Ok where to begin. I am just going to note on here what we discussed as to keep a record of today. My memory is getting bad lately so I try to write everything down so not to forget it.
Overall my impression of what was going on in Nate's head is pretty much what I thought.
His response to questions is delayed. When she would ask him questions that required some what of a response he was very delayed at answering.
His goofing off and ovoiding answering questions is his way of coping with his confusion and frustration of not knowing the answer right away.
His short term memory is not there at this point. It may return with time but in her educated guess is that he will always have a deficite on short term memory of what extent is not clear. With regaining memory after brain damage it is never the same response of regaining it.
His math skills right now is that of a 3rd grade level.
He shows signs of neurological damage in his right hand vs his left. The response time for him to hear a word and for him to put that on paper is very delayed again. She said that with time this may come back to a normal range.
Multi tasks for him is not atainable. He needs to have only short answer responses with multiple choice and or true or false. Any writing he should be encouraged to use a computer for that. Nerve damage to his right side is noted in his medical notes from last year.
His social skills are very delayed. He needs to get in to some social skill therapy. This is due to his delay from many years of being in pain and pushing away others out of his safe zone. His coping skills will be addressed in this therapy. She gave me the name and info of the therapist she suggests.
He needs ocupational therapy. The school should be able to get this service from the school. If the school does not think he needs it she said to get a hold of her and she will set them straight.
He also is in need of speech therapy. His delayed reaction in verbally answering questions was labored at times. He would say the wrong word for comon items and so forth. This is also something that the school should cover. Again if they do not then she will see to it that they do.
She wants to see him in a year for a re-eval to see what his progress has been.
He is not to be in regular classrooms as yet. He needs a one on one in a small setting. She does not want him walking in the halls with the other students going from a class to the next class. This is something that maybe in a year he can start doing. He is to only work maybe 2 hours a day on school work. She suggests that we split the time up between a tutor at home and then some time at school as well. The goal is to get him aclamated back into the school and classroom settings. But for right now and the next year he needs to have the one on one. After he is re-evaluated is when we will decide if he is ok to try changing classes.
I am only putting this info in here because his carepage has some friends that read it from time to time and I do not want any one reading it and knowing that He has brain damage.
Overall the long term outlook for him in the education area is all up in the air. He may flourish and go far beyond what at this time she thinks is his capability. But for now we are just going to take it one day at a time.
Right now this is most of what I can think of.
Monday, March 23, 2009
Tuesday, February 17, 2009
Copy of letter to Dr F
This is just for documenting purposes.
Dearest Dr. F,
Hello, my name is Kellie Haupricht and my son, Nathan, will be 15 on March 16th. (Chiari, Tethered Cord, Pseudotumor Cerebri, suspected EDS, multiple chemical sensitivity)
Nate has been through 90+ Hyperbaric treatments and counting. We’ve witnessed many improvements in Nate since HBOT treatments. The HBOT center documents every patient thoroughly (I also documented changes at home). I don’t know if any one has ever used HBOT with EDS or Chiari. We also use Therapeutic Grade Essential Oils (TGEO) to help with wound healing. He used Lavender TGE oil on Nathan’s incisions that were not healing. He did not have one infection during the many months trying to get them healed. We owe it all to the TGE oils.
Many neurosurgeons believe he needs a debridement of his decompression site every couple of years to keep things flowing properly. We have not done this as of yet. My thoughts are that the HBOT reduces swelling and heals the body with pressurized oxygen. I can’t help but wonder if he is over shunting, thus causing pain issues opposite of too much CSF. Also what if we do get him for a debridement of the surgical site … then get him in HBOT ASAP. This would assist healing his wounds faster to deter rapid progression of scar tissue growth. What are your thoughts on this?
Judy Burkholder at Sara’s Garden www.sarasgarden.org is very interested in doing research. I first met Judy when her daughter-in-law gave birth and sadly passed away. I worked at the hospital in ICU at that time. Judy is a registered nurse. She runs a HBOT (non-profit) center and has plans to expand into more holistic medicine practices at this facility.
I would really enjoy hearing your thoughts on Hyperbarics, EDS, Chiari, and scar tissue formation. I can only imagine what a difference continued HBOT treatments would make on Nathan’s quality of life if he was free of the scar tissue and had proper CSF flow to his brain. He would have the opportunity to thrive with a promising future.
I am just a mother with a MOM degree trying to find relief for my son. Nate’s sister is showing signs of EDS (in my opinion). She has problems with her hips, knees, wrists, elbows, whatever - joint de jour. She suffers from many female issues, monthly producing ovarian cysts that pop and are very painful. I personally had poly cystic ovaries and endometriosis, degenerative disk disease, fibromyalgia and my mother had fibromyalgia and pseudotumor cerebri - I could go on and on with my sisters, etc.
Any guidance and possible assistance would greatly be appreciated! Nate’s short form medical history is attached below my signature.
Respectfully yours,
Kellie Haupricht
419-822-6049
Nate’s Short Form Medical History:
· 01/2007 he was diagnosed with Chiari I and Arachnoid Cysts on the brain stem.
· 06/25/07 Decompressions surgery at Johns Hopkins by Dr. Ben Carson.
· 3 weeks later he developed Meningitis and a triple pseudomenengeocele (sp?).
