chubbermommy

Why it is better to have more EPA? We have Alterra Neuromega Fish Oil and it has more DHA than EPA.

Thanks for everyone's input. I have given him ibuprofen for the past 2 days (2 doses of 200mg a day) and there has been some improvement. I will continue it for one or two more days and then see what happens.

We are fairly new to this too. My DS was diagnosed this past October. I emailed his teachers with the basic information about what PANDAS is and what symptoms DS shows (motor/vocal tics). I also directed them to the pandasnetwork.org website if they wanted to read more on it. They have been super supportive. I've also told his soccer coach and dentist. His close friends and parents also know; we told the parents and I think DS himself told his close friends. He told me he said "I have PANDAS" and they all had a laugh because PANDAS is a funny name for a disorder. But they have been very helpful and understanding; he has great friends. I find that talking about his tics in front of him makes him tic a bit more at that time, but I don't really refrain from discussing it. It's a part of our lives now, we're all learning to deal with it. It is stressful, I agree; hang in there and stay strong.

Thank you. I'll go and change my signature. He's doing better this morning.

DS is in the midst of a flare and particularly bad today. He was very tired, tics going full force and his vocal tic, which on good days during this flare is usually a little squeal, became a full fledge screech/scream. So I tried giving him 200mg of ibuprofen around 3pm this afternoon. By 7:30pm, he was out of control ticcing like crazy, even worse than ever. I don't know whether to attribute this to his tiredness/anxiety or would ibuprofen affect him this way? Should I try giving him some tomorrow - does it take a few days to have an effect? I am so tired, and desperate. He was doing so well before Christmas holidays. Now everything seems to be unravelling.

Well this is day 12 of this flare and I am really tired. We will try ibuprofen today and see what happens.

Hi, sorry to jump in on this thread but I read something here - you shouldn't give a probiotic to close to the abx? What would you do in our case? DS is on abx 3x a day - so 7am when he wakes, around 1:30pm when he's home for lunch from school and around 7:30pm before bed. His probiotic says to take with a meal. Breakfast and lunch are too close to when he takes his abx. Dinner is around 6pm. Would that be time enough for the probiotics to do their thing?

Ohhhh that makes a lot of sense! Thanks! I sort of knew this, after having done salt water rinses after teeth extractions, but I didn't make this connection. I'd much rather try salt water than antibacterial stuff first.

DS' tics have been off the charts for the past week. I noticed he was cutting a new tooth (the slowest TOOTH EVER) so I was wondering if having him use an antibacterial mouthwash for a bit would help with the inflammation and bacteria? Has anyone tried this with worthwhile results? I was also reading about how dental cleanings were difficult so what about using it then? Just some thoughts.

Thanks mommy2mcl. So we did another throat swab and a blood test. Dr also prescribed an inhaler (Flovent) b/c of DS' wracking cough, which she suspects is viral but if he doesn't get better, we'll do a chest x-ray for walking pneunomia. It's so hard to say what it is since symptoms don't present themselves like they do in regular kids. Before I give him the inhaler, I'm trying to read up on steroids and PANDAS. So far, I've seen many that have had improvements when put on steroids, but are there any bad effects?

cara615, I'm glad you mentioned that about your DS - the flapping arms. I was wondering if that could still be qualified as a tic. My DS is having a flare, it's been almost a week since he developed this new tic where he's punching/windmilling/flapping his arms and kicking his legs. Sometimes he's banging into walls and furniture. Other times, he spins and jumps and comes at you like he's itching for a fight but it's all involuntary. Bizarre. Sometimes we all have a laugh because it does look like he's doing some interpretive dance moves. Just happy he is able to laugh at the situation.

Wow, I'm so glad I found this thread. I was just posting on my thread that DS has had a setback and I thought he may have picked up a virus. But a couple days ago, I noticed he was cutting a new tooth on the top but I didn't make any connection between that and his flare. His baseline is a certain frequency/severity of tics but these past two days it's like he's been going insane. Flailing windmilling arms, walking beside him after school it's like I need a shield to prevent my side from getting beat up. He's also started screaming a bit. mommy2mcl, how is DD now? It's been more than a week since you first posted. Have things calmed down? Did you give any ibuprofen?

I believe he has picked up a virus or something. No fever or achiness, but a stuffy nose and this hacking cough (no throat pain or redness). So I think that is contributing to this flare. I will ask for another throat swab to be sure when we see the Dr. on Monday. I didn't think about that, as I assumed the strep would not be present due to him being on abx constantly. About 2 months ago, I tried some Advil but there was absolutely no effect. Teri, did you DD ever have anything like Clonodine to treat the tics? Thanks for all the responses.

Thank you qannie. I will look into what joint compression therapy is. We've had a setback. Our doctor suggested changing the dosing of the abx so instead of spread over three times a day, he has it twice a day (but basically the same amount over the course of the day). We tried that, but we also went away for a few days at Christmas so our routine was totally turned upside down, we were sleeping in a hotel, eating at weird times and different food and DS was very tired (but he had a great time). So his tics returned with greater severity and frequency. Large movements, windmilling arms, kicking legs. Also developed a vocal tic unlike his one before (which was throat clearing/snorting). This time, he's doing this squealing noise. Anyways, after a week, I switched him back to abx 3x/day. So it's been 2 weeks+ since I made the switch back. His tics are still huge movements and he's still squealing. I'm tempted to give him the Clonidine he was prescribed at the very beginning (which we didn't take, in favour for the abx) along with the abx. Does anyone have any suggestions? Has anyone tried abx with tic-reducing meds at the same time? Thanks!

