this would be a huge decision for us. We were scared it would ruin our chances if a new techology came out that would work even better. In the meantime we started HBOT. After about 20 treatments there were many times that I thought Bekka heard me or the TV or toys... she was responding to sounds when she didn't have her cochlear implant processor on (this external part has to be on in order for her to hear, when she's playing on the floor and rolls around it falls off) I thought, NO you're just being too hopeful.... well she WAS hearing!!!!!! We went to our cochlear/audiology program a couple weeks after we came home and they retested Bekka. She went from Profound hearing loss in the right ear to Mild to Moderate!!!! She now wears a hearing aid in her right ear and has almost normal hearing with it! We didn't get alot of results as far as tone and spasticity but I don't care. My baby can hear! She also started making more mouth movements, tongue movements, eating food better, making new sounds and while we were there for treatments she said uh oh when another child dropped a toy and she also said MOM for the first time!!!!!! I can't tell you what that felt like. Mentally Bekka was always smart but I felt like her "Light Bulb" got even brighter after treatments.... she just exploded with learning new things. I had a hard time keeping up! I know that not everyone gets results from HBOT everyone is different. Some people can take Aspirin for a headahce and it works just fine others might need something prescription strength.... the point is everyone is different and will react differently. I just wanted to share our results! We are trying to raise $ to get our own chamber at home so we can continue treatments. Please feel free to check out my beautiful baby girl. www.bekkasmiraclefund.shutterfly.com
Hello Melissa,
Congratulations! What a nice surprise, I'm sure that wasn't something you were even hoping for. You have a beautiful little girl.
When you order your HBO chamber be sure to also get a concentrator. It increases the % of oxygen. Ususally you have to get that from a different company.
Have you started your fundraising yet?
susan
We haven't done any for the chamber yet. We did write a letter to my husband's union and his company asking them to donate the $ for one. They make million dollar donations alot to organizations so we're hoping they can make a small donation to one of their families and since their insurance is self funded they will hopefully be saving themselves money in the long run if Bekka doesn't need so many services with the benefits of HBOT. Our area is very hard hit by the economic downfall. We are in lower SW Michigan and NW Indiana area and the unemployment rate has been the highest in the nation for along time. Our friends, family, neighbors and ourselves are just trying to make do and keep the electric turned on so fundraising on that level won't go well right now.
When fund raising you really have to take that into consideration. Maybe we should start a forum for parents to share ideas, some have great solutions that are internet based. The key that I"ve found is to find a need and fill it. That sounds easier that it is many times.
Susan, I like the idea of a fundraising forum. That's one of the hardest things for PKS Kids. We are spread out, no concentration in any area and it's hard to involve people.
thanks!
Gretchen
We have done hbot with our daughter Lilly who has a duplication on her 2nd chromosome. We've done a little over 100 dives and Melissa I have to agree. It's just like a light bulb! There wasn't big, huge, obvious signs with Lilly but she is just more "with it". More interactive, more verbal. And we heard Momma for the first time in the chamber too!! It was like the 4 or 5th day and she had her hood on. I thought I heard her say it but thought...no way!! Then few minutes later, again and everyone in the chamber heard it! It was the most beautiful sound! We got lots more eye contact and babbling.
We also have had to raise funds for the hbot plus the hotel and food for a month away from home. I think it would be very helpful to start a forum for us to share ideas. We have always done garage sales but lately I 've been doing bake sales and advertising on fb. It has been a HUGE hit! Busy but HUGE!
I would like to do another round of hbot but my delima comes with being gone from home for 4 weeks. I have an older child and I just hate being away. My husbands job is very demanding and his schedule is never the same so it makes it hard. We shall see!