bmom

Hi all, I am looking for ideas on how to decrease/ eliminate the nasal cogestion. We currently eliminate allergies the best we can- air purifier, vacuum frequently, etc. My son washes his nose out twice a day with a nasal wash. He did not do well on Benedryl- increased tics. I have my thoughts on Nasonex- I thought perhaps it affected him negatively. Yet, he is congested and I hate to see him suffer. Any ideas on ways to improve this? Have you been able to use the steroid nose spray without problems? Thanks.

Well, his titers always fell in the "normal" range. We test every month and they have been dropping for 4 months straight. My theory was that he got exposed, they raised to a higher level, yet still normal and are recovering. Tonsil removal was for prevention purposes and also because when the doctor looked at them he said they were really "ugly". Yes, his symptoms were gone. Only to last for a brief amount of time. Although he does wax and wane like that. I guess I just feel frustrated yet I know there is no way to tell what his symptoms will be. The doctor wrote out a script for preventative and I am going with that. I was hoping for a DeeDee story where they were gone on antibiotics.

I guess I just keep plugging away at seeing if this is PANDAS. My son had his tonsils and adnoids out and hours after giving him Amox. the tics, separation anxiety, and fears were almost gone. We finally found a specialist who said it was PANDAS and agreed to preventative. We were on day 8 of tonsil removal and antibiotic with tics and everything getting better and then now they are all back. Were we just in a wane phase? Did your PANDAS kids do this- he was exposed in March to strep and this all began again then. How could it all be gone and then back on antibiotic? He does do this with wax and wane, but it really seemed to be tied to timing the antibiotic. Did your kids just clear up completely with antibiotic? Was it a slow process with setbacks? Did they go away and come back like that while their titers were coming down?

Thank you all for the response. Your info has been valuable and I hope you all get success with your children. It sounds like most of you have found docs that are at least open to helping even though titers are normal. That is my biggest feat. My sons titers are going down and I hope that convinces someone. He has shown clear improvement on antibiotics several times. Thanks again.

Could Pandas parents give me any info that they can about their childs situation. Did antibiotics clear all symptoms? Do you also follow a clean diet? Have you done IVIG? What supplements are they taking? What tests have you done? -IGG, Etc. , Did your childs symptoms vanish or a gradual improvement? And do your children still have tic triggers-photosensitivity (this is a big one for me) or foods or anything else that your child avoids? Has any had a steroid burst? Thank you!!!

Chemar, I know you have posted this many times, but can you tell me exactly what type of L-carnitine it is-even brand, that you used to use?

My son just got his tonsils and adnoids removed. I was wondering about the tylenol with codeine. I am nervous to give him this, but he can not have ibuprofen or anything else. Has anyone's child had this done and did they do ok on the tylenol with codeine? Is there anything else he can do as he is in major pain or should I do tylenol without codeine? Any ideas or experiences welcome!!!!

I know I have contacted people about doing air quality samples in my home. It typically ran about $500. They said they would do about three to determine if there was mold. You can contact a local realtor as they should know who to call to get air samples. I remember speaking with someone who does this and he said to put 2 different air filters on the air conditioning vents (can't find in my notes which ones) and it would cut down by 90% anything that was in the air. Would it be possible to stay in a motel for a few days and maybe this would determine if it was your house or area? Or stay with a friend or relative in town? Just some ideas. I am not sure how accurate the testing from Lowe's would be.

My son has recently had a blinking tic and I had begun wondering if his glasses made it worse also. He would be ok in the morning-not great and then he would put on his glasses and things seemed to increase. I know he has light sensitivity so I would make him wear his glasses outside always as I felt light increased it and his glasses went dark. So I just couldn't figure out the answer. I know my husband who has minor tics has a neck stretching tic that happens when he wears a tie. Something about it being around his neck sets it off. Perhaps the relaxation of the bath sets of the stomach one or the position of his body. Hope that helps.

Well, my son had a day last year when he did the frequent urination thing- kept having to go. We then took him to the doctor that day and had him checked for bladder infection and strep as he was complaining of sore throat and I suspected he may be PANDAS. He was strep positive and both problems stopped with antibiotics. This time around he was sick again with fever and sore throat, but was already on antibiotics for trying to reduce tics (we are trying to determine if he is PANDAS). Took him in to hospital just to check and he was strep negative. That night I had given him probiotic because he has been on antibiotics. I am weary of giving these to him as he seems to react to probiotics badly (like PMOMs children.) After that he could not sleep that night and was up until 4:30 going back and forth every second to the bathroom. The next day tics were down and no more bathroom problems. Could it have worked on yeast that quickly? Maybe I should have him tested for yeast. His spit test always comes out fine. He said no burning or itching during peeing.

