1tiredmama

Thanks for the perspective. What a sad, sad story.

I'm so glad to see so many responses! Maybe by sharing our experiences and putting our heads together, we can learn something new! @ lozdad, it is very easy for our kids to compound a physical problem by avoiding food. I see my son do this, at times. He loves to eat, but in a flare he is AFRAID to eat even between spells of nausea. My experience has been that doctors don't want anything to do with you once they realize that they don't know what is wrong. Zofran was a lifesaver for ds during his hospitalization. I am grateful for the prescription for home--they melt in the mouth! Good luck with your dd... @ tpotter, ds is negative for h.pylori. When he was a toddler he had c. diff. It presented as months of diarrhea. Can it present with nausea, no diarrhea? @ LLM, thank you for the link. I will read it tonight. I will also educate myself on zinc, @ lulu, I am curious to see if the abx treatment helps with the nausea. Dr. L. said that it might. I hope your dd finds complete relief soon.

I've seen some parents here mention nausea, but usually as it relates to antibiotics or other treatments for PANDAS Since ds17 is only just starting treatment, I can safely say that his stomach issues are not treatment-related. He lost 20lbs in January during a horrible flare. He improved for awhile and gained back 5lbs. But, now it's getting real bad again and it's SO hard to watch. We saw the ped today, and found that he is losing weight again, 5 lbs in probably two weeks. Our wonderful ped gave us a prescription for Zofran. Ds HAS to be able to eat so that he can take his abx and other meds. Dr. L. said that huge drops in weight in a short period of time are not unusual, as anorexia is a symptom of PANDAS. She went on to say that anorexia is not limited to anorexia nervosa. Apparently, some patients lose weight because they feel very full too soon into eating--ds has this problem also. This was the first time anyone had mentioned weight loss/anorexia related to PANDAS without the nervosa/fear/OCD part. My ds LOVES to eat. No fear there! So, I am wondering if anyone else's child has gone through flares of nausea/vomiting that were directly caused by the PANDAS condition. If so, did your doctor offer any insight into what causes this? And, did it go away once the PANDAS was under control? PS I should add that ds has already had an endoscopy, a biopsy and a sonogram--all completely normal.

Thank you for sharing my joy. Kiera, you have the right idea. I also intend to educate ds's doctors. They need to know! Mini, I'd love to know a little about your story since our kids are the same age. In particular, I am wondering how ill/impaired your dd got from going 11 years undiagnosed. Our son is extremely impaired and generally ill most days because this has gone on for so long unchecked. We wonder about his prognosis. Even Dr. L. couldn't be sure.

Thank you, Kiera and NVA Mom. I understand now. Yes, we will be at Georgetown. He will have a tonsillectomy there, too. Can that be done during the PEX stay, or do they need to be separate for recovery purposes?

My husband and I cried right there in front of the doctor today when we got the diagnosis--an answer for ds17 who has been getting progressively worse since the age of 4. Once a fairly typical, healthy child,he barely functions now, can't go to school, or learn to drive, or think clearly, or eat without feeling nauseous most meals. It's been so hard to watch helplessly all these years. Dr. L. said that he was one of the most complicated cases she's seen, and I thought that meant that she couldn't help him (because other doctors have said the same, and left it at that.) I was so scared. But, then she came out with the dx and said there is treatment. I was overjoyed. But, also, I was sad for the years of pain and suffering ds and the family have gone through. Why couldn't one of the many specialists we consulted over the years just listen to me and take the time to look for an answer for my child??? So, we left with a 3-month prescription for Augmentin, the name of a doctor to perform a tonsillectomy, and ds will have PEX once they get ins. approval. Also, in providing the doctor with family history, she said dd11 needs treatment, too. No surprise there. We loved this doctor. She was easy to talk to, and she is extremely knowledgeable. She was good with my son, too. THANK YOU to the more experienced parents on this board. You welcomed me here, encouraged me from Day 1, educated me, and helped me prepare for this visit. I even had all the right labs done ahead of time! I promise to support other parents as I move forward in this journey.

