We ended up taking a 10 day break because of the ear and the new tubes. We resumed and were able to get in another 66 1/2 hours to make a total of 90. (Our goal!)
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!
If it weren't for bad luck...
At least that's the way it feels...
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. :)
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. :)
Believe it or Not...
We are finally going to start HBOT!! We have been talking about it for so long now and trying to figure out what the best way to go would be and we finally made a decision. First, the option of doing it at the Wound Center was ruled out - they couldn't do it because it is considered Off-Label use. That left renting or buying and we decided to rent for the month to see if he is a responder and go from there. It was a tough decision because the $1600 used to rent it for the month is a good amount towards the purchase if it turns out that we should buy one, but we couldn't wait any longer to find out if this therapy is right for him.
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.
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.
Chiropractic and Chelation
We started seeing a Pediatric Chiropractor shortly after my last post, Dylan just had his 20th adjustment today. He has been going three times a week to correct subluxations. The good news is that he likes going and doesn't mind getting the adjustments, he initially cried when his neck needed adjusting but he has gotten over that and simply seems to enjoy it. The bad news is that we are not seeing any progress from the adjustments at all. In fact, his balance is actually worse right now. Last week after his 17th adjustment he could only take 2 steps before falling and he was dragging his left leg, not bending his knee when he walked... Scary!! So again we are left unsure and have to decide whether or not to continue from here or to give it a break and see how he does. (Leaning toward giving it a break since insurance only covered 12 visits and we can't go on wasting $ that could be spent on HBOT if it isn't going to be beneficial) Sad though! I really felt that this was going to help his balance.
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.
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.
Dylan turned Four! : (
Dylan turned four on April 8th. I can't believe it! Where did all the time go??
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 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.
Floortime Workshop
Last week my mom and me took Dylan to Barrie Galvin's Center for an evaluation to start therapy. They use the Floortime approach for OT and Speech. Keith and I decided to sign up for the 3 day workshop. We went to our first session last Wednesday evening and have our second tomorrow. I have the book Engaging Autism by Stanley Greenspan so I had the basic idea of what Floortime was, which is basically communicating with your child through their natural interests and learning to build on that. It is a good concept and seemingly easy, in fact we found that we do a lot of it naturally in our house so we have a good foundation, but building on activities and keeping the child's interest while doing so can be surprisingly difficult. You have to be very persistent and very creative. All in all I do like this approach because it just makes sense that if you work with someone's interests, they will be responsive.
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 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.
Chelation - Finally!
We finally got to start chelating on Tuesday. They are EDTA Suppositories, so just before bed I gave one to him. He handled it fine and so far, so good. Nothing bad to report. The schedule we are starting with is One (1) 125mg suppository every 14 days, I hope that if he does well we will be moving that up to at least 1 a week. Most kids are doing a higher dose and do them every other day, or twice a week. Not sure why he has started Dylan out so slowly but I guess it's best to be cautious.
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 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.
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