John's Hyperbaric Oxygen Treatment Diary


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John is a difficult child to categorize. He has been categorized as Attention Deficit Disorder, autistic-like, definitely not Attention Deficit Disorder or autistic-like, mild left hemiplegic Cerebral Palsy, apraxic Cerebral Palsy, severe oral motor apraxia, CAPD, hearing loss, static encephalopathy, seizure disorder, sensory integration disorder, medically/surgically traumatized (24 surgeries in the first 4 years), and as having a visual processing disorder (convergence palsy and disorders of accomodation).

We have done 80 hbot sessions. I saw great improvements after the first 40 in processing, learning and fine motor. I've seen less progress after his recent 40. Although we are still seeing some progress. I really want to do another 40. Then perhaps do boosters of 10 or 20 intermittently.

We went to Chico hyperbarics in CA. Multiplace chamber with a hood provided. No PE tubes. We had tubes as a young child for ear infections. They are a mess with hearing aides and never did work right. I was ever so happy when they fell out. We did just fine drinking bag juices during pressurization (the boxes leak).

First Set of 19 @1.6 & 20 @ 1.75 multiplace chamber with hood

1st day: Should have had John try on the hood and play with it before the dive. He was terrified when the hood went on and cried for 20'. Latex allergy discovered. Techs covered neck piece with plastic. I gave an oral Benadryl dose. No furthur problems.

2nd day: Did not have him drink constantly, just sip occasionally (no PE tubes) while decending. Had massive bloating from trapped gas. (Scared me. I thought he would rupture his Nissan.) Explosive stool and flatulence (in the chamber -- we ascended -- no one was charged for the dive, even though we had completed 55 minutes). Started on regiminof simethecone drops. No further abd discomfort.

1st week: I noted an increase in signing and signed babbling.

9th dive: Grandma says he is calmer. He is not running around her house touching all her things.

10-20th dives: Increase in functional signed language. Acquiring a sign a day. Alot for John. Attempting to give me directions (sit here, turn left, etc).

19th dive: Acquaintances and friends say John seems more connected. For the first time ever, he came to get me and communicated that he wanted me to watch him do an activity. (At a birthday party, kids sliding into a wading pool.) He came into the house and pulled me outside. Made eye-contact and signed "slide in water" while smiling.

20-29th dives: He is more cuddley and more observant.

28th dive: Aunt says John is more interactive. He now will answer yes/no questions. (When asked if he was hungry, he signed "no, swim." Before, would just repete "hungry." Giving me more directions. Is more aware. More responsive to my directions. Gets over stressors easier. Able to wait better. Receptive language is better.

30th dive: Spiked fever and is fussy and tired. I did not tell staff, I didn't want to lose any dives.

31-34th dives: on Tylenol and Motrin.

30-39th dives: Increasing awareness. Will pick other vidios besides his favorite one, then will watch them. (was watching 30 minute sing-a-longs, now full length movies) Will ask questions and seems to be understanding & accepting my answers. According to a longtime friend, he seems to be progressing at a rapid rate.

First month home: We all slept for much of the first 2 weeks. John was afraid of a large dog bounding around us at the park. Before he would have been oblivious. He is more interactive with his sister. He has begun to make physical jokes. "Mom, stand up, sit down, stand up, sit down" all the while laughing. Before, he didn't even sign "stand up." John's teacher has noticed: He no longer jumps up and runs around the class or cafeteria. He is much calmer. He is able to learn 3 words in 2 days instead of 5. She says he is more social. His hearing improvement is negligible as documented by audiogram. (Perhaps 5 dbl changes, possibly due to better attending skills.) He is constantly observing people now. His gaze is more appropriate. He is loud and vocal and now signs "help me" appropriately.

