Wilma Jenks Posted May 15, 2011 Report Share Posted May 15, 2011 The family is thinking about hospitalization for our girl to be observed. We are a bit nervous because most doctors don't believe the PANDAS things. What hospital would be the best, and also...do you think there is any benefit to do a CAT SCAN...PET???? She has had the EEG, and it showed abnormal. She had the MRI, and it showed sinus infection. I pray they find something. I am wondering if I am trying to hard to fit her into the PANDAS category. She does have the CAM KINASE saying...166 and she shows high clostridia. Some of the OCD drugs may have helped a bit, but the side effects where worse than the OCD with her. She got uninhibited and wanted to run naked in the street. She is usually really shy. Has anyone gone the hospital route???? Also, I would love to reach out to doctors that deal with really though cases. Do you know of any??? Link to comment Share on other sites More sharing options...
Tamistwins Posted May 15, 2011 Report Share Posted May 15, 2011 Wilma I am so sorry for all your troubles. I pray your child gets well soon. Please email me tamistwins@gmail.com Tami Link to comment Share on other sites More sharing options...
Wilma Jenks Posted May 15, 2011 Author Report Share Posted May 15, 2011 thanks. i will. Link to comment Share on other sites More sharing options...
Iowadawn Posted May 15, 2011 Report Share Posted May 15, 2011 When you have a child that is as ill and as difficult to treat as your daughter (Our son has been incredibly difficult--He has runout in the street egging on a school bus to run him over) finding a good child psychiatrist who gets PANDAS or symptoms with infectious etiologies I believe is the one thing that has saved us and our son. It is crucial the doc is willing to communicate with the doctor that is treating the infectious aspect of your daughter's condition. Knowing we have a place to hospitalize our son during crisis or to be stabalized is comforting if it becomes necessary. I would wager that the younger psychiatrists are aware of these conditions. I think they are also more willing to think outside the box. It may just mean you pick up the phone and start calling and asking what the doc's comfort level is with PANDAS dx. It has NOT been perfect for us--but we are convinced with what we have endured our son would not be in our care without the care & backing & the availabilty of inpatient care. Now that we are in the thick of lyme treatment and the wild ride this has taken us on, it has become even more crucial. I know others will weigh in differently. This has been our experience. I honestly wish we would have thrown in the towel sooner & sought ought psychiatrist, as he was the one that connected the dots for my son and found the infectious component to his problems. He just said the other day that he has treated 1000's of kids and our ds12 is one of the top 3 or so diffiicult & complex cases he has had. I don't know if this helps. PM me if you would like. (((Hugs, 'cuz I get it))) Dawn Link to comment Share on other sites More sharing options...
kimballot Posted May 15, 2011 Report Share Posted May 15, 2011 The family is thinking about hospitalization for our girl to be observed. We are a bit nervous because most doctors don't believe the PANDAS things. What hospital would be the best, and also...do you think there is any benefit to do a CAT SCAN...PET???? She has had the EEG, and it showed abnormal. She had the MRI, and it showed sinus infection. I pray they find something. I am wondering if I am trying to hard to fit her into the PANDAS category. She does have the CAM KINASE saying...166 and she shows high clostridia. Some of the OCD drugs may have helped a bit, but the side effects where worse than the OCD with her. She got uninhibited and wanted to run naked in the street. She is usually really shy. Has anyone gone the hospital route???? Also, I would love to reach out to doctors that deal with really though cases. Do you know of any??? We had to hospitalize our son recently because he was unsafe. It was very crazy at first as I explained his condition to the psychiatrist and it was difficult to answer all of their questions because his history was so very long and it was easy for them to jump to an assumption that I was an anxious Mom who could not control her rebellious son and was grasping at straws. I just went in saying "this is what I know about my son.... and this is what I do not know about my son.... I need help". It was difficult to have him hospitalized, but it kept him safe while his brain healed. It also helped me link up with community agencies that can support my son as he recovers (he is now 3 months post IVIG and is improving each week). I agree that it is important to get a doctor who is at least willing to entertain the idea of PANDAS and is willing to work with specialists. Unfortunately, PANDAS -literate psychiatrists are few and far between. Link to comment Share on other sites More sharing options...
tpotter Posted May 15, 2011 Report Share Posted May 15, 2011 If you are dealing with abnormal eeg, have you spoken with a neurologist about seizure meds? Also, you mentioned that she has a sinus infection. What is being done to make sure that is eradicated? Those 2 things can make a world of difference. If you need a PANDAS literate peds. neurologist, you might want to consider getting an appointment with Dr. L. She can be hard to get hold of at times, but she is back to taking new patients, and if you are possibly dealing with seizures, it might help to have both neuro and immuno working for her (many of us see more than one doctor...we are one of those families.) BTW, my DS15 has abnormal brain waves...behaviors have not shown up has causing them, so it doesn't appear to be epilepsy, BUT, the anticonvulscents have helped him. Link to comment Share on other sites More sharing options...
Wilma Jenks Posted May 15, 2011 Author Report Share Posted May 15, 2011 my girl is on lamictal for seizures, but a super low dose. can't get high ones into her. the nuero. said her behavouirs are NOT linked to seizures. Link to comment Share on other sites More sharing options...
Wilma Jenks Posted May 15, 2011 Author Report Share Posted May 15, 2011 What do they do to eradicate sinus infection? You would never know she has one, other than the MRI. She has never had a cold or even sniffled. Would you do anything just cause it shows a sinus infection on the MRI? Link to comment Share on other sites More sharing options...
kimballot Posted May 15, 2011 Report Share Posted May 15, 2011 What do they do to eradicate sinus infection? You would never know she has one, other than the MRI. She has never had a cold or even sniffled. Would you do anything just cause it shows a sinus infection on the MRI? Wilma - YES you need to get rid of the sinus infection. Any infection or inflammation can trigger PANDAS and my son has always had sinusitis as his PANDAS/PITAND trigger. Even when we don't see drainage, if his sinuses are inflamed he has behavioral changes. Antiobiotics are one thing that are needed for sinus infections, but they are very slow to reach the sinuses. Did the doctors give you other things for sinuses like nasal spray, mucinex, or allergy medicines? These things help to decrease the inflammation and also to make the mucus thinner so it doesn't get clogged up in the sinuses. When the passages are wider and the mucus is thinner, the mucus can drain and air can enter the sinuses - this makes it harder for the bacteria to grow and helps to get rid of the infection. Link to comment Share on other sites More sharing options...
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