matis_mom

It could be as little as a couple of days, but if he's had it long, I wouldn't get my hopes up. I do so wish you the best on Augmentin! What dose did they give you?

Thanks for the reply. We are still pursuing PEX (and we are definitely keeping Dr. L as our main doc), but I just want to make sure there is nothing else in the picture (ie. immune deficiencies or Lyme). Good to hear your son is improving, albeit slowly! Hope to be posting soon with good news! Isabel

After our summer vacation, I'm getting back to trying to figure out the root cause of DS's problems, and I went too far in seeking alternatives! So now I have too many appointments lined up, and I need to figure out which way to go. This is the run-down: Dr. Latimer (early Sept), we've been seeing her for almost a year now, but plasmapheresis got postponed because of insurance (1 hour away) Out of network but we get reimbursed almost 90% Dr. Boubolis (late Sept), new patients there, trying to get to the bottom of the immune problem, but it's a 6 hour drive! IN Network!!! Dr. Salisbury (late Sept), immunologist at UVA, not sure if he has PANDAS experience, just going for the immune part (1 1/2 hrs) IN Network Dr. Beals (late Sept), MD/naturopath, covers Lymes and PANDAS, about 2 hrs. away, hoping will help figure out the Lyme question. Out of network, only 70% of reasonable and customary covered. And there is a local MD/naturopath someone recommended, but I haven't contact them yet. And there is the nutritionist/naturopath, who wants to take ds off on antibiotics to do a GI analysis... No insurance coverage, wants lots of out-of-pocket tests, will probably just run the food sensitivities analysis through him and then pick an MD to work with. So yes, this is NUTS. DH thinks we should just do Dr. Bouboulis, even though he is far. I still think we need someone to help us figure out if there is Lymes (does dr. Bouboulis cover that?). And what if Dr. Bouboulis wants to do IVIG? We can't go back every month. Can he prescribe to have it done locally? How is the follow up for out-of-town patients? My head is spinning, someone please help! DS is maybe functioning at 60% right now (as in 40% away from normal) after I had strep. I really do not want to do another steroid course, since he is turning 13 in October. But I see him struggling with his thoughts, spending too much time in the bathroom, and overall a bit anxious/OCDish. Isabel

We saw a nutritionist/naturopath who wants us to take ds off of antibiotics to do a GI panel. We would have to have him off for two weeks. In our case, I feel it is not worth the risk. DS feels like he is hanging by a thin thread, and I'm not ready to cut it! But I understand the idea and if you feel your child is ready, it may be worth a try. In the end, we all want to get to the bottom of this. Let us know how it goes. Isabel

Though I have my rough times, it's just good to know God is in charge. Even the tiniest microbe is under His dominion, and He has a plan for ds's life, there is a loving God behind all this. Just the other day I was thinking how easy it is to get distracted by wordly pursuits... no time for that when you are dealing with health issues! I just get very stressed out when I have to make a decision (which doctor to see, what to do, when to say when), which just brings me to prayer, which is awesome. I just wish God would spell out for me exactly what it is I am supposed to do All the best to you in your PANDAS journey, and in your faith journey!

Hi Holly, Welcome to the forum, and so sorry to hear about your daughter. Our ds12 has PANDAS and was diagnosed over a year ago. He is on Augmentin and made great progress but now we are looking at plasmapheresis as he does not seem to be able to keep his gains. What antibiotic works depends on the child, and what infections he/she may have. Also, regarding plasmapheresis vs. IVIG, it also depends on the child and what other immune issues they may have. Hopefully now with a diagnosis your daugther will make great progress. Just my from my own experience, make sure the whole family is clear of strep! That has been our biggest battle. God bless, Isabel (who just came back from noon Mass in VA

Good to know it's working without glitches... can't blame it on the generic then, huh? Better take everyone in, yet again, to check and make sure they don't have strep AGAIN!

We are on the same boat! I did get swabbed (negative) after 6 days on Augmentin plus 20 days on Biaxin. I am checking titers too to see if they are coming down (ASO was 250).

