looneymom Posted November 16, 2015 Report Share Posted November 16, 2015 Tyler started walking with a walker last week and Today he walked in the house without using it. He has made tremendous progress. He is exercising 4 days a week and using arm and ankle weights.However, we have discovered that Tyler cannot come off his Extended Release Clonidine. We tried taking him off of it this last week and his blood pressures were high. So high that he had to skip his Midodrine dosage at night. He also stopped sleeping through the night but the worse part was some extreme OCD symptoms that he had never had before decided to show up. So the clonidine must be keeping norephrinphrne levels and dopamine levels down. We just thought it was helping with sleep but evidently it's doing much more than that. So Tyler may be HyperPots or he may have damaged dopamine receptors from the autoimmune antibodies that were caused by strep and mycoplasma infections. Here is some research about how dopamine receptors can be damaged by other illnesses. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3949352/To help calm the OCD symptoms down, I have been giving Tyler Inositol about every 4 hours during the day since last Friday. The symptoms are much better and the Inositol does not interfere with his other medications.Here is a study about Inositol and OCD.EDIT Let's try this again and see if this New link will work. http://www.ncbi.nlm.nih.gov/pubmed/9169302 Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted November 16, 2015 Report Share Posted November 16, 2015 Way to go Tyler! So happy for you and your family. I just started walking again (with walker and assistance) about a month ago and know what a big milestone it is to get to this point. Praying for your continued recovery. God bless Quote Link to comment Share on other sites More sharing options...
corina Posted November 16, 2015 Report Share Posted November 16, 2015 Wow Rachel, that is amazing. Big hats off to Tyler for working so hard!!!Btw, your last link (pubmed one) doesn't work for me, not sure if it works for others! Quote Link to comment Share on other sites More sharing options...
looneymom Posted November 16, 2015 Author Report Share Posted November 16, 2015 I fixed the link. So everyone should be able to see it. There are other articles online that explain how Inositol works in the body. It's also know B8 and was not in Tyler B complex vitamin. It acts as messenger in the brain that regulates dopamine, serotinon, and norephrinphrine levels in the body. Had I know about this supplement earlier, I would have rather used it instead of using Zoloft and the ER Clonidine. It has helped with several symptoms that popped up after I took away the Clonidine. It most likely saved us a trip to the hospital. I'm thankful that I was able to recognize the symptoms but had no idea the symptoms would come on so quickly. The research about mental health and neurotransmitters not in balance is correct. I would have never believed it until I saw it happen over night in Tyler.Here is one more article about the anti-basal gangla antibodies. The researchers have found that patients that had these antibodies in childhood and had relaspes later in life. They believe the relaspes are related to dopamine hypersensitivity of chronically damage basal ganglia neurones. If this be true, then staying on the medications that help regulate these neurotransmitters maybe the ony way of avoiding a relaspe. Here is the link to that article.http://jnnp.bmj.com/content/75/10/1478.full.pdf Quote Link to comment Share on other sites More sharing options...
Lindz Posted November 16, 2015 Report Share Posted November 16, 2015 God is so very good. Small miracles and progress every day. ) Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 16, 2015 Report Share Posted November 16, 2015 That is wonderful news! Yay for Tyler! Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 16, 2015 Report Share Posted November 16, 2015 This is so exciting! As one of Tyler ' s fan club, it just makes me smile knowing he has made such great progress. . Quote Link to comment Share on other sites More sharing options...
Nymph Posted November 16, 2015 Report Share Posted November 16, 2015 Happy for you and for Tyler! Quote Link to comment Share on other sites More sharing options...
corina Posted November 16, 2015 Report Share Posted November 16, 2015 Thanks for fixing the link Rachel! Quote Link to comment Share on other sites More sharing options...
TWynnB Posted November 17, 2015 Report Share Posted November 17, 2015 That is awesome for Tyler!I do have a question though - did you try to wean him slowly off the clonidine under doctor guidance, or just discontinue it? I've seen a lot of stories of rebound high BP of people abruptly discontinuing it. Just a thought. Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted November 17, 2015 Report Share Posted November 17, 2015 So happy for you and Tyler! That is amazing news! Quote Link to comment Share on other sites More sharing options...
looneymom Posted November 18, 2015 Author Report Share Posted November 18, 2015 TWynnBTyler was on .3 mg of ER clonidine but was weaned down a dosage every 2 months. He was sleeping through nights even at 1mg. With the symptoms that popped up so quickly, I'm thinking he may be HyperPOTS. His doctor has mentioned this to us but Tyler has never been tested. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted November 18, 2015 Report Share Posted November 18, 2015 I'm dancing for Tyler!!!! Well slow upright movements with no coordination that mimic dancing followed by sitting down and drinking water. Great news and as always... Thanks for updating us. Quote Link to comment Share on other sites More sharing options...
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