Nathan's HBOT one day at a time.

Nathans local Neurologist Fiasco

2009-04-03T23:26:00.000-07:00

Nathan had an appt with a local Neurologist due to the seizure he had a few weeks ago. To recap the seizure, Nathan was having a good day and had a friend stay overnight with him. About 3am Nate came into our bedroom saying he woke up and bit his tong and it hurt real badly and it was bleeding. So I got up and looked at it and he had bit right through his tong. He also had some blood running out of his ear. I did not freak out. I got him cleaned up and gave him some pain med and ice chips. In the morning I asked him what happened and all since he did not want to go back to sleep. He said all he remembers is he was sleeping and he woke up with his tong bleeding and hurting real bad. So when you have a child that has had several brain surgeries you know that they can at any time have a seizure. So adding 2+2, his Pediatrician and I, agreed that he did have a seizure. He set up EEG, CT and blood work and a consult with a Neurologist.
Last weekend we got a couple of papers in the mail to fill out before his appt. I did that and also included a copy of his nero-psych eval. that we got last week. Sunday Nate had a real bad pain day. Saturday evening was not all that good either. He asked for pain meds both days and evenings. Sunday he did not get to sleep till 4am. His appt was at 1 so we had to leave before noon to get there in time. He did not want to go and still was feeling real bad. When he feels like this everyone around him knows he does not feel good. But we got him in the car to go. We got into the exam room and his NP came in asking all of the questions that I had filled out. This always annoys Nathan. He does not understand why everyone has to know all of his information like if he wets the bed or not. So Nate was very verbal letting her know that he thought it was not any of her business. I just told her that I have all of her answers written down on the papers they sent me to fill out and anything else was in the extra information I provided for them. She did not like that but Hellooooo it would make things much easier for her and everyone involved. So by the time the Neurologist came in he had heard from his NP that Nate was very difficult and rude. Yes he was rude and I do not like that but he is a child in pain and for me to try to talk and explain to him that it is wrong was not going to get us any place because when he is in that kind of pain he does not know and does not have that much control over what he does. Thus one reason why we were there seeking help. UGGH!
The Neurologist first thing said that the tests showed that Nate did not have a seizure. So Nathan gets even more upset and announces to the Doc ?What are you saying that I am lying that I had a seizure, do you think that I bit my tong right through for the fun of it and where did the blood in my ear come from?? The Doc said he did not know. Then he asked if Nathan was having pain and where was it. Nathan said his head and all of his body hurt today. He asked where does his head hurt. Nathan said the whole thing. So of course that was not satisfactory to him at all. So he checked Nathan?s reflexes. Then he started checking if Nathan felt the same scratch on each side the same. Nathan was pretty consistent that his left side he felt more than his right. So Nathan was so overwhelmed with everything he got off of the table and started walking out of the room. This made the Doc mad so he began to tell Nathan that he did not have to be his Doctor and he could find another one for all he cared and he was not going to have him come into his office and take up his time if Nathan did not want to participate. He wrote a Rx for topamax and said come back in 2 months and left the room.
In between all of this he had Dr. Narayanans info from when we saw her and she had on the file that Nathan was autistic and that ?Mom? was in denial. He asked why did I not list the lumbar shunt. I told him that Nate did not have a lumbar shunt he had a VP shunt. He then asked why we went to another Doc instead of Dr. N. He also said that Nathan needed to see an ophthalmologist. I told him that there were no neuro ophthalmologists in Toledo area that we had to go to Columbus or Cleveland and he said any ophthalmologist can do the same thing. So I had to explain to him that the one Dr. Mehalis plays a neuro op but he does not have the credentials of one. And I told him that he missed Nathans high pressures when we ended up having them checked by a LP and they read in the mid 40?s even after taping. So I would stay with a real neuro op thank you.
Well he and Dr. N are from the same hospital and same country. And he did not like it when I told him that if I would have let Dr. N put in the triple chamber Lumbar shunt in my son that it would have pulled his whole cerebellum out of his skull and killed him. That is when I think I decided that we are done with local Doc?s. But? we needed the Rx.
Soooo looks like I have written books today. I am very frustrated and I am sure that I am not the only one that has been through this sort of thing. We will get past this and get on with seeking relief from pain and confusion.

