HURRY UP AND WAIT

[bubbasmom]

HURRY UP AND WAIT!!!! When your kid has fits of rage on PANDAS this whole waiting game pretty much sucks!! I know the whole REST of the world thinks that this mom can just put up with this and wait it out. No, I can't, we can't, the whole family can't. So they stick the kids on antibiotics and maybe some Respadryl and say GOOD LUCK!!

Dr. K, very nice very helpful, very BOOKED UP till Halloween. Pediatrician, very nice, very helpful, but reminded me I'm not his only patient and that there's a swine flu epidemic. Guess what, my kid is sicker than any kid with swine flu! My son has a life threatening illness, because he threatened his own life when he had a fit of rage, so if you're going to prioritize your patients you can just move my kid right on up to the top right underneath the cancer patient and the HIV patient (thank God we're not there).

Then I read of these people getting more than one treatment of IVIG. I thought that was supposed to be a permanent fix. If it's not a permanent fix how are all of you paying that much money all of the time. I'm assuming most of you are one income families. We are because I can't get a job. (Every job I've ever gotten I've had to quit because of my son.)

 

LOSING FAITH AND LOSING IT FAST!

[Kayanne]

I'm sorry your having such a hard time.

 

Is there any possiblility that your pediatrican would prescribe some prednisone? It may give you some relief right now.

 

I read your other posts, and I saw that you went to Dr. K on Monday. Did he schedule you for IVIG around Halloween? Did he mention his use of the 5 day steroid burst to help determine if IVIG will be effective?

 

He usually prescribes a 5 day "steriod burst" to see if a PANDAS child will improve. This helps him to determine if it is in fact PANDAS. Because PANDAS is an autoimmune issue, then prednisone should suppress the immune system to lessen or stop the PANDAS behaviors.

 

Dr. Latimer (DC area) has prescribed prednisone for a month for cases that are mild/moderate. She usees it as a theraputic tool to help suppress the immune system, and to address the brain inflammation in the Basal Ganglia. For my dd6, it worked very well.

 

I took your quote from another thread:

 

My son had this two years ago, we did Keflex, then he still had a positive culture, then PenVK, still had a positive culture, finally back to Keflex and within 24 hours of the next round of Keflex this whole PANDAS episode was over like it started.

 

If this current episode is only his second, then he may benefit from a course of prednisone. However, if you are scheduled for IVIG, then a month long course is probably not called for.

 

Once your son makes it through this crisis, do everything in your power to keep him on a prophylactic dose of antibiotics...this is like Rhuematic fever, it just effects the brain instead of the heart and joints. The PROVEN treatment protocol for RF is long term preventative antibiotics.

 

Also, get everyone in your house tested for strep ASAP.

 

As far as IVIG being a permanat fix for PANDAS, I personally don't think that it is. I don't believe that there is a cure, just very good ways to manage it---but i hope that my opinion is changed soon because it seems a lot of new ground is being covered with the immunology end of this disorder.

 

Many parents are recieving multiple IVIG treatments because they have gotten a diagnosis of an immune deficiency, which is recognized by the insurance companies. Some of their doctors are telling them that when the treatments are completed, their immunue systems will be normal, and therefore the problem will be fixed...I am hoping this is true.

 

An immunological workup will show if there is an immune deficiency.

[bubbasmom]

Unfortunatley my son cannot take steroids! Makes him nuts - isn't that ironic! But makes me nuts too. Crabby to say the least. So Dr. K decided not to do that. We are not yet scheduled for the IVIG because if I do it in Chicago positively nothing is covered under my insurance ( under out of net benefits I have $2,500 deductable then 50% coverage after that). So I'm trying to hold out for this St. Louis doctor to do the procedure. He IS on my insurance so at least his fees are covered, the facility is on my insurance so that's covered, and it will save me a 5 1/2 hour drive each way alone with my son because my husband can't take off work for it.

So it truly is the waiting game. They have him on all the meds he can be on for right now - Zithro 500mg, Respedryl for the anger, Melatonin for the sleep disorder, and we're homebound at school trying to keep him from flunking 7th grade.

So here I sit. And I sit and sit. I wait for that phone to ring like I'm waiting for my first date! I watch my son like he's a toddler.

And yes, BOTH of my daughters are on antibiotics for strep right now. Coincidental, nobody is a carrier, its just going around. One's on Zithro, one's on Keflex cause she's allergic to Zithro. I will need to wait a couple more days to get them recultured.

