wornoutmom

Can I ask how the strep was caught? Rapid test? Culture? I may be wrong but it seems like everyone is always saying the tests often come back negative if you are already on abx. So wow - was that some strong strep, or just abx resistant?

I've been really hesitant to post here - I hate to think what I write might discourage other people. But I am grieving hard and need support...DS14 had IVIG in mid June. Roughfew weeks afterwards, but started to make improvement after week 3. It was a good summer. Had a few bumps in the road. Got sick for a week with a "mystery virus" and slid backwards, but rebounded after it had run its course. The biggest improvments we saw post IVIG was a sense of calm, maturity, and new ability to verbalize his feelings (in the throws of exacerbation last year he could not finish sentences and at times was reduced to sign language to express his feelings). But mid August we started seeing some generalized anxiety creep back in and a few panic attacks. Well, the day before high school was to start (sept. 6th) he got sick. Said his ear was plugged, nose starting to run. 2nd day into school he had several panic attacks and refused to return. Added Augmentin for 10 days to his Biaxin in case this was bacterial/strep - who knows. Did better for 3-4 days then panic set in again. Little brother home sick last Thursday with sore throat and nasal stuff. Took little brother in - rapid negative strep test but put him on a z-pack as he clearly had some kind of infection. Well, Friday ds snapped. Horrible day in school. By Saturday he was slipping. Totally in his head - couldn't look at homework. Didn't get off the couch unitl 1:30. By Sunday he was gone...Spent all day either sleeping or crying or tantruming. Head banging, threw our kitchen chair and shattered it. Asked me to stab him - he doesn't want to live like a freak. Hasn't been at school this week. Now complaining he is sick - throat is sore, feels like crap. Looks HORRIBLE. We are working on getting him a reduced half day schedule at school and per all the docs (spent the day on the phone all day yesterday with the "team") have him on xanax around the clock to calm the panic and high dose Motrin for inflammation until Thurs. I am so sad for him. He was looking forward to high school and went in with such a positive attitude. Even kept on trying after things weren't going well. He feels like his life is over. Won't listen to the "this is temporary". He's depressed, ill, and the thoughts are going 80 miles an hour in his head. We actually got him to write things down on paper last night since he couldn't verbalize it. The list of things he wrote in his head is 2 pages long. I can't begin to imagine how he is dealing with that kind of brain noise. I am so sad. Don't know what to do next...

Our doc says 4-6 weeks is when you start making your own antibodies again. I have heard Dr K says 12 weeks (someone feel free to correct me if I am wrong - he is not our doc - this is just what I remember from posts) We waited 13 weeks to retest. We're STILL positive for IGG. Aaargh!!!

I agree about calling the doc. You may want to just try one at a time for now to see which med is causing the effect. I will add that when my son started on Biaxin it caused an immediate mood elevation in him. Almost manic, certainly hyper. This lasted about 3 days. I will also add that it took several weeks before we saw a more steady improvement from this drug.

ds14 has had 2 TB tests for volunteer activities. He had no problem from them whatsoever.

Lord have I been in your shoes! I just wanted to add this: find out how much Dr B would charge you to do it out of pocket. If it is more than $12,000, look into Coram infusion services. We were forced to pay out of pocket as well by Aetna (though I am still fighting like mad for reimbursement - I am no where NEAR done with them yet!!). The 2 hospital infusion centers wanted $29,800 for 1.5 gm dose (ds14 weighed 130 lbs). We found a Coram center in our home town who has a policy of pricing the drug at wholesale for those who pay out of pocket. When we actually did the infusion with them, they went further to help, and only charged us $90 a day for nursing services (which in the end came out to like $10 an hour). The bill came in at $11,500 about. That's over $18,000 dollars less!!!!!!!!! They let me put it on my credit card even. I can't tell you how great they were. They have 75 centers all over the country, so it might be possible there is one near you. I realize that's still a hefty price tag, but like you, once we got to the decision making point, I was just going to find a way to make it happen. Yes, we're in debt. But ds' renewed health has been worth it. PM me if you want more info. You are an amazing mom and do NOT deserve to come up against this BS to get your children well, but you might have more energy to fight it on the back end once they are doing better.

Let me guess...You must have Aetna!!

I'll add another voice to Melatonin being helpful. Gave 3 mg to PANDAS ds last fall when insomnia was a problem and it did help - no nightmares, just some sleep talking. Just started this week giving non-PANDAS son 1.5 mg after several weeks with difficulty falling asleep and it is working like a charm for him - he is very grateful. As I see it, it is a pretty benign thing to try...