Daughter Jessica's appt. with a local Geneticist

2009-04-03T22:58:00.000-07:00

I know that this blog is for Nathan's journey. But Jessica our middle child suffers from joint pain, joint dislocations, stomach issues, extreme exhaustion and fatigue, horrible menstrual issues, skin irritations to any and everything and head aches that last for days. During our battles with Nathan's health Jessica has been developing some of these symptoms listed and some of them have been going on for years.
Since my husband got laid off of work at Christmas time we no longer have private insurance. Jessica is 18 years old and graduating from High School next month and has been accepted to Ohio State. We need to get her proper diagnosis so we have a medical plan of action in place for when she is away at college. But we now have medicaid for the children and are forced to go see a local Geneticist for her diagnosis. This is what happened in the appointment. I am posting it here for documentation purposes.

It has been a while since our appointment with the local Geneticist. But for me when I experience things that are not right I personally need a while to sort out my thoughts before I put them down on paper. I try to teach my kids to think twice and type once. So I have to follow the same. As you can see that I am already confused and not happy with the knowledge that this Geneticist has in regards to connective tissue disorders as a whole.
When we had an appt last summer to go to Baltimore to see Dr. Francamano she sent us about an inches worth of paperwork to fill out. This Doc sent us 3 papers that is all. I filled them out and actually added more to them. We get there and the NP comes in and we verbally answer all of the family questions that was asked in the paper work and that was ok. Then the Doc comes in and after the first 5 minutes I knew that he knew next to nothing about EDS. He looked at her knees and lightly grabbed her knee cap and wiggled it around and then her elbows and he pulled her skin out from her elbows and said "no she does not have EDS or any other connective tissue disorder". He starts to walk out of the office and I am probably looking like I was ready to say WTF? So he stopped and told his nurse that she can order a CBC and a CMP. So me being me said “Well I can get that order from a Proctologist! And this is what we came here for?” He then stopped and said that she can add a caratine order to that. I just said whatever to myself and we left. As soon as we got out of the door Jessica started crying. She said if that is not what she has then what? I told her that we will get her to Dr. Francamano no matter what we have to do to get this figured out. She said that he made her feel like she was faking it. “As if I have not heard and or thought that myself before”
Soooooo we get last week in the mail his report saying pretty much what I said above. The blood all came back with in the normal ranges. Where do we go from here? She graduates in May so we will get something set up for this summer. She still has her joint pain and the fatigue and the stomach issues. We will continue to have her take the vitamins and supplements. Life will go on. I do know one thing …. Like everything else … we have to stop trying the local Docs and go to the professionals. But check their credentials first. They may claim they are a Doctor specializing in something and or they play one on TV but do they have the credentials to back them up?????
This whole situation has made me look further into the clinical protocol of obtaining a EDS diagnosis. Several things he did not do.
1. He did not do a Beighton scale on her
2. He did not measure her arm span
3. He did not look her body over to look at her scaring issues
4. He ran a serum caratin (serum caratin tests does not show anything definitive in a diagnosis}
5. He needed to order a tissue biopsy
6. He did not take into consideration that she has extensive knee damage
7. He did not look at her blood testing that she has already had done looking at her ESR? that clearly shows she is experiencing a inflammation problem.
Sooooo. Now I am wondering if I should not turn him into our insurance for investigation. Oh yes and another thing is that he pulled her skin out from her neck and said that it is not elastic enough for classical Ehlers Danlos. I asked him what about the other categories of EDS. He said that there are only 3. Well then I explained to him that there was more than 3 and that in recent research they have found yet another type of classification so I think that brings it to ... I think now...8 categories. Well he did not seem to like the fact that I have done my research on this. UUgggh Arrogant MD's drive me nuts!!!!!

Nathans Neuro-Psych Evaluation 3/23/09

2009-03-23T19:08:00.000-07:00

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.

Copy of letter to Dr F

2009-02-17T16:48:00.000-08:00

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

88 and counting

2009-02-17T16:02:00.000-08:00

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.

#81 and #82 HBOT Done 2/9/09

2009-02-10T05:05:00.000-08:00

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.

HBOT

2009-02-03T06:14:00.000-08:00

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

Another 40 HBOT Started

2008-11-10T18:37:00.000-08:00

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.

Weekend Update

2008-08-24T20:22:00.000-07:00

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.

