Jake & HBO
Information on HBO:
Hyperbaric Oxygen Therapy is 100% oxygen delivered in a pressurized chamber (1.5 to 1.75 for children with cp) to increase oxygen concentration in the blood and other fluids in the body. The thought is that the increased O2 will help to revive brain tissue that is dormant near a brain injury but that has not actually died. Some of the benefits seen in children with cerebral palsy have been, decreased spasticity in limbs, increased babbling or speech, decrease in seizure activity, and increased head/trunk control. All children react to the treatments differently. KidPower is providing this page for informational purposes only. If you decide to participate in this therapy with your child, make sure you research it carefully. Use a center that is knowledgeable in the teatment of children and uses Dr. Richard Neubauer's, Ocean Hyperbaric Center, protocol.
Background Information on Jake:
Jake is 3 1/2 (turning four January 1st)
Diagnosis: basically he has been diagnosed developmentally delayed, CP (doctors feel no mental retardation is involved). He is responsive but just can't get his legs & arms to do what he wants them to do, and he wants to say alot but can't get his mouth to do it either.
He is affected in both legs and arms, spastic quad cp. He can not yet sit
unassisted, uses a gait trainer and prone/surpine stander. He has a great personality and loves going down slides, and loves to ride the carnival rides especially the carousel!
Jake did have ear tubes put in before he started HBO. Young children and those with severe cp who cannot clear their ears on their own are encouraged to get the tubes so that the children do not have the pressure buildup in their ears during treatment. The pressure has been compared to that of taking off and landing in an airplane. Talk to your physician about this before starting HBO. SPECT scans are also recommended before, during and after treatment so that improvement can be visually measured. This can help in the insurance reimbursement battle. Jake did not have a SPECT scan prior to treatment.
HBO Experience:
My experience with HBO thus far has been great! Jake and I spent the month of April in Florida receiving 38 treatments. The facility we used has a multiplace chamber in which Jake & myself went into. Jake then had a hood placed over his head and he breathed the oxygen. I just breathed the recirculated air in the chamber itself. We saw quite a few changes. Though no more words were coming from Jake the volume of his voice and words were louder. His tone has decreased in his legs, hips and arms. The clarity of his whole "self" is so
apparant. I can't explain it medically. It is just like Jake's eyes and understanding of what is going on around him is so much clearer. Even his teachers at school noticed a clarity about him. Also his tone in his legs decreased. His legs used to be so tight that it was like concrete, and while
in his walker he could hardly take a step without some coaxing and tickling, after the 38 teatments, his legs move with ease.
Our last adventure (as we like to call them) was an 8 day trip to Long Island, New York (139 Spring Fireplace Rd ,
East Hampton, NY) Hyperbaric Services of America we received 16 treatments there. This
was a monoplace chamber, and Jake went in alone. He did great. He had no problem with being in there alone. There is room in case the child does need parental support. We were 
very pleased with this facility as well. This one was run much more "medically" with them checking Jakes temp, heart rate, pulse,
and lungs before EACH treatment. The changes I noticed were once
again the same as the above - with the added results - stronger head control, lifting is head off of the floor in a laying position, and the teachers once again noticed even MORE clarity and awareness of his surroundings. Jake
became sick (stomach virus) and began having breakthrough seizures (due to low medicine levels) so I am hoping that now we have gotten the infection and seizures back under control that I will see even more changes over this and next week.
I strongly believe that HBO therapy is working and will be getting an additional 20 treatments the second week of August, again in Long Island.
UPDATE 8/24/99
Jake and I have now received a total of 72 treatments. The last 18 just
received from August 6-16, 1999. We again went to the East Hampton Long
Island facility. This time around I started Jake on a multi vitamin. I felt
that maybe the "bug" he caught after our return from the last set of
treatments was due to the fact HBO wore him down. That is something you need
to keep an eye on. We also gave Jake a break after his 10th treatment, again a
recommendation on my part. A child needs to have a break after so many
treatments so that you don't see the oxygen toxicity reaction.
Jake did great again. Once again going into the chamber alone like a trooper.
I have noticed a BIG change in Jake this time around. He has a whole new
"awakening" about him. He is so much more aggressive! (In a good way). He
just doesn't stop moving around now. Before I would put him on the floor and
yes- he would move around on his back and all- but now - watch out!!! He
moves across the floor so much quicker and with ease! His vocalization is
stronger and LOUDER too. We feel that he may be mimicing our words!! We are
very excited with the changes we see this time around. I can't wait to get
him back to school next week (August 30th we start) to see what the teachers say! I will keep you all informed!
UPDATE 11/18/99
Hello all, Jake and I had our latest adventure with HBO treatments October 9-15th. He received 14 more treatments which gets us up to 86!!! This was a great experience once
again.
Jake again was a trooper in the chamber and was once again able to go in
alone. Once you do it you just don't turn back I guess!