Okay. Thank you, Kiera. So, that brings me to the next question, why in the ICU?

Was there a miscommunication at the doctor's office today, or will my son spend three days in the PICU for PEX? I thought this procedure only takes a few hours.

Welcome to the forum, Wendy! I took my son to see Dr. Shafrir in February. He said my son was a "complicated" case and asked if I'd ever ruled out PANDAS. We made an appt with Dr. L. in Bethesda (3 months out.) We see her in three weeks. I'd like to ask you some questions. It is late, and I'll be driving my kids to Baltimore to see their pdoc tomorrow (after work,) so I need to get some sleep. I will send you a private message tomorrow.

You are a great mom! You are absolutely on the right track in wanting to keep your healthy child's life as "normal" as possible. My children are now 17, 14, and 11. The oldest and youngest have severe bipolar disorder (under control now--whew!) Looking back, I'm glad that I always kept the lines of communication open. My kids feel free to express their anger, frustration, embarrassment... over a sibling's behaviors. They know that they have a right to those feelings and that they will not be judged. I usually mirror their feelings. I'm also glad that DH and I carved out individual time for each child. One year, I took the healthy child on a weekend mini-vacation to a theme park. We both really needed that time away. He felt taken care of. We have great memories of our trip together. Neither of the other children has ever resented being left behind. They know that they could not have enjoyed such a trip. Choosing to laugh all through this journey was a good decision. It's better than reacting with negative emotions, and it's better than crying. One time, after a particularly harrowing evening trying to control dd (7 at the time,) during the wait for and the appt with her psychiatrist, she refused to step off the hospital elevator on the way out. Well, the doors closed and up the elevator went. I almost panicked. As the car went up, healthy ds and I could hear dd yelling, "Waaiitt, Mooommm!" Her screaming (which we were so accustomed to) grew fainter and fainter as she went up. Ds and I turned to each other and burst out laughing. What goes up, must come down, right? And, she did! I didn't have to say anything to her, she never fussed and lingered on an elevator again. Ds and I still crack up over that one. Lastly, I'm glad that I didn't care what other people thought of me or my parenting style. I refused to hide my children away at home just because other people might stare. "Let 'em stare!" I'd tell myself. Today, healthy ds is a straight "A's" honor student. He is popular, confident, and happy. Oh, and he is one of the best players on his soccer team! DD still has severe anxiety, but her life is coming together. She dances and plays soccer. There were times when I thought I had completely lost her. But, she's back. It does get better. My oldest (probably has PANS) still does not function well with Tourette's and Aspergar's symptoms, and he chooses to stay back from family outings now. Staying home wouldn't make me happy, but it makes HIM happy. With his therapist's help, I have learned to accept that. His normal is different from mine, but he is happy. Hang in there! It will get better, but it may take time. Your ds is lucky to have a mom who cares enough to see beyond her sick child.

We are having success with Carafate, an rx that coats the stomach. My ds17 lost 20lbs in January when the nausea would not let up. In the hospital, he was given Zofran and Protonix (both by IV.) Now, at home, he is taking Prilosec and Carafate. His GI could not find any reason for the nausea, so we are left to manage it. I hope you find something that works for your son. My went through three years of flares before it became serious enough for someone to really pay attention to it.

Several years ago, my bipolar dd (non-Pandas)had severe mania induced by Zoloft, another SSRI. The child I knew completely disappeared for a full year, even though we discontinued the drug immediately. Among other things, she was extremely uncooperative, unresponsive to discipline, prone to tantrums, very impulsive, and at times straight up defiant. It was a nightmare! Homework was balled up and thrown across the room. She would run through the school, and even left the building twice. She missed a lot of instruction--mostly, they tried to teach her one-on-one. Your ds could still be recovering from his reaction to Celexa. My dd's psychiatrist said that it can take up to a year. But, I think my child's case was on the extreme end. Your ds just may need a little more time. And, then, of course, he has the whole PANDAS issue complicating matters. I wish you the best in trying to tease out what is going on with him. Keep in mind, that walking around the classroom can be the result of poor impulse control--this teacher sees it every year. Mania looks like ADHD and ODD.