And a new day begins

2008-08-22T13:07:00.000-07:00

First off I want to say that today has not been all that bad. About 10am this morning Nathan took .5 mg liquid oxy. I first gave him 50mg of Diphenhydramine and waited for 30 min then I gave him the liquid. This usually will help with nausea caused from the medicine. If he has nausea from high ICP there really is nothing that helps with that other than knocking him out.

I have to thank God for the fact that we have made some ground as to him telling us what strength of med he needs. He is very serious about this. Also it is again another way he feels that he is in control of his life and health more importantly.

I got some email last night asking me if I am against the HBOT n ow and I definately want to say it loud and clear I FEEL AND I BELIEVE THAT HBOT WORKS!!!!! There is nothing set in stone but this has been the only treatment that Nathan has had the most relief from.

That being said. I have been doing a lot of reading and going through my head on what else I have read. When there is brain compression due to high ICP his pituitary is flattened. I am still in the belief that he has some sort of cycling cortisol issues. I really would love to give him a little more time away from HBOT then have his blood ran for all of the hormone levels and not just the thyroid and testosterone. His sleep patterns are all messed u p. he is not getting enough of something or maybe too much of something. I am not a chemist but from what I have read this is how I am thinking. Charnel a friend of mine is a chemist. She is in NY right now recovering from fusion surgery at the moment. I will have to get with her once her brain is working again. She has been a great help with some of these issues.

It is Friday and there is a Football game tonight at home. Mark does the chains on the field so I need to get dinner done real soon. His mother was taken to the hospital today. Her leukemia is going full boar right now. She is not doing so well. We have a wedding to go to tomorrow and I am wishing to be able to take Nate with us.

I will be back later.

Scientific Proof of Tethered Cord!

2008-08-21T12:10:00.001-07:00

I forgot to put this in the entry earlier.

I will get all of the details righted but have to put this down so I won't forget what I do know. J's daughter had surgery at TCI and they had their tickets for home. Some how they met up with the man that invented the MRI (for the life of me right now I can not come up with his name but I am in a h urry right now) But he said lets do a new MRI for some reason or other. One of the radiologists said that there is no scientific proof of tethered cord. Well some how he figured out how to see it on a MRI. It was there! I guess they are all excited that they found the proof that it is there now. So if my insurance company wont pay for what they deemed as a experimental surgery well..... hellooo there is now proof that they can see. Ok I will get the right names in here and so on but wanted to write this down before I forgot. I forget things a lot lately.

Yuck!

2008-08-21T11:33:00.000-07:00

Last Friday was Nathan's last treatment. He felt good and both Mark and I were on cloud 9 thinking that he is going to be ok. Well by Tuesday he started throwing up again. Head pain and his behaviors are horrible. Tuesday afternoon he was so angry and nasty and he would not take any med at all from me... Then he finally decided to take some of his liquid pain med and in about 15 min he was crying. He came into my bedroom crying and apologizing at how he has been acting. I know that this is not my Nathan. He would not want to be mean to any one if he could control it. I asked him what he is feeling and he said that he feels like his brain is going to burst and the pain was so bad that he feels out of control. I went in his room and we turned on the TV for a while. Then he started throwing up again grrrrrr. It seems this week that it is a never ending cycle he is going through. Dr. Bolognese is out of town/country and so is Dr. Milhorat. Milhorat can't operate with out Dr. B and vice versa. I sent email to TCI and am waiting for the PA to call or email me back. He is not sleeping. Tuesday evening I was up with him all night long till about 4am. He then got about 2 hours of sleep. Yesterday he laid down at about 7pm and slept till about 5am. But he is saying again that he did not sleep at all. His brain is not shutting down. He was sleeping when he was on the treatments. I am in a bit of confusion right now. Is his brain just going back to auto-pilot on what it knows best? Or does the HBOT only work short term at first? I do not have the answers. If you know me you will know that I HAVE to k now the answers to things or it will drive me nuts. I guess I never grew out of the (are we there yet stage) LOL 44 years old and I still want to know why about everything. It is so hard as a parent to hold your child and have him cry and apologize to how he has been treating you and begging you to take him back to treatments. I have to call Sara's Garden to see when he can start again.

Last weekend I was sooo proud and happy of Nate. His reply to people asking him h ow he is doing he was responding saying he has felt worse. That is a big change from he has felt better. Kind of reversing the glass half empty theory.

