missjo

What blood test do they use for Hashimotos and what would blood results look like? Above or below reference range?

I completely understand having to be the doctor for your child. I fell like the doctors just look at the surface and neglect to look at the whole picture in detail. What are your daughters thyroid test levels? I want to ask my sons docs about secondary hypothyroidism because his t4 free is a little low and TSH is pm the low end of normal.

My sons latest PANDAS episode. Beginning of Oct.HD IVIG seem to do well for 6 weeks Things got bad middle Nov. he began throwing up everything although not feeling sick. On augmentin but because he was throwing up everything, antibiotics weren't staying down. beginning Dec. Lower dose IVIG 1G/KG no improvement (I think lower dose was mistake with communication between Docs, dont think it was suppose to be low) changed to Clinomycin but still not able to keep it down. hospitalized put on iv clindo during hos. stay oral Clindo at home able to keep it down long enough to get absorbed. End December HD IVIG with in 48 hours he started keeping most food and liquids down. Doing well keeping most everything down from Jan 1-17 motor tics low. January 16 finished Clindo restarted Augmentin. He has begun to slide downward over the last three days. Starting to throw up more, tics increasing He has not been in school since Thanksgiving so exposure has been lower but of course still around people. He will be getting HD IVIG again next Thursday and Friday. Any thoughts on what else we could be doing or do differently? Has anyone added steroids to IVIG? We have used Iuprofen with some success but never used steroids. Do you think switching from Clindo to Augmentin would cause decline? Did the IVIG began to wear off? I am just thinking out loud and hoped to hear anyone elses thoughts. Thanks

We went with a high deductible 3000 per person with a 4000 maximum out of pocket per person or 8000 total for the family. It saved us about 500 per month in premiums over a copay type plan. One IVIG for our son and he had reached max so everything else was free. The copay type insurance would have cost us 6000 more per month in premiums and would have cost us more in copays and percentages. So as long as our son is getting IVIG the high deductible plan would save us. Disclaimer!!! When we began this plan we did not know our son would need IVIG so our premiums, while rated, where not rated at the highest level. i am scared to see the renewal rate come April.

Thanks to everyone. Yes we are planning to continue HD IVIG for a few more months. Has anyone done HD every four weeks for months? I know his first HD IVIG seem to wear off at about six weeks. Melissa

Thanks to everyone. Yes we are planning to continue HD IVIG for a few more months. Has anyone done HD every four weeks for months? I know his first HD IVIG seem to wear off at about six weeks. Melissa

I hope I am not speaking too soon. I will give a quick recap. Our 16YO son began seeing Dr. L in July 2011 when she confirmed PANDAS and started antibiotics. After a couple months on antibiotics and only little improvements she felt because of his age and length of time he had PANDAS (15 years) that the next step was IVIG. HD IVIG 2grams per KG over two days in October for typical PANDAS symptoms (tics, OCD, ADD, bed wetting etc). No vomiting at this time. We saw some improvement for about 6 weeks. Bed wetting disappeared and has not reappeared since. Middle of November he began vomiting everything, even water as soon as he would take it in. The vomiting was involuntary with no pain or nausea. He would just walk around and up it would come. He felt fine otherwise. He has always had OCD with healthy food and his weight, with a diagnosis of anorexia at one point. He has had the involuntary vomiting once before but not nearly as bad. Back to Dr. L December 1st. December 2 and 5th lower dose IVIG at 1 Gram per KG over 2 days. I am guessing the lower dose because we are going to do IVIG every 4 weeks for 6 months. Did not seem to help at all. December 6th admitted to hospital by Gastroenterology for dehydration and to investigate what was going on. All test showed nothing. They inserted an NG tube and sent him home after five days. Still vomiting everything but the NG feeds of Ensure at night stayed down. He continued on Clindomycin. His vomiting was not getting better. The Ensure he was getting with the NG tube was all that was keeping him alive. Around Christmas he began to keep very very small amounts down. A little progress but not much. He had not been to school since Thanksgiving and is on homebound. December 29 and 30th HD IVIG at 2grams per Kg over two days. January 1st he started to keep almost everything down and started eating more. As of today he is eating normally and everything is staying down. It seems like the switch has been turned back in the right direction within 36 hours of HD IVIG. Dr. L had reassured us and all of the medical professionals that were working to figure out what was wrong with our son, that as soon as we got whatever infection that triggered this PANDAS exacerbation under control and did the IVIGs that he would be fine. We all had a hard time believing that he would wake up one day and be fine. As of today I am proclaiming that the "IVIG WAS A MIRACLE AND DR. L WAS RIGHT" Dr. L was collaborating with our local gastro Doc, kidney Doc and pediatrician. They all had little knowledge of PANDAS but were amazing in their efforts to understand PANDAS and try whatever Dr. L recommended. We were blessed to finally find such amazing doctors that are willing to accept that PANDAS exist and learn how to treat it. My family has been dealing with PANDAS since our oldest who is now 21 was 2 and this is the first time any of our local doctors have been willing to accept that PANDAS is real and that antidepressants are not the answers. My kids were treated with antidepressants and every other psychiatric medication for most of their lives. I tried for the last 10 years to convince the Drs. that strep seemed to be the culprit of the kids problems, but the local neurologist's insisted it was Tourettes Syndrome, OCD, ADD etc. and that these strong meds were the only answer. Praying that he continues to keep everything down and can return to school soon. Melissa

