He is definitely stronger! He is now able to pull himself to a standing position without any help, prior to this he would crawl over to you or something to pull up on and he can now stand up from the middle of the room!! He has done this in front of us at least 20 times now - but doesn't fully realize that he can do it every time yet. It is very exciting!! He is also getting off of furniture much easier, walking much better, faster (almost running!)
Originally, the chamber was to be picked up on Labor Day weekend, but because he has done so well with it the office has given us another couple weeks. This has allowed us to take another 10 day break (that ends today) and get in another 30 hours before the chamber is returned so if all goes well we will have a total of 120 hours in by the 25th. After the 30 hours, we will take a month long break to see what progress is made. The oxygen continues to heal during the break periods and that is when a lot of people see most of their gains.
Hopefully October will bring some good things!
We got a great start with the mHBOT and were quickly working our way up in hours, until Monday, when I noticed a discharge in Dylan's right ear that looked like dried up blood... so I frantically posted questions on the HBOT message boards and went crazy trying to get an appointment with an ENT - almost impossible to do with a days notice, even if you are willing to drive and see any ENT possible - we ended up with an appointment for ours for Friday and since I couldn't wait I finally was able to find someone to see him Tuesday, I had to drive over half an hour but it was worth it to know if the eardrum was ruptured and to figure out what was going on.
It turned out that he had an infection and what I saw was a brown wax and pus, but not blood. Thank GOD! The doctor could not see if the tube was still in and didn't want to suction the ear since Dylan was already upset at him just taking a peek. The left ear had wax that he was able to remove and it was clear BUT the tube was loose and just resting in the canal... Antiobiotic eardrops and Amoxicillan were prescribed.
Dylan never presented with a fever or showed any signs of ear pain so we had no idea that this was going on AND to top it off this was his first Fullblown Ear Infection ever, figures - what better timing? Right in the midst of our HBOT rental that costs $1600 a month...
Luckily we kept our appointment for Friday with our ENT (today) and Dylan's ear no longer shows signs of infection, but does still have wax blocking the view of the tube (or no tube), his left ear was checked again and is fine, but the hole is already completely closed so a new set of tubes is definitely needed. We scheduled and he will be seen next Thursday (Just Great! Another week wasted!) for the new tubes. He should be able to resume HBOT treatment next Saturday as long as all goes well - so please pray that all will go well. He got these tubes last December and they did not even last 3/4 of a year - CRAZY!!
The good part about the new tubes is that Dylan will start with ears that are clear of wax and the tubes will help him to pressurize so we should not have any problems in the chamber. If only we had known to check out his ears PRIOR to the rental! What a lesson this has been.
With the 23 1/2 hours that we did get in we have noticed more babbling and some attempts at new sounds, he initiated "Ring Around the Rosy" and fell appropriately without being tugged or prompted, and then afterwards he said: "Ring" VERY EXCITING!!
Also, his core strength is better, meaning his stomach area, for instance when assisting him by holding his hands or his waist to get up the stairs, before, he was very wobbly and you could feel the lack of strength, now he is sturdier and you can feel it. We are very excited with what we are seeing thus far and can not wait to continue. I truly believe that HBOT will be great for him. If only his ears will cooperate. :)
Dylan and I took two test dives this week. On Tuesday we went in the chamber and pressurized, stayed in for about 10-15 minutes and then depressurized. He did great! Wednesday we stayed in for an hour and he did great again. He likes it in there and his ears (knock on wood) seemed to be fine. I chewed gum and popped mine A LOT! but I can handle it if it means that my baby boy can get better.
We receive the chamber Sunday evening and plan on doing our first session, then we will get up early everyday and do an hour-and-a-half in the morning and again before bed for a total of 3 hours per day, with a goal of 90-100 hours during the rental period, which we are lucky enough to have for an additional 2 weeks, so we will have the chamber for a total of 6 weeks.
LDN and Chelation are still going fine. Nothing good or bad to report. I hope to have some good things to report about HBOT soon, everybody that prays - PRAY! Everybody else - send good thoughts his way.
He is continuing to chelate with the EDTA suppositories, twice a week without any issues. Nothing to report good or bad at this point.
We have also started transdermal LDN (Low Dose Naltrexone) to boost his immune system. We started with 1/5 of the normal dose and worked our way up to the full 3mg. It is a cream that you can put on the feet and is best when used between 9PM and midnight, with 11PM being the optimal time. We had one night of disturbed sleep (very common) and have noticed some aggression but other than that he seems to be tolerating it fine. It has now been 2 weeks - the first 12 days were spent working up to the 3mg and the past two were full dose so it is still pretty early. LDN can help with socialization and speech as it is healing the immune system. Some people note that they lose several food allergies and intolerances. Hopefully, this will be something that Dylan responds to. So far as one of our DAN's puts it "He is a hard nut to crack".