Yesterday he did not watch TV or play any games. He did not eat much because every time he would and he would be walking around the house he was getting dizzy and throws up. His floaties are back in his right eye now too. I really think it is all to do with swelling in the tissues.

So it is a wait and see game. We are not sending him to the local public school. That is for sure. I called for information about enrolling him into the online school.

We got notified from SSI yesterday that I needed to fill out paper work so he can be determined in 15 days. Everyone says that they will turn him down the first try. We shall see on that also.

Right now that is about it for now. I will be back with more as time permits. I have received a lot of emails and I will get back to you as soon as I can.

2008-08-10T11:15:00.000-07:00

Tomorrow starts Nate's last week of HBOT for this session. I can't tell you the difference he has made during this last few weeks.

For starters. His belly is totally healed! Amen! I will post a updated pic of it once I find my camera cord. I took the pic on the 14th HBOT. Now mind you before we started he was still bleeding out of that site.

He has been way calmer than before.

He has asked for help doing his multiplication facts. So for 2 hours a day he is going through flash cards in math. If you know Nate you will totally say "that is not Nathan no way no how to ask to do math"! But it IS Nate now.

His social skills are so improved. I feel that is something to do with the level of pain. He still has a way to go to be on a level playing field with everyone else but I see improvement.

His bad behaviors have lessened. Again I feel that it has to do with his level of pain and swelling in the brain. Head aches have not gone away but seem to not be all the time now.

He use to have floaters in both eyes all the time. He has said that his right eye is clear sometimes of floaters.

His left ear continues to be the same. The canal is red and inflamed but the ear drum is very clear. But for some reason his left side of his head is where he seems to have some severe head aches.

I will be back later with more info.

2008-07-30T19:19:00.000-07:00

For today I will say that Nate did ok. He is funny because he keeps saying that why is he nice because that is not who he is. LOL

He told a new boy that if he did good in the chamber that he would bring a dinosaur movie for him maybe 2 if he was real good. The first thing he did when we got home was find the movies. He also is taking one of his veggie tales ones for his sister to watch.

He is such a good kid. I just have to get him to know it.

2008-07-29T10:19:00.000-07:00

2008-07-29T10:06:00.000-07:00

Day 4 treatment 6

2008-07-28T11:53:00.000-07:00

I am starting this a little late. I wanted to start this the very first day of treatment. As this moment Nathan has had 6 treatments. He started 7/23/08. We are going to Sara's Garden HBOT (Hyper-baric Oxygen Treatment) He will go for a total of 40 treatments 2 times a day depending on scheduling. Today we went to Bryan Hospital for a spec scan of Nathans brain. We will do another one after the treatments are done. This will show to what extent the HBOT's are working on his brain.

Nathan's past 2 years have been filled with hospitals poking and prodding and one surgery after another. He to date has had 2-crainio-cervical decompressions with duraplasty, Spinal tight filuim release, 3 temporary drain trials, VP shunt and a revision and repair of the tethered cord CSF leak. The letters that go behind Nathans name are as follows.

ACM1=Arnold Chiari Malformation 1
PTC=Psudo Tumor Cerebri
TCS=Tethered Cord Syndrome
EDS=Ehlers Danlos Syndrome
MCS=Multiple Chemical Sensitivities

He has been a unsocial person most of his life. He has not had many friends. But he has lived his whole life in pain. He struggles getting along with his teachers and other kids his age.

Since last Wednesday these are some of the things that I have found changed or just a smidgen changed. He goes in the chamber with 2 other boys and 2 nurses/Mothers. The other 2 boys are unable to talk and or walk on their own. Nathan makes sure he shakes the hands of the boys good morning and he does it again when he leaves for the day. The old Nathan would not even pay attention to them. His compassion is amazing to me. He helps the adults with the boys also. He still struggles with self positive issues.

I am absolutely amazed at strength Nate has to keep going. Today was the first day ever that he talked about what he wants to do when he grows up. He wants to design video games for other kids like him that can't do much else but play games.

Last night and wellmost of yesterday Nate felt sick. He was throwing up and dizzy and his nasty attitude was back. But... this morning he got up and dressed to go with out any problems.

I just want him to understand that this treatments will and can work. This is the first time in 2 years that I actually have hope that he will recover and be able to live as normal of a life as he can.