DS has been on the generic version of Augmentin XR for about three months... he has not been doing as well as on the brand name one. Although we've had our dealings with strep and that could be the reason, I wonder if others have found it just as effective as the regular one. I have an appointment coming up and I might ask the dr. to prescribe the real thing.

Also, how soon did you test? You need to give it a couple of weeks after finishing the antibiotic and then test again. I brought dd back after 10 days on abxs plus to weeks and sure enough, she came back positive. I don't think she was a carrier, as she had all the typical symptoms, but the antibiotic did not work for her.

Well, if treated successfully, they are no longer carriers. Ds14 is negative after being treated with Clindamycin. I have to get him checked again next week, just to be sure, but I think it worked at clearing him.

My non-scientific reply... A carrier is someone who harbors strep but does not become sick with it. It is not as contagious as someone with an active infection, but it's enough to set a PANDAS child off, or keep him/her from getting well. You can find a carrier by getting people checked when they are well. If someone comes back positive, that's your carrier. That was the case of our 14-yo, although I have "caught" other kids with strep and no symptoms. Hopefully the more scientifically oriented will chime in...

All I can say is, "hang in there!" Wishing you the best!

My 14-yo has been complaining of chest pain off and on. Usually it happens when he is reading in bed. The doctor suggested we try prevacid for a month because she thinks it's acid reflux (makes sense since it only happens when he is flat on his back, and usually gets better after he's been up for a while). Just a thought, maybe try to pinpoint when it happens.

Grace, I am so sorry you are going through this. I had a similar experience with my 10yo daughter (PANDAS ds is 12). She started having all these fears and anxieties after the last round of strep. And I got really worried. I asked dr. L and she said it's normal to a certain extent and it may just go away, but to keep an eye. Well, it's been a few months and she is better, definitely has good days/bad days, and always worse at night. I did the standard bloowork and nothing showed up. So I'm not going to stress about it until I see something more definite. Even if she does have it, I don't think I could get her treated simply on account of fears/mild anxiety. I have not seen any OCD or tics. So just keep an eye out and try not to stress out. Also, I would encourage you to try to find a good family doctor. We are lucky to live close to Dr. Latimer (well, 1 hour away), but we can't run to her everytime someone has a sore throat. Our pediatrician does not know much about PANDAS but she has been helpful in running bloodwork, checking for strep, etc. Especially if they are having sore throats, you need to get them (and yourself) checked, even if you have to go to CVS to do it. Keep us posted and try not to stress out too much! Enjoy your vacation

The only way to be sure is to have an ilads doctor evaluate him and to even do a trial treatment. If it is possible that your son has lyme it could be the missing link. You can skip the igenex test and go right to an ilads doctor too. Tell him you don't want to do expensive testing and see what he or she says. The full lyme panel is supposed to be the most reliable test for lyme (it costs 3 o 400 dollars). The igm and igg lyme panels (200) are much more reliable than the ones covered by insurance but even those tests can be wrong. Some people do not make antibodies to lyme so antibody testing doesn't work. Dr. Jones told me that none of the tests for lyme are totally reliable. Its a clinical diagnosis in the end and a trial treatment would tell you if it works pretty soon. What are his symptoms? His symptoms are anxiety, OCD, frequent and long bathroom trips, fatigue, headaches, joint pains, difficulty concentrating, etc. He does well with steroid tapers, but looses ground when exposed to strep. After the first steroid burst he was 99% back to normal. So on one hand, he does well with the standard PANDAS protocol, but on the other, he cannot keep his gains. I would think if it was Lyme, the joint pains and fatigue would be more constant, but they really only creep back up along with the other, more PANDAS like symptoms... It looks like we will need to go see Dr. Beals!