HBOT is still in the future. Hopefully the near future! We are waiting for finalized pricing for 40 hours in a hard chamber. Mainly because the hard chamber is supposed to help with Muscle Tone and Mito issues faster than the mild chambers. The mild chambers do help with these issues as well, it just takes longer to get the same results. If he is a responder we will have to figure out where to go from there as more sessions will be necessary. If we can't do the hard chamber we will get on the list to do the mild chamber and plan to try doing 90 hours in the month with a month break to see what results we get. Again, if he is a responder more sessions will be beneficial and we will have to decide about renting vs. buying.
We finished up our Floortime class. It was informative and I'm glad we were both able to go. Dylan's new OT had a couple weeks off for Easter so today we went for his second session with her, so far it is going okay. We are doing Sensory Brushing and Compression a few times a day, sometimes he enjoys it, other times he is just not into it.
He had his first Dental Cleaning and Exam yesterday and it started off better than we imagined but when she got to the fluoride part, she had to suction him and he flipped out! That was it for him. He started gagging and choking up mucous, he turned so red and gagged so hard that he broke blood vessels around his eye area. Poor little guy!! He does not like his mouth messed with, but with two cleft surgeries, tonsils and adenoids removed - who can blame him?! The good news is that I am keeping his teeth clean and he has no cavities. He does however have an extra tooth that came in behind another, this happened recently and was actually the reason we took him in. We have been dreading the dentist with him, knowing how he would respond... The tooth will eventually need to be pulled but that of course will just add to his oral issues, so hopefully it can wait until he can better tolerate it.
Chelation- I decided to purchase Detoxamin EDTA suppositories because they are so much cheaper than the compounding pharmacy and seem to be the same thing. They are a higher strength, but the low dose he started on was to see if he tolerated them well and he did fine with them. Also, you don't need an RX for these so that is very nice!! His schedule started at one every 14 days but we are now moving to twice a week. The normal dosing is every other day, but since he is so small (32lbs) we are going to start with less and see what happens.
The homeopathic visit went fine. She muscle tested all of his supplements and made 2 bags, the ones he didn't need right now and the ones he still did, about half of them were cut out. We decided to try it for awhile to see how it went, it has been a little over 3 weeks and he doesn't seem to be lacking anything. She also added in Vaccination Detox, ALJ (a seasonal allergy remedy) and Lymphatic Drainage. He seems to do fine with them. No great gains, but no side effects. She treated him for Wheat, Dairy and Dog Saliva with the laser method. He had to avoid dairy for 2 weeks after and wheat and dog saliva for 3. His 3 weeks were up yesterday. We haven't exposed him to any of it yet though. We'll see what happens!
I tried to schedule his chiropractic appointment today and found that the office is closed on Fridays so I will have to call on Monday and hopefully he can start that next week.
LDN is still on our list of what is coming up and of course HBOT is definitely still in our plans, somehow we will do it, but in the meantime we are hoping that the chiropractic visits will do some good.
We will do our 2nd round of EDTA Chelation tonight and then Dylan goes for bloodwork tomorrow. (Poor guy) HATE HATE HATE the bloodwork. I seriously have to talk to his doctor about limiting it to 3 times a year. It is just too traumatic for him (and us) and the lab is never happy to have to use our special kits. I wish that DAN! doctors could/would have their own labs, it would make a world of difference.
We met some nice people in the Workshop and are seriously considering trying a Chiropractor for Dylan. We have heard so many good things that it is worth a try. One of the girls said her son overcame his low muscle tone issues through it and that would be huge for Dylan. I also have an appt at Natures Sunshine on Thursday for him with a homeopathic doctor. She does some type of lasering for allergy removal. Along with muscle testing and other traditional remedies. I am very interested in the DPT nosode so I hope that she is familiar with it. Friday it is back to Barrie Galvin's for OT. So we are pretty busy right now.
We are still trying to figure out the HBOT issue. Basically the financial part of things, but we know we HAVE TO do it. His muscle tone in my opinion is his biggest weakness, HBOT is proven to help with that and can completely reverse it, which could totally change his life.
We quit using Enhansa because when I tried to move it up to the higher dose, his eyes became very itchy and puffy. When we removed it, they were better. I might try to give it one more time to make sure it was that, but I am guessing it was. Normally, I would be upset about this, but from what I have been reading about LDN (Low Dose Naltrexone) I am kind of anxious to give it a try, so that will be our next new thing.
I am also looking into vaccine clearing with nosodes. Especially for the DPT vaccine as I suspect it played a role in things.
Other than that we are still planning on doing HBOT but need to come up with a plan financially to do it.