2 months out: Dad says HBOT has "unlocked something in his brain." He can now respond to questions "what is your name" and "how are you" appropriately. His teacher was very impressed when he spontaneously got a towel and wiped the mouth of a wheelchair bound classmate who was drooling. This kind of spontaneous appropriate interaction has not been evident in the previous 10 years. Other teachers at the school have come up to John's teacher and said they notice more self control and affection that just 3 months ago (before) HBOT. These people saw him for 10 months at school last year.

Third month home: John is now asking to go back on the plane quite frequently. He can now tell me how old he is (10). Is now bored with Reader Rabbitt toddler, but can't manipulate the mouse for the pre-school program. Spelling is back to taking a week to learn, but he is reading simple preschool books. He will sign the words I point to in the book! He is also learning to tell time and can sign the names of coins! John has mastered the concept of 1 more.

Fourth month home: John is now working on the first grade curriculum! (We are in 2nd grade this year.) He is doing the work! His teacher is impressed that he will tell her "No" now.

Fifth month home: John is immitating everything. He is "helping" me with the laundry, cooking, ironing (even when I don't ask for help). He observes everything and then tries to do it. He was able to sit thru Toy Story 2 (and Attend for over an hour) twice.

Sixth month home: We are having lots more emotional outbursts. We never had emotional outbursts before. Now we have temper tantrums and sad sobbing. We always had laughter, and it's still there, too. He got out all the old photo albums and looked at pictures of previous Birthdays around his birthday, Halloween pictures at Halloween and Christmases past at Christmas. He is now proficient at click and drag with computer mouse. Independently playing pre-K programs. He saw a picture of himself at HBOt and asked to put on the hood.

I'll attach my current list of improvements. We have been home for six months, since the recent set of dives. John did have a dramatic growth spurt (for him) after hbot.

SECOND SET of 40 @ 1.75 for 60min each multiplace chamber with hood

1st - 20th session (second set): Very calm and focused. Able to sit and do the classwork we brought with us usually completed before lunch. More communicative, and using slightly more complex sentences (sign language).

20-30: Increase in reading. Sat down and signed 9 short books to me in one sitting. Is walking around and signing to himself. Grandma visited Chico and left. Asked where grandma was. (This grandma was never very interactive with him.)

30-40: Imitating children at the pool. Actively watching them and then imitating them. Interacting on a limited level (more than before!).

Note: After the first 40 hbot sessions, we flew home CA-NC and slept for most of the first 2 weeks. This time we went right back to school.

First week: He is very tired. He is engaging in appropriate play with children he just met at a play place. {This is new. Usually only this interactive with his sister.} He was chasing them and being chased by them and laughing. It was great to see. He was able to learn and remember the name signs of his 2 CA cousins and his aunt and another longtime friend of mine. (He grew up around these people and for 10 years couldn't remember their name signs.) When we went to the SF Zoo (where we had been frequently while he was growing up), he reacted differently than before. He showed active interest in the animals, sometimes pointing to them first and signing their names or looking to me for the name/sign. He is easier to redirect. His teacher says he is calmer. That he is sitting and seeming to read books instead of just flipping pages at school. Better fine motor control during morning work (neater writing). His OT says he is less impulsive. She also says his affect is improved. That he appears to have more appropriate emotions visible. Dad says he can see better processing. He only has to tell him something once or twice, instead of 40 times.

Second week: OT says his face and emotions are more appropriate. She says during SI(sensory integration) activities, she can almost see connections being made in his brain. She admits that this is difficult to qualify. It's something she can only tell by her experience. She did test him (fine motor) before we did this set, and will retest him after 6-8 weeks. His communication is better. He is now signing 2 part sentences. ie: "Ride bikes to wait for Kelsi's bus. Ride bikes to go swing." He used to just sign "ride bikes" or "swing." Auditory processing is better. While listening to dad on the phone, he signed "dad, hi" without being told who was on the phone.

At school: (we missed alot of this teaching due to 3 weeks at hbot) He can count to 100 by 10's! He is amazing me with how quickly he is picking up and processing information. His teacher says that the changes are not so dramatic this time. But this time she saw us right after hbot, and not 2 months out.

