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looneymom

Pots Is Now The Seconday Diagnosis

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Hi Sue,

Yesterday, I discovered that the GNC store carries the 2500mcg (2.5 mg) tablet for methylcobalamin. I knew that I could ordered this online and this is what I plan to do. I have found it in 500mcgs and the 1 mg. Until you know what your body can handle on a daily basis, it's best to start with a very low dosage or it may not absorb. The B- Right only has 100mcg of the methyl B-12. Tyler's CBS gene mutations are all +/- and he does have a high sulfate levels. The high sulfate levels can interfere with absorption. I'm working on his diet but starting with a low amount of methyl B-12 to get his body to absorb and detox better. According to all his test results, Tyler does not have any detox problems. Which is good because with his high viral loads, this is going to be his body's next priority.

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Tyler has been on the B-Right supplement since Saturday and I believe I am seeing a major difference in his tremors and shaking. I have been giving him the B-right after breakfast with his other supplements. If I see the same affects this morning as I have the last 3 days, I have decided to give him this supplement after lunch time. The funny thing about this supplement is that it has less b vitamins than his other B complex. So maybe less is better or the new supplement is a better B- complex supplement for Tyler. Time will tell. I have ordered a new Methyl-B12 supplement that I will try later next week. Hope everyone is having a symptom free day.

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The immunologist from Texas wrote the prescription for this and our cardiologist will contiue on with it.

Tyler did another Sulfate urine test this morning. His levels this morning were over 800mgs but last Saturday they were over 1200mg. All I have done is taken out milk out of his diet. Next I will start looking at taking out high sulfite foods. I need to get his levels below 400 if possible.

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Rachel, you're working SO hard to get Tyler as well as possible, you really are doing an amazing job!!! Big hats off to you!

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Rachel,

It's could be a long shot, but when I was a kid I had strep throat infection that would not go away. In fact I also tested positive while on antibiotics.....At the time the nurse was incredulous. The doc asked if my toothbrush had been changed out....which it hadn't, but doing that along with a shot of antibiotics finally, kicked it.

Best of luck

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I got a call from the cardiologist today and I am a little shaken up. Some more of Tyler's blood work has come back and it indicates that Tyler has heart antibodies that are seen in people that have had Rheumatic Fever. Tyler should not be catching strep when he is on an antibiotic. Our cardiologist is going to put Tyler in the hospital and do an IVIG treatment this weekend. If Tyler does ok with this treatment, he will start receiving monthly infusions at home .Tyler will also be getting a penicillin shot monthly. Eventually, Tyler may have to have PEX to remove the antibodies from the brain. Not sure how this all going to work out, but Tyler has a long road of recovery ahead of him. Our cardiologist does not seem to think the Mycoplasma P is causing all the problems but is going to keep a watchful eye on it. Strep would cause Rheumatic Fever.

I can remember a time when Tyler was about 3 and he ran a high fever. He did have a rash but the doctor never made anything of it. I am going to continue to work on Tyler's diet and the cardiologist is very interested in seeing his 23 and Me test results. Good nutrition can boost the immune system and this is what this mom is going to do to the best of her ability.

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Rachel, I'm so sorry to hear this, but glad your doctor caught it. I know you were trying to avoid the ivig. I will pray it helps Tyler as it has helped me. My infection rate has dropped. The first infusion though can be rough and give a really bad migraine. From my experience it is important to know which brand of ivig your cardio is going to give him. There are ones that have almost no iga in it, which will help keep the reaction down in his case. Also the ones that have no sugar, are easier on the kidneys. See if they will give him iv saline before to boost his blood volume, as ivig can thicken the blood. I now take a baby aspirin to counter that. If he can't get the iv saline, he needs to really hydrate before during and after the infusion for a couple of days.

The most important thing that keeps side effects down is the infusion rate. It should start very slow and slowly tirate up and to be safe not exceed 100 on the first go. I am only up to 150 after being on it 3 years. It takes 5.5 hours to infuse 70grams in me. 70 grams is also the most anyone should ever receive at one time. Children may be limited to an even lower dose. Often the induction dose is given over a couple of days starting with 30-40 grams.

