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I believe I am in the right place.


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I posted a couple of weeks ago, in a panic about my child. She is so sick and her symptoms are super bizarre. After the well intentioned replies I got, I thought I should leave this group, but after reading post from many months back and learning about the symptoms that some of your children have too. I believe that I am not alone. Some of the very odd symptoms that some of these children have are very close to my girls. I have tried a dozen meds, prescribed by the pdoc., and my child is not getting better. Actually worse. Her Cam kinase is 166.... she shows high levels of clostridia and who knows what other infections. I am going to stick with this group, if you don't mind, since I think that it is the only group that may be able to help. Although she is still very sick and her OCD is at its worse, I do see one improvement, thanks to Scott Smith, and that is that she is able to hold a conversation now and tell me what is wrong. Before he treated her for clostridia, she was not able to communitcate. This is the closest that I have come to seeing a real child inside. I am hoping that I can see some more healing. Thanks for being a great group of very concerned parents.

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Even if there is that lingering doubt in your mind, I think people can learn from this board. Even if people are coming from different starting points, different triggers, don't know the diagnosis, we all have a common bond...something is wrong with our kids and we as parents want to make them better. We can lend each other support from a standpoint of each symptom and perhaps suggestions of how to cope or overcome, each question on medicine or supplements and we all know what it's like to see the child we knew disappear.

 

In reference to this disorder, there is no cookie cutter list of things your child will have, what will get them better, how long it will take. What one experiences, another may not. So, if you are unsure, look at us at a starting point. You can still look at other boards and forums too. We won't mind:)

Edited by Vickie
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Wilma, I am glad that you are not giving up. Is she still on vancomycin? So, you do see an improvement on vancomycin?

 

I have no idea what happened or why, for my son- whether pure coincidence, or if his C. diff. infection (he had toxin A and B test that was positive) was part of the problem, (or all of it), but I can say that within 24 hours of my son being on Flagyl, and then Vancocin (vancomycin), his overnight occurence of OCD, coprolalia, hugely dilated eyes, rages, and autistic-like behavior all began to disappear as they came on, gradually going away completely in 14 days. The trick with C. diff. if that is what is being treated is to completely treat it. I had to consult researchers in hospitals who were authors of papers on C. diff. treatment regarding the process of tapering off vancomycin over a period of a couple months to avoid recolonization.

 

Anyway, I am glad that she is getting somewhat better. Is there anything else to investigate, in your opinion? What is her treatment plan now?

 

Mary

Edited by Phasmid
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Wilma -

 

I am sorry if my post about IVIG made you think you were not in the right place. I was just trying to say that you should not jump into IVIG until you know what you are dealing with.

 

I am so glad you are working with Scott Smith. Unfortunately, it takes time to figure out what is wrong with our kids and it takes time to heal.

 

I hope you went back and looked at your original post as I had mentioned a week or so ago. Keep that as your reference point. As long as you are moving forward overall... then you just keep on going with this forum!!

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Quite the contrary. The honest replies from this group makes me feel more focused and driven. I want your honesty and appreciate it. Thanks. She is still sick sick sick, but her weird psychotic thoughts are better, and she is able to talk to me now without pretending she is an animal or something. Sounds like clostridia can cause lots of pschosis. I have a long road in front of me, but at least there may be some hope now. The psch. meds ALL made her worse. Nothing helped.

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I am glad you are seeing some improvement. I will never understand how/why doctors order psych meds without checking for infection. I have nothing against psych meds when needed -I also believe that many children can benefit from psych meds in combination with meds for ifections... but how can anyone expect a child or adult to improve with psych meds if they have an infection raging that is somehow attacking their brain??

 

Your daughter is fortunate to have a Mom who is so willing to explore all the options and find the best health care professionals to help her!

Edited by kimballot
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