We are still using Enhansa, but it is pretty potent, so when we try to move up the dosage to get to the recommended daily dose he becomes lethargic and a bit grouchy. We are very slowly working our way to the full dosage and hope that something good will come from it as it has the potential to do so much. The doctor mentioned that if we do not start seeing results from Enhansa that the next step would be LDN (Low-dose Naltrexone) which is proving to be great for boosting the immune system. Exactly what our little guy needs.
Because I was upset at waiting on chelation I decided to do another treatment that I have been considering - The vitamin A protocol. The protocol is only 2 days so that is easy enough - but it is a high dose so kind of scary. It is also something that you may not see results with for a couple of months, so another waiting game. Basically you give 400,000 iu's of vitamin A for 2 days in a row. It went well, he initially had an increase in babbling and was in a generally happy mood with more energy than usual. He had a little rash on his face on day 3 (day after protocol) but today is day 4 and it is already clearing. Nothing else to report on this yet. We did it for his visual stimming. Visual stims can be a sign of measles in the gut, since doing a scope is the way to test this, most parents just do the protocol without the testing. Some kids have very dramatic results.
I forgot to mention in my last update that in December Dylan had to have another set of ear tubes, so he was put under again. Not good for a little guy that is still struggling to recover from all of his previous surgeries.
We are still looking for good therapists and so far I have had no luck. The speech girl that comes to your house is booked, so he's on a list. Although we liked her, and she does take the scholarship, she failed to mention until our intake appt. that she expects payment and then signs the check she receives over to us when the state pays her, which is quarterly.... If we had that in our budget we wouldn't need the scholarship! Ugh!! Another issue to work through, but we will somehow figure it all out.
The Autism Scholarship - We found out what we needed to do, and we did it. Most of it that is. First we got the diagnosis of Dylan being on the spectrum. Will not go into the details of that just yet, because it was/is a mess. Second we met with the school district to revise his IEP to include the diagnosis. Then we filled out the forms and thought we could send them in to apply, but it turns out that you must first pick your providers - so that is where we currently are in the process.
The Autistique Cream has been going well. We did get an increase in babbling and Dylan has started to say some new things, like "get", "get you", "I did" and "keekee" (for kitty kitty) he continues to say: yea, dada, daddy, hun, ana (for the cat Shana.) Get and Get You come from playing hide and seek or chase which are two of his favorite things to do. He can also catch a ball now and will sometimes play catch, but typically likes to tease, by catching and running in the opposite direction with the ball.
The Glutathione Patches went fine, but we are still unsure of whether or not we feel they work. We are out and are considering ordering again, but are not in a hurry to do so. He did have a low grade fever upon starting them and then an ear discharge the next time, he also was sleepier than usual - this can all be indicative that they are actually working - but since we were also using Argentyn 23 (Colloidal Silver) to kill bacteria, yeast and viruses, it is hard to say which was the culprit. The timing did seem to coincide with the patches, so we are not ruling them out for future use.
To start the New Year out on the right foot we decided that Chelation and HBOT are going to be the top priorities for the year. Dylan had an appointment on January 20th and will be doing bloodwork to make sure that he is ready to chelate. We are going to start with EDTA suppositories, 1 every 14 days. We are also going to start using Enhansa (Curcumin) from Lee Silsby, this is known to boost Glutathione (the reason we are waiting on the patches) and to fight viruses, yeast and bacteria. His DAN! thinks the Autistique Cream is fine to continue and said that depending on the test results we may be able to discontinue some of his other supplements. Which will be nice!
Our biggest issue at this point is where and how to go about HBOT. It is the most expensive treatment we will be doing, at least when you consider it is done in one lump sum.
Our options are as follows:
- DAN! Dr. #1 - In office or Rent at home - Soft Chamber - over $2000 a month
- DAN! Dr. #2 - In office or Rent at home - Soft Chamber - around $1800 a month
- Cleveland Clinic - Hard Chamber - $ waiting for pricing
- Buy a unit - Soft Chamber - between $8000 - $18,000
- Possibly leasing a unit - Soft Chamber - still checking into
We have pretty much eliminated the first DAN! as it is more expensive than DAN! #2, The Clinic has yet to get back to us to let us know what our per session cost would be, and buying a unit is something that we need to fully look into to see about resale value, and other options. Leasing is also an option that we will check into. This is not going to be an easy choice because as all therapies go, you just don't know what response you are going to get and we have to go with our gut on the decision. Typically a minimum of 40 sessions is required to get progress - some families are doing 100's of dives and still seeing results - in those cases owning is the way to go. But by the time you know if you are a responder or not, you could have already sunk thousands into renting and then you don't have the $ to buy. So this is our biggie right now and we have to think fast and hope we make the right choice.
I am sure I'm leaving things out, so I will try to update again SOON and to keep my updates updated. I did get Jenny's book and I really enjoyed it. Very easy to read and informative.