 

As far as second episode. This is the second episode, how shall I say - that has been our AH HA moments. He's had other times and we just thought he was crabby. I always said, 'Antibiotics makes him crabby' well the only time he's ever been on antibiotics is for strep! DUH! In talking to Dr. K, we actually can trace things back to very young. He had 9 strep infections the first 18 months of life. By the time he was 3 1/2 I just thought he 'had an attitude'. I always said, If people think 2 is bad wait till they turn 4. Well, I look back now at all the strep he had and we've just always justified it.

 

That's the urgency with PANDAS, doctors are SOOOOO uneducated and make us parents feel like we're the stupid ones. No, they are. At least we have figured this out. And everyone of us is having to play doctor!

Thanks for your advice. I'm hoping by Monday I have great news and we are well on our way into this. But if IVIG is not a permanent fix, then that's really going to be a bummer. Do they truly outgrow this?

 

I'm sorry your having such a hard time.

 

Is there any possiblility that your pediatrican would prescribe some prednisone? It may give you some relief right now.

 

I read your other posts, and I saw that you went to Dr. K on Monday. Did he schedule you for IVIG around Halloween? Did he mention his use of the 5 day steroid burst to help determine if IVIG will be effective?

 

He usually prescribes a 5 day "steriod burst" to see if a PANDAS child will improve. This helps him to determine if it is in fact PANDAS. Because PANDAS is an autoimmune issue, then prednisone should suppress the immune system to lessen or stop the PANDAS behaviors.

 

Dr. Latimer (DC area) has prescribed prednisone for a month for cases that are mild/moderate. She usees it as a theraputic tool to help suppress the immune system, and to address the brain inflammation in the Basal Ganglia. For my dd6, it worked very well.

 

I took your quote from another thread:

 

My son had this two years ago, we did Keflex, then he still had a positive culture, then PenVK, still had a positive culture, finally back to Keflex and within 24 hours of the next round of Keflex this whole PANDAS episode was over like it started.

 

If this current episode is only his second, then he may benefit from a course of prednisone. However, if you are scheduled for IVIG, then a month long course is probably not called for.

 

Once your son makes it through this crisis, do everything in your power to keep him on a prophylactic dose of antibiotics...this is like Rhuematic fever, it just effects the brain instead of the heart and joints. The PROVEN treatment protocol for RF is long term preventative antibiotics.

 

Also, get everyone in your house tested for strep ASAP.

 

As far as IVIG being a permanat fix for PANDAS, I personally don't think that it is. I don't believe that there is a cure, just very good ways to manage it---but i hope that my opinion is changed soon because it seems a lot of new ground is being covered with the immunology end of this disorder.

 

Many parents are recieving multiple IVIG treatments because they have gotten a diagnosis of an immune deficiency, which is recognized by the insurance companies. Some of their doctors are telling them that when the treatments are completed, their immunue systems will be normal, and therefore the problem will be fixed...I am hoping this is true.

 

An immunological workup will show if there is an immune deficiency.

[sf_mom]

Its unfortunate but 'vigilance' along with IVIG/PEX and prophylactic antibiotics is more likely the cure for now. Is the Dr. in your area a immunologists and have you investigate the underlying issues? If not I would also suggest you start down that path immediately as monthly IVIG might be more of a resolution after initial treatment.

 

BUT, we saw a huge improvement after the initial treatment with Dr. K. We are four weeks post and he is almost symptom free but are not ruling out additional IVIG to boost immune system if required.

 

There is hope... Hang in there.

[KeithandElizabeth]

I am so sorry you are going through so much pain!!! I have felt so many of those same feeling as I called doctor upon doctor and no one could help us!

 

I went to an immunologist to get treatment and because of our failed S. Pneumonaie titers, our insurance is covering 100% percent of the treatment. This may be one reason for you to go to an immunologist - to see if you can get it covered by insurance.

 

Some short term things we did to decrease inflammation was mega doses of calcium (which is anti-inflammatory) My son who is only 50 pounds took 2000 mg. of calcium a day every single day. We also gave him motrin at a prescription dose. He really didn't have any rages while on these daily doses, but it didn't stop his other PANDA symptoms.

 

We are all here if you need to vent some more!!!

 

Elizabeth

[EAMom]

And yes, BOTH of my daughters are on antibiotics for strep right now. Coincidental, nobody is a carrier, its just going around. One's on Zithro, one's on Keflex cause she's allergic to Zithro. I will need to wait a couple more days to get them recultured.

 

If your dd's also get strep a lot it would be worthwhile to consider putting them one long term antibiotics (at least until your son is 1 year post IVIG or past- puberty) so you to help keep strep out of the household/help prevent a relapse and need to repeat IVIG. DCmom says she knows a family from the original Swedo study that did this.

 

Also, do culture the girls in a couple of days, but culture again in 3-4 weeks to make sure they are still neg (since recent abs could result in a false neg culture.)