· Went back to Johns Hopkins. 2nd decompression which took twice as long debreding his surgery site due to “more than normal” scar tissue growth.
· Asked Dr. Carson about the possibility of a connective tissue disorder. He grabbed Nate’s neck skin and pulled it out and said “see he is not a Gumby so he has nothing of the sort.”
· Nate can go back to playing football.
· He did great for about 6 weeks after the 2nd decompression.
· He has a HUGE 2 inch wide keloid where he had his surgery. He started going downhill again.
· Pain rages began.
· Difficulty breathing - So severe, he just wanted to die.
· At times he was out of control. What use to be a “once in a while” thing was now a daily occurrence.
· Sought assistance from Toledo area neurosurgeons.
· Went through several LP’s and weekly lumbar drains to measure his opening and daily pressures. Opening pressure in the 40’s and higher.
· Multiple Chemical Sensitivity had severe multiple reactions to several drugs. Vancomycin, Versead, Diamox, Decadron, Latex and lastly Ambien. When reading the list of rare reactions to these meds, he had them all.
· Other drugs: Normal dosage 100mg – Nate would require 2-3 x that amount for the same relief.
· His personality and behavior problems worsened.
· In constant pain.
· Toledo neurosurgeons diagnosed him with ADHD, Autism, and on and on.
· Pediatrician did not agree with their off-the-wall diagnosis.
· Tried to find another neurosurgeon with no luck.
· By the Grace of God, some friends we were able to get Nate in to see Dr. Bolognese.
· Dr. Bolognese’s diagnosis: Chiari, Tethered Cord, Pseudotumor Cerebri, Suspected EDS, multiple chemical sensitivity.
· March of 2008 we spent the month in NY. Nate had a Tethered Cord surgery.
· He had complications that we thought were going to result in paralysis.
· A week later they found the problem and went back into the Lumbar spine to correct it and also put in a VP shunt, non programmable, medium flow in his right ventricle. Home by the end of March 2008.
· Still having pressure problems (I believe are “global” pressure issues).
· Our pediatrician did not feel comfortable prescribing narcotics for him and at the dosages he needed. Nathan hated taking them. We did work out a pain scale based on what med he took. Eventually ran out of the meds sent home with him from NY.
· Made an appt with a pediatric pain clinic in Michigan - 3 months out.
· Pain rages included falling more than before. Spoke with Charnel Jerome and she thought of trying orthostatic BP’s.
· 5 min orthos within normal range. At 60 second intervals they were off the charts! His heart rate would Jump and his BP was all over the place.
· Received referral to see pediatric Cardiologist. Spending 4 hours at cardiologist office they did EKG and a echo. Met the Doctor and he said syncope spells. I about possible POTS issues. He said that he saw no abnormalities in his EKG’s and Echo’s to point that way. I asked him what his BP was when we came in as I knew they did not take his BP at all! He gave us a Rx and I filed it.
· 07/2008, Nate was still actively bleeding from his abdomen incision, incisions on his head from the shunt, and a spot from a fall in September of 07.
· With a script from Dr. Bolognese, Nate began Hyperbaric Treatments.
· By the 4th day (8 HBOT dives) his incisions were hardened for the first time.
· By the 6th day they were healed (pictures attached).
· By the 2nd week Nathan woke up and said that he did not hurt that morning – First time he had ever done that.
· He completed a total of 40 dives at that time doing 2 per day for 20 days straight.
· Only using the strong liquid Oxydose med maybe once a week. Other than that it was 800mg Motrin or Tylenol.
· After 2 months, pain and pain rages returned.
· He had MRI’s right before he started back on HBOT treatments. MRI showed he was now slightly over draining on his right.
· 2nd set of 40 HBOT treatments.
· He felt very good and the pain level was tolerable - Best part was the pain rages were gone!
· Minimal pain meds once in a while. He does take his normal 800mg in the evenings as he has more pain toward the end of the day.
· NO pain rages since October!
· He is what we call a walking popcorn machine. Joints popping when he walks all the time. When he makes a fist it sounds like every joint in his hand is popping.
· History of several broken bones from strange falls. All fractures were in his growth plates.
· Pain came back. Started him on HBOT last week.
· Told by many neurosurgeons that he needs a debridement of his decompression site every couple of years to keep things flowing properly. We have not done this. My thoughts are that the HBOT reduces swelling and heals the body with pressurized oxygen. I am wondering if he is over shunting thus causing pain issues opposite of too much CSF. Also what if we do get him for a debridement of the surgical site … then get him in HBOT ASAP. This would assist healing his wounds faster to deter rapid progression of scar tissue growth. What are your thoughts on this?
· Spect scan before he started HBOT in July of 07.
· 40 treatments
· Repeated the Spect scan.
· Results showed several of the dead areas are now alive!
decompression site
July 07 site before HBOT
4 days into HBOT
A look inside of the HBOT Chamber
Dearest Dr. F,
Hello, my name is Kellie Haupricht and my son, Nathan, will be 15 on March 16th. (Chiari, Tethered Cord, Pseudotumor Cerebri, suspected EDS, multiple chemical sensitivity)
Nate has been through 90+ Hyperbaric treatments and counting. We’ve witnessed many improvements in Nate since HBOT treatments. The HBOT center documents every patient thoroughly (I also documented changes at home). I don’t know if any one has ever used HBOT with EDS or Chiari. We also use Therapeutic Grade Essential Oils (TGEO) to help with wound healing. He used Lavender TGE oil on Nathan’s incisions that were not healing. He did not have one infection during the many months trying to get them healed. We owe it all to the TGE oils.
