Pots Is Now The Seconday Diagnosis

[looneymom]

Thanks Chaos

[looneymom]

Tyler's headache was little bit better yesterday. He also had his methyl B-12 shot which probably helped also. He did a literature lesson for school and I give him credit for PE. Just getting out of bed and being functional enough to use the wheel chair should count for that. I have been letting him sleep or lay in bed until 9:30 am. He goes to bed at 10:00pm every night. His doctor and I talked about this at the hospital. He said as long as we keep bedtime at the same time, his body should get back into a normal sleep cycle. He should not stay in bed past 12 hours but if he needs to take short cat naps in the recliner, thats ok too. However, Tyler does not seem to need these, so I'm hoping he is getting more sleep at night. He has not had anymore reactions or fever. I'm hoping we are past all that but I was told it could happen up to a week after the treatment.

[looneymom]

Tyler started feeling better yesterday afternoon. He finally felt like eating. His pain levels and headache have finally went down to the level before having the IVIG treatment. Earlier this week he told me that he did not want to go through it again. I'm really hoping he will notice a little more improvement in his symptoms before the next treatment. Telling your kid that it may take 3 more treatments before you seeing any major improvement is a bummer.

I have been doing some more research on antixoidents in the diet. Some of the herbal supplements that have been recommended to help with inflammation are very high in antixoidents. So I'm looking at buying a juicer and juicing fruits that are low in sulfer but high in antixoidents. I'm wondering if I can get his diet high enough that it might decrease the inflammation and boost his immune system some more.

I started Tyler on a low dosage supplement of methyl B-12 yesterday. It seems to be agreeing with his system and has not caused problems with his vocal tic. However, the more I think about this, I'm wondering if this is what helped Tyler start feeling a little better. If all goes well, I will try to add another tablet in after lunch next week. I was hoping to start the P5P with Tyler this week, but the company sent the wrong supplement. So instead I started with the methyl B-12 supplement.

[looneymom]

Tyler had his methyl-B12 shot yesterday but felt worse after taking a shower and washing hair. This has always made his pain levels worse. I really hope if we can get his methylation cycle working that maybe his body will start responding to some over the counter medications.

Tyler was able to get in a few more hours of school today but he did not sleep very well last night. His sulfate levels were also up. I will work a little harder on his diet to see if I can avoid giving him molybdenum. I have the liquid supplement on hand but I will check with his doctor first before I give it to him. His mulitvitamin has some in it but probably not enough to help. His tremors and shaking have also been much worse today, Molybdenum will lower sulfate levels.

I have started focusing more on Tyler's 23 and Me test results. Today, I added another methyl-B12 tablet after lunch. So Tyler has had 1 gram of methyl-B12 today. It is not affecting his vocal tic. I just hope it will help with energy and fatigue levels. When Tyler gets his B-12 shot, he is not getting the B-12 methyl supplements.

I have not recieved the P5P yet. However, I am ready to increase this level to see if I can get Tyler's tremors and shaking to stop totally. The P5P will also help decrease the glutamate levels in the brain. Too much of this stuff will cause confusion with the nerve and neurotransmitter signals.

So would a gluten free diet help Tyler? Possibly but for Tyler it would also throw off other nutrients that Tyler's body needs. He is not gluten sensitive and does not have the celiac gene or food allergies. The benifit is that is would give his immune system a break but I have cut back on his gluten. Just not ready to jump on board with a gluten free diet yet.

[issie]

You have to not use too much b12 either. His body might not uptake it propperly and he could get sicker because it's not going into the cells properly. Some are using a teeny tiny bit of lithium (homeopathic amount). It will help the cells uptake and use b12.

Many have found gluten free to be a huge benefit even without a true allergy.

I only use the moly two times a week and my b12 4 times a week. Being vegan, its important to supplement b12 and this seems to be enough for me.

Issie

[badhbt]

Hi looneymon I agree with Issie on the gluten free thing. I can't think of any important nutrients that gluten provides, it is mainly carbohydrates, which you can be found in better sources.

Are you using an outside website to read the 23 and me results?

[looneymom]

I am using the online book by Dr. Amy Yasko and the heartfixer document to understand Tyler's 23 and me results. They were posted in an earlier post.

[looneymom]

Tyler has had a better day. I did not give him the another methyl-B12 supplement after lunch today. So maybe he only needs it after breakfast. However, I sure wish I had the P5P (the active form of B-6). His tremors and shaking are so much less in the morning time. They pick up more after lunch. I suspect his body is making alpha-Ketoglutartae.