Aww, your poor baby! My ds17 suffers from nausea, too. After losing 20lbs in January, ds's GI put him on Carafate. It is a pink liquid taken on an empty stomach. It coats the stomach. It seems to be helping. What have you done to investigate the source of your son's issues? My son has had a sonogram, a colonoscopy and an endoscopy. Everything looks normal. He tested negative for celiac. Personally, I think my son's gut issues are neurological. I think that his brain creates the nausea. All of ds's other symptoms are neurological, so it just makes sense to me, in light of all of the normal gut findings.

Yes, I have an organized list of diagnoses and symptoms along with pertinent labs, medical records, and school documents--all in chronological order. I'm ready! This is the "History" part of my records. Bipolar Disorder (began treatment, age 7) GAD Nocturnal Enuresis (until age 16) Insomnia Sensory integration issues—sensitive to clothing, light, sounds, and food (age 3?) Intestinal Problems (age 3 - present) Joint pain/swelling (started complaining at age 3 or 4) IQ dropped 35 points (age 8) Handwriting skills deteriorate, eventually illegible (age 8 or 9) Tourette's Syndrome (age 10) Learning disabilities, not present when tested at age 8 (apparent at age 11) ADHD (age 12) (no treatment) Chronic fatigue begins—falling asleep in class, even falling to the floor (age 13) Cavus feet (seemed to develop suddenly around age 13) ADHD suddenly worsened (age 14) (treatment began) Peripheral Neuropathy (diagnosed age 14) Delayed Puberty (age 15) (treated with testosterone at age 16) Possible Undifferentiated Connective Tissue Disorder (treatment started age 16) Acid Reflux (age 16) Asperger's (diagnosed age 17) Chronic nausea resulting in weight loss and hospitalization (age 17) He is on homebound instruction due to severe anxiety, severe fatigue, and chronic nausea. He has missed most of three years of high school. He also experiences muscle pain/weakness, poor stamina, and trouble with balance and gross motor coordination. Fine motor skills are mildly impaired. He is still unable to take responsibility for self-care, such as showering, brushing his teeth, combing his hair, taking his meds, keeping a bedtime routine, and waking on his own due to a combination of forgetfulness, not wanting to be inconvenienced, and toothpaste is “disgusting.” Struggles to fit in socially, although very friendly.

This is a fascinating conversation. My ds17 is waiting to see Dr. L. for an eval. His memory is horrible. I think it is his greatest threat to living independently. As it is, we have little signs up to remind him to brush his teeth, take his meds, comb his hair... But, he forgets to look at them. When I remind him to check his morning routine sign, he still accidentally forgets to do one or two of the five simple tasks. Very frustrating. My son often forgets things like what year it is, what holiday comes in what month, his date of birth... He was a gifted child until the age of seven! Something is very wrong with my child, and I haven't been able to get anyone interested in his case! I sure do hope that Dr. L. finds him worthy of her time and attention. Thank you, Pow Pow for starting this thread. It is the first I've read about memory problems in children.

Hi, Lilly. We also use Melatonin here. It can help, but I find that it loses its effectiveness over time. That's when we use Trazadone. I trade off every year or two between the two. My dd takes 3 milligrams. It can be purchased without a prescription because it is a supplement. I must warn you, though, it has not worked for ds when his Christmas obsessions kick in. Nothing works for sleep when his obsessions are out of control. BUT... I did not know about Valerian Root! Come November, I'll have to give the combo a try. Thanks, MomWithOCDSon!