Hello gweny. I find it really helpful to read through everyone's stories too. DS is still on abx and doing much much better . Still tics occasionally and more when he's tired/hungry, but this, I can deal with for now. I hope you manage to get him on more amoxicillin.

Our 9 year old developed motor and vocal tics after strep. Our family dr referred us to a neurologist who diagnosed PANDAS and wanted to treat him for clonidine (for the tic) after the antibiotics (10 days) were done. We had convinced our family dr to give him an extra 10 days. After finishing the antibiotics, he got much worse. I did a lot of research, asked for help here and spoke a lot with our case worker at the hospital (who is our liaison with the neurologist) telling her that I wanted him on long term antibiotics - she was okay with that but wanted our family dr to precribe them (I think she was following the standard treatment of treat the strep, then treat the tics). Finally, I wrote a letter to my family doctor outlining DS' cycle of ups and downs in his tic severity and referenced the pandasnetwork.org website and all the cases there which show that long term antibiotics are needed. Thankfully, she agreed to have him on antibiotics for another 30 days, reassess the situation and then more abx if necessary. I found the pandasnetwork.org website really really helpful if you want some concrete evidence to show your doctor. Good luck!

We started the clonidine for a few days but since we were back on abx, I stopped them - wanted to see if the abx would help on its own. Our doctor is willing to try him on abx for 3-6 months. Is that long term enough? We go back in a month to discuss how he is doing. I'm relieved after our appointment this afternoon; I was really ready to put up a fight. I'm also giving him some omega 3 now, and I'm going to try the lemon water and epsom salts for detox, as they seem the simplest to start with.

We are only on amoxicillin but DS goes up and down in terms of tic severity too. I'm trying to figure out how to start a detox without starting too drastically.

We are back on amoxicillin. I took him to our family Dr's after hours clinic and a different doctor (ours wasn't in) gave us a prescription after reading his file and going through some PANDAS info. We did another throat swab too. We are going to push for long term abx so hoping for improvement again with this round. Our neurologist did confirm PANDAS but she does not want to prescribe abx, instead she wants to see how the clonidine will work. However, she said if we want our family dr to give him abx, then he can take both. rowingmom, from what I can understand from your signature, your daughter mainly had abx treatments? I don't know what the methyl B12, methylfolate and P-5-P are exactly - was the methyl B12 to help with the detoxing? Thanks for your input. Sometimes I'm tired of thinking and just want to do what the doctors say but I know I need to advocate for the right treatment for my son. *hugs*

I've been doing some more reading. We believe he had strep around the middle of September, and a few days later his tics began. If the ASO levels peak around 3-5 weeks after the initial infection and the anti-DNAse B 6-8 weeks after infection, then we would still be around the peak period. Since it takes a while for the antibody levels to go down, there is still a high enough level in his blood to cause the tics to be so severe, correct? I can understand needing to be on antibiotics if there is still strep or some other bacteria present. But if the strep is gone, why would we need to continue? (aside from using abx to prevent another strep infection) thanks for reading!

So we saw the pediatric neurologist on Oct 23. She confirmed PANDAS and it wasn't Sydenham's chorea. He had another blood test to check the antibody (?) levels. She said that the ticcing should gradually subside over the next couple of weeks and offered clonidine to help with the tics, if we chose to medicate him. At that time, we decided not to. He did have an improvement after that, in the next week. Finished up the antibiotics on Nov 2 and yesterday and today, his ticcing is even worse than before. Also, new actions, such as scrunching his face and closing his eyes. Now thinking about starting him on the clonidine. Should we ask for another blood test? more abx? suggestions? Thanks!

We are seeing a neurologist in 3 days. Our GP says this is beyond her scope and hopefully, we will get more help at the hospital. Wish us luck! I noticed reading on the forum that a lot of kids with PANS/PANDAS have behavioural/psychological(?) issues like OCD, etc., but DS has not exhibited any behavioural changes. It's only the ticcing. Actually I don't even know if I can call it that anymore because it's not repetitive, it's more like a jerking, spasming, dancing motion...

Thanks rowingmom and lovemylittleguy. I looked at the Lyme presentation and the only symptoms my son seems to have are the motor tics/spasms and a dry hacking cough. In everything else, he is as he was before. And we live in an suburban area and haven't been into any forests... There is a lot to process. Also, what does abx stand for?

Also, I wanted to ask, why mycoplasma and lyme? I don't think he has been exposed to lyme. Doesn't that come from ticks?

In speaking with a nurse friend of mine who started reading about PANDAS after seeing my son and hearing my thoughts about it, she told me to look into Sydenham's chorea, which I had also come across but not really looked at. The symptoms are very similar. My son has the jerking motions that are described. So now I want to ask my dr to also test for whatever to look for for Sydenham's. I've looked at the pandasnetwork website but unfortunately, when you click on the international doctors, it says 'not found' or something. We live in Ottawa, Canada. Anyone have experience with Sydenham's vs PANDAS?