Many neurosurgeons believe he needs a debridement of his decompression site every couple of years to keep things flowing properly. We have not done this as of yet. My thoughts are that the HBOT reduces swelling and heals the body with pressurized oxygen. I can’t help but wonder if he is over shunting, thus causing pain issues opposite of too much CSF. Also what if we do get him for a debridement of the surgical site … then get him in HBOT ASAP. This would assist healing his wounds faster to deter rapid progression of scar tissue growth. What are your thoughts on this?
Judy Burkholder at Sara’s Garden www.sarasgarden.org is very interested in doing research. I first met Judy when her daughter-in-law gave birth and sadly passed away. I worked at the hospital in ICU at that time. Judy is a registered nurse. She runs a HBOT (non-profit) center and has plans to expand into more holistic medicine practices at this facility.
I would really enjoy hearing your thoughts on Hyperbarics, EDS, Chiari, and scar tissue formation. I can only imagine what a difference continued HBOT treatments would make on Nathan’s quality of life if he was free of the scar tissue and had proper CSF flow to his brain. He would have the opportunity to thrive with a promising future.
I am just a mother with a MOM degree trying to find relief for my son. Nate’s sister is showing signs of EDS (in my opinion). She has problems with her hips, knees, wrists, elbows, whatever - joint de jour. She suffers from many female issues, monthly producing ovarian cysts that pop and are very painful. I personally had poly cystic ovaries and endometriosis, degenerative disk disease, fibromyalgia and my mother had fibromyalgia and pseudotumor cerebri - I could go on and on with my sisters, etc.
Any guidance and possible assistance would greatly be appreciated! Nate’s short form medical history is attached below my signature.
Respectfully yours,
Kellie Haupricht
419-822-6049
Nate’s Short Form Medical History:
· 01/2007 he was diagnosed with Chiari I and Arachnoid Cysts on the brain stem.
· 06/25/07 Decompressions surgery at Johns Hopkins by Dr. Ben Carson.
· 3 weeks later he developed Meningitis and a triple pseudomenengeocele (sp?).
· Went back to Johns Hopkins. 2nd decompression which took twice as long debreding his surgery site due to “more than normal” scar tissue growth.
· Asked Dr. Carson about the possibility of a connective tissue disorder. He grabbed Nate’s neck skin and pulled it out and said “see he is not a Gumby so he has nothing of the sort.”
· Nate can go back to playing football.
· He did great for about 6 weeks after the 2nd decompression.
· He has a HUGE 2 inch wide keloid where he had his surgery. He started going downhill again.
· Pain rages began.
· Difficulty breathing - So severe, he just wanted to die.
· At times he was out of control. What use to be a “once in a while” thing was now a daily occurrence.
· Sought assistance from Toledo area neurosurgeons.
· Went through several LP’s and weekly lumbar drains to measure his opening and daily pressures. Opening pressure in the 40’s and higher.
· Multiple Chemical Sensitivity had severe multiple reactions to several drugs. Vancomycin, Versead, Diamox, Decadron, Latex and lastly Ambien. When reading the list of rare reactions to these meds, he had them all.
· Other drugs: Normal dosage 100mg – Nate would require 2-3 x that amount for the same relief.
· His personality and behavior problems worsened.
· In constant pain.
· Toledo neurosurgeons diagnosed him with ADHD, Autism, and on and on.
· Pediatrician did not agree with their off-the-wall diagnosis.
· Tried to find another neurosurgeon with no luck.
· By the Grace of God, some friends we were able to get Nate in to see Dr. Bolognese.
· Dr. Bolognese’s diagnosis: Chiari, Tethered Cord, Pseudotumor Cerebri, Suspected EDS, multiple chemical sensitivity.
· March of 2008 we spent the month in NY. Nate had a Tethered Cord surgery.
· He had complications that we thought were going to result in paralysis.
· A week later they found the problem and went back into the Lumbar spine to correct it and also put in a VP shunt, non programmable, medium flow in his right ventricle. Home by the end of March 2008.
· Still having pressure problems (I believe are “global” pressure issues).
· Our pediatrician did not feel comfortable prescribing narcotics for him and at the dosages he needed. Nathan hated taking them. We did work out a pain scale based on what med he took. Eventually ran out of the meds sent home with him from NY.
· Made an appt with a pediatric pain clinic in Michigan - 3 months out.
· Pain rages included falling more than before. Spoke with Charnel Jerome and she thought of trying orthostatic BP’s.
· 5 min orthos within normal range. At 60 second intervals they were off the charts! His heart rate would Jump and his BP was all over the place.
· Received referral to see pediatric Cardiologist. Spending 4 hours at cardiologist office they did EKG and a echo. Met the Doctor and he said syncope spells. I about possible POTS issues. He said that he saw no abnormalities in his EKG’s and Echo’s to point that way. I asked him what his BP was when we came in as I knew they did not take his BP at all! He gave us a Rx and I filed it.