We saw even more improvement in Jake's head control. We have also noticed an
increase in his vowel and letter sounds. He seems to be putting letter and
vowel sounds together to try to make more words. We still feel that he is
trying to mimic our words. The nurses at the Chamber noticed a big difference
in Jakes head control and eye contact. They also noticed that Jacob was
communicating with them more through eye gazing and smiles. Where as before
he might just kind of look "at" you or "through" you. Where as now he is
looking and "communicating" with you.
His teachers at school have noticed a GREAT deal of changes. The biggest one
being the same as the above: AWARENESS! They say that he notices the other
children much more and communicates with them. He is much more attentive at
the computer and during story time. He actually looks at the book as if he is
REALLY listening and following the story. Where as before he would be more
focused on the floor or the kid next to him. But his teacher pointed out that
with the better head control, it is easier for Jake to stay looking at the
book cause his head is just not falling down. His speech therapist is
THRILLED with the vocalization progess. He is now drinking from a straw too!!
Not like a big task to us - but we are thrilled with it!!!! She also stated
that now she will not only have Jake pick an object (she uses flash cards
with Jake for him to make certain decisions) with eye gaze but she now asks
him to "touch" the object and he has had a 60% success rate!!
So in all, we have seen great receptive and cognitive changes with Jake. His
head and trunk control have improved too, but of course not as much as I was
hoping for. I will say that the most changes for Jake have not been his
motor skills but brain skills. If that makes any sense. But they say HBO
works slowly and gets to different areas in the brain at different times! So
maybe after our next set of treatments the motor skills with be the ones that
it is improving!
We are now going to take a break for the holidays so we won't be doing
anymore teeatments until at least January or February. So I will keep in
touch! Again if anyone has any questions about HBO please feel free to
contact me!!!
February 2000
- Well folks, we went to Hyperbarics of America once again
during February vacation for 11 more treatments. We were supposed to get 12,
but due to my physical condition we only got 11. (isn't it funny; we go on
and on about how our children go through this and that and when we are sick
it's like "I can't be sick I am the mom) Anyway..I was sick and we headed
home early.
Jake received 10 of the treatments in East Hampton Long Island facility and
as usual Melissa, Angela & Debbie were wonderful. Jake was a trooper in the
chamber (as always) and did great. I did not see any great differences in
Jake this time. I just continue to see the alertness and muscle control get
stronger and stronger. He has now received 97 treatments and I hope to get to
the 150 mark. But not sure if that will happen. Jakes therapists, teachers
and family members continue to make remarks about how much more vocal he is
and he has "mastered" many of the tasks at school that we set out to do for
this school year. I feel that this progression is in direct relation to the
HBO treatments. He is sleeping better, less spastic and definately more vocal
and saying a few more words.
Right now we have no plans for more treatments in the immediate future, but
will keep you all up to date when we do. And as ALWAYS if anyone has any
questions, comments or concerns regarding the HBO treatments (monoplace or
multiplace - we've done them both) please don't hesitate to ask, and remember
NO QUESTION IS A DUMD ONE! Hope to hear from you soon.
UPDATE July 18-23, 2000
Jake received 12 more
treatments from Hyperbaric Services of America on Long Island New York, We
are now up to 109 treatments!
Once again Jakes vocal skills and head control were affected by the treatments. His teachers and physical therapists all noticed a "great" increase in his head control and arm strength to push up on elbows!! He is in the summer program at school and his OT, PT and Speech therapists are all different from the school year, but his PT happened to stop by school one day and could not believe the head control she had seen since school ended in June. She thought he looked great and loved the way he was pushing up and holding his head up for so long!! He has also been picking his head up off the pillow in bed and when he lays on the floor, something that we saw awhile ago when he got some treatments, but then stopped, this time it seems to be staying with him. He is also rolling from front to back much quicker and without using his tone!!
He also really has once again made strides on the vocalization and starting to really put vowels and sounds together for more words. He is putting two and three words together!
Again his whole well being and "happiness" seemed to be affected with this round of HBO. He has been sleeping through the night now for about two - three weeks with no help from ANY sleep aid - such as Melatonin or Valium!!
I am once again very pleased at the results. We will probably be taking a break from HBO for a little while due to the fact Jake's little sister is due in October, but Connecticut folks - there is hope that we may get a chamber here in Connecticut by the fall!! So I will keep my fingers crossed and hope for that. My future goal would be to get Jake a long set of treatments (30 in a row again) but we will see how things go! We still have not seen any regression from the treatments.
Again if anyone has any questions or concerns regarding HBO please contact me, I will be more than willing to answer any and all questions. We have experienced both the monoplace and multiplace chambers!
Good luck to all who venture down the HBO highway!
If you would like more information please contact Karen at KarenK290@aol.com and she will be more then happy to talk with you.
For more information on HBO you can go to our
HBO Listing or our Alternative Therapies Page under HBO/HBOT.
Or you can read about Kyle and Larissa's HBO Experience.
Copyright 1999-2005 by KidPower Family Support Resource. Do not use any of the information or images from this page. This page was made exclusively for KidPower. Karen contributed all the information and pictures of Jake and is the sole owner of the content. Thank you.
This page last updated 08/06/2000