Just me, but I wouldn't put off calling the doc for a second with these symptoms. Something about eyes scare me. On a strange note, my son has been far sighted with astygmatism since age 4. This spring after several months of abx treatment, we found his vision had improved, and his complaints that his contacts were a ll blurry was legit. He still has the astygmatism, but is not longer far-sighted...

Fixit: I have heard that the brain needs to heal for 6 months or longer. Not sure what happens during that time if there's another sickness ( I can't recall the last time ds has been healthy for 6 months in a row!) It's so hard to know if the Luvox makes things worse or not. The one time we took him off ALL meds was 2 1/2 years ago after he started having panic attacks. He definitely got worse. But who knows if that might have been withdrawl?? Or just part of the extreme exacerbation. I just heard from the psych doc who says Buspar is pretty benign with little side effect, and can be helpful as an augment to SSRI for general anxiety - but won't help with panic. Unless just turning down the volume on the general anxiety allows him to not reach panic levels at all. He's not real hopeful it will help because ds panic has specific triggers, but said it might be worth a try and if we're gonna do it do it before school starts. Oh lord - I hate all these decisions!!!!!!!!!!!!!!!!

IVIG was 12 weeks ago at 1.5 dose. He's been on Biaxin XR 1000mg since April-May for Myco P. We tried Azith for 2 days for a sinus infection in May and he went nuts. Went back on Biaxin instead and immediately (like same day) said he felt better. Been on it ever since. Have never tried Augmentin since we thought he had an allergy since a baby (got hives/rash), but had him allergy tested for Penicillin in Jan. and he was negative. Dr T was talking about trying to make sure we have the right abx for him, but we need to wait for lab results first. I'll be interested to see what it shows.

So yesterday we had our 12 week post-IVIG follow up appt. with the neurologist (the dr. who found brain inflammation via PETscan and prescribed the IVIG to treat it). I really wasn't expecting much, but somehow I was left feeling let down. Maybe it was just his manner - he's quite blunt and it never bothered me before, but this time somehow did. Long and short - we told him we felt the IVIG had been very helpful. Motor tic is gone, vocals are on sporadic and non-life interfering, rage and destructive violence gone, OCD probably subclinical (at least the compulsions), but he still has high anxiety and is experiencing panic attacks. Somehow I thought he might talk about doing another IVIG, even though he knows we paid out of pocket, and did ask how much it cost us and if it was worth it. But he didn't even suggest it. Instead, he recommended Buspar to try and get the GAD symptoms under control. And then he told me my son needed to get some self esteem and find a better therapist. This is when I began to see red. How on earth does a 14 year old boy find self esteem when his mind has been robbed from him so thoroughly. How does he feel confident when at any moment he fears his brain is going to explode all over again! If I have PTSD from all this I can only imagine how he feels!! So anyway,I'm trying to make a decision about what to do with this Buspar script. This is not a drug he has ever tried or suggested in our 8 years of riding the psychiatric merry go round. But here's the thing - he was diagnosed with GAD about 9 months before he was diagnosed with PANDAS. So I've always wondered if the GAD symptoms were really milder PANDAS symptoms that weren't diagnosed, or if he was an unfortunate kid iwth GAD who caught PANDAS. If that's the case, then perhaps the abx and IVIG have calmed down the PANDAS aspect and we are now left with the original GAD. OR...these symptoms are still PANDAS (remember he's been diagnosed for 7+ years - symptomatic for 12)symptoms that are the "last to go". Or the SSRI (Luvox CR100mg) he's still on is making the anxiety worse. Or just not helping enough....SIGH - so many options!!!!!!!! Ds starts high school next Tuesday. Part of me is thinking to try the drug this week. If any bad side effects we can take him off before school starts. Or if it's effective, maybe he'll start school with a bang. On the other hand, I hate to stir the pot and make things even worse for him as he deals with all the anticipatory anxiety. And I can't figure out if the symptoms we see are still more PANDAS symptoms or not. If they are, how would we be helping just by masking the symptoms. Our family tree is FILLED with anxiety, so for him to have inherited this would NOT be off par. We also got back in touch with Dr T last week, and he ordered a whole bunch of bloodwork to see where we are with the infection status now after 5 months of Biaxin and IVIG. We have a consult with him set for Sept 7th. after the results are done. So also not sure if we should do anything before all that blood work is done. I hate being back in all this decision making mode and really just want my son to be happy and well!!!!