I was going through more of his 23 and ME testing. Tyler does have 4 CBS mutations that are hetrozygous, and 1 BHMT mutation that is hetrozygous. Having the hetrozygous BHMT may have also affected Tyler's BH4 production. With this combination, Tyler could have a problem with ammonia or sulfate levels. His last testing indicated ammonia levels were in range and sulfate levels were above 1200mgs. This combination can also cause the body to make an excess of alpha-ketoglutarate, which will convert to glutamate. According to neurotransmitter testing, Tyler does have high glutamate and low GABA levels. Tyler takes GABA at night but the only thing that I can tell is that it helps with moods but he is still having a hard time falling asleep at night. To help Tyler with sleep, I want to give him P5P because it will convert excess glutamate to GABA. I suspect Tyler's shaking and tremors is due to high Glutamate levels in the brain.

Tyler also has several Hetrozygous MTHFR gene mutations and a MTR which is -/-. However, Tyler has a MTRR A66G that is Homozygous. With this combination Tyler does need methyl folate, which he is already on. The homozygous MTRR indicates a need for SAMe but may not be needed if I can get his methyl-B12 and methyl folate to start working in his body, then his body will start producing SAMe by itself naturally.

The next gene that I looked at was the COMT. All three of these showed up -/-. Which would indicate that Tyler should be able to break down dopamine rapidly but will also use up all his methly B doners very quickly. In return this can cause low dopamine levels and poor tolerance to toxins and microbes. He definately needs methyl B doners.

Tyler has a hetrozygous VDR TAq gene mutation which means he may have lower vitamin D levels, make less dopamine, and may need a dopamine precursor substances and methly donors. This makes sense because I have had to keep Tyler on 5000 of D3. His last bood test showed he was at 42 when he had been at 55 one year ago.

Another homozygous gene that Tyer has is the MAO A R297R. This gene affects serotonin metabolism. Now I understand the reason why Tyler has low serotonin.

Last but not least I also ran Tyler's raw data through the LiveWellO site and learned that he had several hetrozygous gene mutations for NOS. These genes are responsible for nitric oxide synthanse. So my question to our cardiologist would be " Is POTS a genetic condition?" I have sent sent him all of Tyler's 23 and me test results. I have not heard back from him and he is probably consulting with some other doctors. I'll him figure out what to do with these mutations, maybe he will have the magic pill to turn this all around for Tyler.

There are more gene mutations that showed up on the LiveWellO report. The genetic genie is a good report to get anyone started but the LiveWellO does cost $20 but gives much more information on gene mutations. I have started going through this report and will post more information later on. I have no regrets doing test with Tyler and feel like it will provide his doctors more information on his medical condition.

[looneymom]

Hello everyone

Tyler is holding his own. He is still on 30mg of midodrine 3 times a day and I am still not having to giving any salt tablets. I'll take that improvement. His fatigue is a little less. Tyler has also been able to put in 4 hours of school a day instead of 2 hours. His school will be out on 2 weeks and then it's back to the hospital for another IVIG trestment. Tyler has decided that he wants to go gluten free on May 27th and stick with it for at least a month before he has to go back and do another IVIG treatment. If this helps, I hope the hospital can help us out with a gluten free diet during treatment time.

Tyler is still having trouble getting to sleep at night so I have tried a new combination of supplements with him. The first night he took them, he could tell a difference the next morning. I was able to tell a difference because he hardly had any tremors yesterday. So it will be interesting to see what today is like.

I started going through more of Tyler's LiveWellO report on the 23 and Me results. I have not emailed this one to his cardiologist yet. However, I will be emailing it this week because of some things that I have discovered.

This report gives 13 different catagories and the gene mutations that affect each. The catagories in this report include the following: allergy, clotting factors, detox, gluten, intolerance,IGA, other immune factors, sulfotransferase, thyroid, IGE, IGG, Methylation, Mitochondrial, and Tongue Tie.

The Clotting facctor's catagory showed Tyler's CEPT gene is homozygous. This gene indicates a risk of coronary heart disease. This is not a surprise because this runs in both sides of the family. Tyler was hetrozygous for the GP6 gene which helps regulate glutathione. This sounds reasonable since he is having so much trouble with too much glutamate.

The next catagory mentioned in this report was Detox. Tyler's detox genes are -/- except for one homozygous. His CYP2D6 is homozygous which has been associated with cancer susceptibility. Kinda of scary information but cancer runs on both sides of the family. Which also means my husband and I both have this gene because we each gave Tyler a gene. However, neither one of us has had to deal with cancer yet but our parents have had to deal with cancer.

Another catagory on this report is Gluten Intolerance. All of Tyler's are -/- except one. Tyler's SULTlAl is homozygous and it affects the enzymatic activity. So if Tyler has a gluten problem this is most likely the cause. I am going to do some more research to see what I can dig up on this gene. If anyone knows something about this gene, please share. All of Tyler's test for gluten sensitivity have come back negative, so I'm not sure how this gene affects gluten intolerance. I will keep researching to see if I can find some more information. BTW the LiveWellO report is $20 but has provided so much more information. Hope everyone is having a good day and I will post more on Tyler's results as I find the information.