Premeds are very important to keep reaction down. I take benedryl and tylenol and used to be given iv decadron in the beginning. I can no longer take the steriods because I have hyperinsulinemia and they push me towards diabetes and cause weight gain. I also have diazepam (muscle relaxer) and hydromorphone (stronger pain med), to knock down any break through migraines. My head and neck muscles get really tight before the headache. I never taken them at the same time though, and leave at least 4 hours between them.

Hang in there, you are such a good mom! I will be keeping you and tyler in my thoughts and prayers.

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Hi Arizona Girl,

From what I understand Tyler is going to be given a low dosage. Our doctor is on call at the hospital starting this Friday. He wants to put Tyler in on Saturday, start the infusion, and dismiss him on Sunday. Our cardiologist has done this many times for heart transplant patients and has tried to reassure me that he has never had patients with strong reactions. However, he knows that Tyler may be his first to react. He has called in a prescription of Prednisone 50 mg for Tyler. Tyler will start taking it tomorrow. I hope this will help Tyler with his pain and inflammation levels now because his pain levels are way up. I should be hearing some more information later this week. I will look up some old post and do some reading on IVIG.

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Hi LM,

I should also mention the headache or post infusion flu as I call it can happen up to five days post infusion. So keep an eye out for that. I can feel great the day after and then get it on day 3 or 4. Also since he is going on oral pred, keep an eye out for yeast infections from that. Those of us with low immunity can get it easier from both steriods and antibiotics. Diflucan has become my friend. My antigen arm test showed I have no immunity to it, didn't react at all. Do ask them about his kidney function labs as well after the infusion and keep an eye out for those kind of symptoms.

In some ways PEX might also be really good for tyler. It basically is like filtering the bad stuff out of your blood. They use albumin as the replacement blood now. So that is also safer. I was on twice a week for several months. I did improve until I got an infection and then anemia. They also have to surgically implant a catheter, which can also be the source of infection. Taking showers was a pain, cause I had to keep my chest toggles from getting wet.

PEX can also be used in conjuction with ivig, it just has to be spaced till after the ivig leaves the system in two-four weeks. That is so you don't filter out the good immunos they just gave you. That is also why I have to have monthly infusion or those on the subq form have to do it weekly. To be honest I had a good early response of symptoms to PEX. It took much longer for my symptoms to improve once I switched to ivig. PEX is still an option to add back in for me, but I don't think I would need to at this point, as I am stable on the ivig. I can tell when it is wearing off and I do get a real energy boost once past the post infusion flu/headache.

Your a good mom so I know you will read everything you can. I will keep praying that Tyler is one of the patients that just sails through his infusion with zero side effects. That does happen with some patients.

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So glad you are getting answers....keep us posted! Hopefully someone can learn from Tyler's situation.

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At the hospital now with Tyler. His headache is worse. The nurse has been in and lowered his infusion rate. The cardiologist just came in and told him to hang in there. He did order a bunch of premeds to help with headache and pain levels. Tyler is on his lap top but looking pretty sleepy. So maybe he will fall asleep.

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Tyler had an allergic reaction to something this afternoon but all is going better now. Not sure if it was the shot or IVIG that caused the rash. They did blood work before getting started and found out that his white blood count was high. His infussion rate is at 25 and he getting a low dose 40 grams of IVIG. It should be in his body by mid-morning.. If all goes well tonight, he will be released to go back home tomorrow. .

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Hi LM,

Glad it hasn't been too severe and they handled the reaction. I know when I have an elevated wbc at the same time as infusion, the infusion is rougher then usual. I think because the immunoglobulins go after the infection. Glad to hear the infusion rate is that low, probably safer for him and also why it is taking longer. You will still need to watch for post infusion reactions for the next 5 days. Hopefully the doctor will send you home with post meds to help keep that from happening. Don't forget the hydration, it is really important.

Do you know what brand of ivig they gave him? Please keep us updated.