My non PANDAS son always has RBC in urine with no cause. Nephrologist says some kids just do, it has a name but I cant recall. The doctor said it could be calcium crystals in urine cause small cuts in kidneys and sometimes this causes kidney stones later in life. My son is 18 and has had RBC in urine for as long as I can remember. My PANDAS kids and myself have sugar in our urine when we are sick. It is called genetic glucourea(or something like that). Our blood glucose is always fine but kidneys spill sugar when we are sick.

Sorry to hear about your daughters struggles. It is heart breaking to watch them struggle. My 16 YO son is suffering with involuntary vomiting of everything. It has been bad for 4 weeks now. He was hospitalized for 5 days while they looked at every possible cause and they placed a NG tube . The only cause they can come up with is eating disorder because of PANDAS. Involuntary vomiting is not typical eating disorder but with his history of Anorexia they feel this must be related. He is doing NG feeds for 10 hours at night and their goal is 1500 calories of Ensure each feed. He can hold down the NG feeds. He had HD IVIG the beginning of October (before this bout started) it did seem to help with other PANDAS issues. He had a LD IVIG first of December after this episode had started but we have seen no improvements at all. He is on 300MG Clindomycin 3X a day. The current plan is to do LD IVIG every four weeks for 6 months. If there is no improvement soon he will probably end up in inpatient care. We are in Southeastern VA. Were are you? How old is your daughter? PANDAS Sucks! Melissa

How old is your son? When do you feel he first developed Pandas?

He had this same bout of throwing up last year from February-July bad it was not as severe. GI ran all sorts of test and everything was normal. When it stopped in July we forgot about it and stopped looking for answers. He had his first IVIG in early October 2011 but the throwing up wasent an issue at the time. We saw improvement in other areas for about six weeks. In mid November he began some throwing up but not severe until Tuesday November 29 it become every drop of water and bit of food. Thursday we saw PANDAS doc and had IVIG Friday and Monday but by Tuesday he had to be hospitalized. We will continue antibiotics, IVIG monthly, but i feel we need to add eating disorder treatment. They let him out of hospital because he told them he was not throwing up at all, but once home he admitted he threw up twice yesterday and I know he has thrown up twice since we got home 4 hours ago.

My son had anesthesia this week and so far I don't see any negative side effects. I did tell them no Nitro-us oxide. he woke up complaining of a head ache and was not himself angry and cursing, but within two hours he settled down and has been fine since.

Thanks for the thoughts! They have sent biopsies in but do not have results. Nothing looked unusual with the GI scan but they sent biopsies anyway. They do not think there is any kind of bacteria or infection. They really aren't giving any diagnosis. But because he is keeping food down they have sent him home. He will be getting night feeds with an NG tube and eating what he can during the day. They will evaluate him next week to make sure he is maintaining weight. What scares me is he has forced himself to vomit in the past to lose weight and even though it is involuntary now can he make it stop? Would normal eating disorder counseling help? I have looked up rumination syndrome online and he fits that very well. I have called two hospitals that treat rumination and left messages. We have been told by PANDAS doc that it is all from PANDAS and that once the IVIG and antibiotics do their job he will be fine and psychological counseling isn't needed. I would love for treatment to kick in and he wake up one day and be perfectly fine. I trust our PANDAS doc but with his history of eating disorder and OCD with food that sounds to good to be true.