Oh. My. Goodness!!! I could never go back! I can barely tolerate anyone touching my food, let alone licking it! And sick??? Yuck! Have you tried using the "Ds's doctor said... therefore, I cannot allow..." line? Probably won't change their behavior, but it might empower you to stick to your insistence that your family's food not be touched. Reminds me of a self-centered in-law who, years ago, refused to stop chain-smoking indoors during a family holiday weekend while my 4-month old had RSV. I can understand why you needed to vent.

My first thought was seizure. But it could be a hallucination. My ds had the same kind of visual distortion years ago during a manic episode. Is anything else going on to point you in the right direction? Sick? Anxiety? Pain? Motor problems? Mood disturbances? New supplement/med? Discontinue/run out of a supplement/med? I can only imagine how scary this might be to a teen. Hopefully, it resolves itself. Let us know.

Hi, Lilly. Is your dd not sleeping again? My dd is 11 years old and weighs about 90lbs. She takes 50mgs of Trazadone about 30 minutes before bedtime. She has been taking Trazadone for YEARS, and this was the starting dose. Same for ds when he was younger. I hope this works for her. I know you've tried so many other things. Keep me posted.

Sounds like these behaviors occurred while in a manic state. Have you tried Melatonin? It is an OTC supplement. You can find it in the pharmacy. Consult your doctor for the appropriate dosage. A word of caution regarding The Amen Clinic. I considered it also; however, after researching their claims/tests, I had serious reservations about their validity. It would be an expensive risk. Do some research before you make your decision. If your ds's bloodwork comes back negative, keep testing. There are A LOT more (blood) tests that look for autoimmune disorders. Ask around on the PANDAS forum for a complete list. You don't want to rule it out based on incomplete results.

I highly recommend the book The Explosive Child. It will help you weather the storm while you are in the process of finding stability. It is an easy read with very simple, practical strategies for avoiding melt-downs.

Patric, you are absolutely right. I, too, am grateful for a chance to get my ds evaluated. Ten years ago, when my son was just seven and completely incapacitated by neuropsych symptoms, I came across PANDAS online, but it was so narrowly defined back then, and there was so little info available, I discounted it. Here we are again, full circle, only this time information abounds! This time, I could make an more informed decision regarding PANS. Thank you for sharing your good news. Stories like yours give me hope.

Norcalmom, thank you for your reply. I will look into that link. Tampicc, I don't have much to offer as my ds has not been dx'd yet. We just got his rheumy to run some bloodwork while waiting for a PANS eval in May. I can tell you this, he tics--A LOT--at its worst years ago, 1000 tics an hour! He has every PANS symptom, except OCD. I hope that you get the Myco infection cleared and that your ds's tic subside.

Hello. I just read your story. It is nearly 1 am and I'm exhausted, so I cannot reply as I would like right now. But, I did want to say that I have two children with Early Onset BP. They were each at their worst around age 7. Today they are 17 and 11 years old. The oldest also has TS and ADHD, among other dx's. So, I'm a seasoned veteran, if you will. I'll be back tomorrow, but before I go to bed, I want to say: 1. You are doing a terrific job (and, under the worst of conditions!) 2. It does get better. You may not believe it now, but it really will get better. 3. Rule out PANS. You have nothing to lose, but everything to gain, so get on it. 4. Don't beat yourself up over the need to medicate. He needs it right now so that he can function. Maybe, someday, he won't need it, but for now, he does. Question: When your ds is being aggressive, is it always fit/rage-related, or is he, at times, laughing while hitting...? One more thing: I LOVE Abilify! It put an end to some of my ds's most serious symptoms (hallucinations, violent/aggressive outbursts, paranoia.) He has been on for about 7 years (I think) with no side effects. It really helped turn things around. Maybe, it will be helpful for your boy, too. Oh, and, once he weans off of those meds you listed, what will be his first line mood stabilizer, and what will he be using for sleep?

Thank you, norcalmom! A few questions: 1. Ds was taking 100mg of Doxy twice a day. Is that low for myco? 2. How long should I wait to retest? I REALLY appreciate your help!