tantrums

Reading up on serum sickness. Yup! Sounds exactly like what has happened. The delayed response, the low fever (when he normally will shoot right up to 104 range), joint pain, swelling and bruising. I'm scared to even attempt another antibiotic!! it says each reaction will be more severe. Last week he had a mild reaction with zithromiacin and then we rolled right into the Omnicef which was much more severe.

So we just got back from a 5 hour visit to the ER. All of a sudden, his feet turned black and blue! I mean - it looked like a car ran over his feet! Called the doctor and they said to go to the ER. It was packed and we waited a very long time. By the time we got in, they were only light blue. They think it was from him bouncing around (thank you steroids) on swollen feet all day. But then sitting waiting the broken blood vessels disbursed. Interesting thing - despite it being so packed - I cannot tell you how many doctors came in to discuss PANDAS with us. They had all of the med students come in. The students really seemed interested and were the most knowledgeable about it already. Seems like they are learning more in med school now than they used to. They also suggested I stop the steroids after tomorrow

I think that's part of our problem - fishing Well we have so many diagnosis as well including TS and of course IVIG is proven NOT to work of TS. The immune subclass wasn't enough because we don't have a proven pattern of it causing illness in him. He used to get Croup up to 12 times a year but grew out of that, which became the pandas. Since getting pandas, DS doesn't get any other illnesses for the most part. But the insurance co doesn't seem to care that the illness is attacking his brain instead of his respiratory system. I'm sure if he had continued with croup, we would've had no problem. I do know that BCBS actually has PANDAS as a clear exclusion on the policy for IVIG.

DHS - Division of Developmental Disabilities. I USED to be a DYFS worker but couldn't hack it I know they are sketchy with our insurance sometimes -what they cover and won't. I know they play games. That's why I'm very curious to see if others with our actual coverage have gotten this covered. Cadillac benefits - I think NOT!

Ha - NJ teacher - you're worse than me - social worker We should have the same insurance though if I'm not mistaken.

Melanie - Im a NJ state employee (don't slay me LOL) My DS has a subclass deficiency and they will no way no how cover this. I have BCBS NJ Direct. Does your child have a primary deficiency or subclass? Our BCBS case manager and three doctors have been willing to go to bat for us, but they will NOT approve. BCBS is huge, so their plans are all different, right?

I realized last night, I'm NOT doing the full 3 weeks of steroids. I dont' know that I ever have done that actually. I will stop them when his swelling is gone. We were in a bind and this was a regular dermatologist that we happened to be at who gave them to us last night rather than suggesting we go to the ER (It was late and other docs were closed). He's not familiar with this stuff so I don't fault him. Clearly with the swelling, he NEEDED them to some extent. Just not keen on doing 3 weeks! To add insult to injury... the doctor put an acid mixture on the molluscum last night. My poor babies skin!!!!!!

I don't have it... yet. We had to apply bc in PA all mental health services are paid for through Medicaid. They won't even accept our health insurance, which IS willing to pay. It's been over two months and we are STILL in process. My understanding is, as far as medical, they will pick up whatever our health insurance won't cover including copays. I would imagine though - a lot of the stuff we are doing for PANDAS though will still be off the table. The naturopath, supplements, etc... But if they cover the copays on other stuff, it will offset some expenses. I am also a social worker so do have experience with medicaid and what they cover generally. It is becoming less and less over the years. When I started in the field 20 years ago - medicaid paid EVERYTHING. Seems like each year they clamp down and refuse more things, dictate treatments more and outright refuse to cover a lot When the federal government instituted the medicare prescription insurance, it shut out a lot of medicaid coverages and imposed much higher copays. Also when they went to the medicaid HMOs rather than straight medicaid.

That sounds very much like what happens to DS! The swelling his joints - particularly hands and feet but also elbows and knees - leave him unable to walk or write. The reaction IS delayed. He can be on the meds a day (in the case of the Zithro) or four days (Omnicef) before this shows up and then it takes quite a while to go away. He has no fever today and the hives are somewhat improved but his foot and elbow are still swollen. I also wondered how much help the allergist could be. I don't think an oral challenge would be at all effective since the reaction is delayed. This is the SAME reaction he had to shellfish in Maine. They did skin and blood testing for all shellfish and those all showed negative.

And now he has a fever...

Well today the hives increased once again to the point of swelling of his hands AND feet. This happened when we were in Maine and he had lobster for the first time. When that happened, we ended up in the ER two nights in a row with epi shots and steroids. That was our unplanned "steroid burst" that did NOT go well at all and started to convince me he had TS rather than PANDAS. We happened to have an appt tonight with a dermatologist. It was there that I saw how swollen he was. The derm gave us 21 days of steroids! UGHHHHHHH!!! So now he is without ABX, I have raging strep and he is on steroids. I told my husband I may just be moving out! I am very concerned by this swelling with his hives. It doesnt seem right. all of the doctors we have discussed it with are alarmed as well, but none have any sort of answer for it.