· 07/2008, Nate was still actively bleeding from his abdomen incision, incisions on his head from the shunt, and a spot from a fall in September of 07.
· With a script from Dr. Bolognese, Nate began Hyperbaric Treatments.
· By the 4th day (8 HBOT dives) his incisions were hardened for the first time.
· By the 6th day they were healed (pictures attached).
· By the 2nd week Nathan woke up and said that he did not hurt that morning – First time he had ever done that.
· He completed a total of 40 dives at that time doing 2 per day for 20 days straight.
· Only using the strong liquid Oxydose med maybe once a week. Other than that it was 800mg Motrin or Tylenol.
· After 2 months, pain and pain rages returned.
· He had MRI’s right before he started back on HBOT treatments. MRI showed he was now slightly over draining on his right.
· 2nd set of 40 HBOT treatments.
· He felt very good and the pain level was tolerable - Best part was the pain rages were gone!
· Minimal pain meds once in a while. He does take his normal 800mg in the evenings as he has more pain toward the end of the day.
· NO pain rages since October!
· He is what we call a walking popcorn machine. Joints popping when he walks all the time. When he makes a fist it sounds like every joint in his hand is popping.
· History of several broken bones from strange falls. All fractures were in his growth plates.
· Pain came back. Started him on HBOT last week.
· Told by many neurosurgeons that he needs a debridement of his decompression site every couple of years to keep things flowing properly. We have not done this. My thoughts are that the HBOT reduces swelling and heals the body with pressurized oxygen. I am wondering if he is over shunting thus causing pain issues opposite of too much CSF. Also what if we do get him for a debridement of the surgical site … then get him in HBOT ASAP. This would assist healing his wounds faster to deter rapid progression of scar tissue growth. What are your thoughts on this?
· Spect scan before he started HBOT in July of 07.
· 40 treatments
· Repeated the Spect scan.
· Results showed several of the dead areas are now alive!
decompression site
July 07 site before HBOT
4 days into HBOT
A look inside of the HBOT Chamber
88 and counting
Thats right we just completed his 88th dive. We will only go till Friday this week then take off and see if this keeps him on a level playing field. Yesterday and today he had a great attitude and his invisible sheild has come down more and more. Yesterday he wanted to play tickle and wanted to walk behind me and try to scare me. This is HUGE! In order for him to do these things he has to touch a person and then allow them to touch him. You see if this were a 4 year old then it would be so cute because it is yet another personal area that he would be expanding on by playing boundries sort of a thing. But this child is 15 and has never ever wanted to hug or be hugged. He has never ever wanted to sit on the couch with some one else. He definately would never want to come as close to some one and say BOo behinde their back. These things are little to some but for us they are HUGE! The HBOT is at work yet again.
Now the theory we are thinking about. The last MRI Nate had said that his shunt was slightly overdraining. That means to me that the HBOT is working. But we can not turn his shunt off because it is a nonprogramable one. Do we go in there and have it tied off? If we go that far do we go back into his decompression site and debreed it from adheasions and scar tissue? After such do we throw him right into HBOT and see if that atops the growth of scar tissue? I will let you know more on what we find out about this idea.
On the other hand his BP is not doing so well. His BP the past 2 days has been going up. Tonight in a bit I am going to do some orthos again and see what is going on.
Again I will be back.
Now the theory we are thinking about. The last MRI Nate had said that his shunt was slightly overdraining. That means to me that the HBOT is working. But we can not turn his shunt off because it is a nonprogramable one. Do we go in there and have it tied off? If we go that far do we go back into his decompression site and debreed it from adheasions and scar tissue? After such do we throw him right into HBOT and see if that atops the growth of scar tissue? I will let you know more on what we find out about this idea.
On the other hand his BP is not doing so well. His BP the past 2 days has been going up. Tonight in a bit I am going to do some orthos again and see what is going on.
Again I will be back.
Tuesday, February 10, 2009
#81 and #82 HBOT Done 2/9/09
We did 2 treatments yesterday. The past 2 weeks Nate has been having some increased pain that he needed Vicodin and Flexeril. He does not want to take the big guy liquid med but he said that he was close to needing it. No pain rages ! We did not want to wait till those started up again. His attitude and demeanor is going down as well.
We can't get back in till Friday. We will do 2 dives then and play it by ear for the next week. We want to see how we can do a booster for him.
My thoughts are he needs a good solid week of treatments. With the EDS he has so much scar tissue in the hind brain area. The scar tissue is causing flow issues. His last MRI showed that the VP Shunt is slightly over draining on the right side. But on the other hand he is having "Global" Pressures. So do we go back in the head and clear out the scar tissue, then jump into HBOT ASAP to hopefully heal faster so the scar tissue won't grow? I don't know enough about EDS to know the etiology of growth of scar tissue. So it looks like I am going to have to do some more research on this.
If anyone has any suggestions please let me know. Right at this moment I do not know any one that has used HBOT for treatment of EDS.
I forgot that last night he was dizzy. His pupils were noticeably uneven. This is the first time that I noticed this like that. I know that it is neurological but not sure what that means. I should call his ped to see or just for them to document as well. BP has been ok. Yay for that.
I will post more as we go.
We can't get back in till Friday. We will do 2 dives then and play it by ear for the next week. We want to see how we can do a booster for him.
