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Wilma Jenks

Is it really PANDAS with my chlld?

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my girl can sit for a little while and then she starts getting really wild and agitated. She gets really annoying and never shuts up. Starts to drop thing or stick food in your face. Really impulsive. It gets so much for her to handle that she then just sits in front of computer to try to calm herself. Her pupils also look diatlated. We have tried many psch. drugs and non work. Does this behavour look like PANDAS to you? Could this be yeast doing all of this. Just need some reasurrance.

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What medication is she on now? What meds have you used with her in last 4 months?

 

Buster

my girl can sit for a little while and then she starts getting really wild and agitated. She gets really annoying and never shuts up. Starts to drop thing or stick food in your face. Really impulsive. It gets so much for her to handle that she then just sits in front of computer to try to calm herself. Her pupils also look diatlated. We have tried many psch. drugs and non work. Does this behavour look like PANDAS to you? Could this be yeast doing all of this. Just need some reasurrance.

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Hi Wilma... sorry, I do not remember your DD's history, but that certainly sounds familiar to me. I have a DD11 with PANDAS - I am less familiar with yeast issues, but have read here that they can cause a lot of trouble. Do you have a good doc for her, who can do a thorough assessment & run any necessary tests?

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Hi Wilma,

 

I know you have been doing so much for your daughter lately since working with Dr. Trifilleti. I can tell you are desperate for answers and healing. I understand that. I am by no means an expert at any of this and have so many questions about my children's healing.

 

I would say first of all, give it all time. Healing from anything takes time. I think Dr. T is a very good doctor and very thoughtful.

 

I would also suggest doing a FULL immune system workup with someone like Dr. Bouboulis in CT. You can go to both Dr. T and Dr. B. Perhaps you will discover something about your daughter from the results. I would suggest going to Dr. Bouboulis' office to see him in person and become his regular patient because you are out that way. Having a neurologist and an immunologist could be very good for your daughter. You have to find answers.

 

You could also consider a DAN! doctor who similarly is very thorough with testing. Google DAN! doctors for your state and go from there. Search autism on google and search www.generationrescue.com for information. Even if she is not diagnosed "autistic", DAN! doctors are thorough, similar to lyme doctors.

 

A last thought I have for you is to make sure your daughter is engaged in "work" like projects and crafts etc. Much of that in your face annoyance can come from spirited children who are bored and need to be engaged, either with you or a friend or with a project. Make sure she gets outside to run and play to use some of that energy.

 

Keep searching Wilma. It sounds like you have seen some improvement. Keep digging and try to be patient and confident that you will find answers.

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thansk. where is doctor Bouboulis? in the last four or five months, we have tried: lamictal, inositol, luvox, celexa azith. seroquel. Before that: depakote, trileptal, gabapention.

 

We ever tried ton of meds for my son, including Seroquel (QuetiapineFumarate). we did not see any positive reaction when my son was on Seroquel, always showed some strange symptoms, tried dose from 12.5mg to 50mg. Also, his sleep was bad ( hard to fall asleep )at that time. He had to take other meds(sleeping pill) to help his sleep...

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CZL----What are you using for sleep? She DOES NOT get tired. At about midnight, she gets a bit tired, and that is with 25mg. Seroquel and about 6mg. of melatonin.

Lorazepam (Rola, sp?). I was scared to give it to my son every night at that time. we found Seroquel did not do anything good including for sleep, actually it bothers sleep. psych meds always add more symptoms on original symptom.

I got him OFF all the psych meds including SSRIs last August during summer break, it did not get worse, actually it is a little bit better than he was, but still struggling, terrible disease!

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