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.