My thoughts are he needs a good solid week of treatments. With the EDS he has so much scar tissue in the hind brain area. The scar tissue is causing flow issues. His last MRI showed that the VP Shunt is slightly over draining on the right side. But on the other hand he is having "Global" Pressures. So do we go back in the head and clear out the scar tissue, then jump into HBOT ASAP to hopefully heal faster so the scar tissue won't grow? I don't know enough about EDS to know the etiology of growth of scar tissue. So it looks like I am going to have to do some more research on this.
If anyone has any suggestions please let me know. Right at this moment I do not know any one that has used HBOT for treatment of EDS.
I forgot that last night he was dizzy. His pupils were noticeably uneven. This is the first time that I noticed this like that. I know that it is neurological but not sure what that means. I should call his ped to see or just for them to document as well. BP has been ok. Yay for that.
I will post more as we go.
Tuesday, February 3, 2009
HBOT
A group of volunteer attorneys, led by Richard P. Console Jr. is organizing a class action lawsuit against Medicaid and potentially other health insurance carriers to compel them to pay for HBOT and potentially other treatments for children with Cerebral Palsy, autism, brain injury, CMI, EDS, Lime, and similar diagnoses. Richard got involved with HBOT when he represented the 2 year old daughter of his friend and client, Florence.
Florence’s daughter suffered a brain injury and was denied HBOT treatments despite the fact that the first round of treatments had shown a marked improvement.
There will not be a cost to participating parents who would like to be class members, because it is a pro bono (volunteer) project, In fact, any attorney fees generated will be donated by MUMS and other charitable organizations. Call Richard Console at 800-690-4033 to see if your child qualifies.
Being a class member will not take up your time or effort, because it is a class action.
The primary goal of the class action is to get this therapy paid for, for all class members who want it, and to have reimbursement and recognition of HBOT nationally. I urge you to participate, for your child and all children that could benefit from this treatment. Please call Richard at 800-690-4033 as soon as possible for a free telephone screening to see if you qualify to be a class member. If you are accepted please leave a message with MUMS 877-336-5333, so we can keep track of those involved. Thank you for you help. Julie Gordon
Julie Gordon is the editor and founder of MUMS (National Parent to Parent Network Matcher). She has a disabled daughter. She is nationally recognized throughout the HBO community and participates in many speaking engagements. She is a strong advocate for children.
If your heart is lead to help these children, please call the numbers listed above.
For more info visit www.sarasgarden.org or give me a call.
Thank you
Kellie Haupricht 419-822-6049
Florence’s daughter suffered a brain injury and was denied HBOT treatments despite the fact that the first round of treatments had shown a marked improvement.
There will not be a cost to participating parents who would like to be class members, because it is a pro bono (volunteer) project, In fact, any attorney fees generated will be donated by MUMS and other charitable organizations. Call Richard Console at 800-690-4033 to see if your child qualifies.
Being a class member will not take up your time or effort, because it is a class action.
The primary goal of the class action is to get this therapy paid for, for all class members who want it, and to have reimbursement and recognition of HBOT nationally. I urge you to participate, for your child and all children that could benefit from this treatment. Please call Richard at 800-690-4033 as soon as possible for a free telephone screening to see if you qualify to be a class member. If you are accepted please leave a message with MUMS 877-336-5333, so we can keep track of those involved. Thank you for you help. Julie Gordon
Julie Gordon is the editor and founder of MUMS (National Parent to Parent Network Matcher). She has a disabled daughter. She is nationally recognized throughout the HBO community and participates in many speaking engagements. She is a strong advocate for children.
If your heart is lead to help these children, please call the numbers listed above.
For more info visit www.sarasgarden.org or give me a call.
Thank you
Kellie Haupricht 419-822-6049
Monday, November 10, 2008
Another 40 HBOT Started
This series of treatments was started on 11/4/08
We started last Tuesday. Judy called me on Monday and said he can start any time when did I want to start? We got there bright and early on Tuesday morning. He has now had 9 treatments this round.
I should back up a little bit here. He has been increasingly getting worse and worse as the days went on. His pain has increased to the point that he has been having the proxismal rages almost every day. He has been having memory loss during these times of rage. It all scares him once he is out of the rage. I can literally see it happening right before my eyes. It builds up during the day one little thing at a time. To me it is like the dam getting higher and higher and the pressure builds more and more till the dam breaks. Once the dam breaks so to say he then will start to settle down. At that time he usually is crying and saying he did not know why he was saying things and doing things. He says it is like watching a movie that is really loud and going so slow and he is going crazy.