I was just wondering if the need to frequently urinate (like every second) is usually associated with PANDAS and not just tics or tourettes? Is this true or no? Thanks all who can add.

I just thought of a few things while reading your post. If you suspect PANDAS and it seems that the antibiotic has helped in the past- you said after a 10 day course tics had stopped, would your doctor be willing to do this long term, as a preventative dose? Also, I had read that itchy ears are a sign of allergy. It sounds like you have eliminated many foods, but maybe it is an allergic reaction. My son has photosensitivity as well. Causes that Claire listed as her son had this were Pyloria, high Mercury, yeast, and a deficiency in one of the B vitamins (I believe it was B2). Just things to run by your DAN doc. Anyway, I understand what you are going through. My son recently started the eye roll and something about it really alarms me.

I was just wondering if anyone has seen an increase in fish oil and stuck it out to then see a decrease? Sort of like things have to get bad before they get better kind of thing. Dr. Murphy's assistant said to stick it out and then things will die down, yet I was wondering if that has been the case for anyone or do they just switch to something else?

The study was the one that Pmom posted a little while ago. She had the link and then go down to IVIG and Pex document. It states that improvement wasn't seen for over three weeks. The good news is that is seemed like most kids only needed one treatment. I also spoke with Dr. K as a phone consult and he does IVIG. He said 80% of kids only need one treatment while others may need another. Anyway, I underlined in my doc. where it says improvement with IVIG took at least 3 weeks to see improvement.

Please keep us updated. I know that it can take a little time to work. Hope he improves!!! I was just reading a study the other day of IVIG that stated that IVIG improvement was usually not seen until at least the third week after treatment.

Faith, Is there anything that you can put your finger on as to why he is doing better? Have you eliminated other things on the IGG that would have helped? I do think the allergies in the air are starting to be reduced so maybe that is helping.

Just curious if anyone has actually had success with this. It seems everyone I have read has had increased tics. 3 people recently recommended it, but I am afraid to try it. Sheila Rogers, Caz from Bontech, and Dr. Tanya Murphy's assistant have recommended it. I ordered the Bontech ones. I am nervous to try them. Has anyone seen improvement on them?

Thanks Sarah. I am not sure that your post was for me, but if it was, I have spoken with him before and Dr. K seems very knowledgeable on PANDAS and we are considering making the trip to Chicago. The problem is that my son seems to fit PANDAS- I think yet not sure. The titers are never elevated, he never tests positive or has signs of strep. He follows the course of no tics then extreme onset though. The cultures are also negative. I am just not sure he is PANDAS. Dr. K does not believe titers have to be elevated. He will probably be the next doctor we go to if my son keeps following the pattern.

Never mind, I found it. I am going to be ordering these tests in the next few weeks. Are there any others that are highly recommended? Thanks all!

I am trying to find the place where Claire lists tests she would recommend by Phase 1 and Phase 2. Can anyone tell me where to find it on here? Thank you!!

Thanks Michelle. Any info is helpful and I am hoping they go soon!! Has your sons titers ever been elevated? My sons have not yet I had them tested 9 weeks ago when the symptom were in the beginning stages and about a week ago and they were down from where they were before-although both in the normal range. I once had him tested when he had no symptoms and they were half the amount from what they were during symptoms. Did Dr. Murphy base her treatment of him on titer levels?

I think he has photosensitivity issues because when we walk into stores the lights will set it off and he has always had trouble having his picture taken etc. His glasses he got in November so I dont think that could be it. I am just not sure that photosensitity is his only issue. I am thinking no, but plays a part.

Tami, Yes, I think my son has definate photosensitivity issues. I was just wondering as he wears glasses that go dark in the sun, would it still affect him?

I still am working on seeing if my son is PANDAS. I am having his titers tested every few weeks, but I was just wondering what the time frame of episodes last. We are now on week 11 with still quite a few symptoms. They go away for a week and then return with vengance. Does 11 weeks seem too long for a Pandas episode that was treated with antibiotics. He tested negative, me positive, but he was treated anyway to be safe.

I am starting to believe that these things also affect my son, stress and excitement. Chemar, when they are aggrivated by this, how long do they usually last in an increase? I thought that perhaps my sons ticcing increased with the stress of a tough and disappointing ball game, yet the tic increase lasted several days!