So I got into this long conversation with dh about what tests to do and not to do and how to proceed with DS, as he is not doing well lately. His question was, "If you do the IGENEX and it comes back negative, will you be at peace that he does NOT have Lyme?" Can anyone answer this for me? I know ds has something in the background preventing him from being 100% well, and I don't know what it is. The possibilities are endless, but our financial resources are not, and I need to be prudent as to what tests to do. Thanks so much! Isabel

I would get them tested just in case. My son (80 lbs) was on Augmentin XR twice a day and he got an ear infection when his siblings had strep/ear infections. So they shouldn't get it, but there is a slight chance that they might. It takes a few days to incubate, so maybe wait a couple of days. And yes, definitely check with dr. B, but I would go back to full strength just in case. Remember to change toothbrushes, wash hands, disinfect, etc., and get other family members tested too. Hope you feel well soon! Isabel I just wanted to add, I don't think Augmentin does anything for pneumonia, so watch out for that in your girls.

I would get them tested just in case. My son (80 lbs) was on Augmentin XR twice a day and he got an ear infection when his siblings had strep/ear infections. So they shouldn't get it, but there is a slight chance that they might. It takes a few days to incubate, so maybe wait a couple of days. And yes, definitely check with dr. B, but I would go back to full strength just in case. Remember to change toothbrushes, wash hands, disinfect, etc., and get other family members tested too. Hope you feel well soon! Isabel

Hi and welcome, I'll quickly say that your description sounds a lot like PANDAS. It seems from the history your son started early, so you probably don't have a "normal" to compare to. Has he been tested for immune deficiencies? If not, I would get that checked out. The OCD and the bedwetting are so typical I would say your best bet is to go straight to a specialist. Look at the top of the main page for a list of doctors. I understand you WANTING it to be PANDAS. We too were relieved to know all this mental stuff actually had a physiological cause. So be patient and support your child as much as you can (without feeding his OCD!), and hopefully you can get an appointment and get him on the way to recovery soon. Meanwhile I would recommend you read a book called "What to do when your child has OCD", it has been very useful for me. Even under the right treatment, you still need to work on breaking the OCD cycle. All the best and keep us posted, Isabel

That is unbelievable! Who does that psychiatrist think he is helping??? I would be so mad. But then again, everything happens for a reason. So be at peace that it was not meant to be now and hopefully soon it will happen. In the meantime, I would so write a letter to Georgetown about the whole incident. Hang in there!

I am thinking of doing this myself, but are also worried about $ and time spent in the kitchen! What I'm doing is working by way backwards by not buying certain things when they run out. My kids are pretty good eaters, but like rather plain food, so roasted chicken/beef, salad, veggies, etc, work pretty well. I'd love to hear suggestions from those who have done it/are doing it. I think your son might even gain weight on the GFCG diet. I was looking more specifically at the Specific Carbohydrate Diet. The premise is that by eating only very simple and easy to digest foods you give the gut a break and the person can actually absorb nutrients better. If you can, check out a book called "Breaking the vicious cycle" or google Specific Carbohydrate Diet. I think I will only do it with PANDAS ds because I could not afford to buy the special ingredients to make enough food for a family of 10! But if he does well, I will try to do it for everyone. We'll see...

Well, in that case, I hope your doctor is sympathetic and will give you abxs! About the tic thing, in the beginning, years ago, before we even knew about PANDAS, my son had an eye-blinking tic that would come and go. Only years later did he develop (or we noticed) the OCD. The bedwetting thing is so typical, it's just another thing to support the possibility it is PANDAS. But look on the bright side, if it is, you are catching early

Hi Robin, So sorry to hear your news! If you pediatrician is not open try getting him to an urgent care facility. You could just start the amoxicillin now but then the risk is by the time you take him in he will not test positive and then it will be hard to get him a prescription. And if you can get all family members tested too, just to make sure. To me the fact that the tics went away while on antibiotics is a very strong red flag. Let us know how it goes. Isabel

Awesome that you saw such a remarkable change with the diet! At least you know that helps, keep it up! I agree maybe you need stronger antibiotics (or switch to a different one?) And maybe just add motrin for a few days to stop the inflammation. Maybe even try to get a steroid burst? Also, even if it looks like just a cold, take him in to the doctor and make sure there is no strep or ear infection or anything else. And check all family members too. But just remain positive that yes, he can get back to normal, and yes, he will be well again. I know it sucks when you see then slide back again, but you know he can get back. Be patient and thankful for those two weeks. I've come to accept the bad times and keep fighting for good times.