Nathan about a week before started getting the drunken sailor walk. Then he started falling. He would stand up and he would be back down. So this has gone on several times. I am not sure why but I thought that maybe I should be taking his BP. So I took his BP hen he was laying down and it was not bad. Then later on I figured that hey maybe I should do some ortho's. Sure enough! He was all over the place. I did 5 min between positioning and then did 60seconds. The 60 seconds was the zinger! He would either spike like crazy or he would drop. He could not stand still and that was hard to do the 60 seconds even. Soooooo long story short Nathan got in to see a Pediatric Cardiologist. Well in order to stay in the vicinity of no more than a 2 hour drive we found one that would take Nate as a patient. Get this. Some of the ped card's did not want him as a patient because of the complication that he has. Helloooooooooooo are these people just wanting to show up and be a Doc to the average Joe schmo, or do they want to be a Doctor? Things like this never seems to amaze me. Well to make the Cardiologist story short. We were there for over 4 hours. Test after test. Then we see the doc. He ignores that Nate is in the room and talks to me. Nate starts to say hello do you see me here? Ummm you need to be talking tome. One part of me wants to crawl under the chair and hide because my son is being rude and then the other part of me is saying Go for it man! This kid has been through hell and back and this doc did not want to talk to him? The Doc said o me "has any one told you that he has ADHD?" Well... ya know how I feel about that. I counted a few while Nate gets up and says "I guess I am not needed here Mom I will see you in the car" I do not blame the kid. He is a young man and needs to be treated as such. I then told the doc. He has been diagnosed by his ped as ADHD secondary to his Chiari and Pseudo Tumor Cerebri and so on. That the fact that he thinks that Nate is ADHD has no relevance because he is not Neuro psych. If he can show me his credentials on this then I would gladly talk to him about this. We are here for his heart so cut the chase and tell me what is going on. He then was short with me and said all he could see is that he has syncope. He gave us a script for Atenalol. As I am walking out the nurse is nice and says good bye. As I am paying I mention to the clerk that WOW funny we come here and spend 4 hours here for my sons orthostatic BP issues and no one has even taken his BP? Thank you very much! She gave me an appt card. I filed it when I got home.
So we started HBOT. By the 7th dive Nate was feeling not bad. He was having moments where he did not have head aches. His rages were here or there not every day like before. WE are now on dive 20 and have not had a rage in over a week! Pain wise is better than before. But not right at the moment. He s not feeling well the past 2 days.
I noticed a pattern from before and now. The first few treatments he feels good. Then he goes into a period of same ole sickness and pain. Then he will go back to feeling good. Then about 4 days after he stopped treatments he had a nose dive with pain and everything else. That lasted a few days then he was really good for several weeks.
What is different this time is that the times of this cycle is shorter. Meaning, that he has cycled out of the good to bad to good faster than he did before. Even tho he is not feeling well right now may not be related to the HBOT. The weather is changing and I know that his csf pressures are really out of wack this time around. We took today off. He was vomiting last night and this morning. This evening his Left side of his head hurt real bad and his ear hurt. I put in lavender and a Cotton ball. The cotton had blood on it when it fell out. So tomorrow we will have to really look closely at his ear drum with the Otto-scope to see if there is a hole in the drum.
I know this post is very long. started it a couple of weeks ago and did not finish.
Till next post. I still believe that this works. It is just finding the amount of treatments.
We started last Tuesday. Judy called me on Monday and said he can start any time when did I want to start? We got there bright and early on Tuesday morning. He has now had 9 treatments this round.
I should back up a little bit here. He has been increasingly getting worse and worse as the days went on. His pain has increased to the point that he has been having the proxismal rages almost every day. He has been having memory loss during these times of rage. It all scares him once he is out of the rage. I can literally see it happening right before my eyes. It builds up during the day one little thing at a time. To me it is like the dam getting higher and higher and the pressure builds more and more till the dam breaks. Once the dam breaks so to say he then will start to settle down. At that time he usually is crying and saying he did not know why he was saying things and doing things. He says it is like watching a movie that is really loud and going so slow and he is going crazy.
Nathan about a week before started getting the drunken sailor walk. Then he started falling. He would stand up and he would be back down. So this has gone on several times. I am not sure why but I thought that maybe I should be taking his BP. So I took his BP hen he was laying down and it was not bad. Then later on I figured that hey maybe I should do some ortho's. Sure enough! He was all over the place. I did 5 min between positioning and then did 60seconds. The 60 seconds was the zinger! He would either spike like crazy or he would drop. He could not stand still and that was hard to do the 60 seconds even. Soooooo long story short Nathan got in to see a Pediatric Cardiologist. Well in order to stay in the vicinity of no more than a 2 hour drive we found one that would take Nate as a patient. Get this. Some of the ped card's did not want him as a patient because of the complication that he has. Helloooooooooooo are these people just wanting to show up and be a Doc to the average Joe schmo, or do they want to be a Doctor? Things like this never seems to amaze me. Well to make the Cardiologist story short. We were there for over 4 hours. Test after test. Then we see the doc. He ignores that Nate is in the room and talks to me. Nate starts to say hello do you see me here? Ummm you need to be talking tome. One part of me wants to crawl under the chair and hide because my son is being rude and then the other part of me is saying Go for it man! This kid has been through hell and back and this doc did not want to talk to him? The Doc said o me "has any one told you that he has ADHD?" Well... ya know how I feel about that. I counted a few while Nate gets up and says "I guess I am not needed here Mom I will see you in the car" I do not blame the kid. He is a young man and needs to be treated as such. I then told the doc. He has been diagnosed by his ped as ADHD secondary to his Chiari and Pseudo Tumor Cerebri and so on. That the fact that he thinks that Nate is ADHD has no relevance because he is not Neuro psych. If he can show me his credentials on this then I would gladly talk to him about this. We are here for his heart so cut the chase and tell me what is going on. He then was short with me and said all he could see is that he has syncope. He gave us a script for Atenalol. As I am walking out the nurse is nice and says good bye. As I am paying I mention to the clerk that WOW funny we come here and spend 4 hours here for my sons orthostatic BP issues and no one has even taken his BP? Thank you very much! She gave me an appt card. I filed it when I got home.
