looneymom Posted August 6, 2013 Report Share Posted August 6, 2013 My son saw the neurologist this last Friday. She has decided to try him on the time released version of clonidine. My son can fall asleep but wakes up several times in the night. He started on this medication last night. So the neurologist is hoping that this medication will help him stay asleep. Has anybody had good results using the clonidine this way?The neurologist also looked at my son's immune testing results that we got back. My son does have low IGA. It is below the reference range. She is concerned about this because patients with low IGA may not be a candidate for IVIG therapy. The antibodies for pneumonia are also way below the range. So my son was given the pneumonia vaccine that protects patients from getting pneumonia from strep. The strep pneumonia is know as the pneumonia 23 type. This vaccine is normally given every 5 years to protect the elderly from get this type of pneumonia. In 4 weeks my son will have another blood test to see if his body will make some antibodies against this type of pneumonia. Hopefully his body will make antibodies, if not I have found part of missing puzzle piece. My son is also being checked for PANDAS. So if his body is not making the antibodies for strep pneumonia, this could explain why he might have PANDAS if the test is positive. It will be 4 to 6 weeks before we have any answers on these test. In the meantime, the neurologist suggested that I keep home schooling my son and avoid the crowds. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 6, 2013 Report Share Posted August 6, 2013 Did you notice any change in his sleep since the clonidine last night? I've never taken it so I can't give you any info on it but I hope this seriously helps you guys. You both need abetter night sleep so he can get better. Lets hope he does make antibodies! 4-6 weeks is a long time to wait for test results for your child I imagine, so I hope the best for your son!♥ keep us updated on Tyler. Quote Link to comment Share on other sites More sharing options...
corina Posted August 6, 2013 Report Share Posted August 6, 2013 So good to hear you're starting to get answers LM! Best wishes to your son! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 7, 2013 Report Share Posted August 7, 2013 Hi there..Just wondering if the clonidine patch (catapress) has been suggested? virtually i had very few side effects from it. You change it weekly so it elimates an extra few pills!Ive come accross some of your posts since i joined and wanted to tell you that i think your son is very lucky to have you! Im sorry for the struggles you both continue to go through.. How old is your son?it does sound like his neuro is really good Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 7, 2013 Author Report Share Posted August 7, 2013 Hi Sarah,My son, Tyler, turned 13 in April. We would have tried the patch but he breaks out with any kind of tape. If you would like to read about his medical journey, it's on a blog called survivingpots.com. I started this blog a little over a year ago, hoping that it would help someone else.Rachel Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 7, 2013 Report Share Posted August 7, 2013 Rachel,I hope this will work well for your son.Keep us posted please and keep on keeping on! Tyler is lucky to have you.Alex Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted August 9, 2013 Report Share Posted August 9, 2013 Hi Rachel,I hope this type of Clonidine is more helpful for your son. I wish I could provide some feedback but I I haven't tried the timed release version. Please let us know how it works out.I'm thankful to hear that you are finally starting to get some answers and hopefully some beneficial treatment options. I so hope Tyler is able to produce those needed antibodies. Continuing with home schooling and keeping Tyler away from crowds is excellent advice from the Neurologist.Please keep us updated. You're such a wonderful mother ! Janet Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 9, 2013 Author Report Share Posted August 9, 2013 I do have some exciting news to share. Tyler only woke up a couple of times last night. So I'm thinking the extended release Clonidine must be helping. The neurologist wants me to call back in a couple of weeks and at that time she may raise Tyler's Strattera. Tyler's tremors are not the hard shaking type at this point and they are not going all day long. So it maybe that the Strattera is going to make a difference. Tyler tried doing some leg exercises the other day but the tremors just came back stronger than ever. So his body is just not able to tolerate exercise at this time.Tyler will be going to school online with K-12 in Oklahoma. My oldest son is doing this again also because he does not want to bring home in new germs to Tyler. So this mom is trying to gear up for another year of online schooling. School starts next Thursday.Rachel Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted August 10, 2013 Report Share Posted August 10, 2013 Rachel,That's great news that Tyler slept better last night. I should think he would feel somewhat better as a result. Hopefully the improvement will continue.I'm glad to hear the tremors have minimized a bit. Maybe Tyler will be better able to tolerate his exercises after the next Strattera dose increase.Best of wishes for a successful online school year. Janet Quote Link to comment Share on other sites More sharing options...
issie Posted August 10, 2013 Report Share Posted August 10, 2013 Reading about your son and the things that are going on, I think you should definitely look into mast cell activation problems. Allergy reaction to tape, tremors with exercise, problems sleeping at night with wake ups ---etc. All point to a mast cell release and reactions to such. Lots of information on the site about it.Issie Quote Link to comment Share on other sites More sharing options...
IceLizard Posted August 11, 2013 Report Share Posted August 11, 2013 I just want to warn you to be careful with Clonidine if your son has trouble with depression. I would take it at night to help me sleep, then the next day I would have symptoms of a major depressive episode. It really calmed my nerves and jumpiness so I am sorry to give it up, but the depression side effects were really severe for me. Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 11, 2013 Author Report Share Posted August 11, 2013 Thanks for the information. I will watch for signs. My son is on Zoloft also. I'm hoping this will counteract that problem. Quote Link to comment Share on other sites More sharing options...
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