Emerson - the fact that Dr G was not only willing, but took the time to consult with the ID means you have yourself in good hands! It means he's not 100% sure how to interpret or treat whatever he found and is trying to get some feedback or bounce ideas off of someone with more experience or knowledge in that certain area. I understand the waiting to hear is awful. But you can rest assured that when you do talk to Dr G he has done his homework, and you are on your way to finding some answers and feeling better!!!

I totally understand this desperation. Last fall my son was falling apart and the only improvement he would show was on a short course of abx for a sinus infection, and would tank as soon as he was off of them. I felt like a crazy woman trying to get him more drugs. I begged and pleaded with our pediatrician and our psychiatrist. You would have thought I was asking for crack. So, yes, my husband and I ordered antibiotics online from Canada. Omnicef to be specific. I was nervous to use them, in case something went wrong - how to explain to the docs how I was giving prescription drugs to my child without a prescription...I can tell you the pills looked different from the ones we were used to getting and were manufactured in India. We did not end up using them for my son, as a few weeks after they arrived we got him into an ENT, who we hadn't begged from before (new crack dealer) and gave us 60 days worth to clear his sinus infection. So we filled the American, legit script. Months down the road, we became concerned that the other members of the family might be harboring strep or myco p or some other nasty that kept our son in a state of exacerbation. We could not get a doc to test the whole family ( we asked 4 different ones!). So my hubby and I decided to break out the on-line Omnicef and treat ourselves, just in case. No ill effects. I can't speak for dh, but I actually started to feel better afterwards. So while I can't tell you what to do, I can for certain understand your considering it. The endless fight for treatment finally ended when we hooked up with a long-distance PANDAS expert, and an in-state neurologist who prescribed IVIG. If you would like names, please feel free to PM me.

Is it ok for me to be green with envy? We are still doing battle with Aetna 5 months after starting the pre-cert...We are waiting for January for my dh to have open enrollment and switch to UHC in case we need another IVIG (which is looking more and more likely these days). Thanks so much for sharing the codes - I will pass those on to our doc for certain!

Don't have a lot of time to post, but just wanted to say I am FURIOUS at what you and your daughter had to go through!!!!!!!!!!!!!!!!!!!!!!!

Kay: My son started on Biaxin XR 1000 mgs in March for positive IGGs. He is 14, 122 lbs. He did 2 shorter courses in March/April, but did not see great gains until after a steady month on it. He has been on it since April. We did IVIG in June, and decided with our dr to keep him on it for the summer to be "safe". He is not 100%, but his rages are gone, his backslides are milder and shorter, and he is having more good days than bad!

DHA is the omega 3 fatty acid that is found most concentrated in the brain and eyes. Usually, for brain issues, a higher DHA amount is recommended. The body can convert EPA to DHA, but it is not guaranteed. By supplementing with higher DHA levels you ensure that this fatty acid is available to the brain. Higher DHA levels were used for research with bipolar disorder and schizophrenia. We use Carlson's CalaDHA - 500 mg DHA/100 mg EPA per capsule (chewable, lemon flavor). Carlson's fish oil liquid also has high DHA, but my son prefers the capsules, so we do that.

My son is using Carlson's CalaDHA - chewable lemon flavor soft gel. Not truly "fish oil" but calamari oil - very high in DHA. He just chews it and spits out the gel. Doesn't mind it at all. I also use Carlson's D Drops (liquid vit d) in the winter months once stops playing outside. A caucasian person without sunscreen in a bathing suit can generate 10,000 IUs in 15 minutes on a sunny day. This is supposed to be stored in the fat to be utilized later. The heavier you are, the more it gets diluted in the fat cells, and is harder for the body to access. Also, the darker your skin, the less Vit D you generate from sun. Does any of this play in for your child? I have never had my son's levels tested, but know in general, it is recommended that you supplement 1000 IU for every 10 nanograms you want to raise your test number (i.e. if your test result was 20 - and you wanted it to be 60, you would take 4000 IU a day). But then you re-test to see if that was enough, as everyone's body uses supplements differently. I had a friend who took 4000 IU a day, and her number BARELY went up - so she has to take more.