My 16YO PANDAS son has been hospitalized since Tuesday because of dehydration and weight loss. He has been throwing up everything even water for 11days. This is not stomach virus throwing up. It is more as soon as it goes in it comes back involuntarily. They cannot find any physical reason after all of the testing. The only conclusion is that it is mental because of the PANDAS as he has had eating OCD's in the past. We went to DR. L last week and had immediate IVIG and changed antibiotics. Unfortunately we have not been able to speak to her since. All of his treatment has been directed by a GI doctor at our local hospital in Southeastern VA. They have inserted a NG Tube and are feeding him Pediasure. When he work up from anethesia yesterday with a feeding tube he hated it, got mad and said I will not let anything I eat or drink come back out of my mouth, has been able to keep food and water from physically coming out of his mouth by concentrating on each bite and reswallowing anything that does come up. This keeping the food-in seems more defiant than determination to get better. He wants to go home and wants NG tube out and he knows they only way is to show them he can keep food down. They are planning on sending him home tomorrow with NG feeds. My worry is he will stop holding the food down and return to letting it out, once we get out of the hospital. Does anyone have any thoughts on Rumination Syndrome I have lots of calls into eating disorder people but its Friday. It is hard to find a eating disorder person who knows anything about PANDAS. I don't know where to turn. We are in Southeastern VA if that helps. Thanks Melissa

Dont have any answers but we are dealing with anorexia also. My son is 16 he is not under weight and eats some. His problem is OCD with food he thinks about it constantly. He had a nine month bout of throwing up constantly last year. He is just walking around and throws up what seems like involuntarily. He had IVIG in October and said he thought he felt less concerned about food after it. Now the throwing up has returned. Many doctors have ran test and cant find a physical reason for the vomiting. PANDAS Sucks! Melissa

Praying for Danny. I'm following his progress. My son is 16 has had one HD IVIG but PEX may be in our future. Please tell your son his experience this week will help others. Bless you both. Melissa

My 21 year old daughter was diagnosed with PANDAS in 2010 by DR. T although I have known for 10 years that is what she had, but none of her doctors would listen to me. My problem is she will not stick to any of the treatments. She will start taking antibiotics for a few days and then stops because she says its not working. She also has very low Feretin and will buy the iron and then dosent take it. She was on meds most of her life for ocd,anxiety, motor tics, ADD, etc. and I always made her take it until she was 18. Wished I had known then that those meds were not what she needed but i was following the doctors orders. She says she took meds all of her life and now she hates taking them. She complains about the anxiety, OCD and tics but isnt willing to do anything about it. She has had PANDAS since the age of two so she dosent know that she can feel better, this is what is normal to her. She is in the medical field so logically she knows its not normal but still lacks motivation to stick to treatment. I am scared that if she dosent get treatment now the damage will be permanent (if it isnt already). I cant spend anymore money taking her to other doctors when she will not take the meds. She lives on her own which makes it even harder. She has ask me a few times to go with her to her doctor, I go with her and explain her PANDAS. The doctor is great he will give her what ever I tell him she needs (OUR 16 YO with PANDAS goes to doctor L so I know the protocol to ask for). Just when I think she may be motivated enough to take her meds she stops taking them again. The normal waxing and waning of symptoms she had growing is becoming more constant symptoms now. She works in an EMT in an ER so she is with very sick people every day and seems to always catch something. I do think if she could get IV antibiotics she would stick with that (she would think thats cool, she loves all the medical stuff) but I dont know how we would get that prescribed or insurance to pay for it. I think she would do IVIG (because that would be cool too) if her insurance would pay for it. Sorry for the rambling. Any advice would be great.

My 16 Yo son had 2g/kg over two days. They began infusing at a rate that would take about 4 hours per day, but about an hour and half in he had VERY SUDDEN(one minute fine, started coughing and within one minute struggling for breath) breathing difficulty so they stopped gave him a breathing treatment, more benadryl and waited about 30 minutes. His breathing recovered quickly but they had to decrease infusion rate to about 6 hours. Day two was also done slowly. I dont think he would have done well if they had tried to do it all in one day. He had no history of asthma or other breathing problems.