Third week: He can count to 100 by 5's! This is really rapid learning for us. Okay, this next part is great. He brought 2 teddy bears, a stuffed rabbit and a large tweety bird to the table to eat with him. He even made sure the rabbit and one bear had utensils. He checked them throughout the meal, rocking the 2 in the rocker with his foot, while he ate. Imaginative play... we are there! Speech therapist says he is asking for things appropriately (sign, but will vocalize on request), and when he gets them, his face shows an appropriately expressive response, as though he is making connections that he wasn't before. Using some abstract language (less concrete). ie: Time to go to the book store. Waiting for mom. Is now doing other addition than 1 + _. Uses manipulatives to do single figure addition.

Four weeks: Is getting confused in math (does not know whether to count by 5's or 10's or ones)and with spelling. Very distracted and unable to concentrate well at school. His OT says he has been very calm and focused for the past 3 weeks at therapy. His ST has started doing the "fast forward" series with him. She didn't think he would be able to attend, but he is doing great! As a result, he seems to be processing sound much better. Went to a play by the Little Theater with Deaf actors. The whole play was expressively signed and spoken. He attended exceedingly well. He watched all the actors and seemed to be watching the sign language. (He doesn't usually pay such attention to interpreters, and did not pay such attention to this theater group last year.)

Fifth week: OT says he still seems to making alot of connections. She says he is more focused with more meaningful direction. His teacher says all she can see is that he is a greater flight risk since this session of hbot (but she was complaining about it just before we left, too). She says he is focused in a 1:1 setting, but he needs constant supervision.

Sixth Week: John spoke today. He said "book store." He signed it while he said it. (It's his favorite place to go.) ST says he is very calm and compliant since we got back from hbot. She says he transitions easier, and assists with transitions. She says he handles dissapointments better. If he gets upset, he may yell, but then it's over and he is compliant. Teacher and I were reviewing his admission evaluations done 2 years ago. It puts his language at a 2 year old level. She said "isn't it amazing how much he has improved in the past 2 years"? His language is way above that now. He's reading, and making himself understood. His language may be at a 4-5 year old level (she did not retest him). But he is making himself understood well. If we got nearly 2 years growth in 2 years.... That's truely amazing. His teacher said "He is alot more social now. He is holding my hand, and smiling at people." She said she was thinking, "it's probably the hbot. It's been about 6-8 weeks, and that was when most of the improvements came after the first session."

John has been diagnosed with oculomotor and focusing problems necessitating vision therapy. His visual acuity has improved, though. His vision 2 years ago was 20/40, and now is 20/25. Perhaps it's not vision improvement (I'm always the doubter) but may be better visual processing or attending to the test.

Seventh Week: This weekend, John has been taking messages from one person to another. ie: His dad tells him to get Kelsi to come outside. He goes to her and vocalizes and signs and takes her out. I ask him to tell dad it's dinnertime, and he does. Teacher says he is signing and talking up a storm.

Tenth week: He is very emotional. Cries if he doesn't get his way. He as mastered counting to 100 by 5's, 10's, 25's and of course 1's. We all are waiting anxiously for summer. Only one more week of school!

Twelve weeks: signing up a storm. ie: we passed a water park, signed "swim, water, climb up and slide down, waves, time to swim."

Fourteen weeks: Language is continuing to progress. Will now take messages consistently from one person to another. Will just come out with statements like "school is closed." Goes and gets books and sits down, signs "homework" and proceeds to work in workbooks. Vocalizing more with meaning, and making better verbalizations. Brings me a magna-doodle. Tells me to draw "hot" or "open." Traces the word and the picture, erases it.

Story by Debra Hall, John's Mother. Homesick4CA@aol.com

For the rest of the story: http://www.cherubs-cdh.org/members/stories/halljm.htm



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Last updated May 20, 2003 mums@netnet.net