Update On Treatment

[looneymom]

My son had his 12th plamapharisis treatment yesterday. I am not seeing major changes in symptoms but small changes. Our cardiologist wanted him to start back with some physical therapy exercise and video tape it. He can do a few arm raises without tremors. When he does a leg raise, he does need help with this exercise. Instead of having the hard tremors for 20 minutes it's only last about 3 minutes. His goal is to do a leg raise without having tremors afterwards. He was started on a low dosage of Prednisone this last week and so far it has not affected his eating habits. He is much more alert and happier. He also seems to be transferring much better in and out of his wheelchair.

Tyler has some blood work this last week and every thing looks good so far. However his vitamin D is low again 17.2. Has anyone heard that fish oil will compete with this in the body. I was giving this with the vitamin D and our doctor said to give the fish oil another time. His vitamin D levels will be checked again in another couple of weeks.

Be protective of your kidos. Tyler wore a mask yesterday at the hopsital because of the respitory virus that's going around.

Edited September 9, 2014 by looneymom

[arizona girl]

Thanks for the update! This sounds somewhat hopeful. Don't know about the d and the fish oil, but it could make sense, certainly couldn't hurt to try. That is good to hear he is happy and alert, that has got to be a sign things are improving. They keeping an eye out in his blood for anemia and infection? Good idea on the mask, it's been on the news about that virus.

I get low d too. I've tried to stop taking it, only to have my numbers drop. Of course it is hard to tell if it's helping with all the other stuff going on.

I had a fungal infection and now have a bacterial one probably uti, so had a rocephin shot yesterday. The good news is that this is the first bacterial infection I've had in almost two years, which means the ivig dropped my infection rate. I'm wondering if that glabrata fungal infection converted over to a bacterial one after getting uti symptoms and not treating them. IVIG does nothing for fungal. It is so hard to figure all these things out.

I'm so glad you seem to have such a smart doctor. Hope with time the prednisone helps. Hang in there momma bear, you've done a good job watching out for your boy.

[Katybug]

I'm so glad you are seeing improvements! Even little things make a big difference when you don't feel well.

[BeforeTheMorning]

That's amazing you're seeing some improvements however small. I'm so happy for you and Tyler and I hope he continues to improve!

[Jon6945]

Glad you are seeing some improvement with Tyler. That is very encouraging. As someone else mentioned.. keep an eye out for infection and also it is a very good he is on Prednisone. You may want to keep him on it for a while after he discontinues the Plasma so you do not get any rebound antibodies and inflammation. This can sometimes happen after plasma is discontinued and prednisone will help with this. Hope you continue to see improvement. Keep us posted.

[Libby]

I haven't heard about fish oil competing with vitamin D (though I did just hear the fish oil for the cardiovascular health premise was revealed to be based on a SERIOUSLY flawed study - the investigators found a fishing town where no one was dying of heart attacks, decided that their diet must be the reason and poof! a billion dollar supplement industry was born. When really what the investigators didn't realize was that people in that town lived a hard life and died before the age when cardiovascular disease presents itself. So of course there were no heart attacks. But I digress.).

What dose of vitamin D are you giving him? I will say that my vitamin D levels are super low (I once had a score of 3) if I don't heavily supplement. It took 8 months of first 6 weeks of 50,000IU/week (prescription) followed by 10,000 IU every day to get up my level up around 80, where I wanted.

I'm sure some people will disagree with ignoring the RDA, which I think is only about 600-1,000 (though the president of the American Dermatology Association recommended 2,000 to a pale listener on Doctor Radio last week.) But I combed pubmed for info and there were a number of publications supporting a daily high dose of vitamin D. And no reported cases of vitamin D overdose. One paper speculated that months of 40,000 daily would be needed to even get close to an OD. The Vitamin D Council agrees.

A higher dose of supplement may be something to consider.

[Raisin]

So glad you gave us an update. I am also glad to hear of small improvements. Is there a chance that these small improvements might just keep on coming? Alot of small improvements over time mean a big improvement. prayers are with you and Tyler.

[looneymom]

Tyler has been taking 5000 iu of D3 every day. So I was surprised that his D had fallen this low. It will be rechecked in a few weeks. My son uses Double strenghth Omega 3 fish oil that has 600 mg of active omega 3. I get this supplement through Puritian Pride. The have really good sales on vitamins and supplements.

The small improvements should become bigger improvements. I recently found some research that a doctor did with 30 children with plasmapharisis. The kids recovered within 1-7 months after this treatment. However they recovered quicker when certain medications were given along with plasmapharisis. This is the reason why Tyler is taking predinsone. However, the doctor and I are concerned if this still may be AGG or PAF. Tyler tested negative for AGG but most kids do. It is hard to get a positive test. Tyler's symptoms also match other autoimmune diseases and plasmapharisis is lso used to treat them. So it is still possible that there is more than just one condition going on but I'm really hoping this is it. Having POTS mixed in with something else is a nightmare.

On a positive note the plamapharisis is removing the bad antibody (Cam Kinese II) from his system. His body should be making clean and good antibodies. If Tyler gets sick again and his symptoms do not increase. It is a good sign that his body is recognising the bad and has stopped producing the bad antibodies itself. If he gets worse then his immune system will have to be suppressed. I don't even want to think about this situation. The antibody that was so high will be rechecked eventually. This treatment has not made any of Tyler's other symptoms worse or added new symptoms. So I'm thinking this is a positive sign also. We just take it day by day and watch for any small changes of improvement.

[arizona girl]

This sounds really really good. Thanks for sharing the details. Sending good thoughts and prayers to tyler and the rest of your family.

[Relax86]

LooneyMom ~ You're a warrior. Kids shouldn't be able to have dysautonomias. I admire your fight for him and my heart reaches out to both of you every time you post. I am fairly recovered from a pretty terrible flare in Dec2011/Jan2012. New things creep up here and there however I function most days. There was a time that I was so sick and confused that a day like today was all I hoped for. I hope your son makes a full, 100% recovery and never looks back. xo