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.

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.

And a new day begins

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!

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!

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.

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.

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.

Day 4 treatment 6

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.