My son was vomitting on Biaxin, but after I think about 3 days, he got used to it and stopped being ill. He was fine with it after that. I made sure he had a good amount of food and milk in his tummy before taking it.

He's been tested in so many ways for Lyme, I've lost track. All negative. He has an immunologist and I'll be checking with her on the med allergies. Not sure what to do at this point - if we should even try another right now. I've been taking decongestants for two weeks - have had a miserable cold that has been lingering. I think I succumbed to the strep that his friends have had. UGH! Off to bed - I feel miserable!

And to boot - my sore throat got so much worse tonight I actually looked. I have white streaks in the back of my throat! Seriously????? Well, at least I have quite the cache of ABX here. Already on them now... UGHHHHHH!!! Will check the health food store for natural ABX. But obviously not happy about DS not having any at the moment

Last week - DS7 had an allergic reaction to Zithromiacin. He is already allergic to Augmentin. Now he is apparently allergic to Omnicef too!! I'm allergic to nearly every antibiotic myself. But my reaction, as well as his, is hives. Gets worse the longer we are on them. So myself, I can do a 5 day Zpack without much of an issue. Obviously his longer term needs are becoming a huge issue with this. And each time we try any of these - the reaction gets worse. I'm probably making Dr. T crazy at this point! What else to do??? Where does one get this Olive Leaf Extract?

We stopped the GF diet after about 4 months. Suddenly, it in itself became a battle for him. He would announce he wasn't eating anything if we didn't give him gluten. I kindof laugh at that now, but really?! He has always had issues with control over food. I hadn't seen any benefit from it so I stopped it shortly after that. Didn't tell him specifically though Just eased back in. He was overall, better yesterday. I have a feeling if he hadn't started that omnicef last week, we would've been in a nightmare right now. I have a feeling that saved him. Friday night was the worst I'd seen him since his initial onset.

My son is becoming VERY aware that he is different than other kids and this is causing him a lot of distress. I think it's important to balance the risk and the benefits in cases like this. I know my son would only feel worse if he was excluded. Glad he seems to be ok! Hope it stays that way for you

Yep... and now he's perseverating on eating whipped cream and I see it brewing. Doesn't like ANYTHING else we have to eat in the house of course and can only eat the whipped cream. Fun times...

Irrational injustice is EXACTLY what it was. He wanted a third juice box and we said no. That's what started it all. It was ridiculous. Of course part of me wanted to just throw a juice box at him, but I stayed firm. When I'd go in there every time he started to seem slightly calmer, he'd tell me he wanted a juice box and when I said no - he'd start up all over again. He's on full dose Omnicef. Dr. T wanted him to start right up on full dose again since he's been off for a while. Luckily it has either covered us or this was a fluke. He woke up totally fine today. He's running around the house full of energy and happy as can be

What really stinks is ABX and spanish (yes ONLY spanish) onions were the only allergies in this house, which seemed like no big deal until recently. Now suddenly it's becoming a big issue! Will just keep up the motrin through tomorrow and hope for the best

It was clearly a reaction to the zith. I'm also allergic to just about every abx that exists, so it's not exactly a shock. He's also allergic to augmentin, so things are getting complicated here

No - he'd been on azith about 6 months ago with no problem. This time, it was the first pill that did him in. 12 hours later, he was covered in severe hives that took nearly 3 days to go away. I actually had the epi pen in my hand at one point

Funny you should ask... I gave it to him about 30 minutes ago because of him saying his head hurt. He is perking up just a little. At least he is talking and I got him to drink some juice. he's really freaking me out! He seems so clinically depressed it's frightening!

I would send him. I believe kids are contagious before they are diagnosed so there isn't too much you can do - other than have him on the ABX which you already do.

My sons best friend, who he spends nearly every day with, was at our house last weekend, when he got sick. He complained of a headache and felt warm. He gets strep a lot Turns out thats what it was. That same night - DS showed an allergy to zithromax and therefore, was off of ABX for three days while we got a new one. Last night - DS seemed "off" from the time he came home. Then he went into a tirade ending up in a hysterical crying fit lasting for nearly two hours. He was literally bawling and thrashing on the bed. Nothing I did helped. He just kept telling me to go out and leave him alone. He is SEVEN!! It was awful. I've seen rage attacks, but never anything like that. Today, he has seemed off all day - a bit depressed. The past few hours, he has just been on the couch huddled under a blanket. Now he complains of a headache. He hasn't eaten for hours except for whipped cream. He has dark circles under his eyes. When he talks its very forced. He doesn't feel warm but I can tell he is getting sick. he's been on omnicef now since tuesday - so what else would we do? I just did another major bloodwork with ASO on thursday - probably too early for ASO if he caught strep from his buddy - right? Do I assume this omnicef is enough or would a doctor give him another ABX if he has strep?