So we started HBOT. By the 7th dive Nate was feeling not bad. He was having moments where he did not have head aches. His rages were here or there not every day like before. WE are now on dive 20 and have not had a rage in over a week! Pain wise is better than before. But not right at the moment. He s not feeling well the past 2 days.
I noticed a pattern from before and now. The first few treatments he feels good. Then he goes into a period of same ole sickness and pain. Then he will go back to feeling good. Then about 4 days after he stopped treatments he had a nose dive with pain and everything else. That lasted a few days then he was really good for several weeks.
What is different this time is that the times of this cycle is shorter. Meaning, that he has cycled out of the good to bad to good faster than he did before. Even tho he is not feeling well right now may not be related to the HBOT. The weather is changing and I know that his csf pressures are really out of wack this time around. We took today off. He was vomiting last night and this morning. This evening his Left side of his head hurt real bad and his ear hurt. I put in lavender and a Cotton ball. The cotton had blood on it when it fell out. So tomorrow we will have to really look closely at his ear drum with the Otto-scope to see if there is a hole in the drum.
I know this post is very long. started it a couple of weeks ago and did not finish.
Till next post. I still believe that this works. It is just finding the amount of treatments.
Sunday, August 24, 2008
Weekend Update
Saturday we had a Wedding to go to. Nathan said he wanted to go with us if he felt good enough. We just played it by ear and he was having a so so day so he said he was going to go with. This was going to be a big test. The drive was about 40 min. He does not do well in car rides longer than 15 min. He usually gets all dizzy and throws up due to motion sickness and the Dramamine does not help much for this. We got there OK and he was doing pretty good. Soon after we got there he saw Judy (Judy Burkholder from Sara's Garden) He went right up to her and gave her a big hug. She was pushing Jackson in his stroller and he talked to him a bit and then some of her family came in and she introduced Nate to them and he shook everyones hand that he met. Now this is a HUGE thing. Nathan never liked touch! He would never ever want to give any one a hug. He never wanted any one to touch him either. Now I have seen some days where he still feels like he needs his invisible shield around his space. But to us him willingly on his own going up to people he does not know and shaking their hands and engaging in appropriate conversation is way beyond my expectations of my son. He thought it was cool that there was a (in h is words) open bar. He went and got his own sprite and any time any of the ladies at our table needed a refill he asked if they needed more and he took their glass up and asked the bar tender for more. Again I can not stress that this is a big thing. I was so proud of him. Once the bridal party got there the music got turned up a bit and it was heavy on the base. He started getting a head ache. He could not bring himself to eat because of it. Mark and Jessica and I ate as fast as we could and said our goodbye's and headed home. Mark and I worked out a plan that if Nate was not feeling well and wanted to go home early that I would take him and Mark and Jessica could hitch a ride home with my sister in law. But Jess and Mark was ready to go also. By the time we got out to the car Nate was crying that it hurt so bad that he said he felt like his head was going to implode. I asked earlier in the reception hall if he wanted some pain meds. I had my purse filled with all sorts of his meds so he had a choice as to what type and or strength he needed. He was afraid to take any while there because he did not want to be throwing up there. He is so afraid of being out of his comfort zone when he does not feel well. I can totally understand what he meant by that also. The weather outside was 95' Saturday and extremely humid. We started the car first before we left and had it cooled down by the air and I think that helped also. We brought his aspen caller but he does not like it at all. He says that it hurts and makes him feel like he can not get enough air. But we had it just in case.
After we got home Nate and I were talking and he was holding his head a bit. So I asked what that was about. He said his shunt was swollen. I put my hand on the area on his head where the tubing is at and OMG it was very swollen and hard as can be. He then bent his head sideways and you can see the tubing in his neck that goes down across his collar bone area. He also said that his stomach has been bothering him in the shunt drain area. When he is standing I can feel the tubing very close to the surface. When he is laying down I can not feel it as much. We have already felt that the shunt is not working properly and now this. He has a large belly any way so it is hard to tell if he is dumping CSF outside his stomach. He has no fever so no need for jumping the gun for an infection. I just don't k now. I am going to call his ped in the morning and see if they can order a CT for shunt placement and see what that shows. The problem is that no neurosurgeon locally will touch him. Dr. Bolognese is out of the country till the first of the month now. So we will have to get on this because Miracle flights needs 4 weeks to schedule a flight. I have been told that they can do it sooner if needed. The thing is that we planned the next time we go to NY Dr. B. was going to do the invasive cervical traction on him to test for the degree of his cranio cervical instability. It seems to be better staying there for a period of time to get most of what we need done and then go from there.
I also have it worked out with Judy that the next time Nate has surgery we are going to get in the HBOT chamber a few times as soon as we can to help with his healing process. We may even do a few deep dives especially if they do anything with his bones. Since there is no data or study that has been done on HBOT and EDS (Ehlers Danlos Disorder/Hereditary disorder of the connective tissue). But my thinking is that if the surgery wound can heal faster then that may reduce or even eliminate the adhesions that he seems to form so fast.