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Hello Everyone,

Tyler is receiving 40 grams of Carimune IVIG at an infusion rate of 25. He has not had any more reactions and was able to get in a few hours of sleep last night. He is playing on an I pad to keep his mind off everything. His doctor has not came in yet. The nurse did blood work this morning to check his white blood count. Hopefully that has calmed down some. I will keep posting. Hope everyone is having a symptom free day.

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The doctor just came in and if everything continues as is, Tyler will be going home later this afternoon. The best that I can explain to everyone is that the anti neuro antibodies have been found that affect the heart and brain. Which in return has caused all the POTS and other unusal symptoms. IVIG treatment is the first step for treatment along with the Pencillan to treat the strep that has been found in his body. The mycoplasma IgM is from a past infecton but those numbers are still going to be watch closely also. Our cardiologist seems to think strep is the biggist problem since Tyler has caught Strep twice this year while being on an antibiotic. PEX may have to be used later on to clear out the antibodies in the brain if IVIG will not get this. The goal is to get the strep out, keep an eye on the the mycoplasma, and get the antibodies out of his body. Tyler's blood pressures are good and may get to go down on a lower dosage of midodrine. Let the healing Begin!

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Thanks Corina. Let the healing begin!

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Tyler was released from the hospital and we made it home safely yesterday. However, he had a delayed reaction last night. He broke out in a rash and ran a fever of 100. The doctor told us this might happen and what to do. It was gone all gone within 2 hours after giving Moltrin and benadyrl. I am letting him sleep in this morning. Hs headache did get worse and this is something that normally happens. All in all, his treatment did go much better than expected and his doctor is pleased. Tyler will be going back in 4 weeks for another one unless the allergic reactions get too bad. It is normal to have some of this to happen within a week of the treatment. His body should start to do a little better every week. Because Tyler is being given a low dosage, it may take 4 treatments before we begin to see any improvements with some of his symptoms.

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Rachel:

Wow! Tell Tyler to hang in there. You must also be exhausted. I know how stressful it is seeing your child go through such an illness. Continue to stay strong!!!

Pam

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Sounds good Rachel. I am very hopeful that this leads to relief for Tyler. And you. I think we need to send you a Mother of the year reward. Kudos for your cardiologist to stick it out with you. You have a good one there.

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Thanks Pam and Gjensen. Tyler has not had anymore reactions today but he does say that his pain levels and headache is worse. The increase is from the treatment itself and should go back to the baseline before the treatment but I'm really hoping for more. The cardiologist thought it would take at least 4 treatments before he might notice any relief from some symptoms. Tyler is the real trooper. It is so hard to watch him go through this but I know if he fully recovers, he is going to be unstopable. I'm thankful that the symptoms he has had so far have not been any worse.

Tyler's blood pressures are still staying up. He is down to 30 mg of midodrine 3 times a day and I am not having to give him salt tablets at all. It has been like this since he had the IVIG treatment and pencillan shot. He will be given this shot every three weeks for a while. He can still take his probiotic at night and eat yogert anytime of the day. So his gut should be in good shape for awhile. He is drinking the almond milk but drank regular milk at the hospital. For some reason though, he can tell a difference in how he feels. He ask me if the next time he came back to the hospital if I could bring the almond milk. The food is not the best either. We were both missing our fresh fruit. So I asked the nurse if I could bring the playmate with friut and milk. It's not a problem, so I intend to do it next time.

I was hoping the treatment could be done at home but with the very slow infusion rate this is not going to be a possibility. We were hoping for an infusion center or home health care as a possibility but none are available or near us. So it looks like his treatment will have to be done at the hospital that 3 hours away but this may be the safer way to go for right now. I wil continue working on Tyler's diet and will be adding the methyl B-12 suplement later this week. I have sent his 23 and me test results to the cardiologist.He knows that we are doing this to help Tyler from a nutritional stand point. It's not a cure but the right supplements should help Tyler's body function better.

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Glad Tyler came thru the first round relatively well. Sure hope he gets some relief with this. You BOTH deserve awards for being troopers!

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