Thanks to all for your support. Not ready to come out slugging yet - I'll get there once I get past the grief of this. He was feeling a bit better today and a bit calmer and we went out to the movies and all was ok, until he got tired and upset at home and distraught again. He is convinced he will be sick again tomorrow and he wont have any fun and the day will be ###### and his brain will torture him again. He doesn't understand why this is happening again to him when it wasn't before and there is no stress. He just wants to go back to his life, but his brain and body aren't letting him. He can't use the CBT he knows because it is too strong. He can't be convinced this isn't forever. He doesn't want more tests or more doctors. I told him we have to try to ride this out for now, until he isn't feeling sick anymore. Dr K says the bench mark for another IVIG is 2 weeks of regression, right? I know our neuro will say this would be the thing to do. But we've yet to pay off the loan on the last one! They also said to make sure to treat any illness aggressively, but how do you do that if it's a virus?? Even Lyme testing will take weeks..It's only been 4 days, but it feels like 400. I HATE THIS *&&&**&@**!!!! DISEASE!!!!!!!!!!!!!!!

Emerson: My ds14 is in the same boat you are with it never fully going away, though in younger years he was something like 95% after eradicating strep. Since puberty, he is more in your boat, even with treatments, though the treatments thus far have made the lows much much better that when he is/was untreated. And that's the thing. Treatment may never eradicate it, but it might make it more managable, so he can live his life. He did have a PET scan in March, and it did show inflammation of the Thalamus (and BG). Where are you with that doctors appointment? Why the neurologist instead of the pediatrician if you had strep? Are the physical symptoms gone now?

So point #4 - Lyme produces high Cam Kinase levels? Did she say, does Lyme also effect the d1/d2, lyso's, tubulins etc?? Asking for purely selfish reasons. We had 167 CamKinase but all normal antis. Dr Cunningham said they didn't know why the 2 didn't match at the time. Thanks so much for sharing your visit.

I know I am PMSing, and also found out my boss died suddenly yesterday, so I am not in the best frame of mind myself today. But this week marks one year to when I saw the "change" come over my son after returning from a 3 day business meeting, and his behavior this week is almost identical to last year. We did IVIG 8 weeks ago, saw some "turning back of pages", but I kept holding out hope. We saw good changes around week 3-4, though vocal tics were back and off the roof. Some trouble week 5 anticipating day soccer camp, but pushed through it and was so proud of himself for managing this "exposure" experience. He was expressing his feelings/worries so well and handling things with great maturity. Then last week, we took a family vacation to Hawaii. I was nervous about exposing him to the airplane bugs, but felt this was something really special for our family, to celebrate all we had survived through. He handled a whole lot of uncertainty around the trip with grace and humor. He loved it there and it warmed my heart for us all to be experiencing some good times finally. Dad got "Montezumas Revenge" on the last day, and Carter said he felt a twinge of it but not as bad as dad. We've been home since Saturday. He's been sleeping non-stop again. At first I thought it was jet lag,and/or post vacation let down. But it's been 5 days now and things are getting worse. Had his braces adjusted on Monday, so in some pain. He says he has been feeling horrible (back with his history of non-specific illness - fatigue, muscle soreness, and just general "malaise" that he seemed to be experiencing every 3-4 weeks during the school year). Today his face looks puffy and he has dark circles under his eyes. He's done very little but lay on the couch and sleep or watch tv the past week. And every day he is back to saying his brain is bothering him. Last night he said he thought the IVIG was going to make it all go away, but it didn't. I told him that was the best case scenario, but not necessarily the outcome, and tried to point out all the progress he has made since the winter (not raging, not destructive, not living in constant terror). But today he started yelling and crying that I wouldn't tell him what was happening (this is his biggest OCD trigger - a few weeks ago he was able to acknowledge he felt uncomfortable not being in control and needed to work on that), and even when I did he got more and more confused until he fell asleep. I attempted to wake him once and he yelled at me to leave him alone. He is still on full strength Biaxin (has been since April), takes 500 mg of DHA and Vit C daily along with probiotic, and on 100 mg Luvox CR. We have weaned him down to .125 mg Risperdal. I started the Motrin yesterday. I'm not sure what to do for him now. How long do I watch him spiral down before I declare it's more than a temporary set back? Would steroids help? We have 4 days worth in the closet...We haven't gone through with teh Igenex testing because I've been scared to take him off the Biaxin long enough to get it done accurately. I have been positive with him for many months about his disorder and recovery, but today I am feeling hopeless, helpless, discourage, and scared out of my wits for him. We have a month till high school starts. He's supposed to start drivers ed next week. If he stays like this, its going to be nothing but more pain and misery. I was so hoping things were truly turning around for him, but now I'm not so sure. My mind is going to the worst outcomes, which isn't helping him or me, but it keeps going there... My heart is breaking for him. And I'm tired - don't see how I can keep doing this...Praying this is just a sawtooth, but somehow not feeling so confident...

question: if you know your child has EBV, how do you interpret the test results? Do you assume a positive result is due to EBV infection and not lyme?