All of the HBOT treatments we are doing with Nate is only based on our educated theory of how the body and brain works and how HBOT works as well. This is some what new frontier that we are in hope's of paving the path for others.
Today (Sunday) Nate has felt OK. Not a GREAT but OK. We will take OK any day. But his pain can spike at any time and last for a few min to hours to days and weeks. There is still so much that is a mystery.
Medical Conference update. Things are rolling along with that. Our plan is September 09. We hope to start on raising funds so we can hopefully be able to give the CEU's to Medical personnel for free. That is our goal. Next week Nate has his spect scan. I can not wait to see what that says. We plan on working up a presentation using Nathan's treatment plan the good and bad of it all as another way to aid in treatment/healing process of Chiari/EDS/PTC .
I am not sure if I have blogged any of this before so if I have I am sorry to repeat myself. During the times I have been around the facility of Sara's Garden I have had the profound pleasure of witnessing Miracles. Not just some of the things that we have witnessed with Nate but other children and adults. I wish I could interview every one of their clients and put together a "book". But what I am going to do is get a list of past and present clients and send them a request for them to write their story and also write a letter requesting that Sara's Garden be awarded a Extreme Makeover Home Edition. Their Dream of a Jackson house for the out of towner's needs to be addressed. They are leasing a parsonage house right now. It is a small 2 bedroom house that clients stay for free but it is not handicapped accessible so not all out of town clients are able to utilize. The works are already started for searching for a walk in chamber. Mark works for a mechanical contractor and right now have a verbal that they will provide the labor to install it. There is a large waiting list and they all can not be accommodated due to the limited spaces. Sara's Garden is one of the only non-profit HBOT center. The fees are minimal. Most of all their nurses and paramedics are working there for free to help keep the costs down. I feel something in my heart when I am there. It is hard to explain...but it is all uplifting.
Thanks for reading about our journey. My hope is that some day this information will be able to help others.
After we got home Nate and I were talking and he was holding his head a bit. So I asked what that was about. He said his shunt was swollen. I put my hand on the area on his head where the tubing is at and OMG it was very swollen and hard as can be. He then bent his head sideways and you can see the tubing in his neck that goes down across his collar bone area. He also said that his stomach has been bothering him in the shunt drain area. When he is standing I can feel the tubing very close to the surface. When he is laying down I can not feel it as much. We have already felt that the shunt is not working properly and now this. He has a large belly any way so it is hard to tell if he is dumping CSF outside his stomach. He has no fever so no need for jumping the gun for an infection. I just don't k now. I am going to call his ped in the morning and see if they can order a CT for shunt placement and see what that shows. The problem is that no neurosurgeon locally will touch him. Dr. Bolognese is out of the country till the first of the month now. So we will have to get on this because Miracle flights needs 4 weeks to schedule a flight. I have been told that they can do it sooner if needed. The thing is that we planned the next time we go to NY Dr. B. was going to do the invasive cervical traction on him to test for the degree of his cranio cervical instability. It seems to be better staying there for a period of time to get most of what we need done and then go from there.
I also have it worked out with Judy that the next time Nate has surgery we are going to get in the HBOT chamber a few times as soon as we can to help with his healing process. We may even do a few deep dives especially if they do anything with his bones. Since there is no data or study that has been done on HBOT and EDS (Ehlers Danlos Disorder/Hereditary disorder of the connective tissue). But my thinking is that if the surgery wound can heal faster then that may reduce or even eliminate the adhesions that he seems to form so fast.
All of the HBOT treatments we are doing with Nate is only based on our educated theory of how the body and brain works and how HBOT works as well. This is some what new frontier that we are in hope's of paving the path for others.
Today (Sunday) Nate has felt OK. Not a GREAT but OK. We will take OK any day. But his pain can spike at any time and last for a few min to hours to days and weeks. There is still so much that is a mystery.
Medical Conference update. Things are rolling along with that. Our plan is September 09. We hope to start on raising funds so we can hopefully be able to give the CEU's to Medical personnel for free. That is our goal. Next week Nate has his spect scan. I can not wait to see what that says. We plan on working up a presentation using Nathan's treatment plan the good and bad of it all as another way to aid in treatment/healing process of Chiari/EDS/PTC .
I am not sure if I have blogged any of this before so if I have I am sorry to repeat myself. During the times I have been around the facility of Sara's Garden I have had the profound pleasure of witnessing Miracles. Not just some of the things that we have witnessed with Nate but other children and adults. I wish I could interview every one of their clients and put together a "book". But what I am going to do is get a list of past and present clients and send them a request for them to write their story and also write a letter requesting that Sara's Garden be awarded a Extreme Makeover Home Edition. Their Dream of a Jackson house for the out of towner's needs to be addressed. They are leasing a parsonage house right now. It is a small 2 bedroom house that clients stay for free but it is not handicapped accessible so not all out of town clients are able to utilize. The works are already started for searching for a walk in chamber. Mark works for a mechanical contractor and right now have a verbal that they will provide the labor to install it. There is a large waiting list and they all can not be accommodated due to the limited spaces. Sara's Garden is one of the only non-profit HBOT center. The fees are minimal. Most of all their nurses and paramedics are working there for free to help keep the costs down. I feel something in my heart when I am there. It is hard to explain...but it is all uplifting.
Thanks for reading about our journey. My hope is that some day this information will be able to help others.
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